8
From the *Mayo Clinic, Rochester, Minnesota, Minnesota; School of Nursing, University of Minnesota, Minneapolis; University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania. Address correspondence to Catherine E. Vanderboom, PhD, RN, Department of Nursing, Mayo Clinic 200 First Street SW, Rochester, MN 55905. E-mail: vanderboom.catherine@ mayo.edu Received August 17, 2012; Revised November 8, 2012; Accepted December 23, 2012. 1524-9042/$36.00 Ó 2013 by the American Society for Pain Management Nursing http://dx.doi.org/10.1016/ j.pmn.2012.12.001 Feasibility of Interactive Technology for Symptom Monitoring in Patients with Fibromyalgia --- Catherine E. Vanderboom, PhD, RN, * Ann Vincent, MD,* Connie A. Luedtke, MA, RN,* Lori M. Rhudy, PhD, RN, *,and Kathryn H. Bowles, PhD, RN, FAAN - ABSTRACT : Use of health information technology (IT) integrated with clinical services has the potential to empower self-management and decrease health care utilization for chronic disorders such as fibromyalgia (FM). However, the appropriate methodology that systematically facilitates the integration of health IT with clinical services between patients and nurses partnering to manage FM is unclear. The purpose of this study was to determine the feasibility of technology-enhanced monitoring that engages FM patients using a mobile device. A quanti- tative and qualitative descriptive design was used in a convenience sample of 20 FM patients. Patients used a mobile monitoring device for one week; nurses responded to patient e-mailed symptom reports on a daily basis. Analysis was primarily descriptive—percent, frequen- cies, and means for individual questionnaire items and subscales were calculated. For qualitative data, a 1 hour focus group was audio- recorded, transcribed verbatim, and then analyzed using content analysis. All participants used a mobile phone in their daily lives; half used a smart phone. Participants were interested in using a smart phone to monitor their health and to communicate with health care providers. Participants used the study mobile device an average of 5.2 days out of the 7 day study period. Most participants (80%) reported that monitoring symptoms using the device was easy to do. Sixty-five percent felt that using the device helped them to promptly address their symptoms. Results from this study indicated that health IT integrated with clinical services is feasible to monitor FM symptoms and to communicate with the care team. Ó 2013 by the American Society for Pain Management Nursing INTRODUCTION Health information technology (IT)-focused system redesign is transforming the delivery of care for individuals with chronic conditions in the United States (Coye, Haselkorn, & DeMello, 2009). Technology used for health applications Pain Management Nursing, Vol -, No - (--), 2013: pp 1-8 Original Article

Feasibility of Interactive Technology for Symptom Monitoring in Patients with Fibromyalgia

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Page 1: Feasibility of Interactive Technology for Symptom Monitoring in Patients with Fibromyalgia

Original Article

From the *Mayo Clinic, Rochester,

Minnesota, Minnesota; †School of

Nursing, University of Minnesota,

Minneapolis;‡University of

Pennsylvania School of Nursing,

Philadelphia, Pennsylvania.

Address correspondence to Catherine

E. Vanderboom, PhD, RN, Department

of Nursing, Mayo Clinic 200 First

Street SW, Rochester, MN 55905.

E-mail: vanderboom.catherine@

mayo.edu

Received August 17, 2012;

Revised November 8, 2012;

Accepted December 23, 2012.

1524-9042/$36.00

� 2013 by the American Society for

Pain Management Nursing

http://dx.doi.org/10.1016/

j.pmn.2012.12.001

Feasibility of InteractiveTechnology for SymptomMonitoring in Patientswith Fibromyalgia

