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PATIENT- AND FAMILY-REPORTED EXPERIENCE AND OUTCOME MEASURES
FOR USE IN ACUTE CARE: A KNOWLEDGE SYNTHESIS
FINAL REPORT
P R O J E C T F U N D E D B Y
M A Y 1 , 2 0 1 5
K NOWL ED GE S Y NTH ES IS TE A M
RES EA RC H ERS P R I N C I P A L I N V E S T I G A T O R Richard Sawatzky Canada Research Chair in Patient-Reported Outcomes, Associate Professor School of Nursing, Trinity Western University, Langley, BC Center for Health Evaluation & Outcome Sciences, Providence Health Care, Vancouver, BC
C O - I N V E S T I G A T O R S Stirling Bryan University of British Columbia S. Robin Cohen McGill University & Investigator, Lady Davis Institute, Montreal Anne Gadermann Centre for Health Evaluation & Outcome Sciences, Providence Health Care Kara Schick Makaroff University of Alberta Kelli Stajduhar University of Victoria
L IB RA RY S C I EN C ES
Duncan Dixon Trinity Western University
K N O WL ED G E US E RS
Lena Cuthbertson BC Ministry of Health Neil Hilliard Fraser Health Authority Judy Lett Fraser Health Authority Carolyn Tayler Fraser Health Authority
T RA IN E ES
Eric Chan TVN Post-doctoral Interdisciplinary Fellow William Harding Undergrad HQP (Highly Qualified Personnel) Glenda King HQP Dorolen Wolfs HQP
RES EA RC H A S S IS T A N T S
Kim Shearer Graduate Research Assistant Sharon Wang Graduate Research Assistant
1
™ Trademark of Technology Evaluation in the Elderly Network. Used with permission.
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TABL E OF C O NT ENT S List of Tables .................................................................................................................................................. 4
List of Figures ................................................................................................................................................. 4
Abbreviations ................................................................................................................................................. 4
Executive Summary........................................................................................................................................ 2
Background .................................................................................................................................................... 3
Project Overview and Goals .................................................................................................................. 3
Stage 1: Methods ........................................................................................................................................... 5
Identification of PROMs and PREMs .......................................................................................................... 5
Data Extraction .......................................................................................................................................... 6
Stage 1: Results .............................................................................................................................................. 8
Population and Condition Focus ................................................................................................................ 8
Dimensionality and Domains Measured ............................................................................................... 9
Stage 2: Methods ......................................................................................................................................... 10
Selection of PROMs and PREMs .............................................................................................................. 10
Data Extraction ........................................................................................................................................ 11
Stage 2: Results ............................................................................................................................................ 13
Modes of Administration ......................................................................................................................... 13
Response Options .................................................................................................................................... 14
Scoring ..................................................................................................................................................... 14
Number of Items and Time for Completion ............................................................................................ 15
Translations ............................................................................................................................................. 16
Stage 3: Methods ......................................................................................................................................... 16
Screening of Validation Studies ............................................................................................................... 16
Evaluation of Psychometric Properties.................................................................................................... 17
Stage 3: Results ............................................................................................................................................ 18
COSMIN Search ........................................................................................................................................ 18
Screening: Psychometric Validation Studies............................................................................................ 18
EMPRO Psychometric Evaluation ............................................................................................................ 19
Discussion and recommendations ............................................................................................................... 21
Limitations ............................................................................................................................................... 22
Conclusions .............................................................................................................................................. 22
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References ................................................................................................................................................... 23
Appendices................................................................................................................................................... 25
Appendix A Project Flowchart ................................................................................................................. 26
Appendix B Stage 1 Database Searches ................................................................................................... 28
Appendix C Stage 1 Screening Criteria for Relevant Articles ................................................................... 31
Appendix D Stage 1 Instrument Selection Criteria .................................................................................. 32
Appendix E Additional Sources for Identifying PROMs and PREMs........................................................ 34
Appendix F Survey Questions .................................................................................................................. 35
Survey questionnaire (on Fluid Surveys) ............................................................................................. 35
Survey Results...................................................................................................................................... 36
Appendix G Stage 1 Searches for Articles on Selected PROMs and PREMs ............................................ 37
Search Terms A - Search terms for PROMs /PREMS (#1 above) ......................................................... 37
Search Terms B - Search terms for Elderly Patients (#2 above) .......................................................... 37
Search terms C - for Acute Care (#3 above) ........................................................................................ 37
Appendix H Selected PROMs, PREMs, and PROM/PREMs ..................................................................... 38
Appendix I Stage 1 Excluded Instruments ............................................................................................... 49
Appendix J Stage 2 Data Extraction Categories ....................................................................................... 51
Appendix K Stage 2 Data Extraction Procedures ..................................................................................... 53
Appendix L Stage 3 Search Results for Validation Studies ....................................................................... 55
Appendix M Definitions ........................................................................................................................... 60
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L IS T O F T A B L ES
Table 1: Stage 1 Data Extraction .................................................................................................................... 7 Table 2: Stage 1 PROMs & PREMs ................................................................................................................. 8 Table 3. Stage 1 Disease-Specific Instruments: Disease Classifications (N = 101) ........................................ 9 Table 4: Stage 2 Data Extraction Categories ................................................................................................ 12 Table 5: Stage 3 Inclusion and Exclusion Criteria ........................................................................................ 17 Table 6: EMPRO Domain and Overall Scores ............................................................................................... 20
L IS T O F F IG U RES
Figure 1: Search and selection of PROMs and PREMs in stage 1 .................................................................. 5 Figure 2: Distribution of PROM Domains* ..................................................................................................... 9 Figure 3: Distribution of PREM Domains..................................................................................................... 10 Figure 4: Stage 2 Screening ......................................................................................................................... 11 Figure 5: PROMs and PREMs Stage 2 ........................................................................................................... 13 Figure 6: Mode of Administration ............................................................................................................... 13 Figure 7: Scaling ........................................................................................................................................... 14 Figure 8: Composite Scores.......................................................................................................................... 14 Figure 9: Number of Items ........................................................................................................................... 15 Figure 10: Time for Completion ................................................................................................................... 15 Figure 11: Translations in Most Common Language in Canada ................................................................... 16 Figure 12: Stage 3 Screening and EMPRO Evaluation Results ..................................................................... 19 Figure 13: EMPRO Domain and Overall Scores ............................................................................................ 20
A BB R EV IA T IO N S
FCG Family Caregiver PREM Patient Reported Experience Measure PROM Patient Reported Outcome Measure QOL Quality of Life COSMIN Consensus-based Standards for the Selection of Health Measurement Instruments EMPRO Evaluating the Measurement of Patient-Reported Outcomes HQP Highly Qualified Personnel TVN Technology Evaluation for the Elderly
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EX ECUT IVE SUMM AR Y
The needs of seriously ill elderly patients hospitalized in acute care are complex. Comprehensive assessments of their perceived health outcomes, quality of life concerns, and health care experiences are critical to the provision of high quality care that addresses the needs of these patients and their families. This project, funded by the Technology Evaluation for the Elderly Network (TVN), reviewed evidence about the use of self-report assessment questionnaires with patients and their families in acute care settings to assess, monitor, and address their quality of life concerns and health care experiences. Specifically, we identified and evaluated questionnaires designed to measure patient- and family-reported outcomes (PROMs) and patient/family-reported experiences with their health care (PREMs). Our interdisciplinary team consisted of researchers and knowledge users and aimed to produce evidence-based recommendations to inform the selection and utilization of PROMs and PREMs by researchers, clinicians, and decision makers with the goal to enhance quality of care of seriously ill elderly patients and their families.
This project involved a knowledge synthesis with the aims to produce a comparative evaluation of PREMs and PROMs and provide recommendations to guide the selection and utilization of PREMs and PROMs for seriously ill elderly patients and their families in acute care settings. The project consisted of three stages. The objective of stage 1 was to identify and describe PROMs and PREMs that had evidence of being recently developed or used (within the past 5 years) for research or practice in acute care settings for elderly patients and/or their family caregivers. Based on the results from stage 1 and input from the interdisciplinary team of researchers and knowledge users, stage 2 focused on a subset of 88 generally applicable and multidimensional PROMs (covering both physical and mental health domains) and PREMs. The objective was to provide a comparison of instrument characteristics, including information about the administration (e.g., length of the instruments, reading level, mode(s) of administration, translations), applicability, and use of these instruments with the elderly patients and their family caregivers in acute care settings.
The purpose of stage 3 was to identify and evaluate the quality of the PROMs and PREMs based on psychometric validation studies that focused on elderly patients in acute care and/or their family caregivers. Validation studies for the 88 PROMs and PREMs from Stage 2 were identified in PubMed using the Consensus-based Standards for the Selection of health Measurement Instruments (COSMIN) search filter and the search strings developed in Stages 1 and 2. The following three instruments met the inclusion criteria: Quality of Dying and Death (QODD), Canadian Health Care Evaluation Project Questionnaire (CANHELP), and Canadian Health Care Evaluation Project Questionnaire - shorter version (CANHELP LITE). The quality of each of the three instruments was evaluated using the Evaluating the Measurement of Patient-Reported Outcomes (EMPRO), a standardized tool for evaluating the quality of self-report health instruments. The EMPRO overall score of the three instruments ranged from 11/100 to 71/100. The CANHELP and CANHELP LITE received the highest evaluation (overall score = 71) and the QODD had the lowest (overall score = 11).
Although there are many PROMs and PREMs used in acute care for seriously ill elderly patients and their families, our review identified only two PREMs and no PROMs with compelling evidence of validity to support their use in this population. Validation studies of PROMs and PREMs are urgently needed to ensure that the quality of life concerns and healthcare experiences of seriously ill elderly patients, and their families, can be comprehensively assessed in research, quality improvement, and program evaluation.
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BA CKGR OU ND
Older adults who have progressive, chronic, life-limiting illnesses present significant challenges for healthcare delivery in acute care settings. They have complex problems that affect their ability to function and their quality of life (QOL). The imperative of patient- and family-centered care means that patients’ and family caregivers’ (FCGs) QOL concerns, as well as their experiences with healthcare, should be routinely and comprehensively assessed. Standardized measurement instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly used to measure outcomes and experiences relevant to the QOL of patients and families, including their symptoms, functional status, and psychological, social, spiritual/existential wellbeing, as well as their experiences with health care services. These measurement instruments provide important information about patients’ perspectives without prior interpretation by a clinician or any other person (US Department of Health and Human Services Food and Drug Administration (FDA), 2009), which is essential to understanding the needs of patients and whether healthcare services make a difference from their point of view1.
PROMs and PREMs are foundational to high-quality patient-centered health care delivery. PROMs, which include measures of health-related quality of life, refer to self-report instruments used to obtain appraisals from healthcare recipients about health outcomes relevant to their quality of life and well-being (International Society for Quality of Life Research, 2011). PREMs include measures of satisfaction and experience with the care provided (Jenkinson, Coulter, Bruster, Richards, & Chandola, 2002). Taken together, PROMs and PREMs provide important and complimentary information about patients’ and families’ perspectives of their health care experiences and outcomes that are relevant to their quality of life. Although there are many PROMs and PREMs available, information about their reliability and validity, applicability, and administration in acute care settings for seriously ill older adults, and their family caregivers, has not been systematically reviewed and synthesized. Healthcare researchers, professionals, administrators, and decision makers require up-to-date information to direct the selection and utilization of appropriate PROMs and PREMs to ensure that the outcomes and experiences of seriously ill patients and their families are comprehensively and accurately measured as the basis for patient-oriented research, quality improvement, program evaluation, and clinical decision making.
P R O J E C T O V E R V I E W A N D G O A L S This project involves a systematic synthesis of knowledge based on empiric literature (i.e., research reports of qualitative and quantitative primary studies and systematic reviews) and descriptive reports about the development, validation, and utilization of PROMs and PREMs in acute care of the seriously ill elderly and their families. We followed well-established knowledge synthesis methods and used the EPPI-Reviewer software (version 4.1) (Thomas, 2010) to search for relevant sources, combine all documents into a common database, apply selection criteria corresponding to the project objectives, extract relevant information from each document, and analyze the results (Cooper & Hedges, 2009; Gough, Oliver, & Thomas, 2012). The team members, including researchers, knowledge users (clinicians, administrators, and decision makers) and highly qualified personnel (HQP), were actively engaged via
1 FCG PROMs are designed to assess FCGs’ quality of life and FCG PREMs are designed to assess FCGs’ experiences with health care services provided to patients. They are not proxy instruments.
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teleconference meetings and a one-day workshop, thereby ensuring that the synthesis addressed areas of relevance to both researchers and knowledge users.
The overarching aim of this project was to provide a comparative review of available PROMs and PREMs that would facilitate the selection and utilization appropriate measures for seriously ill elderly patients and their families in acute care settings. Specifically, the objectives were to:
1. Identify and describe the characteristics of existing PROMs and PREMs that have been used for elderly patients and their families in acute care settings.
2. Provide a relative comparison and evaluation of the psychometric evidence (reliability and validity) of PROMs and PREMs focusing specifically on the seriously ill older adult population in acute care.
3. Produce recommendations regarding the selection and utilization of PROMs and PREMs in the care of seriously ill elderly patients and their families in acute care settings.
