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Youth-centered approaches are needed to support self-management-related concerns for youth with multiple sclerosis during the transition to adult care.

Self-Management in Youth With Multiple Sclerosis During Transition to Adult Care and Adulthood: A Qualitative Study Using Interpretive Description

Despite the benefits of regular physical activity (PA), most adults with multiple sclerosis (MS) are insufficiently active. Identifying the motivational correlates of PA is necessary to facilitate health behavior change. The extent to which the constructs of psychological need satisfaction and motivational regulations associate with self-determined PA in adults with the disease was examined.

Individuals with MS were provided a link to a web-based survey. There were 290 respondents: 242 women and 48 men aged 22 to 71 (mean ± SD, 49.50 ± 12.05) years with primarily mild to moderate mobility impairment who completed the Psychological Need Satisfaction in Exercise scale, the Behavioral Regulation in Exercise Questionnaire, and the International Physical Activity Questionnaire.

Path analysis revealed that PA was best predicted by integrated regulation, competence, and mobility, explaining 28% of the variance in PA behavior. All 3 need satisfaction variables (relatedness, competence, and autonomy) and mobility impairment accounted for 43% of the variance in integrated regulation.

Increasing satisfaction of the need for relatedness, competence, and autonomy can lead to more integrated and internally motivated PA engagement in adults with MS.

From the Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT, USA (NM, SS, SLK). 

:Susan L. Kasser, PhD, Department of Rehabilitation and Movement Science, University of Vermont, 106 Carrigan Dr, Burlington, VT 05405, USA; 

 The authors declare no conflicts of interest.

Multiple sclerosis (MS) is a neurodegenerative disease that presents with a range of symptoms that coalesce to decrease function

 As such, physical activity (PA) is often recommended,

 especially because regular participation confers a variety of health benefits.

 Benefits of being physically active for individuals with MS include, among other outcomes, improved fatigue, mood, mobility, cognition, and quality of life.

 Despite the value of regular PA, most adults with MS are insufficiently active to derive such outcomes and optimize function.

 In fact, research indicates that individuals with MS are 2.3 times less likely to report that they are meeting the recommended health guidelines of moderate to vigorous PA (MVPA) than individuals without MS.

 In addition, PA levels decline over time,

 which further compounds the problem and worsens symptoms and health.

Considering the low PA participation rates of individuals with MS and the evidence that sedentary behavior is associated with increased risk of comorbidities,

 understanding the motivational underpinnings of PA in this group is necessary. One theoretical approach that is useful in identifying the motivational correlates of PA and facilitating health behavior change is self-determination theory (SDT).

 According to SDT, one’s level of motivation exists on a continuum from intrinsic (engaging in the behavior for its inherent satisfaction) on one end to extrinsic (engaging in the behavior for some other outcome) on the other end. Because many health-promoting behaviors tend to be more extrinsic in nature,

 the extent to which extrinsic motives become more or less autonomous and valued over time depends on the degree to which the behavior is internalized and regulated. The most internalized form of extrinsic motivation is that which is integrated and reflective of behavior that is personally relevant or of value, whereas behaviors that are externally regulated and controlled are initiated in response to some external reward or demand. This is particularly important, given that those with more autonomous and self-determined motivation will experience greater interest, more confidence, and longer behavioral persistence.

 This has also been found to be true for those with MS. Riemann-Lorenz and colleagues

 found that autonomous motivation had a positive effect on long-term PA adherence in those with the disease. Other studies have also highlighted the association between more autonomous motivation and greater PA in this group.

Although these findings are important to our understanding of PA behavior in adults with MS, it is also necessary to understand how motivation becomes more autonomous. From an SDT perspective, the degree to which an individual’s motivation will be more autonomously regulated depends, in part, on the existing social context. Supportive interactions with significant others that satisfy a person’s basic psychological needs for competence, autonomy, and relatedness are most conducive to fostering self-determined motivational regulations.

 In terms of PA, the more individuals experience a higher degree of satisfaction of their needs for competence, autonomy, and relatedness around being active, the more they become self-determined to initiate and maintain their activity behavior. However, few studies have examined autonomy-supportive contexts facilitating the development of internalized and self-regulated motivation for PA in individuals with MS. Kosma

 found that psychological need satisfaction had a large effect on motivation, which, in turn, had a significant association with PA in their study sample. Other research has also shown that autonomy-supportive interactions with spouses offer a context for greater satisfaction of the need for relatedness, competence, and autonomy and facilitate self-determined PA behavior in adults with MS.

Despite numerous studies underscoring the importance of self-determined PA behavior, SDT research examining both internalized and self-regulated motivation simultaneously in adults with MS remains limited. As such, the present study sought to examine the extent to which psychological need satisfaction and motivational regulations associate with PA in adults with MS. With such insight, behavioral change and maintenance interventions can be better conceived and delivered to those with MS, who can benefit from persistent participation in PA.