--- Catherine E. Vanderboom, PhD, RN,* Ann Vincent, MD,*

Connie A. Luedtke, MA, RN,* Lori M. Rhudy, PhD, RN,*,†

and Kathryn H. Bowles, PhD, RN, FAAN‡

- ABSTRACT:Use of health information technology (IT) integrated with clinical

services has the potential to empower self-management and decrease

health care utilization for chronic disorders such as fibromyalgia

(FM). However, the appropriate methodology that systematically

facilitates the integration of health IT with clinical services between

patients and nurses partnering to manage FM is unclear. The purpose

of this study was to determine the feasibility of technology-enhanced

monitoring that engages FM patients using a mobile device. A quanti-

tative and qualitative descriptive design was used in a convenience

sample of 20 FM patients. Patients used amobilemonitoring device for

one week; nurses responded to patient e-mailed symptom reports on

a daily basis. Analysis was primarily descriptive—percent, frequen-

cies, andmeans for individual questionnaire items and subscales were

calculated. For qualitative data, a 1 hour focus group was audio-

recorded, transcribed verbatim, and then analyzed using content

analysis. All participants used a mobile phone in their daily lives; half

used a smart phone. Participants were interested in using a smart

phone to monitor their health and to communicate with health care

providers. Participants used the study mobile device an average of

5.2 days out of the 7 day study period. Most participants (80%)

reported that monitoring symptoms using the device was easy to do.

Sixty-five percent felt that using the device helped them to promptly

address their symptoms. Results from this study indicated that health

IT integratedwith clinical services is feasible tomonitor FM symptoms

and to communicate with the care team.

� 2013 by the American Society for Pain Management Nursing

INTRODUCTION

Health information technology (IT)-focused system redesign is transforming the

delivery of care for individuals with chronic conditions in the United States(Coye, Haselkorn, & DeMello, 2009). Technology used for health applications

Pain Management Nursing, Vol -, No - (--), 2013: pp 1-8

Page 2: Feasibility of Interactive Technology for Symptom Monitoring in Patients with Fibromyalgia

2 Vanderboom et al.

includes the Internet, smart phones, text messaging,

and e-mail to facilitate electronic patient monitoring,

education, and support programs (Boland, 2007).

Health IT-based models of care, however, need to be in-

dividualized to the needs of disease specific popula-

tions (Brennan et al., 2006).

Fibromyalgia (FM) is a resource intensive chronicpain disorder requiring substantial health care re-

sources (Berger, Dukes, Martin, Edelsberg, & Oster,

2007; Berger et al., 2010; Sanchez et al., 2011;

Thompson et al., 2011). Use of health IT for chronic

conditions such as FM has the potential to decrease

health care utilization while empowering patients

in appropriate self-management. The purpose of our

study was to determine the feasibility of addingtechnology-enhanced self-management support for

symptom monitoring in patients with FM to the stan-

dard clinical care. Specifically, we sought to achieve

the following: Aim 1, determine participant’s current

use and perceived value of technology to support

self-management; Aim 2, evaluate the use of a mobile

device to monitor and manage symptoms; and Aim 3,

determine the feasibility of study procedures.

Theoretical FrameworkThis study is grounded in the theoretical and em-

pirically based Chronic Care Model developed by

Wagner et al. (2001) in response to the recognition

of widespread inefficiencies and ineffectiveness ofchronic illness care and the effectiveness of a multi-

faceted, evidence-based model that includes self-

management support and use of health IT.

METHODS

A descriptive design including quantitative and qualita-tive approaches was used.

Sample and SettingA convenience sample of 20 patients who had com-

pleted an existing FM treatment program in the

Midwest participated in the study. Patients were in-vited to participate in a focus group; five individuals

participated.

InstrumentsParticipants’ current use of technology (Aim 1) was

measured at baseline using a seven-item survey devel-oped by the investigator for the purposes of this study.

Participants reported at baseline their current use of

technology in general and their use of technology for

obtaining health information. Patient interest in using

technology in the future was also assessed.

Use of the monitoring device (Aim 2) was mea-

sured in two ways: (1) by the Perceived Ease of Use

(PEU) and Perceived Usefulness (PU) Questionnaires

and (2) by actual use of the monitoring device. The

PEU/PU questionnaires were developed to assess the

quality of a computer information technology (Davis,

1989). These measures were adapted for use withnurses (Dillon, McDowell, Salimian, & Conklin, 1998)

and have been recently adapted for use by patients

(Or et al., 2011). Research supports convergent, dis-

criminant validity and internal consistency (Cron-

bach’s alpha reliability ¼ 0.94 for the PEU and 0.98

for the PU) (Davis, 1989). The questions address the

degree to which the technology has improved patients’

ability to manage their condition and the effort re-quired to do so. The questionnaires were adapted by

the investigators for use by FM patients to identify

the usability of a mobile device for monitoring and

self-managing their condition.

