Experiences of and attitudes to lifestyle modification for the management of multiple sclerosis: A qualitative analysis of free‐text survey data

Abstract Background Growing evidence suggests a role of lifestyle modification in improved health outcomes for people with multiple sclerosis (pwMS); however, perspectives of pwMS who engage in lifestyle modification are lacking. Objective We explored perspectives of pwMS regarding the modification of lifestyle‐related risk factors in multiple sclerosis (MS) for disease management to understand attitudes to and experiences of lifestyle modification as part of self‐management from a patient perspective. Design Participants were ≥18 years and English speaking who responded to a free‐text open‐ended question in the Health Outcomes and Lifestyle In a Sample of pwMS (HOLISM), an international online survey. Responses were analysed utilizing inductive thematic analysis. Results Under the exploration of lifestyle modification, themes describing the experiences and attitudes of participants included practical challenges and physical and psychological barriers, enablers of change and experienced outcomes. Although participants reported some practical and psychological challenges to adoption and maintenance of lifestyle behaviours, many expressed an ability to gain control of MS through engagement with lifestyle behaviours and the development of hope and optimism that accompanied this sense of control, at times leading to a sense of personal transformation. Conclusion Findings highlight the challenges experienced by pwMS in adopting lifestyle modifications for disease management as well as the positive benefits from following healthy lifestyle behaviours. Our findings may form the basis of more focussed qualitative explorations of the experiences and outcomes of lifestyle modification in MS in the future. Patient Contribution Consenting pwMS completed a survey capturing data on demographics, clinical course, lifestyle behaviours and health outcomes.


| INTRODUCTION
Multiple sclerosis (MS) is an inflammatory-neurodegenerative disease of the central nervous system characterized by demyelination and axonal degeneration, which manifests in a heterogeneous array of physical and psychological symptoms. 1 Up to 85% of people with MS (pwMS) experience relapsing remitting MS (RRMS), which is frequently preceded by a first acute clinical attack known as 'clinically isolated syndrome'. 1 Over time, neurodegenerative axonal injury and atrophy lead to the development of a secondary progressive course in 80% of those with RRMS. 2 Regardless of disease phenotype, the potential for disability, including impairments in vision and mobility, loss of balance, bladder and bowel disturbances, is of major concern to all pwMS.
As a result of both the limited efficacy of pharmaceutical management and the experiences of deterioration in health for pwMS, the demand for nonpharmaceutical interventions has gained importance for pwMS. 3,4 PwMS are often proactive in their efforts to remain healthy and frequently seek advice from clinicians regarding factors that may slow or prevent disease progression. 5 There is growing evidence that lifestyle modification, which is the altering of long-term habits, commonly diet and physical activity, and adoption and maintenance of behaviours aimed at the reduction of recognized risk factors, is an effective means to manage disease progression and symptom severity in MS. 6 Abstinence from smoking, a healthy diet, physical activity, adequate vitamin D levels, supplementation with omega 3 fatty acids and meditation are all associated with a reduction in the chronic inflammatory state associated with MS 7 and subsequent improved health outcomes. These outcomes include better mental and physical health quality of life, [8][9][10] reduced relapse rate, 11 depression risk 12 and clinically significant fatigue 13 and lower burden in terms of disability and symptoms. 6,14 Due to many factors, including the unpredictable manifestation and progression of MS, the frequently early age of onset and the preponderance of the disease in women of childbearing age, even apparently straightforward decisions, such as taking medications, are experienced as not simply individual and rational decisions, but complex matters that occur in the context of the person's life as a whole and 'a web of relationships with relatives and friends'. 15 It is therefore understandable that adopting lifestyle modification may present many complexities and challenges to the individual. However, there is a paucity of information regarding what drives and impedes motivation, the facilitators and barriers to implementation and the personal perspectives of what lifestyle modification has meant to those adopting change.
Though pwMS often adopt lifestyle behaviours for disease selfmanagement, few studies have examined their perspectives and experiences of making these changes. In previous qualitative studies of pwMS who adopt lifestyle change, nutrition and other lifestyle factors (stress, sleep and temperature) have been perceived to affect disease activity, even on a daily basis. 16 Barriers and enablers to exercise adoption, the perceived value of exercise in sustaining independence and the need for clear guidance from health professionals about the optimum mode and amount of exercise have been described. 17 Studies of physical activity interventions in MS have reported the experience of increased self-confidence and competence, as participants successfully pushed their perceived physical exercise boundaries, which reinforced their exercise capabilities. 18,19 Further, physical exercise interventions were powerful in teaching pwMS the skills and knowledge required to enact positive control over their behaviours, leading to feelings of mastery and overall wellness 18,19 and increased motivation to continue physical activity. 20 This study analyses comments that specifically referred to the impact of engagement with lifestyle modification from an online international survey's concluding free-text question. Our study aims to explore the experiences and attitudes of people engaging with lifestyle modification as part of MS management, and whether these experiences may be novel compared with the current limited attitudes and experiences described within the literature. In doing so, this study contributes towards enhancing MS patient-centred care by providing clinicians with patient perspectives of lifestyle modifications and their utility in the management of MS.

| MATERIALS AND METHODS
A qualitative descriptive study of free-text responses to an openended survey question was performed.