Individuals with MS were recruited through a regional MS chapter in the northeast United States. An email describing the purpose of the study and providing a link to the web-based survey was sent to those associated with the organization. Participants were informed that their involvement in the research necessitated only 1 completion of the survey and that all information they provide would be anonymous. They were also informed that completion of the surveys was strictly voluntary and that consent was implied from those responding to the survey. Individuals were included if they had physician-diagnosed MS, were 18 years or older, and had the cognitive capacity to complete the online survey. Eligibility was determined via self-reported answers to survey questions that assessed the requisite criteria. Approval for the study was obtained from the University of Vermont institutional review board.

Participants reported their date of birth, sex, year they received a diagnosis of MS, and perceived mobility disability, using the Patient Determined Disease Steps (PDDS) scale.

 Fear of falling was also assessed using the Falls Efficacy Scale–International.

The 18-item Psychological Need Satisfaction in Exercise (PNSE) scale

 was used to assess each of the 3 psychological needs (relatedness, competence, and autonomy) in a PA context. Each item is scored from 1 (false) to 6 (true), with higher scores reflecting greater need fulfillment. The validity and reliability of each PNSE subscale has been documented in exercise.

The Behavioral Regulation in Exercise Questionnaire (BREQ-3)

 was used to measure the reasons why participants exercised. The 24-item questionnaire operationalizes exercise motivation across a self-determination continuum and includes subscales that assess intrinsic, integrated, identified, introjected, external regulation, and amotivation. Participants respond to each item on a 5-point Likert scale, anchored by 0 indicating “not true for me” and 4 indicating “very true for me.” Previous research supports the BREQ’s multidimensional structure and the internal consistency of each subscale.

The International Physical Activity Questionnaire (IPAQ)

 short form was completed to assess the frequency of mild, moderate, and vigorous PA during a typical week. The number of days the individual engages in activity for at least 10 minutes is reported, and the typical amount of time (in minutes) of activity on each of those days is noted. The IPAQ has been routinely used and found to be reliable as a self-report measure of PA in adults with MS.

Data analysis was performed using SPSS Statistics for Windows, version 26.0 (IBM). Observations with missing values were excluded from the analysis. For this study, PA was categorized into 3 levels: (1) inactive, with no reported minutes of MVPA in 1 week; (2) insufficiently active, with 0 to 149 minutes of MVPA in 1 week; or (3) meeting recommended guidelines, with equal to or greater than 150 minutes of MVPA in 1 week.

Subscale reliabilities were obtained using the Cronbach α. Pearson correlations were conducted to determine bivariate associations for continuous variables, and Spearman rho correlations were conducted between the SDT variables of competence, autonomy, and relatedness and exercise behavior.

A multistage path analysis approach was used to determine independent predictors of exercise behavior. This approach adds a relationship structure to the regression analysis that allows the capture of direct and indirect effects and comparison of the magnitudes of influence from each included variable.

 The analysis involved a model respecification method whereby path coefficients that did not meet the criteria of statistical significance and/or meaningfulness were deleted from the model.

 Paths in the model were deleted if: (1) the path regression coefficients were less than 0.05 or (2) the path regression coefficients were less than 0.10 when the path was not meaningful or did not make theoretical sense according to SDT. In this study, 2 regression analyses were performed, one in which PA behavior was regressed on the 5 behavioral regulations, the 3 psychological needs, and any significant univariate correlations between demographic variables and PA, and a second in which any significant behavioral regulation predictors of PA were regressed on the 3 psychological needs and the significant demographic variables. Last, bivariate correlations between demographic variables and the 3 psychological needs were appraised.

Participants included 290 individuals with MS: 242 women and 48 men aged 22 to 71 (mean ± SD age, 49.50 ± 12.05) years. Mean ± SD time since diagnosis was 11.87 ± 8.60 years, with falls ranging from 0 to 25 across the sample. Forty-one percent of respondents reported mild mobility impairment (PDDS score of 1), 34% reported moderate gait disability (PDDS score of 2–4), and 25% had substantial mobility impairment (PDDS score ≥ 5). Only 44.5% of the study sample met the recommended level of 150 minutes of MVPA. 

 provides demographic details of the study participants.

Descriptive data for the variables measured in the study are also in 

. The PNSE subscales of relatedness, competence, and autonomy were found to be highly reliable, with Cronbach α values of 0.95, 0.96, and 0.94, respectively. Reliability of each of the subscales of the BREQ-3 was also found to be high, with coefficients of 0.82, 0.86, 0.84, 0.84, 0.92, and 0.94 for amotivation, external regulation, introjected regulation, identified regulation, integrated regulation, and intrinsic motivation, respectively.