Use of the monitoring device was measured by

daily reports sent by participants from their device to

the study coordinator. The monitoring device con-

sisted of a mobile device (an iPod touch, similar toa smart phone but equipped only with WiFi technol-

ogy) and a freely available pain/symptom monitoring

application (My Pain Diary). Pain, fatigue, and activity

were measured on a scale of 0 (none) to 10 (extreme

pain/fatigue or vigorous activity). Pain and fatigue are

the top two patient-reported symptoms and have tradi-

tionally been monitored because of their high fre-

quency of occurrence in FM patients (Mease et al.,2008); level of activity is a core self-management activ-

ity taught in the FM treatment program (Vincent et al.,

In press). The monitoring device used a wireless Inter-

net connection to allow participants to send and re-

ceive e-mail. A mobile device was selected for use

because mobile devices such as cell phones are widely

used among diverse populations, so there is no need to

buy another device strictly for health monitoring(Boland, 2007).

Feasibility of study procedures (Aim 3) was evalu-

ated by obtaining participant perceptions via a focus

group. Study feasibility was also determined by moni-

toring study activities, including the ability to recruit

and retain participants for the duration of the study

and to identify any problems with using the

technology.Semi-structured interview questions were used to

guide a focus group in which participants were asked

to describe (1) their experience with the monitoring

device, (2) additional features that would be helpful

in managing symptoms, (3) additional symptoms that

should be monitored, (4) the nature of the communica-

tion between the patient/nurse, and (5) comments

Page 3: Feasibility of Interactive Technology for Symptom Monitoring in Patients with Fibromyalgia

3Interactive Technology for Symptom Monitoring

about strengths and problems associated with the use

of the monitoring device.

ProceduresThe study was approved by the Institutional Review

Board. Participants were recruited from an outpatient

FM treatment program. All patients who went through

the FM treatment program during a 4-month periodwere provided information about the study (April

through July, 2011). Interested patients met with

a study coordinator at the end of the last FM treatment

program session. The study coordinator obtained in-

formed consent and baseline data upon enrollment.

Participants were provided with a mobile monitoring

device (an iPod Touch) that included a freely available

pain-monitoring app (My Pain Diary) to monitor theirpain, fatigue, and activity during the study period.

The study coordinator helped the patients establish

a Gmail account with a coded name for the purposes

of transmitting data collected by the My Pain Diary

app to the study coordinator. This account was sepa-

rate from their personal e-mail account. Participants

were instructed in the use of the device and the app

and were instructed to call the study coordinator ifthere were questions or problems with the device.

The study coordinator offered to make a home visit

to participants to help with connecting the device to

a wireless home network or to assist with other techni-

cal issues that might develop. Patients were given post-

use questionnaires and a return envelope to return the

mobile device and questionnaires at the completion of

the 1-week trial. Participants received an FM-relatedbook upon completion of the self-monitoring experi-

ence and return of the mobile device.

The InterventionPatients were instructed to rate their pain, fatigue, and

activity using the monitoring device three times per

day (morning, noon, evening) for a 1-week time pe-

riod. Coded e-mails containing the three monitoring

reports from the previous 24 hours were generatedby the My Pain Diary app and transmitted to a study co-

ordinator the following morning. Participants returned

the monitoring device either in person or by mail at the

end of the study period. The monitoring device was

erased and reset after each 1-week trial for use by the

next patient.

A study coordinator transferred the results from

the patient monitoring reports to a spreadsheet ande-mailed the monitoring reports to an experienced

FM R.N. on the day they were received from the pa-

tient. The nurse responded to patient monitoring re-

ports on a daily basis using primarily telephone calls

and occasional e-mails that encouraged participants

to use the self-management strategies that participants

had learned during the FM treatment program. Tele-

phone responses are commonly used in clinical areas

and likely provide a comfortable method for nurses

to provide a personal, one-on-one response.

Data AnalysisQuantitative and qualitative analysis were mergedto evaluate study aims. Because this was a feasibility

study, analysis was primarily descriptive—percent, fre-

quencies, and means for individual questionnaire items

and subscales were calculated. For qualitative data,

a facilitator experienced in the conduct of focus

groups moderated the 1-hour session.

