Identifying preferred format and source of exercise information in persons with multiple sclerosis that can be delivered by health‐care providers

Abstract Background There is increasing recognition of the benefits of exercise in individuals with multiple sclerosis (MS), yet the MS population does not engage in sufficient amounts of exercise to accrue health benefits. There has been little qualitative inquiry to establish the preferred format and source for receiving exercise information from health‐care providers among persons with MS. Objective We sought to identify the desired and preferred format and source of exercise information for persons with MS that can be delivered through health‐care providers. Setting and participants Participants were adults with MS who had mild or moderate disability and participated in a range of exercise levels. All participants lived in the Midwest of the United States. Methods Fifty semi‐structured interviews were conducted and analysed using thematic analysis. Results Two themes emerged, (i) approach for receiving exercise promotion and (ii) ideal person for promoting exercise. Persons with MS want to receive exercise information through in‐person consultations with health‐care providers, print media and electronic media. Persons with MS want to receive exercise promotion from health‐care providers with expertise in MS (ie neurologists) and with expertise in exercise (eg physical therapists). Conclusions These data support the importance of understanding how to provide exercise information to persons with MS and identifying that health‐care providers including neurologists and physical therapists should be involved in exercise promotion.


| INTRODUCTION
Multiple sclerosis (MS) is a disabling, degenerative and chronic neurological disease of the central nervous system (CNS). 1 Worldwide, the prevalence of MS is thought to be increasing with upwards of 2.5 million people living with the disease. 2 The damage within the CNS manifests as an increase in fatigue, motor weakness, heat sensitivity, reduced mobility, abnormal gait biomechanics, altered balance, cognitive deficits and autonomic dysfunction. It has previously been stated that rehabilitation [is] still the only way to improve function in MS, 3 and for 2 decades, there has been increasing focus on identifying rehabilitation strategies to manage such consequences in persons with MS. [4][5][6][7] Exercise is one rehabilitation strategy that has substantial evidence of efficacy in the management of many common symptoms of MS. [8][9][10][11] Researchers have suggested that exercise training may be the single most effective non-pharmacological approach for managing symptoms, 12,13 and improving health-related quality of life in persons with MS. 14 However, a significant number of persons with MS are not engaging in sufficient exercise to accrue health benefits. 15,16 A consensus meeting titled Exercise as a Prescriptive Therapy in Multiple Sclerosis provides a strong statement for exercise as one of the best therapies available for inclusion in the comprehensive care of patients with MS. 12 The chronic degenerative nature of MS results in lifelong interactions between patients and health-care providers, and these patient-provider interactions may be critical for exercise adoption and maintenance. There is evidence that persons with MS expect exercise promotion from health-care providers, [17][18][19][20] but these patients might not currently be receiving it. 17,21,22 We recently provided new information that identified the needs and wants of patients regarding exercise promotion by health-care providers through a qualitative research study of 50 persons with mild-to-moderate MS. 17 The qualitative data supported previous findings 19,20,22 and more clearly indicated that persons with MS need and expect health-care providers to promote and provide information on exercise promotion.
Our evidence is in line with general communication deficits between patients and providers in MS healthcare globally 23 and highlights the urgency of understanding and developing structured exercise communication between patients with MS and health-care providers as part of the patient provider interaction. 24,25 The next step in this line of research involves identifying the format and source of exercise information that is wanted by persons with MS.
Indeed, our previous qualitative study was comprehensively designed a priori for addressing this next research step, and we approached it separately in this study given the breadth and depth of data collected in the qualitative research we undertook. The current study will identify the preferred format through which persons with MS would like to receive exercise promotion information from health-care providers and the preferred source to receive exercise promotion information.
This information will provide practical evidence on the optimal format and source of exercise promotion information delivered within the health-care context.