Bivariate correlations among demographic characteristics, SDT variables, and PA behavior are presented in 

, which are published in the online version of this article at IJMSC.org. There was a significant inverse correlation between mobility disability and PA (

 < .01) and between fear of falling and PA (

 < .01), indicating reduced activity levels with increasing walking impairment and fear of falling. Regarding the SDT variables, most correlations were statistically significant and in the expected direction. A significant inverse correlation was found between PA and amotivation (−0.26; 

 < .01), whereas positive and significant associations were observed between PA and introjected regulation (0.15), identified regulation (0.44), integrated regulation (0.44), and intrinsic motivation (0.38) (

 < .01 for all). No statistically significant relationship was found between external regulation and PA. In addition, autonomy was statistically significantly related to all but introjected regulation, relatedness to all but external and introjected regulation, and competence to all behavioral variables. PA was statistically significantly correlated with all 3 of the psychological needs, such that greater fulfillment of these needs related to increased PA.

 presents the final regression model. The overall model explained 28% of the variance in PA behavior (

 < .001), with significant contributions from integrated regulation (β = 0.23; 

 < .05). All 3 need satisfaction variables and mobility impairment accounted for 43% of the variance in integrated regulation (

 < .01), and mobility impairment (β = 0.19; 

 < .01) having significant independent associations. Finally, mobility impairment was significantly and inversely correlated with competence (

Considering the immediate and long-term health benefits of regular exercise participation, understanding how best to increase the reportedly low levels of PA observed in adults with MS is important.

 The present study lends support to promoting more PA in this population. Less than 50% of participants in the present study were meeting recommended levels of health-promoting PA. More concerning, of the 55% of individuals who were not sufficiently active, 23% reported no minutes of MVPA. Most notably, the present findings revealed that along with level of mobility, integrated regulation and satisfaction of the need to feel competent were statistically significantly associated with PA behavior. Moreover, all 3 need satisfaction variables—relatedness, competence, and autonomy—and level of mobility impairment accounted for a meaningful percentage of the variance in integrated regulation.

Although the PA behavior of participants in this study is lower than it is for those without MS,

 it was greater than or comparable with that observed in other MS research.

 The differing levels of reported PA can, in part, be attributed to the mobility limitations accompanying MS. The present results support previous findings that individuals with MS with increasing mobility impairment are not only less active but also engage in less intense activity.

 For participants in this study who met the recommended minutes of MVPA, 48% reported mild mobility impairment (PDDS score of 1), 39% reported moderate mobility impairment (PDDS score of 2–4), and 13% reported more severe mobility impairment (PDDS score of 5–7). In addition to mobility impairment, fear of falling was also statistically significantly associated with whether individuals with MS met the recommended levels of MVPA. This is not surprising, as those with MS who have increased fear of falling often curtail their PA.

 Although correlated with PA, fear of falling did not remain as a statistically significant independent predictor in the path model when considered in combination with the other variables. This was likely because of the significant contribution that motor impairment and mobility difficulties themselves make to fear of falling.

 In addition to being statistically significant, mobility impairment also made sense, given its association with PA.

 the analytical model revealed that each of the 3 psychological needs were significantly associated with behavioral regulation, which, in turn, significantly predicted PA. The SDT variables, along with mobility impairment, explained 28% of the variance in PA. Regarding behavioral regulation, only the more autonomous integrated regulation statistically significantly and independently contributed to PA behavior. It seems that for individuals in the present study, their PA had become more internalized and integrated, whereby they made decisions to engage in this behavior based on internal values and regulations rather than on external ones. In other words, these individuals likely saw being physically active as part of who they are and their identity and felt it personally important to be active. The present findings are similar to those of Fasczewski and Gill,

 who also found a significant and direct contribution of internalized regulation to PA. Although identified regulation (not integrated regulation) was shown to be the best predictor of PA in their study, this difference may likely be a result of the different versions of the BREQ instrument used across the 2 studies rather than the degree of internalization. In their study as well as ours, both external regulation and intrinsic motivation did not have statistically significant effects on PA. This study’s findings also align with those found across the research involving healthy adults. In a systematic review by Teixeira and others,

 there is consistent evidence to support the positive relationship between more autonomous forms of motivation and exercise behavior. It seems reasonable to find that external and introjected forms of motivational regulation did not significantly predict the PA of the present study participants. Previous research has not shown individuals with MS to exercise because of controlled motives.

 Instead, it is likely that participants in this study reflected a more autonomous and self-endorsed willingness to be physically active because of its personal value and utility.

 PA engagement in this group often centers around meeting goals of improved disease management and overall health

 rather than on the expectations of others, or because it is inherently pleasurable.

The present study extends the foundational research on self-determination and PA in those with MS by examining both the motivation and what underpins such motivation. According to SDT, satisfaction of the basic psychological needs for autonomy, competence, and relatedness is considered essential to the development of internalized motivation and behavioral outcomes.

 In the present study, need satisfaction explained 43% of integrated regulation, with satisfaction of the need for competence found as a significant independent predictor. This finding is consistent with the postulates and motivational sequence observed in other SDT research.

 Unlike the present findings, Fasczewski and Gill

 found self-efficacy, along with the SDT motivation constructs, to be a strong predictor of PA, with identified regulation and self-efficacy explaining 20% of the variability in this outcome. In the present model, self-efficacy was not a statistically significant predictor and did not offer anything more to the model, in part because of the statistical approach that differed across the 2 studies. In the previous study, self-efficacy was modeled as a copredictor of PA rather than as a predictor of behavioral regulation, as in the present research. Specifically, SDT posits that the basic psychological needs for autonomy, competence, and relatedness are essential to the development of internal motivation, which then promotes PA. In addition, it has also been shown that self-efficacy does not always associate with PA in individuals with MS

 and that there is a conceptual difference between perceived competence for activity and activity self-efficacy.