A semi-structured interview guide was used to

guide the discussion. Additional probes were usedas concepts emerged. The focus group was audio-

recorded, transcribed verbatim, and then analyzed us-

ing content analysis (Krippendorff, 2004). NVIVO 9

(QSR International) was used to aid in categorization

and coding of data. Text was coded into related cate-

gories and subcategories.

RESULTS

As expected with FM patients, participants were Cau-

casian and female, and all had at least some college

education (Table 1).

Aim 1 ResultsUse and value of technology by study participants is

described in Table 2. All participants used a mobilephone; more participants used a smart phone than

a traditional cell phone. Participants primarily used

their mobile phones for making telephone calls

(90%) and for text messaging (70%). All participants

with smart phones used some sort of ‘‘app’’ on a regular

basis. Nearly all participants accessed the Internet

from their homes and used the Internet to learn

more about FM.In terms of future use, a high percent (85%) of par-

ticipants were interested in tracking symptoms com-

monly reported by FM patients. Participants indicated

that using a mobile device to communicate with health

care providers would be very helpful (7.5 on a scale of

10). Electronic mail (e-mail) was the highly preferred

(90%) mode of communication. Only 60% of partici-

pants were interested in using social networking tocommunicate with other FM patients.

Aim 2 ResultsUsability of monitoring device is reported for actual

use of the device and secondly by participant re-

sponses to the PEU and PU Questionnaires. Use of

Page 4: Feasibility of Interactive Technology for Symptom Monitoring in Patients with Fibromyalgia

TABLE 1.

Participant Characteristics (N ¼ 20)

N %

GenderFemale 20 100Male 0 0

EthnicityWhite (not Hispanic) 20 100Other 0 0

Marital StatusSingle 0 0Married 11 55Separated 1 5Divorced 7 35Widowed 1 5

EducationSome High School 1 5Some College 5 25Associate Degree 3 15Bachelor Degree 8 40Post-graduate Education 3 15

TABLE 2.

Use and Value of Technology (N ¼ 20)

N %

Current Use:Do you use a computer or mobilephone? (Yes)

20 100

What kind of mobile phone do you use?Smart Phone 12 60Traditional cell phone 8 40

How do you use your mobile phone?Making phone calls 18 90Text messaging 14 70Games 6 30Applications (‘‘apps’’) 6 30Social networks (e.g., Facebook) 5 25Search 5 25Other 3 15

Where do you access the internet?Home 19 95Other 12 60

Do you use the internet to learn aboutfibromyalgia? (YES)

19 95

Value for Future Use:Interested in a mobile symptom tracker in the future?Yes 17 85No 3 15

What symptoms would you be interested in tracking?Fatigue/energy 17 85Pain/comfort 16 80Activity/exercise 16 80Sleep 15 75Mental fogginess 14 70Mood 11 55Other 2 10

Interested in using social network toconnect with others with FM? (YES)

12 60

How would you prefer to communicate with health careproviders?

E-mail 18 90Text message 7 35Phone 4 20Website 1 5

4 Vanderboom et al.

the monitoring device is displayed in Table 3. Par-

ticipants used the monitoring device an average of

5.2 days out of the 7-day study period. The average

pain and fatigue levels were reported at approximatelymidrange, 4.6 and 5.2, respectively, out of a possible

score of 10. Activity levels were quite low at 3.0 of

a possible 10.

Participant’s PEU and PU scores are included in

Table 4. Overall, most participants (80%) found the

monitoring device easy to use. Participants reported

that learning to operate the monitoring device was

easy and that it was easy to interact with (75%). Fewerfound the monitoring device easy to configure (70%).

PU scores were generally lower than PEU scores;

however, three quarters of participants found the mon-

itoring useful for managing their FM. More than half in-

dicated that using the monitoring device gave them

greater control over their FM, and 65% felt it helped

them to manage their condition more quickly. Sixty

percent of participants indicated that using the moni-toring device supported critical aspects of managing

their FM. All participants felt that use of the monitoring

device made it easier to inform the care team about

their condition.

Aim 3 ResultsThe feasibility of study procedures included the partic-ipants’ feedback obtained during a focus group, re-

sponses to a brief questionnaire, and monitoring of

the study conduct including our ability both to recruit

and retain participants in the study and to efficiently

address any technical problems.

