Multiple sclerosis patients need and want information on exercise promotion from healthcare providers: a qualitative study

Abstract Background There is growing recognition of the benefits and safety of exercise and its importance in the comprehensive care of persons with multiple sclerosis (MS), yet uptake is low. Objective We explored the needs and wants of patients with MS regarding exercise promotion through healthcare providers. Setting and participants Participants were adults with MS who had mild‐or‐moderate disability and 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. Two themes emerged, namely interactions between patients and healthcare providers and needs and wants of patients. Results Analysis of participant accounts illustrate that current exercise promotion by healthcare providers does not meet patient needs and wants. The identified needs and wants of persons with MS involved (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. Discussion and conclusion Patients with MS frequently interact with healthcare providers and are generally unsatisfied with exercise promotion during interactions. Healthcare providers can address the low uptake of exercise among persons with MS by acting upon the identified unmet needs involving materials, knowledge and behaviour change strategies for exercise.


| 575
There is substantial evidence for the benefits of exercise in MS.
Exercise has been associated with reductions in fatigue and depression, and improvements in mobility and QOL. [6][7][8] There are additional benefits including improvements in cardiorespiratory capacity, muscle strength and endurance, and balance. 9 Such evidence was reviewed in a consensus meeting, titled Exercise as a Prescriptive Therapy in Multiple Sclerosis, wherein there was a strong statement for exercise as one of the best therapies available for inclusion in the comprehensive care. 10 Nevertheless, persons with MS do not engage in sufficient amounts of physical activity for health benefits. 11,12 The evidence of substantial benefits, yet lack of participation underscores the importance of identifying new opportunities for promoting and sustaining exercise in MS.
There is evidence from a survey-based study of 930 Americans with MS indicating that patients wanted considerably more information about exercise and nutrition in the context of coordinated healthcare services. 13 These data from the 930 Americans with MS align with a recent systematic review that identified the importance of on-going healthcare provider input for exercise promotion among persons with MS. 14 That same review indicated many persons with MS were receiving minimal or conflicting advice on exercise from healthcare providers. 14 The chronic degenerative nature of MS results in lifelong interactions between patients and healthcare providers, and these interactions may be critical for exercise adoption and maintenance.
The development of interventions that capitalise on the interaction between patients with MS and healthcare providers should be grounded in an established theoretical framework and informed by the specific population for maximising relevance. One theory that can predict exercise behaviour is social cognitive theory (SCT), 15,16 and there have been a series of theory-based physical activity interventions underpinned by SCT in MS. 17 These interventions address behaviour change through the provision of exercise information and behavioural strategies.
There is minimal research about the healthcare experiences of persons with MS, 18 and there is increased importance in the patient experience as a means to improve healthcare services. 19 The ultimate goal of our research involves empowering persons with MS to benefit from rehabilitation strategies, particularly exercise participation. The objective of this research involved the provision of information about the needs and wants of patients from healthcare providers regarding advice, support and resources for participating in exercise. The central question was, 'What do patients need and want from healthcare providers regarding advice, support, and resources for participating in exercise?'

| Study design
Ethical approval was granted by a university institutional review board and all participants provided written informed consent and physician verification of MS. The current study adopted a participatory framework 20,21 that involved development and analysis by key stakeholders (i.e. patients and healthcare providers). Patients were further involved as we interviewed 50 persons with MS about unmet needs and wants for exercise promotion through healthcare providers. To locate this study within our existing knowledge of exercise behaviour in persons with MS, we used an interpretive description methodology (IDM) 22 as it allows for an examination of a person's life-experiences which are presented in the person's own words. IDM further acknowledges that the summary of results is guided by the researchers' (including patients and healthcare providers) professional and personal views and knowledge. IDM is particularly suited for discovering the needs and wants of MS patients regarding exercise promotion by healthcare providers as it has been used in many past studies to analyse the life-experiences of those living with MS. 21,[23][24][25] The concepts of SCT guided our analysis of the data and inform the discussion of results.

| Participant recruitment
Participants were recruited from the Midwest of the United States.
Potential participants were informed of the study directly through To avoid influencing participants, the research site was not associated with any health care institution and the room was void of any healthcare or exercise information.

