Catherine M. Smith

“Tell me what you want, what you really really want….”: asking people with multiple sclerosis about enhancing their participation in physical activity

Purpose: This paper provides a review of research that emphasizes the importance of listening to the people whom health professionals serve when promoting participation and engagement in rehabilitation. We report on the development of an approach aiming to optimize long-term adherence in physical activity for people with multiple sclerosis (MS). This approach was very different to those based on current evidence-based exercise recommendations, although the objectives for both approaches were similar. Key message: We argue that only by ensuring that people living with chronic disability not only have a voice but a voice that is listened to, can health professionals truly engage in evidenced-based practice that works in application and meets the needs, desires and capabilities of people with MS and other chronic health conditions. Implications for Rehabilitation Participation in physical activity is important for people living with chronic disability to maintain long-term health and well-being and prevent secondary complications of disability. To truly engage in evidenced-based practice the needs, desires and capabilities of the people for whom the intervention is targeted need to be considered and addressed. Service development and refinement which draws on perspectives of people living with chronic disabling conditions may enhance longer term adherence.

How does fatigue influence community-based exercise participation in people with multiple sclerosis?

Purpose. Regular exercise is considered important for long-term health outcomes and fatigue management in persons with multiple sclerosis (MS); however, little is known about the experiences of individuals with MS-related fatigue, who participate in community-based exercise activities. The aim of this study was to describe the experiences of people with MS-related fatigue, who engaged in community-based exercise activities in order to discover how fatigue influenced their exercise participation. Method. In this study, we used qualitative methodology based on the interpretive description approach to collect and analyse data. Individuals with MS, who experienced fatigue and regularly participated in community-based exercise activities, were interviewed. Interviews were audiotaped and transcribed verbatim. Data were analysed using an inductive thematic approach with multi-step verification strategies. Results. We found that perceived control over MS-related fatigue influenced exercise choices in our participants. Furthermore, perceived control over fatigue was influenced by seven factors: wellness philosophy, a related goal, belief that control was possible, feeling safe and supported, ability to manage limits, being satisfied with trade-offs and positive definition of self. Conclusion. Identification of factors influencing perceived control over fatigue will assist health care providers when facilitating community exercise choices for people with MS.

Participant perceptions of a novel physiotherapy approach (“Blue Prescription”) for increasing levels of physical activity in people with multiple sclerosis: a qualitative study following intervention

Purpose: The aim of this study was to investigate experiences of participating in a feasibility trial of a novel physiotherapy intervention (Blue Prescription). The trial was designed to increase participation in physical activity for people with multiple sclerosis living in the community. Methods: We individually interviewed 27 volunteers from two New Zealand metropolitan areas at the conclusion of their participation in Blue Prescription. We asked volunteers about what participation in Blue Prescription had meant to them; how participants intended to continue with their physical activity; how the approach differed from previous experiences of physiotherapy encounters; and how Blue Prescription could be improved. Interviews were semi-structured, audio-recorded, transcribed verbatim, and analysed using a General Inductive Approach. Results: ‘Support’ was identified as a key theme with three sub-themes: ‘The therapeutic relationship’; ‘The Blue Prescription approach’; and ‘Supporting themselves’. We identified two additional themes ‘Motivation to participate’ and ‘Improving the Blue Prescription approach’. Conclusion: A novel approach (Blue Prescription) which facilitates engagement in higher levels of desirable physical activity was perceived by participants to be supportive, motivating and enabling. This approach might be particularly useful for people with multiple sclerosis ready to adopt new health-related behaviours. For future studies, this approach requires further refinement, particularly with regards to methods of communication and evaluation. Implications for Rehabilitation The Blue Prescription Intervention was perceived by participants to be supportive, motivating and enabling when attempting to increase levels of PA Participants with multiple sclerosis who were ready to adopt higher levels of PA appeared to be more receptive to the Blue Prescription intervention than those who were not Frequently used outcome measures might require further development or refinement in order to make better sense to people with multiple sclerosis living in New Zealand

The unique nature of fatigue in multiple sclerosis: prevalence, pathophysiology, contributing factors and subjective experience

Abstract Fatigue is a multidimensional and multifactorial symptom experienced in many neurological and non-neurological conditions. Fatigue in these conditions may be affected by pathophysiological, psychological and pharmacological factors which, in turn, may impact upon physical, cognitive and psychosocial domains leading to activity restriction and disability. This narrative review compares and contrasts prevalence, pathophysiology, contributing factors and the subjective experience of fatigue in four chronic health conditions; multiple sclerosis (MS), Parkinsons disease, cancer and human immunovirus/autoimmune deficiency syndrome. Whilst all conditions share certain factors, some aspects of fatigue may be unique to each condition. In addition, the mechanisms of fatigue may be particularly complex in multiple sclerosis. It is recommended that the nature of MS-related fatigue is explored in depth through qualitative methodology in order to inform future quantitative investigation and to refine current measurement scales which may fail to capture all aspects of this phenomenon.

