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DOI: 10.1111/j.1741-6612.2008.00298.x 170 Australasian Journal on Ageing, Vol 27 No 4 December 2008, 170–176 © 2008 The Authors Journal compilation © 2008 ACOTA Blackwell Publishing Asia Review Article Self-management education programs for age-related macular degeneration: A systematic review Lily Lee Centre for Research into Disability and Society, School of Occupational Therapy, Curtin University of Technology; and Royal Perth Hospital, Perth, Western Australia, Australia Tanya L Packer Centre for Research into Disability and Society, School of Occupational Therapy, Curtin University of Technology; and Association for the Blind of Western Australia, Perth, Western Australia, Australia Seok Hun Tang Royal Perth Hospital, Perth, Western Australia, Australia Sonya Girdler Centre for Research into Disability and Society, School of Occupational Therapy, Curtin University of Technology, Perth, Western Australia, Australia Objective: To review the effectiveness of education programs to improve emotional status, daily living and self-efficacy in adults older than 60 years with age-related macular degeneration (AMD). Method: Electronic searches of three databases and manual searches of references lists located randomised controlled trials (RCTs) and quasi-experimental studies. Health education programs aimed at increasing knowledge of AMD, skills training or behavioural change were included. Data extraction and quality assessment were undertaken by two reviewers. A narrative analysis was possible. Results: Three protocols were reported in four studies ( n = 532) with three follow-up studies – all contained elements of self-management programs. Effect sizes for the three outcomes ranged from small to very large (0.14 –1.21). Conclusions: Self-management programs appear effective for older adults with AMD. Small sample size, use of non- traditional statistics and methodological quality meant only a narrative analysis was possible. Future studies with more robust methodology including intent-to-treat analysis are still required. Key words: health education, macular degeneration, older adults, self-management, systematic review. Introduction Age-related macular degeneration (AMD) is the leading cause of blindness in Australia, accounting for 48% of severe to profound vision impairment and over a quarter of the mild to moderate impairment [1]. In 2004, 24 200 Australians were blind as a result of AMD, while a further 48 300 had low vision [1]. The incidence of AMD is strongly age-related with its prevalence tripling each decade among Australians 70 years and older [2]. This exponential relationship between age and AMD is predicted to result in dramatic increases in the number of Australians living with disease as the population ages [2]. AMD is a chronic and progressive eye disease for which there is limited, if any, effective treatment. The macula, located in the centre of the retina, is responsible for sharp, central vision. AMD results in reduced visual acuity, central visual field, con- trast sensitivity, colour discrimination and problems with glare recovery [3]. Vision impairment of any kind, including AMD, is known to result in functional and financial consequences. For example, in 2004, eye health was estimated to have cost $A9.85 billion; $A1.8 billion due to direct health-care costs, $A3.2 billion due to indirect costs and a further $A4.8 billion due to disability and premature mortality [1]. Older adults with AMD require more assistance with personal and instrumental activities of daily living (ADL) than people of the same age without vision loss [4]. They have reduced ability to care for self and others [5] with known impacts on reading, leisure participation and shopping [6]. Loss of ability to drive has implications for independence and self-worth, and is often considered the first step towards dependence [7]. These difficulties are associated with increased risk of hip fractures [8], nursing home placements and mortality [9]. Psychosocial consequences have also been documented. Older adults with vision impairment are three times more likely to develop depression than their peers with normal vision [10]. Regardless of the degree of vision loss, older adults experience concerns, frustration and annoyance in relation to their quality of life [6]. Emotional distress is high, even in comparison to people with other serious diseases such as chronic obstructive pulmonary disease and acquired immunodeficiency syndrome [11]. Older adults with AMD want to understand their vision loss and learn strategies to manage their everyday lives. In the absence of medical cure, health education programs, which mediate the negative impact of AMD on the daily lives of older adults, are central in managing the condition. The objective of this systematic review was to determine the effectiveness of health education programs on emotional status, performance of ADL and self-efficacy in older adults with AMD. Correspondence to: Professor Tanya L. Packer, Curtin University of Technology. Email: [email protected]