| Disability and exercise groups
We aimed to capture the needs and wants of MS patients regarding exercise promotion by healthcare providers from a representative sample of persons with MS. We recruited participants with MS who had mild-to-moderately disability. We further sought to recruit participants who varied in current exercise levels. We established disability group (mild or moderate) and current exercise level (insufficiently active, moderately active or sufficiently active) based on standardised cut-points 26,27 using the self-reported Expanded Disability Status Scale (SR-EDSS) 28 [30][31][32][33][34] where it is recommended that 6-8 participants be recruited per heterogeneity (e.g. mild disability, insufficiently active). 34 The high number of participants allowed us to compare experiences of participants who were insufficiently and moderately active with those who were sufficiently active.

| Procedure
We undertook one-to-one, semi-structured interviews, and the script is in Table 1. Consistent with our participatory framework, we engaged patients and healthcare providers in the development and analysis of our research. The interview questions were developed based on discussions among the entire research team that included researchers, persons with MS and healthcare providers. The research team believed that exercise is beneficial for persons with MS and that there is a need to increase overall participation. Interviewers had more than 3 years of experience conducting research in MS. Interviewers used standardised prompts within the interview, and the same basic interview outline was used in all interviews. Consistent with IDM interviewers were free to use inductive reasoning throughout the interview to ensure rich data were generated.
We administered a standardised survey to capture background information on the participant's demographic (age, sex, education and ethnicity) and clinical (type of MS, and years since diagnosis) characteristics, and the type of healthcare professionals seen for MS care in the past 12 months. We established patient-reported health promotion from healthcare providers using a version of the Health Promotion F I G U R E 1 Participant recruitment and number of participants representing each disability and activity group. Note: Disability and activity level based on the self-reported Expanded Disability Status Scale (SR-EDSS) 23  and Education survey (mHPES) 35 modified to focus on MS healthcare.
Scores on the mHPES range from 0 to 11 where higher scores indicate the participant has received more health promotion and education from a healthcare provider. The fourth question on the mHPES focuses on healthcare provider discussions regarding exercise or physical activity.
Following the interview participants received a journal containing the main interview questions, and this was for collecting further reflections.
Each participant received a personalised take-home summary sheet containing the interviewer's immediate interpretation of the interview. The journal was returned through the United States Postal Service using a pre-stamped, pre-addressed envelope 1 week after the interview session. The reflective journals were analysed alongside the transcriptions.

| ANALYSIS AND PRESENTATION
Our analysis method was discussed and approved by all researchers.
The recorded interviews were transcribed and then analysed using IDM. 22 To further ensure patient participation comments from participants, journals were added to their transcribed interview. We organised our data following spiral analysis. 33  We continually spiralled back to our data as we began to understand the subthemes and themes that emerged from the interviews.
We were aware of variability between participants (e.g. disability level and current exercise level), and we used this information to better understand our overall interpretations. We identified relevant codes, and six subthemes emerged from those codes that yielded two higherorder themes: (i) interactions between patients and healthcare providers and (ii) needs and wants.
To facilitate our research findings being available to the widest possible audience (e.g. patients with MS and healthcare providers), 36 our wider research team agreed to the dissemination of results in an open access healthcare journal. In our presentation, we focused on thematic differences in our six heterogeneous groups, and during our analysis, we were particularly interested in the experiences of sufficiently active groups (i.e. Groups 3 and 6) in comparison with experiences of those who were less active (i.e. Groups 1, 2, 4 and 5). We made comparison between groups and within the entire sample.

| Quality and trustworthiness
We included key stakeholders in the design, analysis and dissemination plans for our research, and we included patients with MS as our research participants. We used purposeful sampling, and we are confident in reaching data saturation with our overall sample of 50 participants as no new themes or subthemes emerged after analysis of 39 interviews; analysis of the remaining 11 interviews further supported data saturation per heterogeneous group. The content validity of interviews was confirmed by basing semi-structured questions on relevant literature and our opinions. Between-interview consistency was addressed using a semi-structured interview script.
Triangulation of our methods was performed by intertwining our results with the participant characteristics (e.g. disability status, current exercise level). Triangulation of sources involved analysis of the transcribed interview and the take-home journal. We further increased 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 qualitative mock interviews before beginning the study and meeting weekly to discuss interviews, transcripts and analyses.

