Factors associated with physical activity and exercise participation in people with multiple sclerosis: a qualitative systematic review

Abstract

Background

Multiple Sclerosis (MS) is an incurable neuroinflammatory disease of the central nervous system that affects more than 2.2 million people globally. Although evidence shows the benefits of physical activity and exercise, participation in exercise in people with Multiple Sclerosis (pwMS) has been poor. A synthesis of qualitative research is required to better understand the factors associated with physical activity and exercise participation in pwMS.

Objectives

To synthesise findings from qualitative studies exploring factors associated with physical activity and exercise participation in people with MS.

Methodology

Qualitative systematic review using the Inductive Thematic Synthesis approach.

Data sources

CINAHL, Embase, MEDLINE, PsycINFO, and Scopus databases were systematically searched with further searches of reference lists and OpenGrey.

Study eligibility criteria

Qualitative studies or mixed-method studies with relevant qualitative content that explored the factors related to physical activity and exercise participation in people with MS.

Study synthesis and appraisal

Thematic Synthesis and Critical Appraisal Skills Programme (CASP) qualitative studies checklist.

Results

Thirty-nine studies met the inclusion criteria. Three analytical themes were generated from 11 descriptive themes outlining the factors associated with physical activity and exercise participation in people with MS.

Conclusion

Physical activity and exercise participation in people with MS is influenced by internal and external factors. PwMS adopt a range of strategies to sustain physical activity and exercise participation. Healthcare professionals could play a role in the physical activity and exercise participation of pwMS.

Systematic Review Registration Number

PROSPERO 2020:CRD42020214002.

Keywords:

• Multiple sclerosis
• physical activity
• exercise
• participation
• qualitative systematic review

Introduction

Multiple Sclerosis (MS) is a progressive neurological condition that affects more than 2.2 million people globally [1]. Exercise is considered as an intervention for improving muscle strength, fitness, fatigue, and health-related quality of life of people with MS (pwMS) [2–4]. But there is limited evidence on the most effective form of exercise for pwMS [5,6]. Despite the widely reported benefits, physical activity (PA) and exercise levels in pwMS are considerably low [7,8]. Understanding of the influencing factors will help healthcare professionals to implement strategies that could improve PA and exercise participation in pwMS. But there are only two qualitative systematic reviews that synthesised the perceptions of PA and exercise in pwMS, and both were published in 2016 [9,10]. There is a value in conducting an updated qualitative systematic review in this area as it will include recent research that helps us to identify and expand our knowledge on the contemporary factors. The aim of this systematic review is to systematically synthesise findings from qualitative studies exploring factors associated with PA and exercise participation in people with Multiple Sclerosis. Research questions: What are the barriers and facilitators to PA and exercise participation in pwMS? How do these factors influence their PA and exercise participation?

Methodology

A qualitative systematic review using the Inductive Thematic Synthesis approach was implemented for the synthesis of qualitative data. The inductive approach was used for coding, concept translation, and interpretation of data [11]. Constant comparison was integrated throughout the synthesis to assess the transferability of themes between studies [12]. The enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework was used to enhance rigour [13]. PRISMA flowchart was used for reporting the study selection [14]. A protocol was registered on the PROSPERO database (PROSPERO 2020: CRD42020214002).

Methods

Definitions

Physical activity is any bodily movement produced by skeletal muscles that requires energy expenditure [15]. Exercise is considered as a component of physical activity; however, some claim there is little difference between them [16]. Physical activity and exercise may be in any kind of form, such as aerobic training, resistance training, balance training, or in specific types, such as yoga, swimming, and Tai-chi. Activities of daily living were not considered as PA for the purpose of this review. Within the literature on this topic, the terms PA and exercise are being used interchangeably. Therefore, in this review, the terms PA and exercise were used jointly and interchangeably. PA and exercise participation were considered as involvement in them independently or following the advice of healthcare professionals.

Search strategy

An information specialist was consulted to ensure the search strategy was rigorous. A systematic search was completed by CC between September and October 2020, and updated again in February 2023 using databases: CINAHL, Embase, MEDLINE, PsycINFO, and Scopus. The literature search was a three-step process. First, an initial search was started in MEDLINE with keywords including ‘Multiple Sclerosis’, ‘exercise’, ‘factors’, and ‘qualitative’. Common synonyms or abbreviations, such as ‘MS’, ‘physical activity’, ‘barriers’, ‘facilitators’, ‘interview’, and ‘focus group’ were included. The search result was then analysed to examine if most synonyms and spelling variations of the keywords were covered. This search strategy was then used as a grounding syntax for advanced searching in other databases. Second, the search was undertaken across all listed databases with specific controlled vocabularies and full-text terms, combined with Boolean operators to optimise the search results. Full-text terms were restricted to titles, abstracts, and keywords. Third, the reference lists of the included studies were hand-searched by CC for additional studies. The search was limited to studies published between 1 January 2000 and 19 February 2023. Grey literature was searched in OpenGrey. Endnote X9.3.3 was used as a citation manager throughout the screening process, and Microsoft Excel 16.48 was used for documentation. Once the search strategy was compiled, a citation list of the results was extracted and imported to Endnote. Duplicate items were removed before screening the titles and abstracts. CC screened the titles and abstracts to identify relevant studies that met the inclusion criteria for full-text screening. Then, CC and KG independently screened full-text articles and were blinded to each other’s decision. The decision to include studies in thematic synthesis was only made once the full-text screening was completed by both authors, discussed, and resolved any discrepancies that arose.