| METHOD
The current research represents a further presentation of data collected during a qualitative research study that identified the healthcare experiences of persons with MS regarding exercise promotion. 17 The current research was a priori defined so that it extended the initial publication from a large, qualitative research undertaking. We received ethical approval from a university institutional review board and written consent from all research participants. All data were anonymised prior to transcription. We adopted a participatory framework 26 and included important aspects of patient and public involvement and engagement (PPIE) 27 in the design, conduct, analysis and dissemination plans of this study. We invited persons with MS and health-care providers known to the research group to collaborate on the study. We conducted research scoping meetings with our collaborators, and this helped us establish the design and methodology; for example we discussed gathering data via interviews, the content of interviews and participant inclusion criteria. Our collaborators who were experienced qualitative researchers further advised and assisted on the analysis of the data, and all collaborators advised and agreed upon the dissemination of results.
We used interpretative descriptive methodology (IDM), 28 and this allowed us to examine the person's life-experiences and opinions relevant to the clinical context of applied rehabilitation 29 and has been developed to ease the interpretation of patterns and themes emerging from clinical phenomena. 30 IDM further acknowledges that the presentation of results is guided by the authors' professional and personal opinions and knowledge. IDM is well suited for establishing the preferred mechanisms through which persons with MS would like to receive exercise promotion information from health-care providers, as it has been used in many past studies to analyse the life-experiences of those living with MS. 17,24,[31][32][33] To add credibility to our research, we incorporated participant reflection into our methodology 34 by inviting participants to provide further comment post-interview, and this was achieved through the use of (i) participant take-home journals which contained prompts of the main questions discussed, and (ii) a one-page interview summary sheet written by interviewers immediately post-interview. Both items were provided to participants to encourage reflection after the interview and served to (i) provide further data and (ii) allow researchers to establish whether post-interview opinions were similar to those expressed during the interview.

| Participant recruitment
Participants were recruited from the Midwest of the United States. To reach a large number of potential participants and reduce bias to any one form of information seeking, we chose two diverse recruitment strategies. We informed persons with MS about the study through (i) online advertisement on the National MS Society and University of Illinois websites and (ii) presentations by our research staff at regional National Multiple Sclerosis Society meetings and events. Sixty-one persons with MS were screened for eligibility: (i) age over 18 years; (ii) physician-confirmed verification of MS diagnosis; (iii) no MS relapse within past 30 days; (iv) self-report Expanded Disability Status Scale (SR-EDSS) score ≤5.5; and (v) willingness to be audio-recorded during interviews. Recruitment and reasons for non-inclusion are listed in Figure 1; 50 persons were interviewed once by one of three researchers in a private room within our research site, and interviews lasted approximately 45 minutes. Ten participants (20%) were known to researchers prior to the study, based on participation in previous research studies, but we did not target such persons for participation; this further was not an exclusion criteria. Our analysis continued concurrently with our interviews, and recruitment ceased after 50 interviews as at this point no new themes were occurring (ie saturation).

| Sample diversity
We aimed to capture experiences and opinions from persons with MS who had a range of activity levels who all had mild-to-moderate disability as a result of MS. We confirmed disability status during a neurological examination using the Expanded Disability Status Scale (EDSS). 35 During the screening phone call, we established current activity level (insufficiently active or sufficiently active) using the Godin Leisure-Time Exercise Questionnaire (GLTEQ), 36 where scores of ≤27 represented insufficiently active and scores of ≥28 represented sufficiently active according to public health guidelines.

| Procedure
Data were collected through semi-structured interviews. Interview We asked all participants about receiving exercise promotion information from health-care providers. The interviews began with general questions such as "Let's talk about your experience with exercise?" This question was then followed by more exploratory questions such as "Where do you look for information on exercise; would that be a good format to receive exercise guidance?", "What type of information or guidance would you want from your healthcare provider to help you exercise?", and "Ideally, what healthcare provider would you like to discuss exercise with?" We conducted the interviews to contain as much in-depth information as possible, and researchers were free to use inductive reasoning throughout the interview to ensure that rich data were generated.
We administered a standardised survey to capture background information on the participants' demographical (ie age, sex) and clinical (ie type of MS and years since diagnosis [YSD]) characteristics.
Participants received a journal containing the main interview questions, and a summary sheet typed by interviewers immediately postinterview; this was for the purpose of collecting further reflections.
We requested that participants return the journal and summary sheet for making further comments, and we provided a pre-stamped, preaddressed envelope. The reflective journals were analysed alongside the transcriptions. No participants returned the summary sheet.