Patient Focus Group. At the completion of the

study, 13 participants were called and invited to partic-

ipate in a focus group. Nine individuals agreed to at-

tend, and five actually participated in the focus group.

Findings fell into two domains or categories with

subcategories in each. The first category described us-

ing the mobile device for self-management. The second

category related to device usability.Self-management. Participants identified several

aspects related to using the monitoring device for self-

management, including (1) tracking progress over

time, (2) balancing attention to symptoms, and (3)

nurses reinforcing self-management. The most prevalent

Page 5: Feasibility of Interactive Technology for Symptom Monitoring in Patients with Fibromyalgia

TABLE 3.

Use of Monitoring Device

Mean SD Median Range

Frequency of use over7 days (in days)

5.2 2.2 6 0-7

Symptom scores*Pain 4.6 1.2 4.7 2.3-7.0Fatigue 5.2 1.5 5.0 1.1-8.0Activity 3.0 1.0 3.0 1.3-5.0

*Averages of the 21 pain, fatigue, and activity reports from the mobile

device (7 days � 3 times a day ¼ 21 reports). Range for each report is

0 (none) to 10 (extreme/high).

5Interactive Technology for Symptom Monitoring

response was the benefit of being able to track their

symptoms and progress over time. Participants feltthat the ability to track progress provided a tool for re-

flection on what was different during a certain day or

time period and to identify triggers that could be antic-

ipated and managed. One participant described the

value of the monitoring device as something that

helped them with ‘‘Really seeing how off I was. It

was no balance for me. And seeing it and getting the

information, I realized I didn’t have it under control.By seeing it, I was able to figure out what I was going

through because it is all new for me.’’ When asked

about the value of the device, another participant re-

sponded ‘‘Yes, I really did like it, because it..by me

TABLE 4.

Perceived Usability of the Monitoring Device (N ¼ 20)

Instrument and Variables

Perceived Ease of Use

Learning to operate the application was easy for me.Interaction with application was easy for me.I find it easy to get application to do what I want it to do.It is easy for me to remember how to perform tasks with applicMy interaction with application is clear and understandable.Overall, I feel that application is easy for me to use.

Perceived Usefulness

Use of application improves the quality of managing my conditiUsing application gives me greater control over my condition.Application enables me to manage my condition more quickly.Application supports critical aspects of managing my conditionApplication improves my monitoring of my condition.Application enhances my effectiveness in managing my conditiApplication makes it easier to manage my condition.Application makes it easier to inform care team about my condOverall, I feel the application is useful in managing my condition

seeing it while I reported it, I can see that I was really

out of control. It was really kicking my butt.’’

In addition to monitoring their own status, partic-

ipants unanimously indicated that the nurse feedback

served a valuable role in reminding them to use strate-

gies they had learned previously. Participants indicated

that the bulk of the feedback they received was sup-portive and drew their attention to specific strategies.

Participants suggested that ‘‘forgotten’’ strategies were

revisited and found to be helpful. The nurse feedback

was also helpful in situations for which they were not

sure if the symptoms related to FM or some other prob-

lem. One of the participants affirmed that, ‘‘the more

beneficial part of it for me was the reminders of

what I already knew. And I haven’t got the book outfor a while, so even a weekly reminder of when was

the last time you did your stretches or did you take

time to do your breathing exercises, and stuff like

that. And if you are having a low time, maybe they

have something specific they can tell you.’’ Another

participant answered similarly, ‘‘Yes, I took my regular

exercise routine again, because I forgot it, it was one of

the things the nurse reminded me to do. She said haveyou tried these exercises..So I got all my stuff from

class and incorporated some different things that I ha-

ven’t thought to do recently.’’