Eligibility criteria

Inclusion: Qualitative studies and qualitative content in mixed-method studies which explored factors related to PA and exercise and recruited people aged over 18 years old, diagnosed with any type of MS, and from any country of origin. Exclusion: Studies that did not report data on the phenomena of interest, quantitative studies, conference abstracts, reviews, experts’ opinions, and studies not written in English.

Quality assessment

The quality of studies was assessed by both reviewers using the Critical Appraisal Skills Programme qualitative checklist [17]. Reviewers were blinded to each other’s evaluation and disagreements were deliberated until a consensus was reached. No limits were applied to the quality of the studies.

Data extraction and synthesis

Participant characteristics, contextual and methodological information were extracted (Table 1). Participants’ quotations and authors’ explanations were extracted and used in the data synthesis. Thematic synthesis was implemented in three stages: coding, developing descriptive themes, and generating analytical themes [11]. CC completed line by line coding of all the included studies. KG also performed line by line coding of 50% of the included studies. Both reviewers compared and discussed their codes for quality assurance. CC developed descriptive themes and generated analytical themes. KG made recommendations throughout. Synthesis continued until all analytical themes were sufficiently abstract to cover all the descriptive themes and answered the review questions.

Table 1. Characteristics of the included studies.

Authors (year, country)	Focus of study	Qualitative approach	Participants with MS	Data collection
Adamson et al. [18] (2017, USA)	Understand how persons with MS describe the roles of PA and exercise as part of daily life with MS, relapses and disability identity.	Phenomenology	15 (14F, 1M); Age: 27–70; Age distribution: 20–29 (1), 30–39 (3), 40–49 (5), 50–59 (2), 60–69 (3), 70–79 (1). EDSS: 2.5–6.5; 2.5 (1), 3.0 (2), 3.5 (3), 5.0 (1), 5.5 (4), 6.0 (3), 6.5 (1). PDDS: NR. GLTEQ: 0–41 < 14 (8); 14–23 (4); >24 (3).	Semi-structured interviews
Aminian et al. [19] (2019, Canada)	Perspectives of PwMS about sedentary behaviour, physical activity, and ways to change activity behaviour.	Inductive	15 (12F, 3M); Age: 43 ± 13 (mean ± SD). Age: 20–29 (3): 30–39 (3): 40–49 (2): 50–59 (6): 60–69 (1). 10RR, 2PP, 3SP. EDSS: NR. PDDS: 1 (5), 2 (1), 3 (2), 4 (4), 5 (1), 6 (2). GLTEQ: <14 (5); 14–23 (5); >24 (5).	Semi-structured interviews
Barnard et al. [20] (2020, Australia)	Barriers and enablers to adherence to health behaviour recommendations in PwMS who attended a lifestyle intervention.	Pragmatism	18 (13F, 5M); Age: 30–39 (4): 40–49 (4): 50–59 (6): 60–69 (4). EDSS: NR. PDDS: 0 (2), 1 (7), 2 (2), 3 (1), 4 (1), 5 (1), 6 (3), 7 (1).	Semi-structured interviews
Borkoles et al. [21] (2008, UK)	Lived experiences of PwMS in relation to exercise	Phenomenology	7 (4F, 3M); Age:34–65; Mean age: 47.1 (SD 19.1) EDSS: 4–6	Semi-structured interviews
Brown et al. [22] (2012, Canada)	Barriers and facilitators influencing participation in aquafitness programs among people with MS	Phenomenology	8 (5F, 3M); Age: 47–66; 4PP; 2PR; 2RR. EDSS: NR.	Focus group and semi-structured interview
Chard [23] (2017, USA)	Identify the individual and social experiences underlying the initiation and satisfaction with aquatic exercise among persons with MS.	Grounded Theory	45 (35F, 10M); Age: Mean 55 (SD 9.4); 30RR EDSS: NR.	Semi-structured interviews
Chiu et al. [24] (2016, USA)	Barriers and facilitators that influence PA engagement among African Americans with MS	Qualitative	18 (14F, 4M); Age: 27–61; 1SP; 17RR. EDSS: NR.	Focus group and semi-structured interviews
Crank et al. [25] (2017, UK)	Exercise perceptions and experiences in PwMS before, during, and after participation in a personally tailored program designed to promote long-term maintenance of self-directed exercise.	Constructivist	33 (26F, 7M); Mean Age: 47.6 (SD 7.9); EDSS: 1.0–6.5 EDSS distribution: NR.	Focus group and semi-structured interviews
Dlugonski et al. [26] (2012, USA)	The adoption and maintenance of lifestyle physical activity.	Inductive	11F; Age 29–58; Mean Age: 42.9 (SD 10.2); Age: 20–29 (1): 30–39 (4): 40–49 (3): 50–59 (3): 11RR. EDSS: NR. PDDS: 0 (4), 1 (4), 2 (3). Active (4), Moderately active (3), Inactive (4).	Semi-structured interviews
Dodd et al. [27] (2006, Australia)	The positive and negative outcomes of a PRE programme and to identify factors that might facilitate or create barriers to the participation in and completion of a PRE programme.	Qualitative	9 (7F, 2M); Age 27–61; Mean age: 45.6 (SD 10.7); Age: 20–29 (1): 30–39 (2): 40–49 (3): 50–59 (2): 60–69 (1). DSS: 0 (4), 1 (3), 2 (2). EDSS: NR.	Semi-structured interviews