 Although self-efficacy centers around the belief that one can execute a specific task within a given circumstance,

 perceived competence is the need to master personally meaningful and challenging tasks by exerting control over one’s environment.

Because behavior that is integrated and internally regulated leads to greater engagement and adherence,

 the present findings highlight the importance of supportive contexts that satisfy the psychological needs for relatedness, competency, and autonomy in facilitating self-determined PA in adults with MS. PA practitioners are well positioned to create motivational climates that support these very needs. Need-supportive contexts are those in which practitioners foster perceptions of belonging and connectedness through the ways in which they conduct their programs and interact with participants, enhance feelings of competence and capability by structuring and scaffolding activities, and promote feelings of autonomy and volition by offering choices around PA. By doing so, they have the potential to enhance the internalized and self-regulated PA motives of those with MS.

Some study strengths and limitations should be noted. This study adds to the current research in MS, as few studies have tested a more complete application of the SDT sequence in a PA context. It is one of the first studies to theoretically test and empirically examine the role of need satisfaction in fostering more internalized forms of behavioral regulation and its association with PA in those with the disease. The study also used a validated measure of PA and, more importantly, examined PA in accordance with the recommended guidelines for health-enhancing outcomes.

Although the present analytical approach corroborated and extended existing research, the study design and model, although informative, were associative, which limits the ability to make causal inferences. In addition, the model was not inclusive of all variables conceived to contribute to self-determined behavior. It has been suggested that other constructs, such as participation motives, orientations, and need-supportive settings and interactions, be included to derive greater understanding and more fully explain the drivers of motivation.

 Another consideration is that PA levels were derived through self-report. Although the IPAQ is often used to measure PA in individuals with MS, subjective reports of moderate and vigorous PA rely on relative intensity, and those who are less fit tend to overestimate.

 Using an objective measure would increase the validity of these results. The study is also limited in its generalizability. The sample underrepresented men and mostly consisted of individuals who reported more mild disability and 0 to 1 fall. Thus, the model and its resultant relationships might not be representative of men and/or others with MS who have greater functional challenges and more falls and/or fear of falling. It might be prudent to explore the SDT model with a larger and more functionally diverse sample to better understand the motivational profiles in these individuals.

In conclusion, despite the acknowledged limitations, the study findings suggest that fostering increased satisfaction of the need to feel relatedness, competence, and autonomy around PA has the potential to promote greater internalized motivation for PA participation in adults with MS. Because individuals are more likely to be self-regulated and autonomously motivated to be physically active in settings where they experience the satisfaction of these needs, practitioners might consider strategies that include multiple contexts and support systems to ensure these needs are met.

Health and physical activity (PA) practitioners who can help foster relevance, competence, and autonomy around PA can enhance the internalized and self-regulated PA motives of individuals with multiple sclerosis.

Motivation for Physical Activity in Adults With Multiple Sclerosis: A Self-determination Theory-Based Approach

Few multidisciplinary rehabilitation studies with a heterogeneous design have focused on individuals with multiple sclerosis (MS). This study compared subjective-reported changes in performance and satisfaction with daily activities among moderately and severely disabled individuals with MS during a 2-year, multidisciplinary, group-based, outpatient rehabilitation program comprising education in self-management and compensatory techniques, exercise, and guided peer support.

Thirty-eight adults with moderate disability (Expanded Disability Status Scale [EDSS] score of 4.0–5.5, 74% women, mean age of 48) and 41 individuals with severe disability (EDSS 6.0–8.5, 63% women, mean age of 48) were assessed at baseline and after 12 and 21 months of outpatient rehabilitation using the Canadian Occupational Performance Measure (COPM). Group × time interactions were analyzed using mixed analysis of variance. Participants’ explanations of reasons for changes in activity performance were collected via semistructured interviews and analyzed content.

Statistically significant improvements in COPM performance and satisfaction scores were reported in both groups from baseline to 21 months of rehabilitation. No significant between-group differences in improvement were observed. The self-reported reasons for improvement were mainly linked to environmental factors.

The outpatient rehabilitation program, including 4 themes—cognition, mood, energy conservation, and body control—improved the self-reported performance of patients with MS with moderate and severe disabilities. Environmental factors warrant consideration during rehabilitation.

From the GeroCenter Foundation for Aging Research and Development (MEK, KK, PE) and Faculty of Sport and Health Sciences (AH), University of Jyväskylä, Jyväskylä, Finland; South-Eastern Finland University of Applied Sciences, Mikkeli, Finland (MEK); Masku Neurological Rehabilitation Centre,Masku, Finland (PH); Finnish Neuro Society, Masku, Finland (PH, JR); University of Turku, Turku, Finland (PH, JR); Department of Physical Medicine and Rehabilitation, Central Finland Health Care District, Jyvaskyla, Finland (AH); and Research Department, Social Insurance Institution of Finland, Helsinki, Finland (A-LS). 

: Maarit E. Karhula, PhD, South-Eastern Finland University of Applied Sciences, Patteristonkatu 3D, 50101 Mikkeli, Finland; email: maarit.karhula@gmail.com.