Self-management education programs for age-related macular degeneration: A systematic review

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DOI: 10.1111/j.1741-6612.2008.00298.x

170

Australasian Journal on Ageing, Vol 27 No 4 December 2008, 170–176© 2008 The Authors

Journal compilation © 2008 ACOTA

Blackwell Publishing Asia

Review Article

Self-management education programs for age-related macular degeneration: A systematic review

Lily Lee

Centre for Research into Disability and Society, School of Occupational Therapy, Curtin University of Technology; and Royal Perth Hospital, Perth, Western Australia, Australia

Tanya L Packer

Centre for Research into Disability and Society, School of Occupational Therapy, Curtin University of Technology; and Association for the Blind of Western Australia, Perth, Western Australia, Australia

Seok Hun Tang

Royal Perth Hospital, Perth, Western Australia, Australia

Sonya Girdler

Centre for Research into Disability and Society, School of Occupational Therapy, Curtin University of Technology, Perth, Western Australia, Australia

Objective:

To review the effectiveness of education programs to improve emotional status, daily living and self-efficacy in adults older than 60 years with age-related macular degeneration (AMD).

Method:

Electronic searches of three databases and manual searches of references lists located randomised controlled trials (RCTs) and quasi-experimental studies. Health education programs aimed at increasing knowledge of AMD, skills training or behavioural change were included. Data extraction and quality assessment were undertaken by two reviewers. A narrative analysis was possible.

Results:

Three protocols were reported in four studies (

n

= 532) with three follow-up studies – all contained elements of self-management programs. Effect sizes for the three outcomes ranged from small to very large (0.14–1.21).

Conclusions:

Self-management programs appear effective for older adults with AMD. Small sample size, use of non-traditional statistics and methodological quality meant only a narrative analysis was possible. Future studies with more robust methodology including intent-to-treat analysis are still required.

Key words:

health education, macular degeneration, older adults, self-management, systematic review.

Introduction

Age-related macular degeneration (AMD) is the leading causeof blindness in Australia, accounting for 48% of severe toprofound vision impairment and over a quarter of the mild to

moderate impairment [1]. In 2004, 24 200 Australians wereblind as a result of AMD, while a further 48 300 had lowvision [1]. The incidence of AMD is strongly age-related withits prevalence tripling each decade among Australians 70 yearsand older [2]. This exponential relationship between age andAMD is predicted to result in dramatic increases in the numberof Australians living with disease as the population ages [2].

AMD is a chronic and progressive eye disease for which thereis limited, if any, effective treatment. The macula, located in thecentre of the retina, is responsible for sharp, central vision.AMD results in reduced visual acuity, central visual field, con-trast sensitivity, colour discrimination and problems with glarerecovery [3].

Vision impairment of any kind, including AMD, is known toresult in functional and financial consequences. For example,in 2004, eye health was estimated to have cost $A9.85 billion;$A1.8 billion due to direct health-care costs, $A3.2 billion dueto indirect costs and a further $A4.8 billion due to disabilityand premature mortality [1]. Older adults with AMD requiremore assistance with personal and instrumental activities ofdaily living (ADL) than people of the same age without visionloss [4]. They have reduced ability to care for self and others[5] with known impacts on reading, leisure participationand shopping [6]. Loss of ability to drive has implications forindependence and self-worth, and is often considered the firststep towards dependence [7]. These difficulties are associatedwith increased risk of hip fractures [8], nursing homeplacements and mortality [9].

Psychosocial consequences have also been documented. Olderadults with vision impairment are three times more likely todevelop depression than their peers with normal vision [10].Regardless of the degree of vision loss, older adults experienceconcerns, frustration and annoyance in relation to their qualityof life [6]. Emotional distress is high, even in comparison topeople with other serious diseases such as chronic obstructivepulmonary disease and acquired immunodeficiency syndrome[11].

