Adherence to behavioural interventions in multiple sclerosis: Follow-up meeting report (AD@MS-2)

Heesen, Christoph; Bruce, Jared M.; Gearing, Robin E.; Moss‐Morris, Rona; Weinmann, John; Hämäläinen, Päivi; Motl, Robert W.; Dalgas, Ulrik; Kos, Daphne; Visioli, Francesco; Feys, Peter; Solari, Alessandra; Finlayson, Marcia; Eliasson, Lina; Matthews, Vicki; Bogossian, Angeliki; Liethmann, Katrin; Köpke, Sascha; Bissell, Paul

doi:10.1177/2055217315585333

Cited by 14 publications

(13 citation statements)

References 19 publications

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“…Moreover, we observed different patterns of adherence in distinct pathologies: with a better adherence in PD and stroke than in MS. This lower adherence to treatment of the MS group might be due to the fatigue that this population experiences during treatment and in daily life (54). It is known that MS patients are faced with elevated challenges when following long-term intervention and there is an urgent need of future research focusing on solutions for continuity of care and exercise persistence in the MS population (55, 56).…”

Section: Discussionmentioning

confidence: 99%

Efficiency and Patient-Reported Outcome Measures From Clinic to Home: The Human Empowerment Aging and Disability Program for Digital-Health Rehabilitation

et al. 2019

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Background: The recent exponential growth of Digital Health (DH) in the healthcare system provides a crucial transformation in healthcare, answering to alarming threats related to the increasing number of Chronic Neurological Diseases (CNDs). New long-term integrated DH-care approaches, including rehabilitation, are warranted to address these concerns.Methods: The Human Empowerment Aging and Disability (HEAD) rehabilitation program, a new long-term integrated care including DH-care system, was evaluated in terms of efficiency and patient-reported outcome measures (PROMs) in 107 CND patients (30 with Parkinson's Disease, PD; 32 with Multiple Sclerosis, MS; 45 with stroke in chronic stage). All participants followed 1-month of HEAD rehabilitation in clinic (ClinicHEAD: 12 sessions, 3/week), then 1:3 patient was consecutively allocated to 3-months telerehabilitation at home (HomeHEAD: 60 sessions, 5/week). Efficiency (i.e., adherence, usability, and acceptability) and PROMs (i.e., perceived functioning in real-world) were analyzed.Results: The rate of adherence to HEAD treatment in clinic (≥90%) and at home (77%) was high. Usability of HEAD system was judged as good (System Usability Scale, median 70.00) in clinic and even more at home (median 80.00). Similarly, administering the Technology Acceptance Model 3 questionnaire we found high scores both in clinic/at home (Usefulness, mean 5.39 ± 1.41 SD/mean 5.33 ± 1.29 SD; Ease of use, mean 5.55 ± 1.05 SD/ mean 5.45 ± 1.17 SD, External Control, mean 4.94 ± 1.17 SD/mean 5.07 ± 1.01 SD, Relevance, mean 5.68 ± 1.29 SD/mean 5.70 ± 1.13 SD and Enjoyment, mean 5.70 ± 1.40 SD/mean 6.01 ± 1.08 SD). After ClinicHEAD, participation and autonomy in daily routine was maintained or even ameliorated (PD and stroke > MS). Whereas, increased functionality and participation in the MS group was found only after HomeHEAD intervention.Discussion: Our results suggest that a tele-health-based approach is both feasible and efficient in providing rehabilitation care to CNDs from clinic to home. Increasing and maintaining participation as well as autonomy in daily routine are promising findings that open up scenarios for the continuity of care at home through DH-care for CNDs.

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Section: Discussionmentioning

confidence: 99%

Efficiency and Patient-Reported Outcome Measures From Clinic to Home: The Human Empowerment Aging and Disability Program for Digital-Health Rehabilitation

et al. 2019

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“…While it is clear that healthy lifestyle is associated with better health outcomes in people with MS, little is known about longterm adherence to behavior change interventions for people with MS [20]. We aimed to assess barriers and enablers to long-term adherence in people with MS who self-enrolled in a healthy lifestyle intervention.…”

Section: Discussionmentioning

confidence: 99%

“…By contrast, multimodal intervention studies are scarce, even though they may be most effective [18], and effects may be multiplicative. In addition, as many trials lack longitudinal follow-up [19], an international multidisciplinary working group has called for more research in this area [20]. Lifestyle intervention trials can be difficult to design and conduct [21], but such evidence is needed to enable a shift in MS management towards a more holistic approach [22].…”