Fasczewski et al. [28] (2018, USA)	Motivation for and benefits of PA in a subset of the MS population who are highly physically active.	Phenomenology	8 (7F, 1M); 8RR; Mean age: 43.5 (SD 10.03); Age: 20–29 (1): 30–39 (2): 40–49 (3): 50–59 (1): 60–69 (1). Godin physical activity level: Active (8). EDSS: NR.	Semi-structured interviews
Giacobbi et al. [29] (2012, USA)	Factors that facilitated or impeded exercise behaviour immediately after and at 8 months completion of the resistance training intervention (secondary purpose)	Pragmatism	8F; 8RR; EDSS < 6.5. EDSS distribution: NR. Mean age = 49.86, SD = 6.94 Age 40–63; Mean age = 49.86, SD = 6.94. Age: 40–49 (4): 50–59 (3): 60–69 (1). 4 (45–60 min of PA, 1–6 days/week), 2 (15–30 min of PA, 2–3 days/week), 3 (<15 min of PA), 1–3 days/week).	Open-ended interviews
Hall-McMaster et al. [30] (2016, New Zealand)	Thoughts around motivation to be physically active among individuals with MS	Critical realism (inductive)	4 (2 F, 2 M); Age: 46–70. Physically mobile (4); Electric wheelchair (1) EDSS: NR.	Semi-structured think-aloud interviews
Kasser [31] (2009, USA)	The meaning of exercise in the lives of people with MS.	Phenomenology	12 (10F, 2M); Age 32–56. Age: 30–39 (2): 40–49 (6): 50–59 (4): Mean age: 46.25. 7RR, 2PP, 3SP. Ambulatory (9) with assistive aid (3). EDSS: NR.	Interviews
Kayes et al. [32] (2011, New Zealand)	Gain a deeper understanding of the barriers and facilitators to engagement in physical activity from the perspective of people living with MS.	Qualitative descriptive design—Charmaz’s grounded theory methodology	10 (7F, 3M); Age 34–53; Age: 30–39 (3): 40–49 (4): 50–59 (3): 4RR, 3SP, 3CP. Guys Neurological Disability Scale: 0–10 (3), 11–20 (3), 21–30 (2), 31–40 (2). Ambulatory (4) with assistive aid (6). EDSS: NR.	Semi-structured interviews
Learmonth et al. [33] (2013, UK)	Experience and perspective of a group exercise intervention.	General inductive approach	14 (10F, 4M); Age: 40–68: Age: 40–49 (7), 50–59 (5), 60–69 (2). EDSS: 5 (1), 6 (9), 6.5 (4).	Semi-structured focus groups
Learmonth et al. [34] (2015, USA)	Everyday experiences and lifestyle management strategies of wheelchair users who have MS.	Qualitative	15 (12F, 3M); Mean age: 52 (SD = 8.8); 7RR, 2PP, 6SP. Wheelchair users (15) EDSS: NR.	Standardized semi structured interview
Moffat and Paul [35] (2019, UK)	Barriers and solutions to exercise for people with MS living in Scotland who were not currently exercising regularly.	Nominal group technique	35 (24F, 11M); Age range: 18–35 = 1, 36–50 = 7, 51–65 = 17. Over 66 = 10; 14RR, 13SP, 5PP. 3 U; EDSS distribution: NR.	Group consensus development through group discussion
Plow et al. [36] (2009, USA)	Facilitators of and barriers to PA behaviour in PwMS the relevance and utility of SCT and TMSC in understanding PA behaviour among persons with MS	Modified analytical induction	13 (11F, 2M); Age 18–68; Age: 18–29 (1), 30–39 (2): 40–49 (5): 50–59 (2), 60–69 (3). 9RR, 2SP, 2U; Modified Health-Promoting Lifestyle Profile (HPLP-II): active (3), sometimes active (6), inactive (3). Mobility device (5). EDSS distribution: NR.	Semi-structured interviews
Plow et al. [37] (2014, USA)	Perceived barriers, motivators and strategies for engaging in a PA program	Mixed methods, issue-focused analysis approach	24F; Age (inclusion criteria) 18–65; 24RR; walk 25 feet with or without a cane. EDSS distribution: NR.	Semi-structured interviews
Richardson et al. [38] (2022, USA)	Exercise experiences of persons with MS living in the southeast of the US.	Inductive, Interpretivist paradigm, Relativist approach	32 (24F, 8M); Age 24–72; Avg: 50. Age: 18–29 (1), 30–39 (5): 40–49 (8): 50–59 (13), 60–69 (3), 70–79 (2). 32RR. EDSS distribution: NR.	Semi-structured interviews
Schneider and Young [39] (2010, Canada)	The lived experiences of women living with multiple sclerosis and their perceived barriers to accessing physical activity.	Phenomenology	7F; Age 41–55; Mean age: 50.4. 40–49 (2): 50–59 (5), 4RR, 3PP. EDSS distribution: NR.	Semi-structured interviews
Silveira et al. [40] (2020, USA)	Exercise perceptions and behaviours of persons with MS who use wheelchairs for mobility	Interpretivist paradigm, deductive qualitative design	20 (16F, 4M); Age 39–77; Mean age: 64.1 (SD = 8.7); 30–39 (1): 50–59 (4), 60–69 (8), 70–79 (7). 4RR, 16 PR. Wheelchair users (20). Regular vs. inconsistent exercisers: 12 vs. 8. EDSS distribution: NR.	Semi-structured interviews
Smith et al. [41] (2011, New Zealand)	Experiences of PwMS-related fatigue, who participated in a range of community-based exercise activities.	Interpretive description	9F; Age 28–70; 5RR, 3SP, 1U Walk independently with or without walking aids. Exercise once a week. EDSS distribution: NR.	Interviews