Older adults with AMD want to understand their vision lossand learn strategies to manage their everyday lives. In theabsence of medical cure, health education programs, whichmediate the negative impact of AMD on the daily lives of olderadults, are central in managing the condition. The objective ofthis systematic review was to determine the effectiveness ofhealth education programs on emotional status, performanceof ADL and self-efficacy in older adults with AMD.

Correspondence to: Professor Tanya L. Packer, Curtin University of Technology. Email: [email protected]

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Methods

The review adopted the principles and techniques of systematicreviews. Electronic searches of three databases were used toidentify and locate relevant studies for inclusion. Eachdatabase was searched from its earliest electronic records(MEDLINE from 1966, EMBASE from 1980, and theCumulative Index of Nursing and Allied Health Literature –CINAHL from 1982) to March 2006. The main search termswere macular degeneration, patient education programs andretinal degeneration. With the assistance of a librarian, allterms were truncated, exploded and adjusted to match thespecific database being searched. To search for randomisedcontrolled trials (RCTs) and quasi-experimental studies, thissearch was combined with the Cochrane Highly Sensitive SearchStrategy phases one, two and three as contained in the

CochraneHandbook for Systematic Reviews of Interventions

[12]. Nolanguage restrictions were placed on the searches, however, theywere limited to published literature. Reference lists of all retrievedrelevant studies were manually searched but searches of ophthal-mology journals and conference proceedings were not undertaken.

A priori

criteria for inclusion of studies were applied first tolocated abstracts and then to full text articles if the abstract didnot provide sufficient information. Studies were included if theintervention was described as a health education programpurporting to increase level of knowledge relating to AMD,providing skills training, or focusing on behaviour changes.The mode, length and frequency of the programs and thediscipline of health-care providers were not limited. Participantsin the studies were restricted to those where adults aged60 years or older with AMD were the sole or majority ofparticipants. Outcomes of interest included emotional statusand functional ability and self-efficacy.

Assessment of methodological quality

Two reviewers independently assessed the quality of each studyusing the assessment tool for quantitative studies developed byKmet et al. [13]. The checklist consists of 14 questions and ascoring system. Guidelines and instructions are provided andwere used to assist the reviewers in answering questions andcalculating quality assessment scores. The reviewers used thecalculated score to define the quality as strong (score of > 80%),good (70–80%), adequate (50–70%) or limited (< 50%).Discrepancies between reviewers were resolved by discussion.

Data extraction

Two reviewers independently extracted data from the potentialstudies using methods set out in Section 7 of the

CochraneHandbook for Systematic Reviews of Interventions

[12]. Dataextracted included: study objective(s), study design, method ofparticipant selection, characteristics of the participants, randomallocation, masking of investigators, masking of participants,outcomes, sample size, analytical methods, estimate of variance,confounding controls, results and conclusions. Any discrepancieswere again resolved by discussion. Once data were extracted,the level of evidence was determined based on the NationalHealth and Medical Research Council guidelines [14].

Data synthesis and analysis

Given the use of non-traditional analyses in three articles andthe small number of protocols (three) reported, meta-analysiswas not possible. Instead, a narrative review was undertaken tosummarise findings and provide an assessment of methodologicalissues. However, where sufficient data were provided, effectsize and confidence intervals were calculated using twosoftware calculators: Thalheimer and Cook [15] and theCochrane Library RevMan software [16]. The Thalheimerand Cook [15] calculator extended the options available inRevMan by calculating effect size when standard deviationswere absent and percentage of change. Using the Thalheimerand Cook [15], Cohen’s d was calculated by dividing the meandifference by the pooled standard deviation. Where the stand-ard deviation was not available, effect size was calculatedusing the

t

-value alone. In RevMan, effect size for continuousdata was calculated using the standardised mean differencewith a fixed effect model (inverse variance method) [16]. Fordichotomous data, the relative risk was calculated usingMantel–Haenszel method [16]. Results of the two methods wereexamined for comparability. In all cases the two estimates werewithin 0.1 of each other – hence, results from the two methodswere considered equal.