The project was organized into the following three stages (see Project Flowchart in Appendix A):
Stage 1. The focus of stage 1 was to construct a comprehensive list of PROMs and PREMs used in acute care for older adults and to collect descriptive information about each instrument. We specifically sought to identify those PROMs and PREMs that had evidence of being currently used with elderly patients in acute care settings, and with their family caregivers. We conducted literature searches for each instrument to identify those that were newly developed (defined as instruments developed during the past 5 years) or that had at least one publication during the past 5 years that was relevant to the population of interest.
Stage 2. Having found a large number of potentially relevant PROMs and PREMs, the project team subsequently decided to narrow the selection of instruments to a subset of 88 generally applicable and multidimensional PROMs (covering both physical and mental health domains) and PREMs. The rationale was that generic instruments (i.e., instruments designed for use across a wide range of populations or disease conditions) would be most applicable to acute care settings that provide care for people with various diseases (i.e., it would not be realistic or appropriate to routinely use disease-specific measures given the many different diseases present in acute care settings and given that most older adults in acute care have multiple (comorbid) diseases). In addition, the team determined that multidimensional PROMs (covering both physical and mental health domains) and PREMs would be most useful for obtaining a comprehensive overview of patients QOL concerns and healthcare experiences. However, because relatively few family caregiver PROMs and PREMs were identified, it was decided to include all instruments that focused on family caregivers.
Stage 3. The purpose of stage 3 was to identify and evaluate the quality of the identified PROMs and PREMs with published psychometric validation evidence on elderly patients in acute care and/or their family caregivers.
The methods and results of each stage are reported in the following sections.
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STA G E 1: ME THOD S
ID EN T I F IC A T IO N O F P RO MS A N D P R EMS
In the first stage of the project, the goal was to identify a comprehensive list of PROMs and PREMs for use with elderly patients and family caregivers in acute care. A multi-faceted search strategy combining the following modes of searching was used: searches of reference databases, reference checking (backward or ancestry searches), browsing, and expert consultation (see Figure 1) (White, 2009). Potentially relevant instruments were identified through a search of nine online library databases, online repositories of PROMs and PREMs (including the PROQOLID: www.PROQOLID.org), and consultation with knowledge users and expert communities.
Searches of nine electronic databases (Ageline, PsychINFO, Biomedical Reference Collection, CINAHL, Medline (EBSCOhost), ProQuest Dissertation Abstracts International, Cochrane Database of Systematic Reviews, Social Sciences Citation Index (Web of Science), EMBASE) were conducted using a comprehensive search strategy developed by a health-sciences librarian (Dixon), the research staff, and in consultation with the research team. The searches were limited to documents in English published since 2003. Although PROMs and PREMs have been studied prior to 2003, we believed it was important to be informed by evidence about instruments that are currently being studied and utilized. See Appendix B for a complete list of the search strings and keywords.
Figure 1: Search and selection of PROMs and PREMs in stage 1
Selection criteria:Elderly?
Acute care?PROM or PREM?(See Appendix D)
Stage 1
Systematic searches conducted on each PROM and PREM to determine the number and frequency of publications indexed in
Medline, CINAHL, or EMBASESee results in Appendix F
Databases:1. Ageline 2. Biomedical Reference Collection 3. CINAHL 4. Cochrane Database of Systematic Reviews 5. EMBASE 6. Medline (EBSCOhost)7. ProQuest Dissertation Abstracts International 8. PsycINFO 9. Social Sciences Citation Index (Web of Science)
For search keywords and screening criteria used, see Appendix B and C.
Other Sources:1. PROQOLID 2. Handbook of Disease Burdens and Quality of Life Measures3. Review articles/reports4. City of Hope website5. Expert team members6. Browsing (internet)7. Survey of knowledge experts
For the list of review articles and the criteria used for identifying PROMs and PREMs, see Appendix E.
223 instruments 186Publications in last 5 years Developed in the last 5 years YES
YES
Searching for candidate
instruments
NO
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After removing duplicate articles, the abstracts of 2,507 articles were screened to identify to determine whether the article included PROMs and/or PREMs pertaining to elderly patients and/or their family members in acute care (see screening criteria in Appendix C). Double screening was completed by two team members on a random selection of 502 (20%) of the 2,507 abstracts. Screening was inconsistent for 39 of the 502 abstracts, yielding an agreement rate of 92.2%. Inconsistencies were discussed and consensus was reached.
A total of 158 articles met the inclusion criteria. The full texts of these articles were subsequently reviewed to identify relevant PROMs and PREMs. To be included the instruments needed to be administered to older adults (55 years or older) in acute care settings with a length of stay greater than 24 hours (or their family caregivers). Instruments used in surgical and medical daycare, ambulatory care, emergency, rehabilitation units and step down units were excluded (see Appendix D for detailed selection criteria).
In addition to the database searches, PROMs and PREMs were identified via the following sources: PROQOLID (Emery, Perrier, & Acquadro, 2005), the Handbook of Disease Burdens (Preedy, 2009), selected review articles on PROMS and PREMS (see Appendix E), internet sites, and internet browsing. In addition, an online survey was distributed via email to team members and members of The Canadian Researchers at the End of Life Network (CARENET – www.thecarenet.ca) and the Initiative for A Palliative Approach in Nursing: Evidence & Leadership (iPANEL – www.ipanel.ca) asking respondents to indicate whether they noticed any PROMs or PREMs that were not included in our preliminary selection (see Appendix F). No additional PROMs or PREMs were identified through the survey.
Through this process, a total of 223 instruments (PROMs and PREMs) were identified. Systematic searches of three library databases (Medline, CINAHL, EMBASE) were subsequently conducted for each instrument to determine (a) the total number of scholarly publications referencing the instrument and (b) the number of publications relevant to elderly patients (see Appendix G for the search strategy). Our goal was to focus on instruments that were used or developed recently. Therefore, instruments were excluded if they had no publications in the last 5 years or if they were developed more than 5 years ago. A total of 37 instruments were excluded (see Appendix I), resulting in 186 instruments that were retained for further data extraction (see Appendix H).
DA T A EX T RA C T IO N
The purpose of Stage 1 data extraction was to record the basic characteristics of the 186 identified PROMs and PREMS (see Appendix H), including their population focus and the domains measured (see Table 1). In consultation with research team members and knowledge users, we established a customized data extraction spreadsheet to systematically collect information about the characteristics of each instrument. Where possible, data extraction was completed on original articles describing the development of the instrument. If the original article was not available, we consulted various other sources (e.g., published review articles) that contained the information.
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Table 1: Stage 1 Data Extraction
INSTRUMENT TYPE
Generic
Disease/Condition Specific
Population-Specific
DIMENSIONALITY
Multidimensional
Single-dimensional
PROMS: DIMENSIONS MEASURED
General/Overall QOL
General/Overall Health
Physical Symptoms
Physical Functions
Mental Health
Social Health
Other PROM dimension
PREMS: DIMENSIONS MEASURED
Information and education
Coordination of care
Physical comfort
Emotional support
Respect for patient preferences
Involvement of family and friends
Continuity and transition
Overall impression
Access to care
Global Rating
Other PREM dimensions
Note: See definitions in Appendix M.
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STA G E 1: RE SULT S The majority of the instruments identified in this stage were PROMs, accounting for 80% (149/186) of the instruments (see Table 2). Thirteen instruments (7%) were classified as PREMs and 24 (13%) were both PROMs and PREMs. Of the 149 PROMs, 136 (91%) were patient instruments and 13 (9%) were family caregiver instruments. Nine of the 13 PREMs (about two-thirds) were for patients and four were for family caregivers. Similarly, of the 24 instruments classified as both PROMs and PREMs (PROMs/PREMs), 20 (80%) were designed for patients, and the remaining four were for family caregivers.
The number of publications for each instrument varied widely. As shown in Table 2, the median number of publications per instrument within each of the six instrument categories ranged from 1 (PREM FCG) to 37.5 (patient PROM/PREM).
P O P UL A T IO N A N D C O N D IT IO N F O C U S
The instruments were classified as being generic (applicable to a general population of people), disease- or condition-specific, or population-specific (e.g., focusing specifically on a particular age-group or a particular healthcare sector, such as palliative care) (see Appendix M for definitions). Half of the patient PROMs (49%) were classified as disease- or condition-specific. Over one third (37%) were generic and 14% were population-specific (see Table 2). Of the FCG PROMs, over two third (69%) were disease- or condition-specific and about one third (31%) were generic. No population-specific FCG PROMs were identified.
Slightly less than half (44%) of the patient PREMs were generic and all FCG PREMs were disease- or condition-specific. No generic or population-specific FCG PREMs were identified. Seventy percent of the patient PROMs/PREMs were disease- or condition-specific and a quarter of them were generic. All FCG PROMs/PREMs were disease- or condition-specific.
Overall, 28% of the disease- or condition-specific instruments were for palliative or end-of-life care, and 22% were for cancer. About 5% of the instruments were for dementia or Alzheimer’s care (see Table 3).
Table 2: Stage 1 PROMs & PREMs
PROMs PREMs PROMs/PREMs
Patient FCG Patient FCG Patient FCG
# of Instruments 136 13 9 4 20 4
Disease-/ Condition-specific 67 9 3 4 14 4
Generic 50 4 4 0 5 0
Population-specific 19 0 2 0 1 0
Median # of Publications per Instruments 27 7 3 1 37.5 8.5
NOTE: Short forms, revisions, and adaptations of original instruments are counted separately.
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Table 3. Stage 1 Disease-Specific Instruments: Disease Classifications (N = 101)
PROMs PREMs PROMs/PREMs Disease/ Condition Focus Classification Patient FCG Patient FCG Patient FCG
Alzheimer's Disease Care 2 1 0 0 0 0
Dementia Care 2 0 0 0 0 0
Cancer Care 17 3 0 2 0 0
Palliative Care* 11 4 2 2 6 3
Others 35 1 1 0 8 1
Note: Palliative care instruments were included in the final selection of instruments for stage 2 because they pertain to a wide range of life-limiting conditions (not one particular disease or disease group).
D I M E N S I O N A L I T Y A N D D O M A I N S M E A S U R E D An instrument can be designed to measure a single (single-dimensional) or multiple domains (multi-dimensional) (see Appendix M for definitions of PROM and PREM domains). For PROMs, the majority were multi-dimensional, measuring domains including general/overall QOL, general/overall health, physical symptoms, physical functions, mental health, social health, and other domains. Similarly, the majority of the PREMs were multidimensional, including domains pertaining to information and education, coordination of care, physical comfort, emotional support, respect for patient preferences, involvement of family and friends, continuity and transition, overall impression, access to care, global rating of satisfaction, and other domains.
As Figure 2 presents, mental health, physical symptoms and physical function were the most frequently measured PROMs domains. Other PROM domains included social health, general/overall QOL, and general/overall health.
Figure 2: Distribution of PROM Domains*
* Based on 149 PROMs and 24 PROMs/PREMs (see Table 2).
29
66
103
97
94
38
55
12
17
19
17
14
10
12
8
7
11
10
7
3
7
4
4
4
4
3
3
0 50 100 150
Other PROM dimension
Social Health
Mental Health
Physical Symptoms
Physical Function
General/ Overall Health
General/ Overall QOL
Number of instrumentsPatient PROMs Patient PROMs and PREMs FCG PROMs FCG PROMs and PREMs
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Figure 3: Distribution of PREM Domains
* Based on 13 PREMs and 24 PROMs/PREMs (see Table 2)
STA G E 2: ME THOD S
S EL EC T IO N O F P RO MS A N D P R EMS
Based on the results from stage I (current instruments with evidence of use for elderly patients in acute care settings), the objective of stage 2 was to focus on a subset of generally applicable PROMs and PREMs and to obtain information about their characteristics, including their applicability and use within the target population, as well as information regarding their administration (e.g., length of the instruments, reading level, mode(s) of administration, translations, and cost). Instruments from stage 1 that were developed for palliative or end-of-life care with evidence of use for older adults or their family caregivers in acute care settings (as per stage 1) were also included. Although palliative or end-of-life care PROMs and PREMs are not generic instruments (they are population-specific), they also do not pertain to any particular disease.
In addition to focusing on generic or palliative care instruments, our team decided to focus on instruments that measure multiple domains of relevance to seriously ill elderly patients with various diseases in acute care settings, and their family caregivers. Specifically, only multidimensional PROMs
10
7
8
1
2
2
5
4
2
6
7
3
1
1
1
1
1
2
2
2
2
3
1
3
3
2
3
2
2
2
4
2
2
2
1
2
2
2
2
0 10 20 30
Other PREM Domain
Global Rating
Access to Care
Overall Impression
Continuity and Transition
Involvement of Family and Friends
Respect for Patient Preferences
Emotional Support
Physical Comfort
Coordination of Care
Information and Education
Number of instruments
Patient PROMs and PREMs Patient PREMs FCG PROMs and PREMs FCG PREMs
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(covering both physical and mental health domains) and PREMs were included. Instruments measuring only one domain (e.g., mental health), were excluded. However, because only a few family caregiver PROMs and PREMs were identified, it was decided to include all instruments for family caregivers.