| The survey
In 2012, participants were recruited via international promotion of the Health Outcomes and Lifestyle In a Sample of people with Ms (HOLISM) study on social media platforms and websites, the methodology of which has been previously described. 21

| Qualitative analysis
Inductive thematic analysis was applied. 22 This approach, whereby coding and theme development are derived from the raw data, 22 is useful to express the complexities of meaning interlaced within textual data, 23 and is consistent with other studies of free-text survey data. 24 Additionally, thematic analysis is beneficial when summarizing the key characteristics of a large data set, as researchers must be methodical in their handling of the data. 25 The first stage of analysis was data familiarization (N. N. and A. D.). Comments were read several times, to gain a foundational understanding of the quality and depth of comments, followed by initial coding of data (N. N. and A. D.), to describe the nature of the comments. The second stage involved categorizing the codes through further reflection and analytical processing 26 (N. N., S. L. N. and A. D.). It was during this process that the researchers decided to focus on and explore the comments relating to lifestyle modification, due to the richness of the data and the perceived interest and novelty of this exploration. Themes and subthemes that illustrated concepts within lifestyle modification were then derived from the data through a thoroughly iterative process during frequent researcher meetings. The analytical process is shown in Figure 1. The credibility of the analysis was enhanced by researcher immersion through multiple readings of the raw data; multiple researchers being involved in the interpretation; and through researcher reflective discussions. 27 Frequent review of the data and initial coding and resulting codes, categories and themes ensured that the resultant themes accurately reflected the raw data and honoured the perspectives of the participants, enhancing the trustworthiness of the analysis. 25 Detailed notes of researcher meetings were maintained by A. D. To enhance transparency, verbatim quotes have been used to illustrate themes, enabling readers to assess the validity and 'fittingness' of researcher interpretations. 28 F I G U R E 1 Schematic of the qualitative analysis process 3 | RESULTS

| Themes
Four themes were identified during the exploration of lifestyle modification. These were practical challenges, physical and psychological barriers, enablers of change and experienced outcomes. With respect to participants' quotations, 'Overcoming MS (OMS)' is a lifestyle modification programme, and 'Overcoming Multiple Sclerosis The evidence-based seven step recovery program' is the book to which some participants refer. 29 The 'OMS retreat/retreat' is a residential lifestyle modification workshop. The 'website' is the OMS Charity website. Similarly, participants faced other practical challenges; for example, those who were unable to drive themselves found this to be a significant barrier when trying to increase their exercise levels. The lack of access to transport often meant that participants were unable to attend social events or gym classes, hindering activity that they longed to be a part of.  Conversely, for other participants, current lack of current symptoms hindered the adoption and maintenance of behaviour changes. Current good health seemed to reduce or remove the perceived need to make immediate changes.

| Physical/psychological barriers
I would really like to stick to it, but since I'm generally without symptoms, I find it very hard to stick to anything.

| Enablers of change
The theme of 'Enablers of change' described the factors that participants described as having assisted and facilitated the adoption and maintenance of lifestyle modification. Three subthemes were iden-  Women with MS who held strong desires to initiate changes to their lifestyle reported challenges such as being hindered by difficulties in sustaining motivation, chronic fatigue and uncertainty around recommended levels of exercise, similar to our participants. 30 Fatigue and mobility issues have been reported as significant barriers to engaging in healthy behaviours in other studies. 31 Other barriers, such as lack of support and conflicting information from healthcare professionals, have also been similarly reported by partners of pwMS, who reported that healthcare practitioners were not interested in, and even critical of, their partner's participation in lifestyle programmes. 32 However, while many participants detailed barriers and challenges to implementing lifestyle modification, our study also identified positive attitudes and perspectives towards the management of MS through lifestyle modification that are less commonly reported.
These positive perspectives align with those reported in a study of the perspectives of pwMS towards adopting multiple health behaviours, finding that participants were optimistic in their ability to control MS through health behaviours. 31 The experience of hope in pwMS has been previously reported as hope for a miracle, for a cure or to remain stable and to learn to cope. 33 Others have experienced hope via developing social interactions and achieving goals 34 and by undertaking extreme physical challenges alongside others with MS. 35 Hope can have a positive impact on psychological and social well-being. 36 However, hope arising from the implementation of lifestyle modifications and the observed outcomes, as found in our study, is an uncommonly reported finding. Many participants in our study also credited educational resources, specifically a lifestyle workshop or book, with providing a positive outlook and strong hope for a future that previously appeared bleak. The importance of lifestyle modification as a pathway towards hope in pwMS is a substantial finding.
The concept of transformation in chronic illness has been previously researched. Transformation refers to the process by which people living with chronic illness move beyond focussing on the suffering associated with the illness towards the process of realizing the positive and potentially rewarding aspects of living with a chronic condition. One large metasynthesis of explorations of transformation identifies three stages: initial response, embracing the challenge and integrating new ways of being. 37 Our participants describe similar processes of embracing the challenges and integrating new ways of being. However, the transformations described here appear to be somewhat of an extension to embracing and integrating new ways of being to tangible physical and psychological transformation from the health intervention that they have adopted, adding a further potential layer to the concept of transformation.

| Strengths and limitations
We acknowledge the 8-year time period from data collection to analysis as a limitation to themes possibly not being reflective of current attitudes and perspectives of pwMS. However, it is likely that our findings are still relevant as they have not previously been described in the literature, in particular, the findings related to the positive experiences and outcomes that many pwMS in our cohort

| CONCLUSIONS
Our study provides novel insights into the impact of lifestyle modification on pwMS, including enablers of behaviour change and the potential experience of positive outcomes such as enhanced hope and transformation. These are aspects of living with MS that could be further explored in future qualitative research focussing specifically on lifestyle modification to more fully explore and understand people's experiences and the contexts that contribute to positive outcomes more in depth. This expanded knowledge base may support evidence-based disease self-management in pwMS.