We thank all the people with MS who participated in this study; the interviewers, Tuija Heiskanen and Maikku Tammisto; and the district coordinators of the Finnish MS Society, Annika Ingves, Anne Huuskonen, and Hannu Kapanen, for their participation in data collection. The study was a part of the first author’s dissertation “Participation of People with Multiple Sclerosis in Everyday Life” published by University of Jyväskylä, Finland.

 The study was performed as a part of a larger project funded by the Social Insurance Institution of Finland, and this work was supported by the Finnish Cultural Foundation’s South Savo Regional Fund.

Multiple sclerosis (MS) is a chronic, progressive, and an unpredictable inflammatory autoimmune disease of the central nervous system.

 Various combinations of problems at the body-function level, such as fatigue, bladder dysfunction, impaired tactile perception, pain, muscle weakness, spasticity, and poor walking balance,

 hinder functioning in everyday life. The International Classification of Functioning, Disability, and Health (ICF) strongly recommends that various environmental and personal factors

 be considered when focusing, planning, and conducting holistic, multidisciplinary MS rehabilitation.

 found moderate evidence supporting multidisciplinary rehabilitation for longer-term gains at the ICF levels of activity and participation. However, the review called for multidisciplinary rehabilitation programs that target long-term functional outcomes, thereby engaging, educating, and empowering patients and their caregivers.

A multiprofessional, 2-year, group-based, outpatient rehabilitation program was developed and implemented to answer the call for holistic, multifaceted, personalized, and goal-oriented rehabilitation for individuals with MS.

 Our interest in this study was to investigate whether individuals with severe and moderate disability would attain the primary goal of the rehabilitation, which is improvement in performance and satisfaction with daily activities, as measured using the Canadian Occupational Performance Measure (COPM). Disease severity was measured using the Expanded Disability Status Scale (EDSS).

 We hypothesized that on the participation level, those with severe disability would improve as much as those with lesser disability. We were also interested in whether the 2 groups would offer different reasons for changes.

The study was approved by the research ethics committee of the Social Insurance Institution of Finland, and all the participants gave their written informed consent, according to the Declaration of Helsinki. The study was retrospectively registered with the International Standard Randomised Controlled Trials Number registry (identifier: 72556817).

The study sample comprised individuals with MS participating in a 2-year, multidisciplinary, group-based, outpatient rehabilitation project conducted by the Finnish Neuro Society, the Social Insurance Institution of Finland, and the GeroCenter Foundation for Aging Research and Development. Rehabilitation professionals from the Finnish Neuro Society, with local health care professionals, recruited participants from 3 areas of Finland: Helsinki, Kuopio, and Turku.

Recruitment was implemented from May 2010 to August 2010 using convenience sampling. Predefined inclusion criteria were ages 18 to 62, confirmed diagnosis of MS, and restrictions on functioning in at least 2 of the following 4 focal domains: cognition, mood, fatigue, and body control. Restricted functioning in these domains was assessed subjectively and by a rehabilitation physician and coded as restrictions vs no restrictions. Exclusion criteria were a Mini-Mental State Examination score less than 20 of 30 (ie, severe cognitive decline), a Beck Depression Inventory II score greater than 40 of 63 (ie, severe depression), an EDSS score less than 4.0 or greater than 8.5, or any other medical or mental condition precluding participation.

Sociodemographic data, including sex, age, housing status, receiving a disability pension, and disease characteristics (including disease duration and subtype), were collected before rehabilitation. Severity of MS was evaluated by a neurologist using the EDSS. The EDSS score ranges in increments of 0.5 from 0 (no impairment) to 10 (death).

The primary outcome measure was the client-centered COPM, which is designed to identify clients’ occupational performance problems.

 The COPM is a semistructured interview addressing the activities the client wants, needs, or is expected to perform. First, the client and the therapist explore the different areas of daily life, including self-care, productivity, and leisure, and lists the activities subjectively experienced as difficult to perform. The client rates the importance of each of these activities on a 10-point scale. Next, the client chooses up to 5 of the most important activities and rates them for performance and satisfaction on a 10-point scale (1 = unable to do it at all/not satisfied at all; 10 = able to do it extremely well/extremely satisfied). Finally, for each rated activity, mean scores for performance and satisfaction are calculated. Individuals were assessed at baseline (T0) and after 12 months (T1) and 21 months (T2) of rehabilitation. At T1, they were asked to rate their performance and satisfaction with the problems prioritized during the baseline COPM interview, blinded to their T0 assessment scores (blind scores). In addition, at T2, clients were asked to give their reasons for change with the open question: How would you explain your improving, unchanged, or deteriorated performance in the activities of everyday living identified by the COPM? The interviews were tape recorded. The main reasons given for changes in performance in each activity were summarized from the recorded data and transcribed. All the interviews were implemented using a literal protocol for assessment by 4 occupational therapists who had no involvement in the rehabilitation program.

The goal of the 2-year, multidisciplinary, group-based rehabilitation program was to provide participants with a means to manage the effects of MS that would support their active participation in everyday life. The intervention was designed based on the current literature on MS, MS rehabilitation, and professional experience.