In summary, the following selection criteria were applied to select instruments for stage 2 from those that were identified in stage 1 as currently used or recently developed for use in contexts of acute care for older adults and their family caregivers (see Figure 4):
1. Selection criteria for PROMS a. Exclude disease and condition specific instruments b. Include multidimensional instruments that measure both physical health and mental
health domains c. Include all family caregiver PROMs d. Include all instruments developed for palliative or end-of-life care
2. Selection criteria for PREMs a. Include only instruments that measure more than one domain (i.e., multidimensional) b. Include all family caregiver PREMs c. Include all instruments developed for palliative or end-of-life care
Figure 4: Stage 2 Screening
Stage 2
Multi-dimensional Physical and Mental Disease
Multi-dimensional
Multi-dimensional Physical and Mental Disease
Prom136
Prem9
PROM and PREM20
Family Care Giver21
YES YES
YES YES
YES
YES
67
Total88
NO
NO
DA T A EX T RA C T IO N
Specific categories for data extraction were determined in consultation with knowledge users and based on general considerations about the type of information about instrument characteristics required to select an instrument. For example, information about user fees, the number of items, scoring information, and modes of administration was extracted (see Table 4; A full list of data extraction categories is provided in Appendix J). It is important to note that stage 2 focused specifically on administrative characteristics of the instruments. Psychometric evidence focusing specifically on the target population of seriously ill older adults in acute care, and their family caregivers, is provided in stage 3.
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The following sources were used to extract the information regarding the characteristics of the PROMs and PREMs selected for stage 2 (see Appendix K):
1. The instrument development articles 2. Review articles 3. PROQOLID 4. Internet browsing (e.g., Google searches for websites that describe the instrument, including the
developer’s website or other online repositories where the instrument is described in detail).
The primary source of information for data extraction was the articles describing the development and psychometric validation of an instrument. If the development article was not available or the article did not contain sufficient information, we searched for review articles using MEDLINE and CINAHL, consulted the PROQOLID, and conducted internet browsing.
Table 4: Stage 2 Data Extraction Categories
Sources of Information
• PROQOLID • The original instrument development citation(s) • Review article(s) • Descriptions in encyclopaedias or other repositories • Browsing e.g., Google searches for websites that describe the instrument* • A copy of the instrument
Instrument Administrative Data
• Developer and year developed • Age range (Elderly only or Adult and
elderly) • User Fee
• Access • Available translations • Number of Items • Time for completion
Mode of administration
• Self-administered on Paper • Telephone administered • Computer administered • Clinician administered
• Proxy administered – caregiver • Proxy administered – clinician • Other
Response Options
• Likert • Guttman • Binary
• Qualitative • Visual • Other
Scoring Information
• Total scores • Domain scores • Utility scores
• Population norms • Canadian population norms
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STA G E 2: RE SULT S A total of 88 instruments met the screening criteria for stage 2. As shown in Figure 5, more than half (58%) of the instruments were patient PROMs. About 15% of the instruments were FCG PROMs. Only about 7% of the instruments were patient PREM and about 5% were FCG PREMs. Slightly over 10% of the instruments were patient PROMs/PREMs and about 5% were FCG PROMs/PREMs.
Figure 5: PROMs and PREMs Stage 2
MO D ES O F A DM IN IS T RA T IO N
A variety of administration modes were used in the identified PROMs and PREMs (see Figure 6). The traditional pen and paper self-administration method was the most frequently used, followed by interview- and clinician-administration. Telephone- and computer-administration were identified for only some instruments.
Figure 6: Mode of Administration
13
51
4
6
4
10
0 20 40 60 80
FCG Instruments
Patient Instruments
Number of instruments
PROM
PREM
PROM/ PREM
1
2
2
2
3
2
5
4
12
8
19
16
12
34
47
6
3
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0 10 20 30 40 50 60 70 80 90
Other
Proxy(clinician)
Proxy(caregiver)
Clinician
Computer
Telephone
Interviewer
Self (paper)
Number of instruments
Patient PREM Patient PROM Patient PROM & PREM FCG PREM FCG PROM FCG PROM & PREM
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RES P O N S E O P T IO N S
The majority (close to 90%) of the instruments used Likert scale as response option (see Figure 7). Other response options included qualitative responses, binary scale, and visual analogue scale. The Guttman scale was only used in one instrument.
Figure 7: Scaling
S C O RIN G
Figure 8 provides information on the scoring methods of the instruments. Close to 90% of the instruments used total scores as the scoring method. Half of the instruments provided domain scores. Utility scores, which can be used for health economic evaluation and to compute quality-adjusted life years, were used in six (about 7%) instruments (they were all patient PROMs). Slightly less than one fifth (17%) of the instruments provided population norms and five percent of the instruments provided Canadian norms.
Figure 8: Composite Scores
6
12
6
8
5
1
45
2
2
8
2
4
2
1
2
3
12
2
2
0 10 20 30 40 50 60 70 80 90
Other (e.g., categorical)
Visual Analogue Scale
Qualitative Responses
Binary
Guttman
Likert
Number of instruments
Patient PREM Patient PROM Patient PROM & PREM FCG PREM FCG PROM FCG PROM & PREM
6
4
3
11
6
26
49
5
7
2
4
1
4
4
12
1
2
0 20 40 60 80 100
Canadian Norms
Population Norms
Utility Scores
Domain Scores
Total Scores
Number of instruments
Patient PREM Patient PROM Patient PROM & PREM FCG PREM FCG PROM FCG PROM & PREM
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N UM BE R O F IT EMS A N D T I ME F O R C O MP L ET IO N
The number of items on the instruments ranged from less than 10 to over 50 (see Figure 9). Over one third (36%) of the instruments contained between 11 and 20 items. Ten percent of the instruments had 10 items or less and about eight percent of the instruments had over 50 items.
Figure 9: Number of Items
The amount of time required to complete an instrument varied, ranging from between 1 and 10 minutes (33% of the instruments) to between 30 and 60 minutes (about 6% of the instruments). Sixteen percent of the instrument required between 10 and 30 minutes to complete (See Figure 10).
Figure 10: Time for Completion
2
1
3
7
2
4
4
6
19
9
4
3
2
1
1
1
2
1
2
2
2
6
1
1
1
1
0 5 10 15 20 25 30 35
Unclear or Varies
51 or More
41 to 50
31 to 40
21 to 30
11 to 20
10 or Less
Number of instruments
Patient PREM Patient PROM Patient PROM & PREM FCG PREM FCG PROM FCG PROM & PREM
17
22
1
8
3
4
7
1
1
5
0
1
3
0
1
7
0
1
1
1
1
2
1
Others ("brief", "long", "not specified")
1-10 min
5-15 min
10-30 min
20-40 min
30-60 min
Number of instruments
Patient PROM FCG PROM Patient PREM FCG PREM Patient PROM & PREM FCG PROM & PREM
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T RA N S L A T IO N S
Many of the PROMs and PREMs we identified were available in several languages (see Figure 11). All instruments were available in English and about half (48%) of them were available in French. Over forty percent of the instruments were available in Chinese. Fifteen percent of the instruments were available in Korean and thirteen percent were available in Farsi. Punjabi (8%) and Tagalog (7%) versions were also available.
Figure 11: Translations in Most Common Language in Canada
STA G E 3: ME THOD S Building on the previous two stages, the objective of stage 3 of this project was to review the psychometric properties of the PROMs and PREMs with published psychometric validation studies on the elderly patient population in acute care and/or their family caregivers.
We used the COSMIN search filter (Terwee, Jansma, Riphagen, & de Vet, 2009) and our search string for the elderly patient population developed in Stages I and II to conduct a PubMed search on the 88 PROMs and PREMs to identify instruments with validation studies on elderly patients in acute care and their family caregivers. The COSMIN search filter was developed for identifying psychometric studies in PubMed. The detailed COSMIN search string can be found in Terwee et al. Appendix L presents our search terms for the 88 instruments.
S C RE EN IN G O F VA L I DA T IO N S T U DI ES
We screened the abstracts generated from the precise search filter of the COSMIN search filter (all 88 instruments) and included abstracts that explicitly reported validation with elderly patients in acute care (or their family caregivers). The screening criteria are presented in Table 5.
5
6
8
8
25
27
1
1
3
2
5
6
1
2
1
2
2
1
4
3
2
2
0 5 10 15 20 25 30 35 40 45
Tagalog
Punjabi
Korean
Farsi
Chinese
French
Patient PROM FCG PROM Patient PREM FCG PREM Patient PROM & PREM FCG PROM & PREM
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Table 5: Stage 3 Inclusion and Exclusion Criteria
Older adults (over 55 years of age) and/or their family caregivers. If age is not mentioned in the abstract, but the focus is on diseases most prevalent among the elderly population (e.g., Parkinson’s and Alzheimer’s), the article was included
INCLUDE Hospital setting greater than or equal to 24 hours
EXCLUDE
• Admittance for less than 24 hours • Surgical daycare • Ambulatory care/medical daycare • IV clinic • Dialysis unit • Preadmission • ER • Rehabilitation unit • Geriatric/step-down unit/alternate level of care/path units
Maternity and Pediatric units (excluded due to age)
NOTE: The article is a psychometric (validation) study or review focused specifically on the instrument of interest.
EVA L UA T IO N O F P S YC HO M ET R IC P R O P ERT I ES
We evaluated the psychometric properties of the articles that met our screening criteria using the Evaluating the Measurement of Patient-Reported Outcomes (EMPRO) tool. The EMPRO, developed based on the recommendations by the Medical Outcomes Trust (Scientific Advisory Committee of the Medical Outcomes Trust, 2002), is designed to evaluate the quality of self-report health instruments. It consists of 39 items covering eight domains, including 1) conceptual and measurement model, 2) reliability, 3) validity, 4) responsiveness, 5) interpretability, 6) burden, 7) alternative modes of administration, and 8) cultural and language adaptations and translations. The EMPRO has an overall Cronbach’s alpha of .95 (with alphas ranging from .71 to .83 for each of the eight categories) and strong inter-rater agreements ranging from .87 to .94 (Valderas et al., 2008). For each of the eight domains, a score is generated by taking the mean of the respective items (when a minimum of half of the items on each domain are rated) and transforming the mean score to a score between zero and 100 (higher score represents better quality). An overall score for an instrument is generated by computing the mean of the following five domains (when at least three of the domains have a score): 1) conceptual and measurement model, 2) reliability, 3) validity, 4) responsiveness, and 5) interpretability. An instrument with an overall transformed score of 50 (between 0 and 100) or above is considered “acceptable.” An overall recommendation can be given to an instrument (“Strongly recommended”, “Recommended with provisos or alternations”, “Would not recommend”, or “Not enough information available to determine the degree of recommendation”). A scoring algorithm for the EMPRO provided by Valderas was used in this study.
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STA G E 3: RE SULT S
C O S MIN S EA RC H
The COSMIN PubMed search resulted in a total of 1,228 publications on the 88 PROMs and PREMs. Per instrument, the median number of psychometric validation publications relevant to elderly patients was 2 (lower quartile = 0; upper quartile = 10.75), with a range between zero and 270.
S C RE EN IN G: P S YC HO M ET R IC VA L IDA T IO N S T UD IES
Figure 12 presents the flowchart of the screening processes. The abstracts of all 1,228 publications (a total of 88 instruments) were screened by a member of our research team. As reliability check, the abstracts of nine (slightly over 10%) of the 88 instruments, a total of 94 abstracts, were independently screened by a second individual on our research team. The following nine instruments were double screened: CES-D-SF, CQOLC, FAI, GBI, GHQ-28, QODD, WHO QOL-100, WHOQOL-OLD, and WHO-5 Well-Being Index.
Disagreement was found in two of the 94 abstracts that were double screened, yielding an agreement rate of 97.9% (the 2 articles in disagreement were discussed and consensus was reached). Of the 1,228 publications, 19 were potentially relevant (validation studies on elderly patients in acute care and/or their family caregivers). The relevance of the 19 potentially relevant publications was verified by another screener. Full texts were reviewed when the abstracts did not provide sufficient information for inclusion/exclusion decision making.
Only one publication of one instrument, the Quality of Dying and Death (QODD), met our criteria (i.e., psychometric validation studies on elderly patients in acute care and/or family caregivers) and was included in our final EMPRO evaluation. In addition to QODD, the following two instruments (one publication each) were added based on prior knowledge of the research team (even though they had not been identified using the COSMIN precise search string): 1) Canadian Health Care Evaluation Project Questionnaire (CANHELP), 2) Canadian Health Care Evaluation Project Questionnaire - shorter version (CANHELP LITE). Although the two instruments were not captured by the COSMIN precise search filter, articles on their psychometric evidence on elderly patients in acute care have been published (the two publications were captured by the COSMIN sensitive search string). Therefore, in total, three instruments were included in this stage of the project.
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Figure 12: Stage 3 Screening and EMPRO Evaluation Results
1228articles
Stage 3
COSMINPubMed Search
Older adults
Acute care
ValidationstudyYES YES
1instrumentYES
EMPROevaluation
Canadian Health Care Evaluation Project Questionnaire (CANHELP)
Canadian Health Care Evaluation Project Questionnaire - shorter version (CANHELP LITE)
Quality of Dying and Death (QODD)
Expert consultation2
instruments
EMP RO P S YC HO MET R IC EVA L UA T IO N
The three instruments were evaluated by a research team member and one of the instruments (33.34%) was independently evaluated by another member on our research team. Discrepancies were discussed and consensus was achieved. The results of the EMPRO evaluation of the three instruments are presented in Table 6 and Figure 13. The overall score of the three instruments ranged from 11.05 to 70.87. The CANHELP and CANHELP LITE received the highest evaluation (overall score = 70.87) and the QODD had a score of 11.05, the lowest of the three instruments we evaluated. The CANHELP and CANHELP Lite received excellent evaluation on the validity and respondent burden domains. The two instruments also received very high scores on the conceptual and measurement model, interpretability, and administrative burden domains. No information was provided in the publications to evaluate the responsiveness (instrument’s ability to detect change) and language versions of the CANHELP and CANHELP Lite (although the two instruments are available in both official languages of Canada). With the information available in this one publication, the QODD scored poorly on the conceptual and measurement model, validity, and respondent burden domains, and scored very poorly on the reliability, responsiveness, interpretation, and administrative burden domains.