Results

Electronic searches located 106 articles from MEDLINE, 109from EMBASE and 51 from CINAHL for a total of 220 potentialarticles after accounting for duplicates. Using the stated inclusioncriteria, titles and abstracts were reviewed, resulting in 208articles judged ineligible. Full texts of the remaining 12 articles(two articles retrieved from the reference lists of the potentialstudies) were reviewed for inclusion.

Of the 12 articles, seven met the inclusion criteria reporting onthree different intervention protocols with a total of 532participants. Authors described them as a psychosocial educationprogram [17], a self-management program [18–20] and ahealth education program [21–23]. Four initial studies ofeffectiveness included three RCTs [18,19,21] and one quasi-experimental study using a pretest–post-test design with acontrol group [17]. Two RCTs [18,21] were further evaluatedin three follow-up studies [20,22,23]. One follow-up study[23] primarily reported on cost-effectiveness, however, con-tained summative data not available in the earlier studies, sowas included. In summary, three author groups reported onthree intervention protocols using four different samples (oneprotocol was used with two independent samples) in sevenarticles (three articles were follow-up studies). Five [24–28]studies were excluded.

Quality assessment of studies

Overall, the methodological quality of the included articlesranged from adequate to very strong (see Table 1). One studyreporting on the psychosocial intervention protocol was ratedas adequate, three reporting on the health education programwere rated as strong and three reporting on the self-managementprotocol were rated as strong to very strong. Shortcomings

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Table 1: Description of included studies

First author, year of publication, country

Design AMD criteria Intervention Outcome measures Results Methodological quality

Birk (17) 2004 Germany

Quasi-experimental, pretest/post-test (

n

= 22) Experiment = psychosocial program (

n

= 14) Comparison = no treatment (

n

= 8)

• Assessment of bilateral AMD by ophthalmologist

• Visual acuity < 20/70 in the better eye

Group sessions on • Progressive muscle relaxation • Exchange of experiences • Thoughts, emotion

and behaviour • Resources • Problem-solving • Information

Emotional status

• Positive and negative affect

schedule (German version) • Geriatric Depression

Scale (GDS)

Emotional status

No change in positive affect Significant (

P

= 0.05) change in negative affect GDS – Tendency towards significance

Adequate quality (score = 15/28). Conclusion was limited because of small sample size, no rigorous randomisation and no blinding.

Functional status

• ADL and IADL – Multilevel Assessment Instrument

Functional status

Statistically significant

Self-efficacy

Tentative statistical change for perceived autonomy

Self-efficacy

• Perceived autonomy (11-point Likert scale)

• Active problem orientation (coping with illness)

Brody (19) 1999USA

RCT (

n

= 92)Experiment = self-management program (

n

= 44) Control = waiting list (

n

= 48)

• Diagnosis of AMD by ophthalmologist

• Visual loss due to AMD only • Visual acuity of 20/200 in at least

one eye with best correction • Visual acuity of 20/60 or worse

in the better eye

Experimental

• Didactic presentation • Problem-solving • Cognitive skills training • Behavioural skills training

Emotional status

• POMS

Self-efficacy

• AMD-SEQ

Emotional status

Significantly reduced emotional distress (

P

= 0.04)

Self-efficacy

Improved self-efficacy (

P

= 0.02)

Adequate quality (score = 18/28). Conclusion was limited because of small sample size used to investigate emotion, low statistical power and significant differences in results because of missing data. Further study was required.