| Participant characteristics
Participant characteristics are reported in Table 2. The sample was largely female (n=33), and the mean age was 49.

| Data sources
Data were analysed from all 50 interviews, and interviews aver-

| Theme 1: Interactions between patients and healthcare providers matter
This theme characterised the current interactions between patients and healthcare providers. We heard both successful and unsuccessful interactions between patients and health care providers in relation to exercise promotion, and this provided evidence of the social influence of healthcare providers. I'm not going to say a disconnect but it seems to be a disconnect between exercise and health and physicians.., you go in for whatever you need, they tend to take care of that particular need and that's about it.

ID 8, mild disability, moderately active (Group 2)
Minimal exercise promotion Active exercise promotion Nearly one-fourth (n=13) of the participants experienced active promotion of exercise by healthcare providers. Although there were examples of active exercise promotion in all groups, it is notable that the majority of these participants were in the sufficiently active groups (Groups 3 and 6). Exercise promotion involved verbal instructions, referrals to exercise programmes and written exercise plans. We heard positive feeling from these participants towards their healthcare provider, and the majority of participants were satisfied by the interaction they had with health care providers. One individual recounted a very supportive approach by her healthcare provider, and this offers an example of a mutual relationship between patient and healthcare provider.  Participants suggested the specific exercise equipment which they felt their healthcare provider should offer (e.g. resistance bands, balance balls and treadmills). Furthermore, participants told us they wanted exercise equipment provided to them by their healthcare provider to facilitate planning, goal-setting and exercise accountability (i.e. activity trackers, written exercise diaries or mobile phone applications with exercise diaries). These planning, goal-setting and accountability requests were more common in participants who were either moderately active or insufficiently active, and this suggests that the inclusion of behavioural strategies may help participant who are not yet sufficiently active become more motivated to exercise.

| Theme 2: Needs and wants of patients
In comparison, participants who were sufficiently active told us that they habitually exercised, and therefore did not seem to need as many behavioural strategies. Requests from sufficiently active participants were for advancing their current exercise, and for modifications, they should take to allow them to maintain exercise if undergoing relapse, or they experience social or environmental barriers to their normal exercise. It was evident in those who were insufficiently active that they wanted healthcare providers to continually promote the importance of exercise and wanted exercise-related clinical assessments to increase accountability as well as alleviating concerns by promoting safe exercise.
These persons wanted the provision of skills to prioritise exercise and overcome social constraints such as family and occupational obligations, and discussed a liking for goal-setting and structured plans. Participants who were sufficiently active were less likely to need the social dependability of a healthcare provider. Some participants who were sufficiently active wanted moreso to gain support from their friends and family, and wanted to help engage other persons with MS to become exercisers too.

| Discussion
Persons with MS need and want to receive exercise promotion from healthcare providers, and this strongly supports previous evidence. 13,37,38 Many participants who were sufficiently active There are some limitations of this study. We recruited persons with mild-to-moderate MS-disability, and our results may not be applicable among those with severe disability. Our interpretative analysis approach acknowledged that the results may be bias by the researchers belief that exercise is beneficial for persons with MS and that there is a need to increase overall participation by persons with MS. Patient experiences and access to healthcare services may differ across local and international borders, and it is therefore important for future investigation of patients' needs and wants related to exercise to be investigated globally.

| Conclusion
We believe that establishing effective exercise promotion tools for healthcare providers is paramount for improving participation in exercise and physical activity among persons living with MS. This study represents preliminary work of understanding the needs and want of persons with MS regarding exercise promotion through healthcare providers. We established that persons with MS want healthcare providers including neurologists, physical therapists and occupational therapists to promote exercise through the provision of information and resources that address key needs and wants, namely materials, knowledge and behavioural strategies for exercise.

FUNDING
This work was supported by a mentor-based post-doctoral fellowship from the National Multiple Sclerosis Society (MB 029) and a pilot grant from the National Multiple Sclerosis Society (IL 0017).

DECLARATION OF CONFLICTING INTERESTS
The authors declare that there is no conflict of interest.