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The EMPRO suggests that an instrument with an overall score of 50 or above is considered “acceptable.” Our evaluation revealed that the CANHELP and CANHELP LITE both scored well above 50 and therefore are strongly recommended for elderly patients in acute care and/or their family caregivers. There is insufficient psychometric evidence available to support the use of the QODD for elderly patients in acute care.
Table 6: EMPRO Domain and Overall Scores
QODD CANHELP CANHELP Lite
Conceptual and Measurement Model 28.57 90.48 90.48
Reliability 0 75 75
Validity 26.67 100 100
Responsiveness 0 - -
Interpretability 0 88.89 88.89
Respondent Burden 11.11 100 100
Administrative Burden 0 91.67 91.67
Alternative Modes of Administration N/A N/A N/A
Language Adaptations - - -
Overall 11.05 70.87 70.87
*NOTE: Dash denotes no information available; N/A denotes not applicable. Higher scores indicate better “quality”
Figure 13: EMPRO Domain and Overall Scores
0.0020.0040.0060.0080.00
100.00
QODD
CANHELP
CANHELP Lite
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D IS CU S SIO N AND R ECO MM E NDAT IO NS
This project sought to identify and characterize PROMs and PREMs that have been used in acute care for seriously ill older adults and their family caregivers and to evaluate the psychometric evidence pertaining to the use of these instruments within this population. An expansive multifaceted search strategy identified 186 instruments used in research or practice involving acute care of seriously ill older adults. Despite the large number of instruments utilized, psychometric evidence focusing specifically on this population was found only for one of the PROMs and two of the PREMs. For each of the three instruments, the number of psychometric studies was very limited - only one validation study was found for each instrument. Thus, overall, our review revealed a significant shortcoming in the validation of PROMs for use in the acute care of older adults and their family caregivers.
Based on these findings, we offer the following recommendations regarding the selection and utilization of PROMs and PREMs in the acute care of seriously ill older adults and their family caregivers.
1. Regarding PREMs: There is compelling empirical evidence supporting the use of the CANHELP and CANHELP-Lite instruments in this population. However, validated translated versions are lacking and there is a need for studies examining responsiveness (including the detection of clinically meaningful differences).
2. Regarding PROMs. There is an urgent need for validation studies focusing specifically on this population. Although there is evidence of many PROMs being used with elderly patients in acute care, we did not identify any validation studies of PROMs that focused specifically on this population. There are validation studies of PROMs focusing on palliative care (cf. Albers et al., 2010). It is possible that these instruments may be adaptable for use in acute care. However, it cannot be assumed that the seriously ill patients and family caregivers in acute care identify the same outcomes domains as being important to their quality of life. In addition, the relative importance of various domains may differ. Therefore, validation studies, including cognitive interviews, analyses of construct validity, and differential item functioning analyses, are urgently needed to ensure that the outcomes relevant to their quality of life are accurately measured.
3. Regarding the selection of PROMs and PREMs. Despite the lack of psychometric validation studies, our review revealed a wide diversity of PROMs and several PREMs that have been used for this population. The choice of instrument needs to be guided by the purpose(s) for which the data are collected and the way in which the data will be collected and analyzed. Therefore, rather than singling out a particular instrument, we have developed a database (an Excel spreadsheet) that documents, for each instrument, all the characteristics that have been summarized in this report. Users of PROMs and PREMs can refer to our database to find an instrument that meets their particular needs.
4. Regarding the utilization of PROMs and PREMs. There is evidence showing that PROMs and PREMs can improve patient-clinician communications, etc. But there are issues that need to be dealt with, such as integrating the use of PROMs and PREMs in busy acute care settings. For instance, a current project let be Sawatzky is testing the feasibility of integrating an electronic system to collect PROM and PREM information, and to provide immediate best practice
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recommendations to clinicians. This may be promising to understanding how to best utilize PROMs and PREMs in acute care clinical settings.
L IM IT A T IO N S
This project has limitations. In stage 1, the search for determining the number of articles for each instruments focused on the population of elderly patients and/or their family caregivers in acute care. It was not possible to develop a search strategy that would accurately determine the number of articles focuses specifically on seriously ill elderly patients. In addition, due to time and resource constraints, the searches for validation studies in stage 3 were based on the precise search string of COSMIN. Although this search filter has a relatively high sensitivity and specificity of 93.1% and 9.4%, respectively (Terwee et al., 2009), all relevant validation studies may not have been identified. For instance, the CANHELP and CANHELP LITE were captured by the COSMIN sensitive search string but not the precise search string.
C O N C L US IO N S
Our knowledge synthesis revealed a large number of PROMs and PREMs that have evidence of use with elderly patients and/or their family caregivers in acute care settings. However, empirical validation studies of these instruments are lacking. In addition, there is a need for evidence regarding the impact of using PROMs and PREMs to inform clinical decision making, program evaluation, and health services monitoring. Little is known about how to best routinely collect and use PROMs and PREMs information in this population. Validation studies and comparative effectiveness research regarding the use of PROMs and PREMs information are urgently needed to ensure that the quality of life concerns and healthcare experiences of seriously ill elderly patients, and their families, can be comprehensively and routinely measured and monitored to inform health services research, clinical decision making, quality improvement, and program evaluation.
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R EFER E NC ES
Albers, G., Echteld, M. A., de Vet, H. C., Onwuteaka-Philipsen, B. D., van der Linden, M. H., & Deliens, L. (2010). Evaluation of quality-of-life measures for use in palliative care: A systematic review. Palliative Medicine, 24(1), 17-37. doi: 10.1177/0269216309346593
Cooper, H., & Hedges, L. V. (Eds.). (2009). The handbook of research synthesis (second ed.). New York: Russell Sage Foundation.
Emery, M. P., Perrier, L. L., & Acquadro, C. (2005). Patient-reported outcome and quality of life instruments database (PROQOLID): frequently asked questions. Health Qual Life Outcomes, 3, 12.
Gough, D., Oliver, S., & Thomas, J. (2012). An introduction to systematic reviews. London ; Thousand Oaks, Calif.: SAGE.
International Society for Quality of Life Research. (2011). User’s Guide to Implementing Patient-Reported Outcomes Assessment in Clinical Practice. International Society for Quality of Life Research. Retrieved from http://www.isoqol.org/pdfs/UsersGuide.pdf
Jenkinson, C., Coulter, A., Bruster, S., Richards, N., & Chandola, T. (2002). Patients' experiences and satisfaction with health care: Results of a questionnaire study of specific aspects of care. Quality & Safety in Health Care, 11(4), 335-339.
Preedy, V. R. (2009). Handbook of Disease Burdens and Quality of Life Measures (pp. 1 online resource). Retrieved from Click here for full text http://GW2JH3XR2C.search.serialssolutions.com/?sid=sersol&SS_jc=TC0000315543&title=Handbook%20of%20Disease%20Burdens%20and%20Quality%20of%20Life%20Measures
Terwee, C. B., Jansma, E. P., Riphagen, II, & de Vet, H. C. (2009). Development of a methodological PubMed search filter for finding studies on measurement properties of measurement instruments. Qual Life Res, 18(8), 1115-1123. doi: 10.1007/s11136-009-9528-5
Thomas, J., Brunton, J., & Graziosi, S. . (2010). EPPI-Reviewer 4: Software for research synthesis. . London: Social Science Research Unit, Institute of Education. .
US Department of Health and Human Services Food and Drug Administration (FDA). (2009). Patient-reported outcome measures: Use in medical product development to support labeling claims. Silver Spring, MD: Author.
Valderas, J. M., Ferrer, M., Mendivil, J., Garin, O., Rajmil, L., Herdman, M., . . . Scientific Committee on "Patient-Reported Outcomes" of the, I. N. (2008). Development of EMPRO: a tool for the standardized assessment of patient-reported outcome measures. Value Health, 11(4), 700-708. doi: 10.1111/j.1524-4733.2007.00309.x
White, H. D. (2009). Scientific communication and literature retrieval. In H. Cooper & L. V. Hedges (Eds.), The handbook of research synthesis (second ed., pp. 51-71). New York: Russell Sage Foundation.
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AP PE ND IC ES
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A P P EN DIX A P RO J EC T F L O WC HA RT
Selection criteria:Elderly?
Acute care?PROM or PREM?(See Appendix D)
Stage 1
Systematic search conducted on each of the PREMs and PROMS to determine the number and frequency of publications
Medline, CINAHL, EMBASE
See results in Appendix F
Stage 2
Multi-dimensional Physical and Mental Disease
Multi-dimensional
Multi-dimensional Physical and Mental Disease
Databases:1. Ageline 2. Biomedical Reference Collection 3. CINAHL 4. Cochrane Database of Systematic Reviews 5. EMBASE 6. Medline (EBSCOhost)7. ProQuest Dissertation Abstracts International 8. PsycINFO 9. Social Sciences Citation Index (Web of Science)
For search keywords and screening criteria used, see Appendix B and C.
Other Sources:1. PROQOLID 2. Handbook of Disease Burdens and Quality of Life Measures3. Review articles/reports4. City of Hope website5. Expert team members6. Browsing (internet)7. Survey of knowledge experts
For the list of review articles and the criteria used for identifying PROMs and PREMs, see Appendix E.
223 instruments
Prom136
Prem9
PROM and PREM20
Family Care Giver21
YES YES
YES YES
YES
YES
TITLE
PROM and PROM Measures for Elderly Acute Care Patient Project – Stage 1 and 2
67
Total88
186
NO
NO
Publications in last 5 years Developed in the last 5 years YES
YES
Searching for candidate
instruments
NO
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1228articles
Stage 3
COSMINPubMed Search
Older adults
Acute care
ValidationstudyYES YES
1instrumentYES
EMPROevaluation
Canadian Health Care Evaluation Project Questionnaire (CANHELP)
Canadian Health Care Evaluation Project Questionnaire - shorter version (CANHELP LITE)
Quality of Dying and Death (QODD)
Expert consultation2
instruments
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A P P EN DIX B S T A GE 1 D A T A BA S E S EA RC H ES
DATABASES SEARCHED
1. Ageline 2. PsychINFO 3. Biomedical Reference Collection 4. CINAHL 5. Medline (EBSCOhost) 6. ProQuest Dissertation Abstracts International 7. Cochrane Database of Systematic Reviews 8. Social Sciences Citation Index (Web of Science) 9. EMBASE
SEARCH PARAMETERS
• Date run: November 13, 2013 • Language: English (where available) • Date Range: 2003-01-01 to 2013-12-31 • Species: Human (where available) • (KW search limits) • Quotation marks to create phrase searches (where applicable) • Asterisk as truncation symbol
Keywords and MeSH/Thesaurus/Subject Headings/CINAHL Headings
The searches for population, setting, and PROMs or PREMs were combined using the Boolean operator “AND”. Searches were adapted for the other databases.
POPULATION
elder* OR "older adult*" OR geriatric* OR gerontolo* OR senior* OR MH "Aged+" OR MH "Geriatrics" Note that these subject headings are MeSH for EBSCOhost Medlineand they were changed to reflect the thesaurus of each database where a thesaurus was available.