Brody (18) 2002 USA

RCT (

n

= 231) Experiment = self-management program (

n

= 86) Control A = tape-recorded health lectures (

n

= 74) Control B = waiting list (

n

= 72)

• Diagnosis of AMD by ophthalmologist and fundus photographs

• Visual loss due to AMD only • Visual acuity of 20/60 or worse

in the better eye • Visual acuity of 20/100 or worse

in the other eye with habitual correction

Experimental

• Didactic presentation • Problem-solving • Cognitive skills training • Behavioural skills training

Control A

• Tape-recorded lectures

Emotional status

• POMS

Self-efficacy

• Macular Degeneration Self-Efficacy Questionnaire (AMD-SEQ)

Functional status

• The National Eye Institute

Visual Function Questionnaire

Emotional status

Interaction noted (

P

= 0.02) indicating reduced emotional distress in self-management group, especially for participants with depression (

P

= 0.001)

Self-efficacy

Interaction (

P

= 0.02) indicating increased self-efficacy in self-management group

Functional status

Interaction (

P

= 0.04) indicating increased functioning in self-management group, especially for depressed participants (

P

= 0.02)

Very strong quality (score = 26/28). Conclusion was appropriate; adequate sample size, interviewer blinded, participants blinded to the hypotheses of the study, number of drop-outs with reasons stated, same education giver and same site.

Brody (20) 2005 USA

Note: 28-month follow-up to Brody (20). Reduced sample size reflects attrition.

RCT (

n

= 214) Experiment = self-management program (

n

= 82) Control A = tape-recorded health lectures (

n

= 66) Control B = waiting list (

n

= 66)

• Diagnosis of AMD by ophthalmologist and fundus photographs

• Visual loss due to AMD only • Visual acuity of 20/60 or

worse in the better eye• Visual acuity of 20/100 or

worse in the other eye with habitual correction

Experimental

• Didactic presentation • Problem-solving• Cognitive skills training• Behavioural skills training

Control A

• Tape-recorded lectures

Emotional status

• POMS

Self-efficacy

• Macular Degeneration Self-Efficacy Questionnaire (AMD-SEQ)

Functional status

• The National Eye Institute

Visual Function Questionnaire

Emotional status

Significantly reduced emotional distress (

P

= 0.008) in the treatment group as compared to the control

Self-efficacy

The self-management group had significantly better self-efficacythan the control group (

P

= 0.006)

Functional status

Significantly better function (

P

= 0.05) reported by the control group

Very strong quality (score = 26/28). Conclusion was appropriate; adequate sample size, interviewer blinded, participants blinded to the hypotheses of the study, number of drop-outs with reasons stated, same education giver and same site.

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Dahlin-Ivanoff (21) 2002Sweden

RCT (

n

= 187) Experiment = health education program (

n

= 93) Control = individual intervention program (

n

= 94)

• Diagnosis of AMD as primary eye condition

• Distance visual acuity > 0.1 in the better eye with best correction

Control

• Provision of optical aids and

low-vision aides• Information on request

Intervention

• Group methodology • Problem-solving modelling • Skills training • Information booklet

Control

• Provision of optical aids and

low-vision aides• Information on request

Perceived security

• Tests designed for this study

Functional status

Significant differences between groups in 13 of 28 daily activities

Strong quality (score = 25/28). Instrument tested for reliability, responsiveness, validity and content validity, evaluators were not blinded to treatment or composition of groups, participants also not blinded as needed to know what service was received, and open questions revealed the nature of the group.

Eklund (22) 2004 Sweden

Note: Follow up to Dahlin-Ivanoff (21). Reduced sample size reflects attrition.