 The themes of the rehabilitation program addressed the most common participation limitations experienced by patients with MS: cognition,

 Group sessions included not only the dissemination of information on the themes and on compensation strategies in everyday life but also opportunities for peer support and the sharing of experiences of coping strategies that are helpful in everyday life. Participants were also instructed in-home exercises that were related to the themes.

Each theme was implemented in 2 versions: a short version comprising five, 3-hour sessions and 1 whole-day session (1 semester), as well as a long version consisting of ten, 3-hour sessions and 2 whole-day sessions (2 semesters). Participants attended sessions on 2 to 4 themes in groups of 4 to 6 individuals. Participants chose themes based on their needs and personal goals in relation to the ICF activity and participation levels. Each participant attended 20 half-day sessions and 4 whole-day sessions in total during the 2-year rehabilitation program.

Caregivers could participate in 1 half-day and 1 whole-day session each semester. Each participant had a personal supervisor who was responsible for coordinating the participant’s program and cooperating with other institutions and communities when necessary. Two rehabilitation professionals from different disciplines (ie, physiotherapist, psychologist, neuropsychologist, occupational therapist, nurse, social worker) guided the theme groups according to a detailed handbook, which is available in Finnish on request from the authors. In addition to group meetings, the rehabilitation program included 3 to 5 individual home visits for individual-based assessment of functioning, goal setting, and guidance.

Quantitative data were analyzed using SPSS Statistics for Windows, version 21.0 (IBM). To compare changes between the moderately and severely disabled MS groups in their performance of and satisfaction with everyday living across T0, T1, and T2, scores were analyzed by mixed analysis of variance with a between-subject factor. First, mixed analysis of variance was conducted to ascertain possible interaction between the moderately or severely disabled MS groups (between-subjects factor) and time (within-subjects factor) on their performance of and satisfaction with everyday activities. If no interaction was observed, follow-up tests were performed to determine possible main effects for either factor (ie, group or time). Post hoc pairwise comparison tests were performed with Bonferroni correction.

Before the analysis, the main assumptions of the data were assessed. Normal distribution of the data was confirmed by a box plot and the Shapiro-Wilk test (

 > .05). No outliers were observed in either scatterplots or box plots. Moreover, the assumption of sphericity was tested using the Mauchly Test of Sphericity. The proportions of participants who reached a clinically relevant change were analyzed using the thresholds proposed by Eyssen et al

 (> 1.4 points for COPM performance and > 1.9 points for COPM satisfaction).

Qualitative data were analyzed by theory-driven content analysis.

 Before starting the analysis process, the investigators (M.E.K, K.K.) agreed on the steps to be followed in the content analysis. First, 1 investigator (K.K.) condensed the reasons for change into plain expressions, created a table, and imported it into an Excel spreadsheet (Microsoft Corp). The other investigator (M.E.K.) agreed or disagreed with the expressions used. The first investigator (K.K.) then continued the analysis by coding the plain expressions that were mutually agreed on into the ICF components and submitting the results to the other investigator (M.E.K.) for confirmation. For example, a client who had selected “carrying objects” as a problem in everyday life gave as a reason for postintervention change that “although my condition is now worse than before and I can’t use a walker, I can carry objects better because I now use a wheelchair. I am also satisfied that I can carry objects on my own.” This meaning unit was condensed to the plain expression “doing daily tasks in a new way.” The condensed meaning unit was then coded into the personal factors component of the ICF. Finally, the investigators discussed points of disagreement and reached a consensus. A third investigator (A.-L.S.) was available for consultation when a consensus could not be reached.

Ninety individuals with MS started the rehabilitation program and 79 were included in the analysis. Eleven withdrew from the study, owing to lack of motivation (n = 4), changed health condition (n = 2), unsuitability for a group-based intervention (n = 1), refusal to take part in assessments (n = 2), assessments only partially conducted (n = 1), and in-patient care (n = 1). The study flowchart is presented in 

 (published in the online version of this article at ijmsc.org).

The characteristics of the participants with moderate (n = 38) and severe (n = 41) disability are presented in 

. No statistically significant between-group differences were observed in age, disease duration, sex, or proportion of those living alone or receiving a disability pension. However, there were more cases of relapsing-remitting MS in the moderately disabled group and more cases of secondary progressive MS in the severely disabled group. No within-group or between-group differences, which were measured using the 

 test, were found in EDSS scores during the intervention.

No between-group differences were found in COPM performance (

 = .80) between the moderate and severe groups during the 21-month intervention. In both groups, COPM performance and satisfaction scores improved significantly (both 

 < .001). No significant group × time interaction was found in assessments of COPM performance (

Post hoc analysis with a Bonferroni adjustment revealed that COPM performance in the moderately disabled group improved significantly from T0 to T2 (1.0; 95% CI, 0.2–1.8; 

 = .006). The COPM performance improved significantly in the severely disabled group from T0 to T2 (1.2; 95% CI, 0.4–1.9; 

 = .001) and from T1 to T2 (0.7; 95% CI, 0.1–1.3; 

 = .016). The COPM satisfaction in the moderately disabled group also improved significantly from T0 to T2 (1.5; 95% CI, 0.6–2.5; 

 < .001) and from T0 to T1 (1.1; 95% CI, 0.3–2.0; 

 = .004), as well as in the severely disabled group from T0 to T2 (1.6; 95% CI, 0.7–2.6; 

 < .001) and from T0 to T1 (1.0; 95% CI, 0.2–1.8; 

No significant differences were found between the moderately and severely disabled groups in the proportion of clinically relevant changes in COPM performance or satisfaction scores. A clinically relevant change (> 1.4 points) in COPM performance was reached by 35 participants (44%). The threshold value for clinically relevant change in COPM satisfaction (1.9 points) was reached by 31 participants (39%).