SETTING
acute OR hospitali* OR MH "Hospitalization+"
FOCUS ON PROMs or PREMs:
"family satisfaction assessment*" OR "family satisfaction index*" OR "family satisfaction instrument*" OR "family satisfaction measure*" OR "family satisfaction outcome*" OR "family satisfaction questionnaire*" OR "family satisfaction scale*" OR "family satisfaction screen*" OR "family satisfaction inventor*" OR "patient satisfaction assessment*" OR "patient satisfaction index*" OR "patient satisfaction instrument*" OR "patient satisfaction inventor*" OR "patient satisfaction measure*" OR "patient satisfaction outcome*" OR "patient satisfaction questionnaire*" OR "patient satisfaction scale*" OR "patient satisfaction screen*" OR "person* satisfaction instrument*" OR "person* satisfaction measure*" OR "person* satisfaction outcome*" OR "person* satisfaction scale*" OR "person* satisfaction questionnaire*" OR "person* satisfaction
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assessment*" OR "person* satisfaction index*" OR "person* satisfaction screen*" OR "person* satisfaction inventor*" OR "PROM" OR "patient-reported outcome*" OR "person-reported outcome*" OR "family-reported outcome*" OR "PREM" OR "patient-reported experience assessment*" OR "patient-reported experience index*" OR "patient-reported experience instrument*" OR "patient-reported experience measure*" OR "patient-reported experience screen*" OR "patient-reported experience questionnaire*" OR "patient-reported experience scale*" OR "patient-reported experience outcome*" OR "patient-reported experience inventor*" OR "person-reported experience assessment*" OR "person-reported experience index*" OR "person-reported experience instrument*" OR "person-reported experience measure*" OR "person-reported experience screen*" OR "person-reported experience questionnaire*" OR "person-reported experience scale*" OR "person-reported experience outcome*" OR "person-reported experience inventor*" OR "family-reported experience assessment*" OR "family-reported experience index*" OR "family-reported experience instrument*" OR "family-reported experience measure*" OR "family-reported experience screen*" OR "family-reported experience questionnaire*" OR "family-reported experience scale*" OR "family-reported experience outcome*" OR "family-reported experience inventor*" OR "health related quality of life" OR HQOL OR HRQOL OR "quality of life assessment*" OR "quality of life outcome*" OR "quality of life index*" OR "quality of life instrument*" OR "quality of life outcome measure*" OR "quality of life questionnaire*" OR "quality of life scale*" OR "quality of life screen*" OR "quality of life inventor*" OR HQOL OR HRQOL OR "quality of life assessment*" OR "quality of life outcome*" OR "quality of life index*" OR "quality of life instrument*" OR "quality of life outcome measure*" OR "quality of life questionnaire*" OR "quality of life scale*" OR "quality of life screen*" OR "quality of life inventor*" OR "health status assessment*" OR "health status index*" OR "health status instrument*" OR "health status measure*" OR "health status outcome*" OR "health status questionnaire*" OR "health status scale*" OR "health status screen*" OR "health status inventor*" OR "Family carer* assessment*" OR "Family carer* index*" OR "Family carer* instrument*" OR "Family carer* measure*" OR "Family carer* outcome*" OR "Family carer* questionnaire*" OR "Family carer* scale*" OR "Family carer* screen*" OR "Family carer* inventor*" OR "family caregiver* assessment*" OR "family caregiver* index*" OR "family caregiver* instrument*" OR "family caregiver* measure*" OR "family caregiver* outcome*" OR "family caregiver* questionnaire*" OR "family caregiver* scale*" OR "family caregiver* screen*" OR "family caregiver* inventor*"
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A P P EN DIX C S T A GE 1 S C RE EN IN G C R IT E RIA F O R R EL E VA N T A RT IC L ES
Review the title and abstract of each article. To be included, all of the following criteria must be met: 1. PROMs and/or PREMs are used (excluding interviews), including at least one of the following:
a. elderly patients’ health outcomes, health status, health-related quality of life, experience, or satisfaction
with care (instrument may be a PROM or a PREM),
b. elderly patients’ family members or informal caregivers’ experiences, or satisfaction related to the care
of the elderly patients (instrument is a PREM).
2. PROM/PREM responses must be directly from patients/family/informal caregivers, without
interpretation or appraisal of patients’ responses by anyone else. The PROM/PREM may be either self-
administered or clinician-administered (exclude clinician-reported outcomes or clinician-reported
experience measures / assessments /interpretations of patient health or experience)
3. The population includes Elderly patients, the elderly patients’ family members, and the elderly
patients’ informal caregivers (exclude clinicians, healthcare professionals, medical professionals)
4. Setting is the hospital. The PROM/PREM must be used, at least once, in a hospital setting.
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A P P EN DIX D S T A GE 1 IN S T R U MEN T S EL EC T IO N C RIT E R IA
Code only those instruments that satisfied ALL of the following:
• The instrument was administered to OLDER ADULTS (>= 55 years). We did not explicitly limit to those who have a chronic life-limiting illness (or illnesses) at this stage, considering that most older adults in acute care will have a chronic life-limiting illness.
• The instrument was administered in an ACUTE CARE SETTING
o Include: Hospital setting greater than or equal to 24 hours. o Exclude:
Admittance for less than 24 hours Surgical daycare ambulatory care/medical daycare IV clinic dialysis unit preadmission ER Rehabilitation unit Geriatric/step-down unit/alternate level of care/path units Maternity and Pediatric units (excluded due to age)
• Obviously a PREM or PROM. Instruments described as measuring Quality of Life and those assessing patient experience/satisfaction/needs are assumed to be self/patient-reported. o PREM: PREMs are “self-report instruments used to obtain patients’ appraisals of their
experience and satisfaction with the quality of care and services.” Typically address various composites/domains/dimensions of patient-centered care Provide information from patients’ perspectives without interpretation from a
‘middle man’ Provide quantitative and qualitative feedback to drive service improvement at the
local level or for system level improvement May or may not include patients’ self reports of the outcome of the care experience
or self-rated health status PREMS measure the quality of care “through the patient’s eyes”, often organized by
dimensions or domains of patient-centered care, such as: • Access to care • Emotional support • Information and education • Physical comfort • Involvement of family • Respect for patient preferences • Continuity and transition • Coordination of care
o PROM: PROMs are “self-report instruments used to obtain healthcare recipients’ appraisals of health outcomes relevant to their quality of life.”
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Most PROMs are multidimensional in that they address various domains of human experience, including symptoms, functional status, and psychological and social and spiritual wellbeing. (e.g., Physical, social/family, emotional, and functional wellbeing).
PROs provide information about patients’ perspectives of their health outcomes without interpretation by a clinician or any other person.
PROMs typically do not include Patient-Reported Experience Measures (PREMs) that measure satisfaction and experience with care.
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A P P EN DIX E A DD IT IO N A L S O U RC ES F O R ID EN T I F Y IN G P RO MS A N D P R EMS
A. The following four review articles/documents were consulted to identify PROMs and PREMs.
1. Albers et al (2010). Evaluation of quality-of-life measures for palliative care: A systematic review. Palliative Medicine, 24, 17-37. doi: 10.1177/0269216309346593
2. Brasel K. J. (2007). Quality-of-life assessment in palliative care. American Journal of Hospice and Palliative Medicine, 24, 231-235.
3. Wong & Haggerty (2013). Measuring patient experiences in primary health care: A review and classification of items and scales used in publicly-available questionnaires. UBC Centre for Health Services and Policy Research.
4. Handbook of Disease Burdens (Preedy, 2009) (chapters specific to elderly patients were consulted). B. Except where there is information that clearly states that the measure is used in a non-acute setting, include all PROMs and PREMs that appeared in the review articles/documents, the Handbook, and websites were identified.
C. A list of identified PROMs and PREMs were sent to expert team members (members on the research team) who were asked to provide additional PROMs and PREMs that were not on the list.
D. A search was also conducted of PROQOLID, using the following search keywords:
• Under “Population”, “Geriatrics” was chosen, and resulted in 39 instruments*. • We also used the term “palliative” to conduct the search, which resulted in 2 additional instruments.
*Using "chronic life-limiting conditions" resulted in zero result. Similarly, using "older adults" also returned zero result.
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A P P EN D IX F S URV E Y Q U ES T IO N S
Invitation email sent to CARENET and iPANEL on May 30, 3014.
We also sent this to the TVN PROM PREM KS team members and asked them to forward it to people or organizations whom they think might be interested in completing the survey.
S U R V E Y Q U E S T I O N N A I R E ( O N F L U I D S U R V E Y S ) Introduction
We are conducting a knowledge synthesis project in collaboration with researchers and knowledge users across Canada to identify and evaluate patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) for elderly patients in acute care who are seriously ill. The project is aimed at producing evidence-based recommendations that will inform the selection and utilization of PROMs and PREMs by researchers, clinicians, and decision makers with the ultimate goal to improve the quality of care of seriously ill elderly patients and their families. This project is funded by the Technology Evaluation in the Elderly Network (TVN). A brief description of the project is available here.
As part of a knowledge synthesis of measurement instruments, we are seeking input from researchers and knowledge users throughout Canada to determine whether our list of measurement instruments is complete. We have attached a list of all of the PROMs and PREMs that we have identified through our extensive literature search (also available here).
We are inviting you to review the attached list and indicate whether you have any other instruments that you would recommend. Please take a moment to look through the list and answer the following questions:
1) Are you aware of any other PREMs/PROMs for seriously ill older adults in acute care that are not on this list? (Yes / No)
2) If so, please list them.
3) Please list any PROMs or PREMs that you particularly recommend for seriously ill older adults in acute care.
Thank you!
If you want to be informed about the results of this project, please contact Rick Sawatzky at [email protected] and we will send you the report when it is completed by the end of September this year.
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S U R V E Y R E S U L T S
Are you aware of any other PREMs/PROMs for seriously ill older adults in acute care that are not on this list?
If so, please list them.
Please list any PROMs or PREMs that you particularly recommend for seriously ill older adults in acute care.
No
No Was wondering about the Liverpool assessment guide? QxMD Kidney Failure Risk Equation
No I don't know all of the instruments in the list well enough to know whether this construct is already well-covered by one or some of them, but it would be great to be able to measure a patient's sense of "peace" / "spiritual well-being". in previous CARENET work, "feelings of peace" were very important to seriously ill hospitalized patients in their construct of high quality end of life care
No
No ESAS - which you have on your list already.
No IQ-Code I wonder about the usefulness of qualitative data in seldom-studies populations (e.g. elderly critical care survivors)
IQ-Code
Yes Unclear, but if will include patients in Home Care & Nursing Home Sectors, may want to consider outcome measures (QIs)in InterRAI Tools.
Dementia/delirium; depression; cognitive assessment; med review. Key is that these are multidisciplinary
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A P P EN D IX G S T A GE 1 S EA RC HES F O R A RT IC L ES O N S EL EC T E D P RO MS A N D P RE MS
The purpose of the search was to identify:
1) the number of citations for each of the identified PROMs and PREMs, 2) the number of citations that are relevant to elderly patients for each of the PROMs and PREMs, 3) the number of citations that are relevant to elderly patients AND acute care for each of the PROMs
and PREMs. Searches were conducted on the following databases MedLINE (EBSCO), CINAHL (EBSCO), and EMBASE. The following three groups of search key terms were used to search for #1, #2, and #3 above.
S E A R C H T E R M S A - S E A R C H T E R M S F O R P R O M S / P R E M S ( # 1 A B O V E )
Please refer to the “Master PROM and PREM” Excel file for the search strings for each of the instruments.