RCT (

n

= 131)Experiment = health education program (

n

= 62) Control = individual intervention program (

n

= 69)

• Diagnosis of AMD as primary eye condition

• Distance visual acuity > 0.1 in the better eye with best correction

Intervention

• Group methodology • Problem-solving modelling • Skills training • Information booklet

Control

• Provision of optical aids and low-vision aides

• Information on request

Perceived security

• Tests designed for this

study

Functional status

Significant differences between groups in 13 of 28 daily activities

Strong quality (score = 25/28). Instrument tested for reliability, responsiveness, validity and content validity, evaluators were not blinded to treatment or composition of groups, participants also not blinded as needed to know what service was received, and open questions revealed the nature of the group.

Eklund (23) 2005Sweden

Note: Economic follow up to Dahlin-Ivanoff (21,22). Reduced sample size reflects attrition.

RCT (

n

= 131)Experiment = health education program (

n

= 62) Control = individual intervention program (

n

= 69)

• Diagnosis of AMD as primary eye condition

• Distance visual acuity > 0.1 in the better eye with best correction

Intervention

• Group methodology • Problem-solving modelling • Skills training • Information booklet

Control

• Provision of optical aids and low-vision aides

• Information on request

Perceived security

• Tests designed for this study

Functional status 28 participants in the experiment group showed improved levels of security compared with 7 in control group

Strong quality (score = 25/28) based on methodology presented in earlier study.

ADL, activities of daily living; AMD, age-related macular degeneration; IADL, instrumental activities of daily living; POMS, Profile Mood States; RCT, randomised controlled trial.

First author, year of publication, country

Design AMD criteria Intervention Outcome measures Results Methodological quality

Table 1

Continued

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included small sample sizes, lack of blinding and none intent-to-treat analysis (although treatment of missing data wasmostly reported). These shortcomings are common and dif-ficult to overcome in studies that demand active involvementof participants. While some authors reported confidenceintervals for the mean differences, few reported effect sizes. Forthe most part, measurement tools had sound psychometricproperties, typically involving summed scores. The one exceptionwas the Perceived Security Scale used to evaluate the healtheducation program which was designed and tested to measurefunctional status of older adults with AMD [25]. No summa-tive score is produced. Instead, results are reported on the basisof each item, making calculation of effect size difficult.

Interventions

Although the intention of this review was to include all typesof health education programs, it was evident from the studiesretrieved that all programs, despite the names given by theauthors, included elements of self-management educationprograms. One protocol [18–20] was specifically identified asa Self-management Program. The other two protocols (reportedas a Health Education and a Psychosocial Intervention)included education on problem-solving and the intention toincrease self-efficacy; both of which are components thatdifferentiate self-management education programs fromtraditional patient education [29] (see Table 1).

Comparison groups varied. The Self-management Protocolwas evaluated in two separate RCTs (one with a follow-upstudy), one using a wait list control [19] and the other usingtwo control groups: a tape-recorded health lecture group anda no-intervention group [18]. The Psychosocial Program [20]was compared to a no-treatment group, the Health EducationProgram [21–23] to an Individualised Treatment Program.

Outcomes (functional status, emotional status and self-efficacy)

Three broad outcomes; emotional status, functional statusand self-efficacy, were evaluated (see Table 1). Changes inemotional status were examined in four of the seven includedstudies [17–20]; measures included the Profile of Mood States(POMS), the Geriatric Depression Scale and the Positiveand Negative Affect Schedule. The two RCTs by Brodyand colleagues [18,19] found statistically significant improve-ment in the Self-management groups compared to controlsusing the POMS. This was sustained (

P

= 0.008) in the follow-up study (combined face-to-face and taped health lecture)[20]. Calculations, however, indicated that effect sizes weresmall in all three studies (range – 0.15 to – 0.36) (see Table 2).In the pretest–post-test with control study by Birk et al. [17],differences were found on the Negative Affect Scale but notthe Positive Affect Scale, indicating that the control group hadmore severe scores on the Negative Affect Scale. In the samestudy, a tendency towards significance was found using theGeriatric Depression Scale [17]. Effect sizes were found to besmall for the Positive Affect Scale, very large for the NegativeAffect Scale and large for the Geriatric Depression Scale

(Table 2). A small sample size and limited power hamperedthis study, giving rise to speculation that a larger sample sizemay result in significant differences in the Positive Affect andGeriatric Depression scales as well.