| Analysis and presentation
Our analytic method was discussed and approved by all researchers which included persons with MS. The interviews were audiotaped, transcribed and then analysed using IDM. 28 Participants' comments from returned journals were added into respective interviews in relevant locations within the interview transcription. Researchers then listened to the interviews and read the transcripts. We analysed and organised our data following spiral analysis, 38 and this technique complements IDM as it encourages repeated immersion in the data. Our technique included listening to the interviews and organizing the data; reading and memoing the data; describing, classifying and interpreting data into codes and themes; and finally representing and visualizing the data. Throughout the process, we kept researcher Reflective Analysis Notes and we asked ourselves "What are the main thoughts we are learning from this interview?" "Why is this participant saying that?" "How does this compare with the literate?" "How does this compare with other interviews?" "What do the thoughts in this interview mean to the grander scheme?" "How does the participants interview thoughts compare with what we know about the participant?" We frequently returned to, and developed, our analytical questioning of the interview analysis as we attempted to interpret the interview, and this process provided a coherent analytical framework of interpretative description. 39 Participant demographical information (ie MS subtype, sex, age, disability level, exercise level and years since diagnosis [YSD]) were considered during analysis of each interview and later analysis of the entire sample. Analysis was performed by three researchers (BCA, JMB and YCL). We used inductive analysis to create a coding book, and this was based on open coding of six randomly selected interviews; open coding was performed independently by each researcher, and then, we met to finalise the code book. Codes were unique ideas presented by a group of participants, and within our codebook, we provided descriptors that guided researcher coding (eg Paper-participant indicates they would like a hard copy of the information), and subthemes were created from codes we considered similar (eg Print media-paper handouts and pamphlets). We engaged with our wider research team to discuss our findings and made appropriate modifications to our analysis. BCA, JMB and YCL then independently coded the remaining interviews, and all interviews were coded by two researchers who then met to finalize analysis. All three researchers discussed further modifications to the coding book, as appropriate. Finally BCA, JMB and YCL compiled the main themes emerging from the data, and these themes were discussed with the wider research team and disseminated to patients, health-care providers and researchers during a national MS conference presentation 40 and on our previous laboratory website, and regional support group meetings.

| Quality and credibility
We included patients and health-care providers in the design, analysis and dissemination plan for our research. We listened to and acted upon comments from participants in our previous research studies of patient with MS 37,41 when designing and conducting our study. We invited persons with MS and clinicians to participate in our research as advisors and co-authors. We considered feedback from the wider team and persons attending a national MS conference in the final manuscript presentation (eg clinicians encouraged us to provide depth of data on the patients perceived ideal person to promote exercise).
We ensured credibility and dependability through triangulation in our analysis wherein our primary research team independently and jointly analysed interviews and had frequent discussions with our wider research team. We ensured consistency within our primary research team by undertaking pilot interviews with persons with MS before beginning the study. We further used semi-structured interview scripts and weekly meetings to discuss interviews, transcripts and analyses. 42 We further increased credibility in our qualitative data analysis by creating a coding book early in our analysis, and this code book was refined throughout our analysis. We applied similar codes in all interviews, and all researchers used the same codes. Triangulation of sources was achieved through analysis of the transcribed interview and comments from participants' journals. 38,42 To facilitate our research findings being available to the widest possible audience (eg patients with MS and health-care providers), 43 we considered comments from patients with MS who had previously told us about valuing open-access research findings, and we acknowledged the importance patients with MS place in accessing information on the Internet. 44 To that end, our wider research team agreed to the dissemination of results in an open-access health-care journal.

| RESULTS
Data were analysed from all 50 interviews. All participants completed the survey providing demographic and clinical information, and these are presented alongside data on the overall disability level (ie EDSS) and current exercise level (ie GLTEQ) of the sample in Table 1.

| Demographic characteristics
The mean age of the sample was 49.

| Thematic findings
We analysed data from all 50 interviews. Eighteen participants returned journals comments that were added to the typed interview script and analysed accordingly. We present results from two main themes: (i) Approach for receiving exercise promotion (ie what is the optimal format of exercise promotion information?) and (ii) Ideal person for promoting exercise (ie who is the optimal source of exercise promotion information?). Our results represent the preferred format and source of exercise information for the entire sample; that is, we did not identify any formats or sources unique to participants based on MS subtype, sex, disability level, exercise level or years diagnosed.

| Theme 1: Approach for receiving exercise promotion
This theme characterised the different formats through which patients with MS want to receive information related to exercise promotion.
Participants indicated different formats for receiving the exercise promotion information, and this formed three subthemes: traditional inperson patient-provider clinical consultation, print media and electronic media, and these are displayed in Table 2.