S E A R C H T E R M S B - S E A R C H T E R M S F O R E L D E R L Y P A T I E N T S ( # 2 A B O V E )
MEDLINE: elder* OR "older adult*" OR geriatric* OR gerontolo* OR senior* OR MH "Aged+" OR MH "Geriatrics"
CINAHL: elder* OR "older adult*" OR geriatric* OR gerontolo* OR senior* OR MH "Aged+" OR MH "Geriatrics"
EMBASE: (elder* OR older adult OR geriatric OR gerontolo* OR aged OR senior*).af. OR (exp geriatrics/ OR exp aged/ OR exp gerontology/)
S E A R C H T E R M S C - F O R A C U T E C A R E ( # 3 A B O V E ) MEDLINE: Hospital* OR Acute n3 care OR emergency OR inpatient* OR MH “INPATIENTS” OR MH “HOSPITALS” OR MH “HOSPITALIZATION” OR MH “EMERGENCIES” OR MH “EMERGENCY TREATMENT” CINAHL: Hospital* OR Acute n3 care OR emergency OR inpatient* OR MH “INPATIENTS” OR MH “HOSPITALS” OR MH “HOSPITALIZATION” OR MH “EMERGENCIES” OR MH "Emergency Care" EMBASE: ((Acute adj3 care) or (Hospital* or emergency or inpatient*)).af. OR (exp hospital patient/ OR exp hospital/ OR exp hospitalization/ OR exp emergency/ OR exp emergency treatment/)
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A P P EN D IX H S EL EC T ED P RO MS , P R E MS , A N D P RO M/P R EMS
# Abbreviation Name of Instrument Year Developed
# of Acute + Elderly Publications
within past 5 years
COSMIN Precise Filter
Selected for
Stage 2
Selected for
Stage 3
PROMs for Patients
1 [no acronym] Self-anchoring Striving Scale OR Cantril's Ladder OR Ladder of Life OR the Cantril Ladder of Life
1965 14 N/A N N
2 15D 15D 1994 78 7 Y Y 3 ADRQL Alzheimer's Disease-related Quality of Life 1999 8 N/A N N
4 AI Apathy Inventory 2002 8 N/A N N 5 ALSAQ-40 Amyotrophic Lateral Sclerosis Assessment
Questionnaire long form 1999 1 N/A N N
6 ALSAQ-5 Amyotrophic Lateral Sclerosis Assessment Questionnaire short form
2001 7 N/A N N
7 ALSSQOL-R ALS Specific Quality of Life Revised 2011 0 N/A N N 8 AMS Aging Males Symptoms Scale 1999 30 0 Y Y 9 AQEL Assessment of Quality of Life at the End of
Life 1999 2 26 Y Y
10 AQoL Assessment of Quality of Life 1999 20 22 Y Y 11 Barthel Index The Barthel Index 1965 1441 N/A N N 12 BDI Beck Depression Inventory 1961 1042 49 Y Y
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13 BDI-II Beck Depression Inventory version II 1996 214 6 Y Y 14 BFI Brief Fatigue Inventory 1999 41 N/A N N 15 BPI Brief Pain Inventory 1985 246 N/A N N 16 BPI-short form Brief Pain Inventory (short form) 1991 41 N/A N N 17 CARES CAncer Rehabilitation Evaluation System
OR Cancer Rehabilitation Evaluation Systems
1990 5 N/A N N
18 CASP-19 CASP-19 quality of life scale 2003 5 N/A N N 19 CCI Crandell Cognitions Inventory (45 item) 1986 1 N/A N N 20 CCQ Clinical COPD Questionnaire 2003 15 N/A N N 21 CDC-HRQOL Centers for Disease Control – HRQOL OR
Healthy Days HRQOL measures 2000 1 3 Y Y
22 CES-D-R The Center for Epidemiologic Studies Depression Scale Revised
2004 10 0 Y Y
23 CHQ Chronic Heart Failure Questionnaire 1989 2 N/A N N 24 CMSAS Condensed Memorial Symptom
Assessment Scale 2004 2 0 Y Y
25 COH-QOL Ostomy Questionnaire
City of Hope Quality of Life (COH-QOL)-Ostomy Questionnaire
2004 3 N/A N N
26 CRQ Chronic Respiratory Disease Questionnaire 1987 99 N/A N N
27 CRQ-SAS Chronic Respiratory Disease Questionnaire - Self Administered Standardized
2003 1 N/A N N
28 DAI-10 Drug Attitude Inventory 1983 15 N/A N N 29 DAI-30 Drug Attitude Inventory 1983 16 N/A N N 30 DLQI Dermatology Life Quality Index OR
Dermatological Life Quality Index 1994 157 N/A N N
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31 DS Demoralization Scale 2004 6 N/A N N 32 DT Distress Thermometer 1998 79 N/A N N 33 DUKE Duke Health Profile 1990 9 84 Y Y 34 EFAT Edmonton Functional Assessment Tool 1997 1 1 Y Y 35 EORTC QLQ-C30 The European Organization for Research
and Treatment of Cancer Quality of Life Questionnaire
1993 916 N/A N N
36 EORTC-QLQ-C15 PAL
European Organization for Research and Treatment of Cancer Quality of Life Questionnaire – short version of the EORTC QLQ-30 for Palliative Cancer patients
2006 23 N/A N N
37 EQ-5D Euroqol EQ-5D 1990 1011 67 Y Y 38 ESAS Edmonton Symptom Assessment System 1991 102 5 Y Y 39 ESAS-r Edmonton Symptom Assessment System
Revised 2011 3 5 Y Y
40 FACIT-SP The Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being
2002 29 N/A N N
41 FACT-G Functional Assessment of Cancer Therapy-General
1993 100 N/A N N
42 FAI Functional Assessment Inventory 1984 13 14 Y Y 43 FIFE The Frailty Index for Elders 2012 1 N/A N N 44 FIQL Fecal Incontinence Quality of Life 2000 55 N/A N N 45 GARS Groningen Activities Restriction Scale 1996 5 N/A N N 46 GBI Glasgow Benefit Inventory OR Glasgow
Benefit Index 1996 39 1 Y Y
47 GDS Geriatric Depression Scale 1983 1199 N/A N N 48 GHQ-12 General Health Questionnaire - 12 1979 272 0 Y Y 49 GHQ-28 General Health Questionnaire - 28 1979 4 6 Y Y
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50 GHSI Glasgow Health Status Inventory 1996 2 1 Y Y 51 GOHAI Geriatric Oral Health Assessment Index 1990 17 3 Y Y 52 HADS Hospital Anxiety and Depression Scale 1983 2010 N/A N N 53 HQLI Hospice Quality of Life Index 1994 2 0 Y Y 54 HSCL Hopkins Symptom Checklist 1954 1 6 Y Y 55 HSCL-25 Hopkins Symptom Checklist-25 1980 21 1 Y Y 56 HSRS Hospital Stress Rating Scale 1975 1 0 Y Y 57 HUI Health Utilities Index 1995 56 29 Y Y 58 HUI3 Health Utilities Index 3 1995 28 1 Y Y 59 IADL Instrumental Activities of Daily Living 1970 697 N/A N N 60 ICECAP-O ICEpop CAPability index for older people 2008 4 N/A N N 61 ICSmale International Continence Society male
questionnaire 1996 3 N/A N N
62 IPQ Illness Perception Questionnaire 1996 63 N/A N N 63 IPSS International Prostate Symptom Score 1992 998 N/A N N 64 ISAR-HP Identification of Seniors At Risk-
hospitalized patients 2010 11 N/A N N
65 Katz-15 Katz 15-item Index of independence in basic activities of daily living
1992 5 N/A N N
66 KCCQ Kansas City Cardiomyopathy Questionnaire
2000 53 N/A N N
67 LEIPAD Quality of life assessment instrument to measure self-perceived functioning and well-being in the elderly (LEIPAD Project)
1998 2 1 Y Y
68 LHS London Handicap Scale 1994 9 8 Y Y 69 LSIZ Life Satisfaction Index Z 1969 2 N/A N N 70 LSR Life Satisfaction Rating Scale 1961 1 N/A N N 71 MacNew MacNew Heart Disease Health-Related
Quality of Life Instrument 1996 20 N/A N N
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72 MADRS Montgomery-Åsperg Depression Rating Scale
1979 291 N/A N N
73 MDASI MD Anderson Symptom Inventory 2000 26 N/A N N 74 MLHFQ OR LHFQ Minnesota Living with Heart Failure
Questionnaire 1987 167 N/A N N
75 MNA Mini Nutritional Assessment 1996 402 N/A N N 76 MOS COG-R Medical Outcomes Study (MOS) Cognitive
Functioning Scale - revised 2013 0 0 Y Y
77 MOS Sleep Medical Outcomes Study (MOS) Sleep Scale OR MOS Sleep
1992 31 N/A N N
78 MPQ McGill Pain Questionnaire 1975 161 N/A N N 79 MQOL McGill Quality of Life Questionnaire 1995 22 3 Y Y 80 MRS Menopause Rating Scale 1994 53 N/A N N 81 MSAS Memorial Symptom Assessment Scale 1994 52 N/A N N 82 MSAS-GDI Memorial Symptom Assessment Scale-
Global Distress Index 1994 7 N/A N N
83 MSAS-SF Memorial Symptom Assessment Scale - Short Form
2000 10 N/A N N
84 MUNSH Memorial University of Newfoundland Scale of Happiness
1980 1 N/A N N
85 MVQOLI Missoula-VITAS Quality of Life Index 1998 4 0 Y Y 86 NHP Nottingham Health Profile 1980 70 35 Y Y 87 NPI Neuropsychiatric Inventory 1994 386 N/A N N 88 NPSI Neuropathic Pain Symptom Inventory 2004 25 N/A N N 89 OHIP OR OHIP-49 Oral Health Impact Profile 1994 11 12 Y Y 90 PAIS-SR Psychosocial Adjustment to Illness Scale -
Self Report 1986 8 N/A N N
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91 PDI (Patient Dignity)
Patient Dignity Inventory 2008 3 1 Y Y
92 PDI (Psoriasis) Psoriasis Disability Index 1987 6 N/A N N 93 PFSDQ Pulmonary Functional Status & Dyspnea
Questionnaire 1993 5 N/A N N
94 PFSDQ-M Pulmonary Functional Status & Dyspnea Questionnaire-modified
1998 3 N/A N N
95 PGCMAI Philadelphia Geriatric Centre Multilevel Assessment Instrument
1982 1 1 Y Y
96 PGI Patient Generated Index 1994 3 10 Y Y 97 PGWBI Psychological General Well-Being
Instrument/Index 1984 28 N/A N N
98 PIQ-6 Pain Impact Questionnaire 2007 1 1 Y Y 99 PLSI Psoriasis Life Stress Inventory 1995 2 N/A N N
100 POS Palliative Care Outcome Scale OR Palliative Outcome Scale
1999 13 6 Y Y
101 PRFS Patient Reported Functional Status 1982 1 N/A N N 102 PSMS Physical Self-maintenance Scale 1970 18 N/A N N 103 PSS Perceived Stress Scale 1983 82 N/A N N 104 PWI Personal Wellbeing Index 2003 7 N/A N N 105 QBPDS Quebec Back Pain Disability Scale 1995 7 N/A N N 106 QOL-CS Quality of Life - Cancer Survivors
Instrument 1995 35 N/A N N
107 QOLS Quality of Life Scale 1978 11 37 Y Y 108 QOL-Thyroid Quality of Life - Thyroid Version 1997 4 N/A N N 109 QUALID Quality of Life in Late-Stage Dementia
Scale 1999 3 N/A N N
110 RAND36 RAND 36-Item Health Survey 1.0 1993 89 12 Y Y
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111 SAPASI Self-Administered Psoriasis Area and Severity Index
1994 1 N/A N N
112 SAS Symptom and Activity Scale 2008 31 N/A N N 113 SCL-90 Symptom Checklist - 90 1973 175 N/A N N 114 SDS Symptom Distress Scale 1978 42 N/A N N 115 SeiQOL Schedule for the Evaluation of Individual
Quality of Life 1989 15 18 Y Y
116 SeiQOL-DW Schedule for the Evaluation of Individual Quality of Life using Direct Weighting procedure
1997 9 N/A N N
117 SELF Self-Evaluation of Life Function scale 1984 2 0 Y Y 118 SES [Rosenberg's] Self-Esteem Scale 1965 3 N/A N N 119 SF-12 SF-12v2 Health Survey 1996 683 37 Y Y 120 SF-36 SF-36v2 Health Survey 1992 3156 270 Y Y 121 SF-8 SF-8 Health Survey 2001 92 2 Y Y 122 SF-CRQ Short form- Chronic Respiratory Disease
Questionnaire 2008 2 N/A N N
123 SF-MPQ McGill Pain Questionnaire Short Form 1987 43 N/A N N
124 SGRQ St George’s respiratory questionnaire 1992 341 N/A N N 125 SIP Sickness Impact Profile 1976 339 202 Y Y
126 SISC Structured Interview for Symptoms and Concerns
2004 1 3 Y Y
127 Skindex Skindex 1996 18 N/A N N
128 SOC OR OLQ Sense of Coherence Scale OR The Orientation to Life Questionnaire
1987 55 N/A N N
129 SSRS Social Support Rating Scale 1993 9 N/A N N
130 SWAL- QOL SWAL - QOL questionnaire 2000 10 N/A N N
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131 UCLA-LS UCLA Loneliness Scale 1978 17 N/A N N
132 WHO-5 WHO-5 Well-Being Index 1998 41 24 Y Y
133 WHOQOL-OLD World Health Organization Quality of Life assessment instrument - Old module
2005 11 0 Y Y
134 Wong-Baker FACES
Wong-Baker FACES Pain Rating Scale 1988 26 N/A N N
135 Zung SAS (ZSAS) Zung Self Rating Anxiety Scale 1971 15 0 Y Y
136 Zung SDS (ZSDS) Zung Self-Rating Depression Scale 1965 109 4 Y Y
PROMs for FCGs
1 CES-D The Center for Epidemiologic Studies Depression Scale
1977 742 43 Y Y
2 CES-D-SF The Center for Epidemiologic Studies Depression Scale – Short Form
1993 23 44 Y Y
3 CQOLC Caregiver Quality of Life Index - Cancer 1999 4 1 Y Y
4 CSI Caregiver Strain Index 1983 35 9 Y Y
5 Family MSAS-GDI Family Memorial Symptom Assessment Scale Global Distress Index
2001 0 0 Y Y
6 FPQ Family Pain Questionnaire 1993 1 0 Y Y
7 LEQ Life Evaluation Questionnaire 1996 1 1 Y Y
8 MRDI McCanse Readiness for Death Instrument 1987 0 0 Y Y
9 PACA Palliative Care Assessment 1995 2 1 Y Y
10 PPAF Psychosocial Pain Assessment Form 2005 0 0 Y Y
11 QOL-AD Quality of Life in Alzheimer’s Disease 1999 226 4 Y Y
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12 QOL-FV Quality of Life Family Version 1990 0 0 Y Y
13 ZBI Zarit Burden Interview (22 item) 1980 79 4 Y Y
PREMs for Patients
1 ACHFPSQ Acute Care Hospital Foodservice Patient Satisfaction Questionnaire
2005 1 N/A N N
2 CANHELP (Patient) CANadian Health Care Evaluation Project Patient questionnaire
2005 4 0 Y Y
3 CANHELP Lite (Patient)
CANadian Health care EvaLuation Project LITE questionnaire (Patient)
2013 1 0 Y Y
4 HCAHPS Hospital CAHPS (Consumer Assessment of Healthcare Providers and Systems) OR CAHPS Hospital Survey
2003 34 0 Y Y
5 ICHOA Informal Caregiving for Hospitalized Older Adults
2012 1 0 Y Y
6 IPC Interpersonal Processes of Care 1999 7 5 Y Y
7 IPC SF Interpersonal Processes of Care short form 1999 7 0 Y Y
8 PSS Patient Support Scale 2010 0 N/A N N
9 TBQ Burden of Treatment Questionnaire OR Treatment Burden Questionnaire
2012 1 N/A N N
PREMs for FCGs
1 CANHELP (Caregiver)
CANadian Health care EvaLuation Project Caregiver questionnaire
2005 1 0 Y Y
2 CANHELP Lite (Caregiver)
CANadian Health care EvaLuation Project LITE questionnaire (Caregiver)
2013 1 0 Y Y
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3 FAMCARE FAMCARE (Family Satisfaction with Advanced Cancer Care) Scale
1993 9 1 Y Y