All but one study [19] reported on functional status as anoutcome. Despite using different outcome measures (Multi-level Assessment Instrument; National Eye Institute VisualFunction Questionnaire; and Perceived Security) all demon-strated statistically significant differences between theintervention and the control groups. Six-month follow up ofthe Self-management Program [18] indicated that while therewas no difference between those who received the recordedlectures and the face-to-face program, the combined interventiongroup (face-to-face and recorded health lectures) performedsignificantly better (

P

= 0.05) than the no-intervention controlgroups on 15 of 28 items. Effect sizes for the Self-managementand Psychosocial protocols ranged from 0.14 (small) to 1.16(very large) (Table 2). Dahlin-Ivanoff et al. [21] reportedsignificant differences between the Health Education Groupand the usual care (individual treatment program) groups in 13of 28 daily occupations. At follow up, the Health EducationGroup showed a significant tendency towards improved level ofsecurity, while the Individual Intervention Group tended todeteriorate [22]. Insufficient data were provided to calculateeffect size or relative risk from the main RCT studies reportingon the health education program. However, a follow-up studyexamining cost-effectiveness did provide sufficient summativedata to calculate relative risk. People in the intervention group were4.45 times more likely to improve than those in the control group.

Finally, four studies [17–19,21] reported on changes in orcorrelations with self-efficacy or related concepts (coping,autonomy). The AMD Self-efficacy Questionnaire, a disease-specific self-efficacy measure was used in studies examiningthe named self-management program [18–20]. Analysis of cov-ariance found significant differences between the interventionand control groups that were sustained at follow up (

P

= 0.006)[20]. Effect sizes were small to medium (Table 2). Birk et al.[17] reported ‘tentative statistical’ differences between thePsychosocial Program and the no-intervention control groupsusing the Perceived Autonomy Scale (effect size = 0.93) andActive Problem Orientation (effect size 0.88). Both effect sizescan be regarded as large (Table 2).

Discussion

This systematic review found RCT and quasi-experimentalevidence to support the use of self-management and self-management like programs to improve emotional distress,functional ability and self-efficacy in elderly people with AMD.There is sufficient evidence for optimism. Statisticallysignificant improvements were consistently found betweenintervention and control groups. Effect sizes ranged from smallto very large. No adverse effects were reported. However, theresults must be viewed in light of the limitations, the smallnumber of studies, author groups and independent samples aswell as the methodological quality of the studies.

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Studies for this review were located from only three databases,although it can be argued that these are the most likely to yieldquality research in this area. Additionally, the search was limitedto published literature and did not include the grey literature;manual searches of ophthalmology, therapy or nursing journalsnor conference proceedings were not undertaken.

The small sample size in the study by Birk et al. [17] must beconsidered when making conclusions and generalising results.Other studies had adequate sample sizes, although it can beargued that some were underpowered. Birk et al. [17] includedonly elderly adults with bilateral AMD, whereas Dahlin-Ivanoff et al. [21] included adults where AMD was not the soleeye disease. Brody [18] included older adults with ‘advancedAMD’. Despite the differences, all studies reflect the reality ofthe population of people with AMD such as advanced age anda high likelihood of additional conditions. Lack of consistencyin outcome measures is typical of clinical studies as is the use

of many different analytical techniques. In the included studiesthree used non-traditional analysis, one used non-parametricanalysis and none reported intent-to-treat analysis.

Despite these limitations, it can be argued that level II (at leastone high quality RCT) evidence is available for each outcome.This is further supported by the fact that, on balance, allmeasures indicated improvement or prevention of furtherdeterioration and no adverse effects were reported. Effect sizesvaried but all were positive.