Participants presented 171 reasons for improved, 103 reasons for stable, and 77 reasons for deteriorated performance in activities of daily life. Over 80% of the reasons for improvement were linked to the ICF environmental and personal factors components. Reasons for stable or declining performance were most commonly linked to the ICF personal factors component (

). The most prevalent reasons linked to the personal factors component were general state of health, a new way of doing daily tasks, and a new way of dealing with situations and activities. Both improvement and decline in everyday activities were also attributed to general health condition. Reasons linked to the environmental factors component included the physical environment, such as devices and environmental modifications, the social environment; and assistance. Furthermore, using different kinds of formal and informal services was cited as improving everyday activities. The reasons linked to the body functions component were related to mental functions such as energy, drive, and pain. Only 5% of reasons were linked to the activity and participation component, and the most common reasons were caring for oneself by maintaining physical fitness and getting or not getting a job.

The results of this study indicate that performance of and satisfaction with everyday activities did not differ between moderately and severely disabled individuals with MS during a 21-month rehabilitation program. The most important finding was that both groups improved in COPM performance and COPM satisfaction during the intervention. Two years is a fairly short time in the context of MS progression. The changes in disease severity (EDSS score)

 between the baseline and postintervention measurements suggest that participants’ clinical status remained stable during the intervention. Thus, the results seem to be reliable and confirm earlier research findings that the performance of everyday activities can improve, even in individuals with progressive disease.

 However, note that the EDSS is not a very sensitive scale when used with participants, such as ours, whose scores are in the higher range.

The 4-theme (body control, mood, energy conservation, and cognition) multidisciplinary rehabilitation program, comprising components, such as theme-based sessions with peer support, home visits, and sessions for loved ones, succeeded in meeting the functional needs of individuals with moderate and severe MS, which vary from individual to individual and change as the disease progresses and symptoms change.

 This study supports a previous finding that disease severity does not explain the importance of specific activities.

 In addition, the intervention underlined the importance of addressing the primary goal of rehabilitation,

 which was improving participation in everyday activities in the later and advanced stages of MS.

Another interesting finding was that satisfaction with important everyday activities improved before the perceived improvement in performance. Satisfaction improved in both groups from the beginning to the middle of the rehabilitation program. This improvement seemed to continue, if not statistically significantly, to the end of the program. One explanation for this apparent trend is that the first step toward change is to identify a challenging activity. This could motivate working on the challenging activity and increase the feeling of mastery and satisfaction that comes with it. This is in line with the theory that as a person identifies goals that are relevant to them in everyday life, motivation also improves and behavioral changes become possible.

 However, 44% of the participants in this study clinically improved their COPM performance scores (threshold > 1.4 points

) and 39% clinically improved their COPM satisfaction scores (threshold > 1.9 points

). A previous study on the self-management of fatigue in individuals with MS similarly showed that clinically relevant changes were achieved more frequently in performance than in satisfaction.

A previous review showed that multidisciplinary rehabilitation improves participation outcomes up to 12 months after rehabilitation start.

 However, the present results indicate that improvement also occurred after the first year. Performance of everyday activities in the moderate disability group improved continuously during both rehabilitation years, whereas in the severe disability group, performance improved more during the second year. Hence, it is important to continue rehabilitation for a sufficiently long period. Moreover, consistent with a previous report,

 and with previous studies showing that challenges in everyday life are multiple,

 the self-reported reasons for changes in everyday activities were diverse. These results suggest that clinicians and individuals with MS should consider which factors influence specific everyday activities. In doing so, the ICF classification could be used as a frame of reference, assisting clinicians to select an appropriate intervention (eg, training, learning compensation strategies, or modifying the patient’s environment). Rehabilitation should concentrate on environmental factors and alternative ways of coping, especially in the advanced stages of MS.

Environmental and personal factors seemed to play an important role in the performance of and satisfaction with everyday activities of individuals with MS. In each rehabilitation phase—assessment, goal setting, and selecting the intervention—it is essential to eliminate hindering factors and promote facilitating factors.

 In clinical practice, it is important to recognize that even a small action can induce notable changes in everyday life if conducted in the right place and at the right time. For example, as in previous studies,

 identification of the need for assistive devices or environmental modifications resulted in major changes in everyday life.

The fact that personal factors are not defined in the ICF classification can lead to their being overlooked when planning interventions. The present findings encourage a stronger focus on personal factors. Participants accented a few personal factors that enable them to perform daily activities, such as learning new ways of doing activities or of awaiting challenging situations. Although these factors are closely connected to the ICF activity and participation component, they were also classified under personal factors because they represent changes in behavior patterns and styles.