Smith et al. [42] (2013, New Zealand)	Investigate experiences of participating in a feasibility trial of a novel physiotherapy intervention (Blue Prescription).	General inductive approach	27 (23F, 4M); Mean age: 51 (SD = 11.1); Age 34–71; Age: 30–39 (5): 40–49 (9), 50–59 (6), 60–69 (6), 70–79 (1). 8RR, 3PP, 7SP, 9U. Mobility: walking with aid (12), walking without aid (10), wheelchair (5). EDSS distribution: NR.	Semi-structured interviews
Smith et al. [43] (2015, New Zealand)	Influence of fatigue on the community exercise participation in men. Potential differences between men’s and women’s responses to fatigue	Interpretive description	18M; Age 36–68; 10RR, 5PP, 3SP. EDSS distribution: NR.	Semi-structured interviews
Smith et al. [44] (2019, Australia)	Experience of participation in sport and exercise for individuals with MS who have minimal disability	Descriptive methodology, Interpretive paradigm	16 (14F, 2M); Age 27–61; EDSS level of 1.3 (SD: 1.3, range 0–4). EDSS distribution: NR. Mean age: 41 (SD: 10.9, range 27–61).	Focus group interviews
Stennett et al. [45] (2020, UK)	Explore the everyday meanings of exercise and physical activity in community dwelling people with MS	Qualitative approach	16 (12F, 4M); Age 47–72. Age: 40–49 (2), 50–59 (3), 60–69 (7),70–79 (4). 2RR, 5PP, 4SP, 5U. Mobility: with aid (9), without aid (5), wheelchair (2). EDSS distribution: NR.	Semi-structured interviews
Adamson et al. [46] (2022, USA)	Gain an in-depth understanding on barriers to PA and exercise among individuals with MS across a spectrum of MS impairment.	Non-reductionist materialist ontology subjectivist epistemology	23 (19F,4M); Age: 18–29 (1); 30–39 (4): 40–49 (4): 50–59 (6): 60–69 (8). SR-EDSS: 0–3.5 (9); 4–6 (8); 6.5+ (6); Type of MS: NR; HCS: High (8); Moderate (6); Low (9)	Semi-structured interviews
Akbar et al. [47] (2022, Canada)	Describe the perceived experiences and outcomes of individuals	Constructivist approach	56 (39F,17M); 34RR, 10PP, 12SP. Mean age: 46.8 (SD = 10). EDSS distribution: NR.	Semi-structured interviews
Clarke and Coote [48] (2015, Ireland)	Explore the perceptions of participants of 10 weeks of group exercise in the community	Qualitative research design	14, Mean age: 53.9 (SD 13.0). 11RR, 3SP. Guy’s Neurological Disability Scale: 0–2 EDSS distribution: NR.	Focus groups
Fifolt et al. [49] (2020, USA)	Exercise behaviours of persons with multiple sclerosis (MS) through the articulated lens of social cognitive theory	Interpretivism (secondary qualitative analysis)	50 (34F, 15M, 1NR), Mean age: 49.2 (SD: 10.3). 18–29 (1), 30–39 (9), 40–49 (10), 50–59 (22), 60–69 (7), NR (1), RR40, PP1, SP5, B3, NR (1). EDSS: mild to moderate disability. EDSS distribution: NR.	Interviews
Kim et al. [50] (2022, USA)	Perspectives of adults with MS following participation in a 3-month clinic- and home-based exercise rehabilitation program	Qualitative (thematic analysis)	20 (19F, 1M); Mean age: 50 (SD = 11). 14RR, 4PR, 1 U. PDDS: 14 mild, 2 moderate, 4 severe. EDSS distribution: NR.	Semi-structured interviews
Koopmans et al. [51] (2022, Canada)	Experiences of physical activity for people with MS during the COVID-19 pandemic and identify barriers and facilitators to physical activity behaviour.	Qualitative approach framed by the social ecological model	11 (9F, 2M); Age: 18–33 (2); 34–49 (5); 50–64 (4). Mean age: 45.1 (SD = 11.9). 6RR, 4SP, 1U. EDSS distribution: NR.	Semi-structured interviews
Palmer et al. [52] (2022, USA)	Impact of COVID-19 lockdown restrictions on exercise behaviour among people with MS	Ontological relativism and epistemological constructivism	8F; Age: 40–49 (4): 50–59 (3): 60–69 (1). Mean age: 51.5 (SD = 6.5). PDDS: mild (1), moderate (5), severe (2). EDSS: 4.5 (1), 5 (1), 6 (6).	Semi-structured interviews
Russell et al. [53] (2022, Ireland)	Experiences of people with MS taking part in a behaviour change group physical activity intervention with a novel social cognitive theory component	Subjectivist perspective	17 (14F, 3M) Mean age: 42.88 (SD = 9.35) Mean PDSS: 1.41 (SD = 1) Mean EDSS: 3.26 (SD = 0.59) EDSS distribution: NR.	Semi-structured interviews
van der Linden et al. [54] (2014, UK)	To establish the characteristics of both barriers and facilitators to their participation in the Pilates exercise programme.	Constructivist phenomenological perspective	10 (5M, 5F), 10SP, EDSS: 7–8 (10). 10 Wheelchair users. EDSS distribution: NR.	Focus groups
Ware et al. [55] (2022, USA)	Role of worry related to fatigue in exercise and physical activity behaviour in people with MS.	Constructivist grounded theory	35 Details: NR EDSS distribution: NR.	Semi-structured interviews
Wilkinson et al. [56] (2022, UK)	Understanding of the experience of PA amongst adults with RRMS during a relapse	Interpretivist phenomenological approach	15 (11F, 4M); 15RR; Age: 18–24 (1); 25–34 (1); 35–44 (7); 45–55 (5); 55–64 (1). PDDS: 11 mild, 4 moderate EDSS distribution: NR.	Semi-structured interview