4 FAMCARE 2 FAMCARE (Family Satisfaction with Advanced Cancer Care) Scale 2
2010 1 5 Y Y
PROMs & PREMs for Patients
1 KDQOL Kidney Disease Quality of Life 1994 63 N/A N N 2 KDQOL-SF Kidney Disease Quality of Life - short form 1997 34 N/A N N 3 MOS-SSS Medical Outcomes Study (MOS) Social
Support Survey 1991 20 N/A N N
4 NEST Needs at the End-of-Life Screening Tool 2001 2 2 Y Y 5 OARS Older Americans Resources and Services
Functional Assessment 1981 21 11 Y Y
6 OPAQ Osteoporosis Assessment Questionnaire 1993 2 N/A N N 7 PNPC Problems and Needs in Palliative Care
Questionnaire 2004 2 0 Y Y
8 PNPC-sv Problems and Needs in Palliative Care questionnaire - short version
2007 1 0 Y Y
9 PPCI Perceptions of Palliative Care Instrument 2013 0 2 Y Y
10 PSQ OR PSQ-80 Patient satisfaction questionnaire 1976 79 N/A N N
11 QLI Quality of Life Index 1985 438 22 Y Y
12 QODD Quality of Dying and Death Questionnaire 2001 13 2 Y Y
13 QOLIE-10 Quality of Life in Epilepsy - 10-item 1996 7 N/A N N 14 QOLIE-31 Quality of Life in Epilepsy - 31-item 1998 37 N/A N N
15 QOLIE-89 Questionnaire Quality of Life in Epilepsy (adapted for older adults)
1995 3 N/A N N
16 QUAL-E Quality of Life at the End of Life Measure 2002 1 19 Y Y
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17 SAQ Seattle Angina Questionnaire 1995 68 N/A N N 18 VAPI Vaccines' Perception of Injection 2009 0 N/A N N
19 WHOQOL-100 World Health Organization Quality of Life assessment instrument
1998 415 23 Y Y
20 WHOQOL-BREF World Health Organization Quality of Life assessment instrument - Brief
1998 197 1 Y Y
PROMs & PREMs for FCGs
1 CANE Camberwell Assessment of Need for the Elderly
2000 10 1 Y Y
2 PNPC- c Problems and Needs in Palliative Care Questionnaire - caregiver form
2006 0 0 Y Y
3 QOLLTI-F Quality of Life in Life Threatening Illness - Family Carer Version
2006 1 1 Y Y
4 STAS Support Team Assessment Schedule OR Support Team Assessment Scale
1993 6 2 Y Y
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A P P EN D IX I S T A GE 1 EX C L UD ED IN S T RU M EN T S
# Abbreviation Name of Instrument Year Developed
# of Acute + Elderly Publications within past 5 years
PROMs for Patients
1 [no acronym] Ceder Scale 1980 0 2 [no acronym] Energy Level Scale 2004 0 3 [no acronym] Overall Physical/ Emotional Status Scale 2004 0 4 [no acronym] Sense of Mastery Scale OR the Pearlin Mastery Scale 1978 0 5 [no acronym] Systemic Symptom Scale 2004 0 6 ALSSQOL ALS Specific Quality of Life 2006 0 7 GHSQ Glasgow Health Status Questionnaire 1996 0 8 GQLQ Geriatric Quality of Life Questionnaire 1993 0 9 GQOL - EC
Questionnaire Geriatric Quality of Life Investigation and Evaluation Criterion in China 1996 0
10 GQOLI Generic Quality of Life Inventory 1995 0 11 HRLQS Health Relative Life Quality Scale 1998 0 12 Katz ADL OR Katz-6 Katz 6-item Index of independence in Basic Activities of Daily Living 1963 0 13 LCS Life Closure Scale 1990 0 14 LSI Life Satisfaction Index (A & B) 1961 0 15 Mayers' LSQ Mayers' Lifestyle Questionnaires (1 & 2) 1995 0 16 MOS COG List 1992 0 17 MQLS McMaster Quality of Life Scale 1995 0 18 MQOL - CSF McGill Quality of Life Questionnaire - Cardiff Short Form 2005 0 19 NA - ACP Needs Assessment for Advanced Cancer Patients 2005 0 20 PAQ Patient Autonomy Questionnaire 2005 0
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21 PIQ-R Pain Impact Questionnaire Revised 2007 0 22 Q-DIS Quick-diagnostic Interview Schedule 1990 0 23 QOL-BC Quality of Life Instrument - Breast Cancer Patient Version 1995 0 24 QOL - BMT-ST Quality of Life in Bone Marrow Transplant Survivors Tool 1992 0 25 QOL - OVCA Quality of Life - Ovarian Cancer Patient Version OR City of Hope Quality
of Life Ovarian Cancer Tool 1997 0
26 QQ Questionnaire Quality and Quantity of Life Questionnaire OR Q(uality) - Q(uantity) Qestionnaire
1996 0
27 QuiLL Quality in Later Life Questionnaire 2005 0 28 SEF Self-estimated Physical Activity 1994 0 29 SNI Spiritual Needs Inventory 2006 0 30 UIHI Urinary Incontinence Handicap Inventory 1994 0 31 Zung I.D.S (short) OR
Short Zung I.D.S Short Zung Interviewer-assisted Depression Rating Scale 1987 0
PREMs for Patients
1 EPSS Elderly Patient Satisfaction Scale 2007 0 2 HNI Health Needs Instrument 2005 0 3 NHNA Nottingham Health Needs Assessment 2003 0
PROMs & PREMs for Patients
1 [no acronym] Patient Pain Interview 1998 0 2 BHI Brief Hospice Inventory 2001 0 3 QUEST Quality of End-of-life Care and Satisfaction with Treatment Scale 2002 0
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A P P EN D IX J S T A GE 2 D A T A EX T RA C T IO N C A T E GO RI ES
Name(s) of Developer Name(s) of Developer User Fee User Fee? Y/N/U User Fee Cost Accessibility Name of publisher / website # of items # of items Response Options Likert (Y/N) Guttman (Y/N) Binary (Y/N) Qualitative Responses (Y/N) Visual Analogue Scale (Y/N) Other (Y/N) if "Other," then describe here Scoring Information Total Scores (Y/N) Domain Scores (Y/N) Utility Scores (Y/N) Population Norms (Y/N) Canadian Population Norms (Y/N) Time for Completion Time for Completion (in minutes) Readability/ Understanding Grading [record reading/grade level (e.g., Grade 5 or Form 5), if available]
Mode of Administration Self-administered on Paper (Y/N) Interviewer-administered (Y/N) Telephone-administered (Y/N) Computer administered (Y/N) Clinician administered (Y/N) Proxy administered - caregiver (Y/N) Proxy administered - clinician (Y/N) Other (Y/N) If "Other," then describe here Age Range Elderly only (Y/N)
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Adult + Elderly (Y/N) Reliability Reliability Data Available? (Y/N) Internal consistency (Y/N) (if Yes, record statistical method and value)
Test-retest (Y/N) (if Yes, record statistical method and value)
Inter-rater (Y/N) (if Yes, record statistical method and value)
Validity Validity Data Available? (Y/N) Content (Y/N) (if Yes, record statistical method and value) Construct (e.g., internal structure, factor structure) (Y/N) (if Yes, record
statistical method and value)
Convergent (Y/N) (if Yes, record statistical method and value)
Discriminant (divergent) (Y/N) (if Yes, record statistical method and value)
Concurrent (eg. criterion) (Y/N) (if Yes, record statistical method and value)
Predictive (Y/N) (if Yes, record statistical method and value)
Translation(s) / Cultural Adaptation(s) [mark an "x" for all those that apply]
Akan, Albanian, Amharic, Arabic, Armenian, Azerbaijani, Chinese (Cantonese or Mandarin), Creole (Haitian), Dutch, Estonian, Finnish, French, German, Georgian, Greek, Gujarati, Hebrew, Hindi, Hungarian, Ilocano, Italian, Japanese, Kabyle, Khmer, Korean, Lao, Latvian, Lithuanian, Malay, Malayalam, Mongol, Oromo, Persian (includes Farsi, Dari, and Tajiki), Polish, Portuguese, Punjabi, Rundi, Russian, Somali, Spanish, Swahili, Tagalog, Tamil, Telugu, Thai, Turkish, Ukrainian, Urdu, Vietnamese, Yiddish, OTHER, DESCRIBE OTHER,
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A P P EN D IX K S T A GE 2 D A T A EX T RA C T IO N P RO C ED UR ES
Purpose of Stage II: To extract information (descriptive overview) regarding the PROMs and PREMs that have been used more frequently (based on Stage I search results). Information such as length of the instruments, reading level, mode(s) of administration, translations, costs, and psychometric properties were included. Sources of Information (Where to get the information?): To extract the information, we used the following five sources: Primary sources:
1) PROQOLID 2) The original instrument development citation(s) 3) Review article(s)
Additional sources were identified via browsing (not a systematic search): 4) Descriptions in encyclopaedias or other repositories (the same resources as from Stage 1) 5) Browsing (e.g., Google searches for websites that describe the instrument): this would include the developer’s website or other online repositories where the instrument is described in detail. 6) A copy of the instrument itself (this may be on a website or it may be as an Appendix in another source).
Resource Selection Strategy
We used the Original Publication and Instrument Review Articles.
Original Publication Search Strategy:
Perform search in the MEDLINE (EBSCOhost) database:
• Enter instrument’s search string (reported in column BM of the spreadsheet) in the search box • Select “oldest first” • Review in order first 3 publications that include tool, searching references for any listing of a
previous publication that was not identified in search strategy. • Googled tool name
o Searched first 2 pages for any references previous to “oldest” publication
Instrument Review Article Search Strategy:
Performed search in the MEDLINE (EBSCOhost) database:
• Entered instrument’s search string (reported in column BM of the spreadsheet) in the search box • Selected “English Language” • Selected “ Review Articles” • Ran search • If there were 10 or less results, recorded results in column DF “Review Articles”
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If there were more than 10 results:
• Limited search to articles published since January 2004 • If there were 10 or less results, recorded results in column DF “Review Articles”
If there were more than 10 results:
• Combined (with the word “AND”) the instrument search string with the “elderly” search string developed for MEDLINE (EBSCOhost) Stage 1 coding: elder* OR "older adult*" OR geriatric* OR gerontolo* OR senior* OR MH "Aged+" OR MH "Geriatrics"
• Limited search to articles published since January 2004 • If there were 10 or less results, record results in column DF “Review Articles”
If there were more than 10 results:
• Hand sorted search results for the 10 review articles that were most applicable to our project (elderly in acute care)
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A P P EN D IX L S T A GE 3 S EA RC H R ES UL T S F O R VA L I DA T IO N S T UD I ES
Abbreviation Name of Instrument Search string for PubMed COSMIN Precise Filter
SF-36 SF-36v2 Health Survey ("medical outcome study" AND "36-item short form") OR "SF-36"
270
SIP Sickness Impact Profile "Sickness Impact Profile" OR "SIP" 202
DUKE Duke Health Profile "Duke Health Profile" OR "DUKE" 84
EQ-5D Euroqol EQ-5D "Euroqol EQ-5D" OR "EQ-5D" 67
BDI Beck Depression Inventory (English version)
"Beck Depression Inventory" OR "BDI" 49
CES-D-SF Center for Epidemiologic(al) Studies Depression Scale –Short Form
"Center for Epidemiologic Studies Depression Scale Short Form" OR "CES-D"
44
CES-D Center for Epidemiologic(al) Studies Depression Scale
"Center for Epidemiologic Studies Depression Scale" OR "CES-D"
43
QOLS Quality of Life Scale "Quality of Life Scale" OR "QOLS" 37
SF-12 SF-12v2 Health Survey ("medical outcome study" AND "12-item short form") OR "SF-12"
37
NHP Nottingham Health Profile "Nottingham Health Profile" OR "NHP" 35
HUI Health Utilities Index "Health Utilities Index" OR "HUI" 29
AQEL Assessment of Quality of Life at the End of Life
"Assessment of Quality of Life at the End of Life" OR "AQEL"
26
WHO QOL-100
World Health Organization Quality of Life assessment instrument
"World Health Organization Quality of Life Assessment Instrument" OR "WHOQOL"
24
WHO QOLBREF
World Health Organization Quality of Life assessment instrument - Brief
"World Health Organization Quality of Life Assessment Instrument Brief" OR "WHOQOL"
23
AQoL Assessment of Quality of Life "Assessment of Quality of Life" OR "AQoL" 22
QLI Quality of Life Index "Quality of Life Index" OR "QLI" 22
QUAL-E Quality of Life at the End of Life Measure
"Quality of Life at the End of Life Measure" OR "QUAL-E"
19
SeiQOL Schedule for the Evaluation of Individual Quality of Life
"Schedule for the Evaluation of Individual Quality of Life" OR "SeiQOL"
18
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FAI Functional Assessment Inventory "Functional Assessment Inventory" OR "FAI"
14
OHIP (aka OHIP-49)
Oral Health Impact Profile (original version with 49 items)
"Oral Health Impact Profile" OR "OHIP" 12
RAND36 RAND 36-Item Health Survey 1.0 RAND-36 OR "RAND 36" OR "RAND 36-item Health Survey"
12
OARS Older Americans Resources and Services Functional Assessment
"Older Americans Resources and Services Functional Assessment" OR "OARS"
11
PGI Patient Generated Index "Patient Generated Index" OR "PGI" 10
CSI Caregiver Strain Index "Caregiver Strain Index" OR "CSI" 9
LHS London Handicap Scale "London Handicap Scale" OR "LHS" 8
15D 15D “15D” AND ("HRQoL" OR "QOL" OR "quality of life")
7
BDI-II Beck Depression Inventory version II
"Beck Depression Inventory version II" OR "BDI-II"
6
GHQ-28 General Health Questionnaire-28 "General Health Questionnaire-28" OR "GHQ-28"