While the ability to receive support from the nurses

was overall a positive thing, a need for balance between

Agree Disagree

N (%) N (%)

16 (80) 4 (20)15 (75) 5 (25)14 (70) 6 (30)

ation. 16 (80) 4 (20)16 (80) 4 (20)16 (80) 4 (20)

Agree Disagree

N (%) N (%)

on. 13 (65) 7 (35)11 (55) 9 (45)13 (65) 7 (35)

. 12 (60) 8 (40)18 (90) 2 (10)

on. 14 (70) 6 (30)14 (70) 6 (30)

ition. 20 (100) 0 (0). 15 (75) 5 (25)

Page 6: Feasibility of Interactive Technology for Symptom Monitoring in Patients with Fibromyalgia

6 Vanderboom et al.

tracking progress and placing undue attention on

symptoms was identified. Participants expressed dissat-

isfaction with the scheduled three-times-per-day check-

in, in part because they viewed this as directing focus

to their symptoms. This was in direct conflict with their

efforts to maintain positive thoughts or to distract one’s

self, both strategies taught in the treatment program.They perceived that frequent attention to and reporting

of symptoms placed emphasis on them, as one partici-

pant explained, ‘‘I have been dealing with it for a long

time, and my method of dealing with it is to ignore it,

so to focus on how I feel this morning when I get up,

I never feel good when I get up, so there is no sense

to have something to remindme how I feel.So to focus

too much on the pain and how you are feeling is notgood for me, and I am used to not doing that.’’

Device Usability. Device usability fell into two sub-

categories: appropriateness of data categories in the app

andburden of using the device. Learning to use the device

was not described as particularly problematic, but having

a reference guide to refer to after the trainingwas stated as

a needed addition to the intervention. One participant

made this recommendation explicitly, ‘‘I think it wasnice when we went through it at the beginning, but I for-

got a lot of the informationwhen I got home, and itwould

be nice to have a guide.’’ Another participant expressed

acceptance of the challenge of learning to use the device,

‘‘the device itself was like any other technology you need

to figure out how to use it. And get used to it.’’

One particular problem participants struggled

with was how to make changes when the data cate-gories or choices did not reflect what they wanted to

report. In particular, adjectives and locations for pain

description were limited, as one participant described,

‘‘some of the pain categories.it would be nice if you

could add different adjectives, and I know you

could.but I don’t remember how to do it, because

on some days none of those adjectives describe what

you were dealing with that day, so you have to put ‘oth-er’.So a little more information about how to do that,

so you can be more specific. It would be helpful.’’

Participants engaged in discussion about the over-

all burden of using the device for symptom mana-

gement. The need to develop a routine around

inputting data into the device emerged as a key con-

cept. Determining when and how to incorporate the

device into daily routine in addition to stopping tothink about the type and severity of symptoms experi-

enced were both important considerations during this

discussion. As with finding balance versus undue atten-

tion, using the device at a time and frequency that did

not overly emphasize symptoms was important to par-

ticipants. One participant spoke about the challenge of

incorporating use of the device into daily routine, ‘‘I

found it kind of useless, because oh yeah I have to re-

member to do that.it is not part of my routine. You

have it figure out, so you get used to it and remember

to do it..get it part of your routine’’ while another

spoke about the challenge of remembering to use the

device during busy times, ‘‘I remembered to kind of

mentally to catalog it, but when I was at work,I didn’t have time to stop and do it, and then you got

busy with something else and you forgot, and then

you went back and tried to recreate from memory.’’

Some participants indicated a preference to use

a computer or web-based application on a desktop com-

puter over the mobile device, in part because they were

already using the computer for work and other activities

on a daily basis, thus it was already part of the dailyworkflow and so would be viewed as less obtrusive.

Managing the small keyboard of the mobile device

was undesirable for all but one participant.

Participant Engagement. It was possible to recruit

and engage participants for the duration of the study;

83% of patients completed the study. Two eligible pa-

tients declined to participate, because they did not

have access to wireless Internet connections. Four par-ticipants withdrew due to moving from the area, family

issues, and limited ability to send e-mail reports (partic-

ipant did not have a wireless connection at home and

declined to use wireless at another location).

Technical Challenges. Despite participants’ interest

and training in using the monitoring device, several

patients experienced technical challenges using the

device, and a few had difficulties with the pain-monitoring app. The most common technical difficulty

was in connecting with a wireless network. In two

cases, the study coordinator made a home visit to assist

participants making the wireless connection. For some

participants, the pain monitoring application was not

always specific enough to address their complaints, es-

pecially in terms of the location and type of pain. Par-

ticipants would like more options for describing theirpain. Patients were instructed to include this informa-

tion in the comments section of the pain report as

needed.