CP: chronic progressive; DSS: Disease Steps Scale (0 = normal; 1 = mild disability; 2 = moderate disability; 3 = early cane; 4 = late cane; 5 = bilateral support; 6 = confined to wheelchair; U = unclassifiable); EDSS: Extended Disability Status Scale [1.0–4.5: able to walk without any aid, 5.0–9.5: impairment to walking/0–3.5 (mild), 4–6.5 (moderate), and 7–10 (severe)]; F: female; GLTEQ: Godin Leisure Time Exercise Questionnaire (<14: insufficiently active, 14–23: moderately active, >24: active); HCS: Health Contribution Score; M: male; NR: not reported; PR: progressive; PDDS: Patient Determined Disease Steps (≤3: mild, 4–5.5: moderate, ≥6: severe); PP: primary progressive; PwMS: people with multiple sclerosis; RR: relapsing remitting; SD: standard deviation; SP: secondary progressive; SR-EDSS: self-reported EDSS; U: unknown.

Results

Study selection

A total of 689 records were identified. After eliminating the duplicates and exclusions, 39 [18–56] studies involving 726 pwMS (71.5% Female, 21.6% Male, 6.9% unreported) with age distribution: young adults (<39 years) 8.3%, middle aged adults (40–59) 25.3%, older adults (>60) 9.8%, unreported 56.6% were included [18–56]. The number of studies and the % of participants according to the country were: three Australia (6%), five Canada (13.3%), two Ireland (4.3%), seven UK (18%), 17 USA (49.1%), five New Zealand (9.3%). The type of MS distribution was, RR 46.3%, SP 11.3%, PP 6%, PR 3%, CP and Benign 0.4% each, and 33% unreported. The level of disability based on EDSS were mild 2.1%, moderate 6.3%, mild to moderate 6.9%, severe 0.8%, and unreported 83.9%. Details of the study selection process are shown in the PRISMA flowchart (Figure 1). The characteristics of the included studies are presented in Table 1.

Figure 1. PRISMA flowchart.

Quality of the included studies

The methodological quality of the included studies was assessed by giving a score (0 = No; 0.5 = Can’t Tell; 1 = Yes) for responses on the CASP tool [57]. All included studies addressed nine out of the 10 items on the CASP tool and were considered as high quality (Table 2). Only 11 out of the 39 studies reported the relationship between researchers and participants.

Table 2. Critical Appraisal Skills Programme (CASP) qualitative studies checklist.

Study	Q1	Q2	Q3	Q4	Q5	Q6	Q7	Q8	Q9	Q10	Total
Adamson et al. 2017 [18]	1	1	1	1	1	0	1	1	1	1	9
Aminian et al. 2019 [19]	1	1	1	1	1	0	1	1	1	1	9
Barnard et al. 2020 [20]	1	1	1	1	1	1	1	1	1	1	10
Borkoles et al. 2008 [21]	1	1	1	1	1	0	1	1	1	1	9
Brown et al. 2012 [22]	1	1	1	1	1	0.5	1	1	1	1	9.5
Chard 2017 [23]	1	1	1	1	1	0	1	1	1	1	9
Chiu et al. 2016 [24]	1	1	1	1	1	0	1	1	1	1	9
Crank et al. 2017 [25]	1	1	1	1	1	0	1	1	1	1	9
Dlugonski et al. 2012 [26]	1	1	1	1	1	0.5	1	1	1	1	9.5
Dodd et al. 2006 [27]	1	1	1	1	1	1	1	1	1	1	10
Fasczewski et al. 2018 [28]	1	1	1	1	1	0	1	1	1	1	9
Giacobbi et al. 2012 [29]	1	1	1	1	1	0	1	1	1	1	9
Hall-McMaster et al. 2016 [30]	1	1	1	1	1	0	1	1	1	1	9
Kasser 2009 [31]	1	1	1	1	1	0.5	1	1	1	1	9.5
Kayes et al. 2011 [32]	1	1	1	1	1	0	1	1	1	1	9
Learmonth et al. 2013 [33]	1	1	1	1	1	0.5	1	1	1	1	9.5
Learmonth et al. 2015 [34]	1	1	1	1	1	1	1	1	1	1	10
Moffat and Paul 2019 [35]	1	1	1	1	1	0	1	1	1	1	9
Plow et al. 2009 [36]	1	1	1	1	1	0	1	1	1	1	9
Plow et al. 2014 [37]	1	1	1	1	1	0	1	1	1	1	9
Richardson et al. 2022 [38]	1	1	1	1	1	1	1	1	1	1	10
Schneider and Young 2010 [39]	1	1	1	1	1	1	1	1	1	1	10
Silveira et al. 2020 [40]	1	1	1	1	1	0.5	1	1	1	1	9.5
Smith et al. 2011 [41]	1	1	1	1	1	0	1	1	1	1	9
Smith et al. 2013 [42]	1	1	1	1	1	0.5	1	1	1	1	9.5
Smith et al. 2015 [43]	1	1	1	1	1	0.5	1	1	1	1	9.5
Smith et al. 2019 [44]	1	1	1	1	1	0	1	1	1	1	9
Stennett et al. 2020 [45]	1	1	1	1	1	1	1	1	1	1	10
Adamson et al. 2022 [46]	1	1	1	1	1	0	1	1	1	1	9
Akbar et al. 2022 [47]	1	1	1	1	1	1	1	1	1	1	10
Clarke and Coote 2015 [48]	1	1	1	1	1	1	1	1	1	1	10
Fifolt et al. 2020 [49]	1	1	1	1	1	0	1	1	1	1	9
Kim et al. 2022 [50]	1	1	1	1	1	0.5	1	1	1	1	9.5
Koopmans et al. 2022 [51]	1	1	1	1	1	1	1	1	1	1	10
Palmer et al. 2022 [52]	1	1	1	1	1	0	1	1	1	1	9
Russell et al. 2022 [53]	1	1	1	1	1	0	1	1	1	1	9
van der Linden et al. 2014 [54]	1	1	1	1	1	1	1	1	1	1	10
Ware et al. 2022 [55]	1	1	1	1	1	0.5	1	1	1	1	9.5
Wilkinson et al. 2022 [56]	1	1	1	1	1	1	1	1	1	1	10