Improving the emotional and functional rehabilitationoutcomes for older adults with AMD is not only a social, butan economic imperative. Recently, Clear Insight [1], a reportcommissioned by the Centre for Eye Research Australia andthe Eye Research Australia Foundation, estimated that thetotal real costs (direct and indirect) of vision impairment in2004 were more than $A5.0 billion (over 0.6% of GDP). The

Table 2: Effect sizes reported and calculated from published data

Effect size/corrected effect size as

reported by authors

Effect size calculated from t-value using Thalheimer

& Cook 2002

Birk 2004Emotional status 0.23/0.28 0.24 (small)

Positive affectNegative affect 1.14/0.78 1.21 (very large)Depression 0.88/0.44 0.92 (large)

Functional status 1.11/0.66 1.16 (very large)ADL/IADL

Self-efficacy 0.90/1.14 0.93 (large)perceived

AutonomyActive problem 0.84/0.85 0.88 (large)

Orientation

Effect size/corrected effect size as reported

by authors

Effect size calculated from means and standard

deviations using RevMan 2003

Confidence interval calculated using

RevMan

Percentage change calculated using

Thalheimer & Cook 2002

Brody 1999Emotional status

POMS total−0.53 −0.36 (small) −0.90, 0.18 –18% (medium improvement)

Self-efficacy AMD self-efficacy

0.47 0.59 (medium) 0.07, 1.12 12% (small increase)

Brody 2002Emotional status

POMS total−0.15 (small) −0.41, 0.12 –8% (small improvement)

Functional status NEI-VFQ total

0.14 (small) −0.12, 0.41 3% (negligible)

Self-efficacy AMD self-efficacy

0.23 (small) −0.03, 0.50 5% (small increase)

Brody 2005Emotional status

POMS total−0.22 (small) −0.5, 0.05 −12% (small improvement)

Functional status NEI-VFQ total

0.26 (small) −0.02, 0.54 7% (small increase)

Self-efficacy AMD self-efficacy

0.25 (small) −0.02, 0.53 5% (small increase)

Effect size/corrected effect size as reported

by authors

Relative risk calculated

using RevMan

Confidence interval calculated using

RevManEklund 2005Functional status

perceived security4.45 in favour of experimental group 2.09, 9.46

AMD, age-related macular degeneration; NEI-VFQ, National Eye Institute Visual Function Questionnaire; POMS, Profile of Mood States.

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e t a l .

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Journal compilation © 2008 ACOTA

cost of suffering and premature death from vision impairmentadded an extra $A4.8 billion to this cost. However, despite theimportance of interventions such as patient educationprograms, there is currently limited understanding of the relativeeffectiveness of various models of service in facilitatingrehabilitation outcomes for older adults with AMD. Findingsfrom this review suggest that self-management and self-management-like interventions can improve the emotional,functional and self-efficacy outcomes. This is particularlyimportant because the comparison group in one study werepeople receiving ‘usual care’. Dahlin-Ivanoff et al. [21] reportedsignificant differences between the intervention and the usualcare consisting of an individualised treatment program.

Although the importance of evidence and research in guidingmodels of service delivery has been reiterated across manyfields including vision rehabilitation, the gap between researchand practice continues [30]. However, with service providersbeing increasingly required to demonstrate both outcomes andefficiencies, the drive to improve and measure practice isgaining momentum. Given that the weight of evidenceindicates self-management programs are effective, andpossibly more effective than individual case management,service providers need to review and evaluate current practicewithin low-vision rehabilitation.

Key Points

• Specifically named self-management programs andprograms with self-management characteristicsappear to be the most common form of educationprogram for people with AMD.

• Self-management-type education programs appearto be effective in improving emotional distress,functional ability and self-efficacy in older peoplewith AMD (level II evidence).

• Additional studies, including replication studies,with robust methodology (particularly using RCTdesign and intent-to-treat analysis) are required tofurther substantiate these findings.

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