 This study corroborates an earlier finding

 on the centrality of motivation, coping, and action planning in a health promotion intervention. Moreover, self-awareness of functional status has been observed to influence daily activities and participation.

The diversity of reasons for change in the performance of everyday activities found in this study highlights the value of other theories in addition to treatment theories. The enablement theory might give an insight into, and help model, complex functions that are multiply determined.

 Furthermore, different behavior change theories, such as the theory of intentional action control,

 can help us understand how individuals translate their goals into actions and how their actions can be supported to reach goals in complex situations that are affected by multiple factors. Moreover, integrating the 3 core elements of a client-centered approach—effective communication, partnership, and health promotion

—into the intervention process would ensure a person’s unique life situation and needs are its starting point.

The present study has several strengths. First, the design, which incorporated quantitative and qualitative data to ascertain the reasons for improvement, enables a multifaceted view of the outcomes of MS rehabilitation. Second, the study adopted a client-centered approach, prioritizing individuals’ subjective experience of changes in their performance of and satisfaction with self-selected everyday activities and their own views of the reasons for improvement. Third, compared with most of the interventions studied earlier, the current intervention was significantly longer in duration. Fourth, the COPM proved to be valid, reliable, clinically useful,

 and sensitive enough to measure changes in everyday activities from the perspectives of performance and satisfaction.

Despite the strengths of the study, its generalizability is influenced by the study population and study design. The sample was limited to individuals with moderate to severe disability. Therefore, the results cannot be generalized to individuals with mild disabilities. In addition, there was no actual observation of activity performance. The pre-post design without controls enabled comparison of improvement between moderately and severely disabled groups during the 2-year rehabilitation. However, to fully evaluate the effectiveness of multidisciplinary long-term MS rehabilitation programs, more studies with randomized controlled trial designs are needed.

The COPM as a self-evaluation method also has its limitations. Results could have been influenced by the phenomenon known as response shift. It is described as a cognitive appraisal process in which individuals’ self-assessment is influenced by different internal standards or values, or how individuals understand the concept being assessed.

 Over time or as the disease changes, the response shift can occur in 3 different ways: (1) internal standards of participation may change (recalibration); (2) values may change (reprioritization); and (3) the individual may define the concept differently than before (reconceptualization).

 The life situations of the participants changed during the 2-year rehabilitation program. In addition, the activities that some participants considered important at the beginning of the rehabilitation program no longer seemed important at the end of the rehabilitation program (reprioritization). Therefore, it is worth noting that in the 12-month or 21-month assessments, approximately 10% of the activities were such that participants did not assess improvement in them. For example, walking the dog was no longer relevant after its death, or, owing to worsening of the disease, a previously important activity, such as sauna, no longer offered a pleasurable experience (recalibration).

In conclusion, the 2-year, multidisciplinary, group-based, outpatient rehabilitation program improved performance of and satisfaction with everyday activities among individuals with moderate and severe MS. However, the use of a pre-post study design without controls limits the generalizability of the results. Although self-reported reasons for change during the rehabilitation were diverse, personal and environmental factors seemed to have an important role. Therefore, it is recommended that participants’ personal experiences of the factors affecting their everyday activities are regularly captured during the rehabilitation process.

The 2-year, multidisciplinary, group-based, outpatient rehabilitation program similarly improved the performance of everyday activities in individuals with moderate and severe disability.

Self-reported Reasons for Changes in Performance of Daily Activities During a 2-Year Multidisciplinary Multiple Sclerosis Rehabilitation

 feature research on multidisciplinary approaches to managing multiple sclerosis, ranging from the challenges of aging to emerging therapeutic technologies.

Comorbidity, Polypharmacy, and Aging in Multiple Sclerosis

Ruth Ann Marrie, Jacquelyn Bainbridge, Patty Bobryk, Jeff Wilken, Jennifer S. Graves, Renee Stewart, Rachael Stacom, Mona D. Bostick, Maureen T. Choman, Frederick W. Foley, John R. Corboy, Scott D. Newsome, Le H. Hua, Yinan Zhang, Sarah A. Morrow

This narrative review highlights how the increasing prevalence of comorbidities and polypharmacy in aging MS populations impacts disability progression, treatment safety, and overall quality of life. The development of multidisciplinary care models that integrate pharmacists and geriatric principles may help to better manage these complex medical profiles and improve patient adherence.

Exploring Factors and Nonpharmacological Interventions Associated With Respiratory Function in People with Multiple Sclerosis: A Scoping Review

Amani M. Assiry, Ali A. Alammari, Ashley Parish, Brooks C. Wingo

This scoping review identifies that while lung function often remains stable in MS, factors such as disease progression, fatigue, and thoracic kyphosis are associated with respiratory decline. The research emphasizes that nonpharmacological interventions, including respiratory muscle training and Pilates, show promise in improving respiratory outcomes though larger and longer trials are needed.

This month’s issue of IJMSC features research on multidisciplinary approaches to managing multiple sclerosis, ranging from the challenges of aging to futuristic therapeutic technologies.

Katherine M. Sawicka, MD

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