0 = No; 0.5 = Can’t Tell; 1 = Yes. Q1. Was there a clear statement of the aims of the research? Q2. Is a qualitative methodology appropriate? Q3. Was the research design appropriate to address the aims of the research? Q4. Was the recruitment strategy appropriate to the aims of the research? Q5. Was the data collected in a way that addressed the research issue? Q6. Has the relationship between researcher and participants been adequately considered? Q7. Have ethical issues been taken into consideration? Q8. Was the data analysis sufficiently rigorous? Q9. Is there a clear statement of findings? Q10. How valuable is the research?

Themes

Three analytical themes emerged from 11 descriptive themes outlining the factors associated with physical activity and exercise participation in PwMS, with each analytical theme consisting of two or more descriptive themes (Table 3).

Table 3. Main findings of the thematic synthesis.

Descriptive theme	Analytical theme
(1a) Environment (1b) Accessibility (1c) Social factors	1. External factors affect physical activity and exercise participation
(2a) Impact of MS (2b) Beliefs (2c) Knowledge (2d) Self-efficacy (2e) Motivations	2. Internal factors alter physical activity and exercise behaviour
(3a) Self-management (3b) Professional support (3c) Interventions	3. Self-management, professional support, and interventions are beneficial

Descriptive themes

(1a) Environment

Physical activity and exercise environments were cited as a factor in 16 studies [20–24,32,34–36,38,40,41,43,44,51,52]. The hot environment was described as a barrier because the heat exacerbated fatigue and MS symptoms [20,22,24,32,35,36,38,40,41,43,44]. The perceived safety of the environment affected willingness to exercise [20–22,24,32,34,35,40,41,51,52]. Staff assistants and knowledgeable instructors at the exercise facilities were regarded as facilitators. During the COVID-19 pandemic, although fear of exposure to the virus became a barrier to participation, virtual activity environments, such as online classes were reported as facilitators.

(1b) Accessibility

Participants in 27 studies regarded accessibility issues as barriers to PA and exercise [19–22,24–27,29,31–38,40,41,44–47,49,51,52,54]. Barriers included accessibility to the facility [20,22,32,33,36,38,40,45–47,51,52,54], accessibility within the facility [19–22,24,25,29,33–36,38,40,44], cost and time available [19,20,22,26,27,29,31,32,35,37,40,41,44–46,49,54]. Social distancing measures and restrictions implemented during the COVID-19 pandemic acted as barriers to accessing facilities. Some participants had to travel long distances, which was exhausting for them. Limited accessible parking was another common constraint mentioned in the studies. Participants thought there should be more accessible facilities, such as toilets, changing rooms, showers, assisted gym, and pool. Bad weather was cited as a safety concern.

(1c) Social factors

Interactions with others that influenced PA and exercise participation were considered as social factors. These included social influence, social support, social obligation, and social stigma. 35 studies reported the impact of social factors on PA and exercise participation [19–29,31–42,44–54,56]. Most of these factors were reported as motivators for being physically active but some were considered as barriers. Participants highlighted the positive influence of exercising with other pwMS [19,22–27,29,31–35,37,38,41,47,48,52–54]. PwMS joined the exercise programme as a social activity to interact with others. However, participants experienced embarrassment, social stigma, and judgement from others which demotivated them [19,21,26,31–33,38,46,49,54,56]. Social support from family and friends was highly valued and reported as a facilitator [24–26,29,31,32,34,36,37,39,41,42,44,45,51,53,56], yet sometimes family and friends failed to understand the limitations and meaning of exercise to pwMS [36,41,46]. Social obligations, such as working and caring responsibilities were mentioned as barriers [36,37,45].

(2a) Impact of MS

Participants in 27 studies reported MS symptoms as internal barriers to PA and exercise [18–22,24,26,30,32–38,40,41,43–45,47,49,51,53–56]. Among all MS symptoms, fatigue was the most reported barrier [19–22,24,26,30,32,35,37,38,40,41,43–45,49,54–56]. Other MS symptoms that inhibited PA and exercise were heat sensitivity, mobility impairments, cognitive impairments, pain, anxiety, and depression. Exacerbations, relapses, variability in MS symptoms, and functional decline were also perceived as barriers [20,21,24,30,32,41,44,45,56].

(2b) Belief

Participants in 21 studies held different beliefs about PA and exercise [18–20,22,24,26,27,30–34,37,38,40,41,44–46,49,55]. Positive beliefs, such as exercise is beneficial, improves MS symptoms, essential for long-term health acted as motivators to maintain an active lifestyle [18,19,22,24,26,27,31,32,34,36,38,40,41,44–46,49,55]. In contrast, some believed exercise would negatively affect their body and worsen symptoms [20,32,36,37,49]. Opinions about post-exertional fatigue varied; some believed it was ‘healthy tiredness’ while others thought it was problematic [27,33,34,41].

(2c) Knowledge

Individual’s awareness and understanding of their MS, PA, and exercise were considered as knowledge. Eighteen studies reported participants’ perspective on their knowledge specific to MS, PA, and exercise [18–20,25,26,28,32,33,35,37,40,41,43,44,46–48,51]. When active participants were compared with those inactive, knowledge influenced engagement in regular exercise [25,26,28,40]. Active participants stayed active by balancing their rest and exercise and choosing the appropriate exercise mode linked to their physical capabilities. In general, studies highlighted patient education as an important factor to help them exercise safely and regularly [19,20,35,37,40,41,44].