Section: Introductionmentioning

confidence: 99%

Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis

Barnard

Brown

Weiland

et al. 2018

Disability and Rehabilitation

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Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS. Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3-5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed. Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to "time-consuming" exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of personcentred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring. Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions. ä IMPLICATIONS FOR REHABILITATION A multimodal group lifestyle intervention may be useful to assist people with multiple sclerosis in information gathering, decision making, attitudinal changes, and practical strategies regarding health behaviors; as well as providing a sense of hope for the future and control over wellbeing. While participants are unlikely to engage with all components of a multimodal intervention to the recommended level, they are likely to make improvements to one or more health behaviors. Experiential learning, including going through recipes and ingredient lists, and practicing meditation and physical exercises, is helpful to instigate behavior change. The initiation and maintenance of behavior change was assisted by support from family, friends, and health practitioners; and practical strategies employed by participants, including planning, self-monitoring, and tailoring activities to ability and preference ARTICLE HISTORY

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“…A survey showed that 85% of 199 surveyed PwMS in the United States were willing to try a dietary intervention for at least 3 months[ 9 ]. However, few trials measure adherence, for example lifestyle changes, and outcomes beyond 12 months[ 10 ]. Furthermore, while many interventions in MS have focussed on a single health behaviour such as diet or physical activity, there is some evidence that a multimodal intervention, targeting a variety of risk-factors at once, may have benefits over and above the sum of benefits[ 11 ].…”

Section: Introductionmentioning

confidence: 99%

Health outcomes and adherence to a healthy lifestyle after a multimodal intervention in people with multiple sclerosis: Three year follow-up

et al. 2018

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BackgroundModifiable risk factors such as smoking and sedentary lifestyle adversely affect multiple sclerosis (MS) progression. Few multimodal behavioural interventions have been conducted for people with MS, and follow-up beyond 1 year is rare for lifestyle interventions. This study assessed adoption and adherence to healthy lifestyle behaviours and health outcomes 3 years after a lifestyle modification intervention, using generalized estimating equation models to account for within-participant correlation over time.Methods95 people with MS completed baseline surveys before participating in 5-day MS lifestyle risk-factor modification workshops. 76 and 78 participants completed the 1-year and 3-year follow-up surveys respectively. Mean age at 3-year follow-up was 47 years, 72% were female, most (62.8%) had MS for 5 years or less, and 73% had relapsing remitting MS (RRMS).ResultsCompared to baseline, participants reported clinically meaningful increases in physical (mean difference (MD): 8.0, 95% Confidence Interval (CI): 5.2–10.8) and mental health (MD: 9.2, CI: 5.8–12.6) quality of life (QOL) at 1-year, and physical (MD: 8.7, CI: 5.3–12.2) and mental health (MD: 8.0, CI: 4.2–11.8) QOL at 3-year follow-up. There was a small decrease in disability from baseline to 1-year follow-up (MD: 0.9, CI: 0.9,1.0) and to 3-year follow-up (MD: 1.0, CI: 0.9,1.0), which was not clinically meaningful. Of those with RRMS, compared to baseline, fewer had a relapse during the year before 1-year follow-up (OR: 0.1, CI 0.0–0.2) and 3-year follow-up (OR: 0.15, CI 0.06–0.33). Participants’ healthy diet score, the proportion meditating ≥1 hours a week, supplementing with ≥ 5000IU vitamin D daily, and supplementing with omega-3 flaxseed oil increased at 1-year follow-up and was sustained, although slightly lower at 3-year follow-up. However, there was no evidence for a change in physical activity and not enough smokers to make meaningful comparisons. Medication use increased at 1-year follow-up and at 3-year follow-up.ConclusionThe results provide evidence that lifestyle risk factor modification is feasible and sustainable over time, in a small self-selected and motivated sample of people with MS. Furthermore, participation in a lifestyle intervention is not associated with a decrease in MS medication use.

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Adherence to behavioural interventions in multiple sclerosis: Follow-up meeting report (AD@MS-2)

Cited by 14 publications

References 19 publications

Efficiency and Patient-Reported Outcome Measures From Clinic to Home: The Human Empowerment Aging and Disability Program for Digital-Health Rehabilitation

Efficiency and Patient-Reported Outcome Measures From Clinic to Home: The Human Empowerment Aging and Disability Program for Digital-Health Rehabilitation

Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis

Health outcomes and adherence to a healthy lifestyle after a multimodal intervention in people with multiple sclerosis: Three year follow-up

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