| Traditional in-person patient-provider clinical consultation
Almost two-thirds of participants discussed a preference for receiving exercise promotion information in-person, directly from a Occasionally, some participants told us that receiving information in print format may not be ideal. This was either because print media information was associated with a lot of reading that was perceived to be difficult, or because printed information could be easily lost or misplaced. Participants deemed exercise promotion material as important and did not want to lose it, and this reflects the value they place on exercise information.

| Electronic media: DVD, online and email
Almost half of participants were interested in receiving exercise promotion via electronic media sources, including DVDs, websites with written, pictorial or video content, and email. Participants had experience following exercise DVDs, and many indicated this was helpful for following an exercise routine at home. Others wanted instructional participants admitted to not being confident using technology, and in these cases, participants voiced concern about not correctly following exercise information provided to them in an electronic format.

| Theme 2: Ideal person for promoting exercise
This theme characterises who the ideal exercise promoter would be for persons with MS, within the context of the provider's professional expertise. Two subthemes were identified: MS expertise and exercise expertise, and these are presented in Table 2.

| DISCUSSION
Exercise participation in the context of MS is a societal and clinical concern, as persons with MS are not engaging in sufficient exercise to accrue health benefits. 15,16 The current qualitative study indicated how patients with MS want to receive exercise promotion and identified the ideal source to receive this information. Persons with MS want to receive information on exercise promotion in multiple formats, and they want to receive exercise promotion from professionals primarily expert in MS. These data are the first to establish the preferred information format, and we now identify that health-care expertise is important to patients when receiving exercise promotional information.
Research from patients indicates that advice from health-care providers may be very effective in changing a patient's exercise behaviour, 45 and there is strong evidence for exercise being one of the best therapies available for managing symptoms 12,13 and must be included in the comprehensive care of patients with MS. 12 We recently established that patients with MS have a strong interest in receiving information on exercise promotion from health-care providers, yet they might not be receiving it from through health-care providers. 17 We further established the needs and wants of patients with MS including (i) information and knowledge on the benefits of exercise and exercise prescription, (ii) materials to allow home and community exercise, and (iii) tools for initiating and maintaining exercise behaviour. 17 Identifying the preferred method to deliver information on exercise promotion to persons with MS is important as we move closer to creating a conceptual model and toolbox for the promotion of exercise through the patient and health-care provider interaction.

| Information format
To ensure comprehensive exercise promotion, we must consider delivery of information and resources over three different formats.

| Information source
Health-care providers were considered trusted and credible sources of exercise information, and this is commonly perceived among person with MS. 44,46 We provide brand new information as to which pro- Notably, some participants highlight the initial role neurologists might have in initiating exercise behaviours and the importance of then liaising with those more knowledgeable in exercise.
Clinical implementation might involve coordination, liaison and improved communication between health-care providers (eg neurologists and physical therapists), and this might be performed through traditional face-to-face meetings or through the use of modern technology to communicate clinical results and expert opinion. We acknowledged that many of our results were experiential in that participants needed and wanted health-care promotion in formats and from sources that were familiar to them. Suggestions in the literature indicate that poor familiarity with health-care information might reduce patients' ability to access health-care information. 47 Therefore, we might better inform people with MS of the current exercise promotion options available to them and then seek to improve upon these models.
We note some limitations of this study, and these are countered by much strength. We acknowledge that we recruited persons with mild-to-moderate MS disability, and our results may not be applicable among those with severe disability. We recruited only persons from the Midwest USA, and patient experiences and access to healthcare services may differ across local and international borders, and it is therefore important for future investigation of patients' preferred format and source of exercise information to be investigated globally.
Our use of spiral analysis, involvement of multiple researchers to independently and jointly analyse data and triangulation of data sources are strengths of this study which help ensure the data are a true representation of what was said by participants. Our use of a participatory framework and adoption of patient involvement and engagement in the design, conduct and interpretation of our results lessen the impact of any potential researcher bias resulting from our belief that exercise is beneficial for persons with MS and that there is a need to increase overall participation by persons with MS. Further, our use of PPIE throughout the research process strengthens the importance of our findings.

| CONCLUSION
The low level of exercise uptake in persons with MS is a societal and clinical concern. Recent research indicates that persons with MS want to receive information about exercise and its promotion from healthcare providers. The current data underscore how to provide exercise information to patients with MS and identify that many health-care providers must be involved in exercise promotion. Based on the views and opinions of participants in our study, it is clear that we must ensure that health-care providers are prepared to provide exercise information to patients, research and develop exercise promotion material in print media, and establish credible electronic sources of exercise promotion for persons with MS.