(2d) Self-efficacy

Person’s belief in their ability to perform activities was considered as self-efficacy. Regardless of physical abilities, participants in 22 studies expressed various degrees of self-efficacy in performing PA and exercise and the level of this influenced their participation [18,19,21,24–32,35–40,49,53,55,56]. Participants with high self-efficacy expressed self-confidence in their physical capabilities to exercise. This perceived confidence was not only rooted in their own beliefs but also established by their past successful experience. Participants with low self-efficacy expressed fear of exercise due to their MS. Fear included fear of falling, safety, worsening symptoms, and embarrassment in front of others. Previous failed experiences also contributed to their fear.

(2e) Motivations

Participants in 37 studies described how motivation influenced their PA and exercise behaviour [18–20,22–35,37–56]. Perceived physical and emotional benefits of PA and exercise were the main motivators. Physical benefits included symptom improvement, reduction in fatigue, improved walking, as well as better strength and balance. Exercise also generated positive feelings. Participants gained enjoyment, a sense of accomplishment, a sense of feeling better, increased confidence, better control of MS, and mindfulness from exercise. All these benefits drove continued engagement in exercise. Another source of motivation cited by participants was a commitment, which could be self-commitment to exercise, commitment to dogs, classmates, and physiotherapists. In contrast, some participants found a lack of motivation because they did not enjoy or bother [19,20,25,29,37,40,41,49,52]. Some participants were frustrated and demotivated when they were unable to obtain immediate, obvious benefits, or when they compared their pre- and post-MS capabilities [26,30,32,35,36,41,46,49,50]. Participants also indicated that the impact of MS on their identity motivated them in engaging in exercise to redefine themselves [18,21,25,26,28,30,39,41,43,45]. Having an expected outcome was indicated as a facilitator to PA and exercise in 23 studies [18,22–26,28,30,31,34,36,38–45,47,49,51,53]. Participants perceived exercise as a means for achieving specific goals. The most reported outcome was to control MS. Participants wished exercise would help control their disease progression and alleviate their symptoms. Other expectations were improving or retaining their physical capabilities, maintaining good health, sustaining independence, and improving quality of life.

(3a) Self-management

Actions implemented by pwMS to help them participate in PA and exercise were considered as self-management strategies. Twenty-two studies reported self-management strategies used by participants to maintain their PA and exercise engagement [19,20,24–26,28,31–37,40–44,46,49,52,56]. Participants found both intangible and tangible ways to adapt to regular exercise. Intangible strategies adopted by the participants featured components of pacing, planning, and prioritising [20,24,26,28,32,35,37,42,43]. The formation of an exercise habit was also discussed [20,24,26,33,42–44]. Participants integrated exercise into their lifestyle and made exercise part of their weekly routine. Pertaining to tangible strategies, self-monitoring tools were the most reported [19,20,24,26,31,36,37,42]. PwMS used wearable activity trackers, such as Fitbit, pedometer, mobile app, and exercise log to monitor their activity level. Participants made adaptations to maximise their PA and exercise engagement [26,33,34,36,41,43].

(3b) Professional support

PA and exercise promotion by healthcare providers was valued by participants as a facilitator for exercise engagement [18,34,38,41,42,47–49,56]. Lack of professional advice and support were described as barriers [25,27,32–35,38,39,41,44,49]. Participants thought the advice and support specific to PA and exercise from clinicians were lacking [25,33,34,38,39,41,44]. They hoped clinicians could provide MS specific advice on what they could do to help themselves. PwMS also highlighted the need for PA and exercise prescription and guidance tailored to MS by healthcare professionals [25,27,32–35,44].

(3c) Interventions

Studies explored participants’ view of exercise after completing an intervention programme [20,25,27,29,31,33,36,37,42,47,50,52–54]. A tailored supervised exercise programme, in either an individual or a group setting with pwMS was carried out in some studies [25,27,29,31,33,36,48,53,54]. Participants expressed that they learned a lot from the programme. Participants also realised they were capable of ‘doing something’ even when they were limited by MS. Furthermore, participants valued sharing and learning from others with MS because peers can understand their difficulties better.

Analytical themes

(1) External factors affect physical activity and exercise participation

External factors, such as poor weather, heat, perceived safety, cost, travel time, and problems with accessibility act as barriers to physical activity and exercise participation in pwMS. While restrictions during the pandemic act as barriers, online classes act as facilitators. Although staff assistance and knowledgeable instructors act as facilitators, the majority of external factors related to the environment were considered as barriers. People with MS feel safer when they exercise in a quiet, less crowded, convenient, and disabled-friendly environment. Positive social influence and support are highly valued and regarded as facilitators. These play an important role in maintaining PA and exercise participation. While most social factors are enablers, some factors, such as social obligations and stigma act as inhibitors for PA and exercise participation. PwMS feel a sense of belonging, companionship, acceptance, and encouragement when surrounded by other pwMS. These feelings motivate them to engage in the PA and exercise programmes.

(2) Internal factors alter physical activity and exercise behaviour

The impact of MS, in particular, fatigue acts as a barrier in PA and exercise engagement. Active participants are more confident, motivated, and positive about taking part in PA and exercise compared to inactive individuals. PwMS demonstrate mixed beliefs and understanding of PA and exercise. Their beliefs and knowledge exert influence on exercise behaviour. People who believe PA and exercise is important and beneficial to their health exercise regularly and demonstrate more knowledge specific to PA and exercise. Higher levels of self-efficacy act as facilitator for participation in PA and exercise. Perceived benefits, positive experiences, and expectations act as motivators for PA and exercise participation in pwMS.