DISCUSSION

The results of our study demonstrate that use of health

IT (mobile monitoring device) is feasible for symptom

monitoring in patients with FM as evidenced by

the fact that all participants were highly engaged insymptom monitoring and self-management using the

monitoring device. One reason for this may be that

symptom monitoring may provide a cognitive frame-

work for patients to better understand the nature and

fluctuation of their symptoms including the

Page 7: Feasibility of Interactive Technology for Symptom Monitoring in Patients with Fibromyalgia

7Interactive Technology for Symptom Monitoring

interrelatedness of symptoms. This enhanced aware-

ness could serve as a catalyst for better symptom man-

agement. However, it was clear that both the nature of

the questions and the ease of using the technology

would need to be enhanced before health IT could

be systematically studied for its potential as a long-

term symptom management aid. Further study isneeded to determine how long patients would be will-

ing to engage in symptom monitoring.

Because our primary question is feasibility and not

efficacy, we are unable to comment on the short- or

long-term efficacy of such a health care model. How-

ever, research from other chronic disease populations

indicates that patient support, education, and self-

management support enhance the ability of individualsto cope with chronic illnesses (Dietrich et al., 2004;

Llor, Moragas, Miravitlles, & ESAB study, 2012; Luptak

et al., 2010; Tran et al., 2008). Our preliminary data

provide a foundation for further study of the question

of efficacy through a subsequent clinical trial.

Participants perceived the interaction with the FM

nurse to be valuable. Participants unanimously indi-

cated that the nurse feedback served a valuable rolein reminding them to use previously taught coping

strategies and that the nurse assisted in situations for

which they were not sure if their symptoms were

from FM or some other problem. Self-management

was supported by nurse reminders of strategies from

prior education. Patients appreciated the nurses’ rec-

ognition of problems and reinforcement of strategies.

This finding supports the value of prior education onsymptom management that was foundational for use

of the mobile device as a reminder to apply strategies

to problems that develop. Interactions with the nurse

did not need to be frequent, but their response pro-

vided valuable assistance to patients to recognize

subtle cues that needed to be addressed with self-

management strategies to proactively manage their

condition. Interactions with a nurse have potential toimpact outcomes, because these interactions prompt

patients to change their behavior.

Although the monitoring device helped patients

to develop insight into symptom triggers, technical

support for data aggregation is a key component for

subsequent wide-scale implementation. A mechanism

to obtain, organize, and present data in a meaningful

way over time for both patients and clinical staff is crit-ical. Additionally, the monitoring device needs to be

supported on multiple platforms in addition to the

mobile device used in the study and for individuals

who use a computer in their daily activities.

Study LimitationsThe sample sizewas small, indicating theneed for a larger

sample that includes more diversity in age, culture, and

geographic region. Although the sample included only

educated, female participants, these characteristics are

similar to the FM population in general. Additionally,

there is the likelihood of self-selection bias, andmost par-ticipants had experience with the use of smart phones.

We recognize that there could be a relationship between

the length of time since diagnosis with FM and knowl-

edge level for managing FM, which may have impacted

outcomes and will be included in a subsequent study.

The investigator developed questions about participant’s

current use and value of health ITwere developed to ad-

dress a study question and are recognized as a study lim-itation. Further study is needed to identify possible

differences in monitoring and support needs based

on time since diagnosis and experience with self-

management. Finally, the technology used in this study

was quite limited but provided us with beginning evi-

dence for addressing the use of technology for monitor-

ing chronic health conditions in future studies.

CONCLUSIONS

Monitoring subtle changes in symptoms as a cue fortaking appropriate action is a key element of self-

management. Patients valued the use of the mobile

device as a way to monitor symptoms over time. Un-

derstanding and responding to data trends is viewed

as an adjunct to managing symptoms. Monitoring using

a mobile device was well accepted by participants;

however, a balance needs to be achieved between ad-

dressing symptoms without forcing the individual toplace undue attention on them. Findings from this

study suggest that use of a mobile device and monitor-

ing software has potential to help patients better man-

age this chronic condition.

Acknowledgments

This study was funded by the Mayo Clinic Nursing Research

and Evaluation Committee. Monitoring devices were provided

by Mayo Clinic Global Products and Services. The authors

wish to thank Joel Pacyna for editing, preparation of tables,

and manuscript submission, and Adriana Delgado for provid-

ing ongoing support and encouragement to study participants.

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