6
HSCL Hopkins Symptom Checklist HSCL OR "Hopkins Symptom Checklist") 6
POS Palliative Care Outcome Scale OR Palliative Outcome Scale
("POS" AND palliative AND outcome AND scale) OR "Palliative Care Outcome Scale*" OR "Palliative Outcome Scale*"
6
ESAS-r Edmonton Symptom Assessment System Revised
"Edmonton Symptom Assessment System" OR "ESAS"
5
IPC Interpersonal Processes of Care "Interpersonal Processes of Care" OR "IPC" 5
ESAS Edmonton Symptom Assessment System
("ESAS" AND symptom* AND Edmonton) OR "Edmonton Symptom Assessment Scale*" OR "Edmonton Symptom Assessment System*"
5
FAMCARE 2 FAMCARE (Family Satisfaction with Advanced Cancer Care) Scale 2
FAMCARE 2 OR "Family Satisfaction with Advanced Cancer Care 2" OR "Family Satisfaction with End-of-Life Care 2" OR "Family Satisfaction with End of Life Care 2" OR "FAMCARE-2" OR "Family Satisfaction with Advanced Cancer Care-2" OR "Family Satisfaction with End-of-Life Care-2" OR "Family Satisfaction with End of Life Care-2" OR "FAMCARE-2 scale"
5
ZBI Zarit Burden Interview "Zarit Burden Interview" OR "ZBI" 4
QOL-AD Quality of Life in Alzheimer’s Disease
QOL-AD OR (("Quality of Life" OR "QOL") n2 "Alzheimer* Disease")
4
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Zung SDS OR ZSDS
Zung Self-Rating Depression Scale “Zung Self-Rating Depression Scale” OR “Zung SDS” OR “Zung-SDS” OR “Zung SRDS” OR “Zung-SRDS”
4
CDC-HRQOL Centers for Disease Control -HRQOL; Healthy Days HRQOL measures
"Centers for Disease Control -HRQOL; Healthy Days HRQOL measures" OR "CDC-HRQOL"
3
GOHAI Geriatric Oral Health Assessment Index
"Geriatric Oral Health Assessment Index" OR "GOHAI"
3
MQOL McGill Quality of Life Questionnaire
"McGill Quality of Life Questionnaire" OR "MQOL"
3
SISC Structured Interview for Symptoms and Concerns
"Structured Interview for Symptoms and Concerns" OR "SISC"
3
NEST Needs at the End-of-Life Screening Tool
"Needs at the End-of-Life Screening Tool" OR "NEST"
2
QODD Quality of Dying and Death Questionnaire
"Quality of Dying and Death Questionnaire" OR "QODD"
2
SF-8 SF-8 Health Survey ("medical outcome study" AND "8-item short form") OR "SF-8"
2
STAS Support Team Assessment Schedule OR Support Team Assessment Scale
"Support Team Assessment Schedule OR Support Team Assessment Scale" OR "STAS"
2
PPCI Perceptions of Palliative Care Instrument
Perceptions of palliative care instrument OR ("Perceptions of palliative care instrument" n1 palliative) OR ("PPCI" n2 palliative
2
CQOLC Caregiver Quality of Life Index-Cancer
"Caregiver Quality of Life Index-Cancer" OR "CQOLC"
1
EFAT Edmonton Functional Assessment Tool
"Edmonton Functional Assessment Tool" OR "EFAT"
1
FAMCARE FAMCARE (Family Satisfaction with Advanced Cancer Care) Scale
"FAMCARE" OR "Family Satisfaction with Advanced Cancer Care Scale"
1
GBI Glasgow Benefit Inventory OR Glasgow Benefit Index
"Glasgow Benefit Inventory" OR "Glasgow Benefit Index" OR "GBI"
1
GHSI Glasgow Health Status Inventory "Glasgow Health Status Inventory" OR "GHSI"
1
HSCL-25 Hopkins Symptom Checklist-25 "Hopkins Symptom Checklist-25" OR "HSCL-25"
1
HUI3 Health Utilities Index 3 "Health Utilities Index 3" OR "HUI 3" 1
LEIPAD Quality of life assessment instrument to measure self-perceived functioning and well-
"LEIPAD" 1
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being in the elderly (LEIPAD Project)
LEQ Life Evaluation Questionnaire "Life Evaluation Questionnaire" OR "LEQ" 1
PACA Palliative Care Assessment "Palliative Care Assessment" OR "PACA" 1
PDI (Patient Dignity)
Patient Dignity Inventory "Patient Dignity Inventory" OR "PDI Patient Dignity"
1
PGCMAI Philadelphia Geriatric Centre Multilevel Assessment Instrument
"Philadelphia Geriatric Centre Multilevel Assessment Instrument" OR "PGCMAI"
1
QOLLTI-F Quality of Life in Life Threatening Illness--Family Carer Version
"Quality of Life in Life Threatening Illness Family Carer Version" OR "QOLLTI-F"
1
CANE Camberwell Assessment of Need for the Elderly
("CANE" AND "Camberwell") OR "Camberwell Assessment of Need for the Elderly"
1
PIQ-6 Pain Impact Questionnaire PIQ-6 OR "Pain Impact Questionnaire" 1
WHO-5 WHO-5 Well-Being Index WHO-5 OR ("World Health Organization" AND "Well-Being Index")
1
AMS Aging Males Symptoms Scale "Aging Males Symptoms Scale" AND "AMS"
0
CANHELP (Caregiver)
CANadian Health care EvaLuation Project Caregiver questionnaire
"CANadian Health Care Evaluation Project Caregiver questionnaire" OR "CANHELP Caregiver"
0
CANHELP (Patient)
CANadian Health Care Evaluation Project Patient questionnaire
"CANadian Health Care Evaluation Project Patient questionnaire" OR "CANHELP Patient"
0
CANHELP Lite (Caregiver)
CANadian Health care EvaLuation Project LITE questionnaire (Caregiver)
"CANadian Health care EvaLuation Project LITE questionnaire Caregiver" OR "CANHELP LITE Caregiver"
0
CANHELP Lite (Patient)
CANadian Health care EvaLuation Project LITE questionnaire (Patient)
"CANadian Health care EvaLuation Project LITE questionnaire Patient" OR "CANHELP LITE Patient"
0
FPQ Family Pain Questionnaire "Family Pain Questionnaire" OR "FPQ" 0
GHQ-12 General Health Questionnaire-12 "General Health Questionnaire-12" OR "GHQ-12"
0
H-CAHPS Hospital CAHPS (Consumer Assessment of Healthcare Providers and Systems)
"Hospital CAHPS " OR "Hospital Consumer Assessment of Healthcare Providers and Systems" OR "H-CAHPS"
0
HQLI Hospice Quality of Life Index "Hospice Quality of Life Index" OR "HQLI" 0
HSRS Hospital Stress Rating Scale "Hospital Stress Rating Scale" OR "HSRS" 0
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ICHOA Informal Caregiving for Hospitalized Older Adults
"Informal Caregiving for Hospitalized Older Adults" OR "ICHOA"
0
IPC (short form)
Interpersonal Processes of Care short form
"Interpersonal Processes of Care short form" OR "IPC short form"
0
MVQOLI Missoula-VITAS Quality of Life Index
"Missoula-VITAS Quality of Life Index" OR "MVQOLI"
0
PPAF Psychosocial Pain Assessment Form
"Psychosocial Pain Assessment Form" OR "PPAF"
0
SELF Self-Evaluation of Life Function scale
"Self-Evaluation of Life Function scale" OR "SELF"
0
WHOQOLOLD World Health Organization Quality of Life assessment instrument- Old module
"World Health Organization Quality of Life assessment instrument- Old module" OR "WHOQOLOLD"
0
Zung SAS Zung Self Rating Anxiety Scale "Zung Self Rating Anxiety Scale" AND "Zung SAS"
0
CES-D-R The Center for Epidemiologic Studies Depression Scale Revised
Center for Epidemiologic Studies Depression Scale Revised OR "CES-D-R"
0
MOS COG-R Medical Outcomes Study (MOS) Cognitive Functioning Scale-revised
"MOS COG-R" OR "Medical Outcomes Study Cognitive Functioning Scale-revised"
0
MRDI McCanse Readiness for Death Instrument
"MRDI" OR "McCanse Readiness for Death Instrument"
0
CMSAS Condensed Memorial Symptom Assessment Scale
CMSAS OR "Condensed Memorial Symptom Assessment Scale*" OR "condensed MSAS"
0
Family MSAS-GDI
Family Memorial Symptom Assessment Scale Global Distress Index
Family MSAS-GDI OR Family Memorial Symptom Assessment Scale Global Distress Index
0
PNPC Problems and Needs in Palliative Care Questionnaire
PNPC OR "Problems and Needs in Palliative Care"
0
PNPC-sv Problems and Needs in Palliative Care questionnaire-short version
PNPC-sv OR "Problems and Needs in Palliative Care short version"
0
PNPC-c Problems and Needs in Palliative Care Questionnaire - caregiver form
PNPC-c OR "Problems and Needs in Palliative Care caregiver form"
0
QOL-FV Quality of Life Family Version QOL-FV OR (("Quality of Life" OR "QOL") n1 "Family Version")
0
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A P P EN DIX M DEF IN I T IO N S
T Y P E S O F I N S T R U M E N T S
Disease- or condition-specific instrument: An instrument designed to either assess for a specific health condition which can be categorized under a medical speciality or be used with a populationwho have a specific health condition. For example, the CARES instrument is designed to be used with people who have cancer. Population-specific instrument: An instrument designed for use with a target patient population, such as geriatric population or patients in palliative care (e.g., Problems and Needs in Palliative Care Questionnaire; Geriatric Quality of Life Questionnaire). Multidimensional instrument: An instrument designed to measure various domains, such as physical symptoms, physical functions, mental health, and psychological, social, sexual, and spiritual wellbeing (e.g., SF-36). Single-dimensional instrument: An instrument designed to measure a single domain (e.g., mental health). Generic measures can be used across different patient populations; they usually measure several health domains—for example, SF-36. Utility measures have been developed for economic evaluation, incorporate preferences for health states, and produce a single index—for example, EuroQol EQ-5D. Utility measurement is a method of querying an individual in order to measure the strength of preference that the individual has for an outcome (e.g., a health state), and to represent that preference by a quantitative score called a utility. A utility is a quantitative expression of an individual’s preference for, or desirability of, a particular state of health under conditions of uncertainty. The more preferred the outcome, the higher the utility score. Utility measurements offer a patient the possibility to value different aspects of treatment and outcome. Utility measurements can also be used in cost-utility analysis, a tool in the decision-making process for the allocation of financial resources to health care interventions.
P R O M D O M A I N S General/Overall QOL- assesses quality of life in general (i.e. overall quality of life).
General/Overall Health- assesses health in general (i.e. overall health).
Physical Symptoms – assess symptoms such as pain, fatigue.
Physical Functions – assesses an individual’s ability to carry out activities that require physical actions, ranging from self-care (activities of daily living) to more complex activities such as walking, jogging, climbing the stairs, etc.
Mental Health – assesses mood, depression, anxiety, anger, alcohol and drug use, etc.
Social Health – assess an individual’s ability to participate in and satisfaction with social roles and activities.
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P R E M D O M A I N S Information and education - assesses issues such as whether enough information is given, tests results are clearly explained, healthcare professionals’ answers to questions are clear.
Coordination of care - assesses issues such as organization of admission process, scheduled tests or procedures not performed at appointed time, staff providing conflicting information, patients not informed which doctor is in overall charge of care.
Physical comfort - assesses care related to patients’ physical comfort such as having to wait too long after pressing call button, having to wait too long for pain medication, staff not doing enough to control patients’ pain, and not providing the right amount of pain medication.
Emotional support - assesses issues such as discussion of patients’ and/or family caregivers’ anxieties or fears, confidence and trust in doctors and nurses, and availability of someone to talk to about concerns.
Respect for patient preferences - assesses patient preferences including sufficiently involvement of patients and/or family caregivers in decisions about treatment and care, whether patients and/or family caregivers feel treated with dignity and respect, and whether doctors and nurses talked as if the patients and/or family caregivers “weren’t there.”
Involvement of family and friends - assesses if family caregivers are given opportunities to talk to doctors, are given enough information about the health conditions, and are given information needed to help recovery or palliation of symptoms (of patients).
Continuity and transition - assesses issues such as whether the purposes of medicines are fully explained (including their side effects) and whether transitions to home or continuity of care are well coordinated.
Overall impression - evaluates overall impression of the care provided, including courtesy of admissions staff, doctors, and nurses, teamwork of doctors and nurses, overall care received, and whether patients and/or family caregivers would recommend the hospital to others.
Access to care - patient’s experience in getting the care they need during their hospital stay, including services needed.
Global Rating - overall rating of satisfaction of the care received.
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