(3) Self-management, professional support, and interventions are beneficial

PwMS adopt various self-management strategies to support participation in PA and exercise. PwMS use pacing, planning, prioritising, and making adaptations to integrate PA and exercise into their life. PwMS learn new strategies from participating in exercise programmes with other pwMS and attending exercise promotion activities by healthcare professionals. Professional support and advice are helpful in facilitating PA and exercise participation in pwMS. However, professionals’ input is either lacking or insufficient. In addition to PA and exercise promotion, more professional support and advice are required to encourage pwMS to exercise. Interventions, such as tailored exercise programmes are valued and helpful for better engagement in PA and exercise over time.

Discussion

This review generated three new analytical themes that offered an improved understanding of the factors associated with PA and exercise participation in pwMS.

(1) External factors affect physical activity and exercise participation

PA and exercise participation in pwMS is influenced by external factors, such as environment, accessibility, and social factors. The majority of environmental factors found in this review were identified as barriers to PA and exercise participation. Though this finding was similar to Christensen et al.’s review [9], it was different from Learmonth and Motl’s review [10] which reported many as facilitators. The differences could be explained by the method of synthesis implemented in this review. Besides the similarities, this review found COVID-19 pandemic restrictions and fear of exposure to the virus acted as barriers. Although some of the aspects of social influence were considered as barriers in Learmonth and Motl’s review [10], social support and social influence were found as facilitators in the current review. Additionally, this review found social stigma, and social obligations as barriers. While participating in MS-specific group exercise setting, pwMS are not embarrassed about their MS related problems. Disease specific exercise settings make pwMS feel safe, comfortable, and confident which motivates them to participate in exercise. Although many studies reported accessibility issues to facilities acted as barriers, the online exercise classes acted as facilitators. While planning exercise facilities, providers could consider the issues around accessibility, safety, and comfort of the environment. Professionals could consider organising disease specific group, and online exercise classes for pwMS.

(2) Internal factors alter physical activity and exercise behaviour

MS related symptoms and the impact of MS were found as barriers to PA and exercise participation. Fatigue is deemed as the most influential barrier to PA and exercise. Therefore, when promoting PA and exercise to pwMS, healthcare professionals should discuss fatigue related impediments and deliver appropriate advice to help them gain control over their fatigue. In addition to the barriers reported in the previous reviews [9,10], this review found heat sensitivity, and functional decline as the barriers. The findings of this review indicated that personal beliefs and knowledge altered PA and exercise behaviour. While positive beliefs facilitated participation, negative beliefs and lack of knowledge acted as barriers. This review found that personal motivation influences PA and exercise behaviour of pwMS. Perceived benefits, previous positive experiences, and expected outcomes act as motivators for PA and exercise participation. Although the motivating factors found in this review were also reported in the previous reviews [9,10], impact of MS on identity, lack of enjoyment and not seeing immediate benefits were found to impact motivation. This review found that the level of self-efficacy influences the PA and exercise behaviour of pwMS. High self-efficacy facilitates PA and exercise participation in pwMS, and low self-efficacy acts as a barrier. Several studies highlighted that mastery experience contributed to higher self-efficacy in pwMS [23,27–29,31,33]. Mastery experience could come from a past successful exercise experience and develop from joining an exercise programme. Healthcare professionals could design programmes that fit with the capabilities, interests of pwMS and enhances their mastery experience.

(3) Self-management, professional support, and interventions are beneficial

PwMS adopt a range of strategies to sustain PA and exercise participation. PwMS apply energy conservation strategies to manage their fatigue so that they could manage day to day activities more efficiently and retain energy for PA and exercise. This review synthesised tangible and intangible strategies. Wearable activity trackers found in this review were contemporary to the strategies reported in the previous review [9]. Advice and promotion by healthcare professionals appear to be important in facilitating knowledge and positive beliefs. Similarly, a review by Learmonth and Motl [10] suggested that limited advice from healthcare professionals acted as a barrier. Professional’s knowledge, support, and advice were mentioned in the previous reviews as determinants of PA and exercise participation in pwMS [9,10], the findings of this review concurred that information from healthcare professionals was either lacking or inconsistent. Healthcare professionals should consider providing MS specific advice and deliver tailored materials addressing the needs of pwMS.

Strengths and limitations

The review expanded our knowledge of the factors associated with PA and exercise participation in pwMS. The findings of this review synthesised three new analytical themes, reinforced existing knowledge, and enhanced our knowledge of the factors, such as COVID-19 restrictions, social stigma, social obligation, online classes, wearable technologies, enjoyment, impact on identity, and lack of immediate benefits. Methods were implemented to ensure rigour and transparency. Some of the stages were completed by only one researcher. The findings are mainly dominated by the views of women with RRMS living in English speaking developed countries. The age groups, level of activity, and disability level of MS were not well-reported in the studies. This qualitative review could not explore the effects of participant characteristics, type, volume, intensity, frequency, duration, and level of activities on PA and exercise participation. In the literature, the terms physical activity and exercise were used interchangeably, therefore it was not possible to distinguish the differences between them.

Conclusion

External and internal factors influence the physical activity and exercise participation of pwMS. PwMS adopt a range of strategies to sustain PA and exercise participation. Healthcare professionals could play a role in the physical activity and exercise participation of pwMS by initiating and reinforcing the facilitating factors and advising and offering support on the barriers.

Acknowledgements

This work was submitted by Chung Tak Chan as a Dissertation in partial fulfillment of the course MSc Physiotherapy (Pre-registration) at the University of Brighton.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.