The feasibility and short-term benefits of Blue Prescription: a novel intervention to enable physical activity for people with multiple sclerosis

Purpose: Participation in physical activity for people with Multiple sclerosis (MS) is important but can be difficult to sustain long-term. Facilitators for long-term adherence include choice over activity and control over level of engagement, coupled with support, advice and encouragement from a physiotherapist. This is the basis of Blue Prescription, a novel physiotherapy approach aimed at optimising long-term adherence with physical activity. We evaluated the feasibility and short-term benefits of Blue Prescription in people with MS. Methods: Twenty-seven people with MS (mean age: 51 ± 11 years, with a range of MS type and disability) were assessed at baseline and immediately post-intervention with the MS Impact Scale, MS Self-efficacy Scale, and European Quality of Life Questionnaire. Change in outcomes were analysed with Wilcoxon signed ranks tests. Results: All participants, irrespective of level of disability, were able to choose a physical activity and to engage in it. The physical component MS Impact Scale score significantly improved by a median change of 6.5 (95% CI = −10.5 to −2.0; p = 0.007; effect size = 0.38). There were no other significant changes in outcomes. Conclusion: Blue Prescription appears feasible and potentially beneficial, particularly in reducing the negative impacts of MS upon individuals, and thus warrants further evaluation. Implications for Rehabilitation Facilitators for long-term adherence for disabled people include choice over activity and control over level of engagement, coupled with support, advice and encouragement from a physiotherapist. Blue Prescription is a physiotherapy approach aimed at optimising long-term adherence with physical activity for people with multiple sclerosis. Blue Prescription appears to reduce the negative impacts of multiple sclerosis upon individuals.

Physical activity and lower-back pain in persons with traumatic transfemoral amputation: A national cross-sectional survey

Lower-back pain (LBP) is a common secondary condition following lower-limb amputation. The purpose of this study was to investigate LBP prevalence and the relationship between LBP and physical activity (PA) levels in a national sample of persons with traumatic transfemoral amputation (TFA). Questionnaires were mailed to a random sample of people with traumatic TFA (n = 322) from the New Zealand Artificial Limb Board national database. Of the participants who completed the survey (55% response rate), 64.1% reported LBP and 39.1% reported restricted PA due to LBP. There was no relationship between the PA levels of persons with and without LBP (chi-square = 2.11, p > 0.05). There was an equal distribution of persons with LBP in low, medium, and high PA subgroups. However, persons who reported restricted PA due to LBP had lower PA scores than persons with LBP and no restricted PA (chi-square = 11.56, p < 0.05). Based on our results, LBP is prevalent in the traumatic TFA population. PA levels are not influenced by the presence or absence of LBP. However, future studies investigating LBP coping strategies and using objective PA outcome measures might further elucidate the relationship between PA and LBP in this population.

Combining self-help and professional help to minimize barriers to physical activity in persons with multiple sclerosis: a trial of the "Blue Prescription" approach in New Zealand.

Background and Purpose: Increasing participation in physical activity is a goal for many health care providers working with persons with disability. In order to reduce the physical and social barriers to participation, there is a need to develop approaches that integrate self-help with professional help for autonomous yet supported health promotion. This study reports on an innovative program, entitled the “Blue Prescription approach”, in which physical therapists work collaboratively with persons with a disability to promote community-based physical activity participation. Methods: We trialed this collaborative approach with two physical therapists and 27 participants with multiple sclerosis (MS) over a three month period. We gathered qualitative data from four sources: (i) individual interviews with our participants, (ii) individual interviews with the physical therapists, (iii) clinical notes, and (iv) Advisory Group meeting notes. We then analyzed these data for categories to inform the content and resources required for delivery of the approach. Results: For most participants, the Blue Prescription approach facilitated regular engagement in the physical activity of their choice. The Advisory Group provided advice to help solve individual contexts that presented as challenges to participants. Based on review of interview transcripts, we identified four strategies or issues to inform the further development of Blue Prescription. Discussion and Conclusions: Evidence indicated that the Blue Prescription approach can provide a collaborative and flexible way for physical therapists to work with individuals with MS, to increase participation in community-based physical activity. To further develop the approach, there is a need to address issues related to the use of standardized measures and develop strategies to train physical therapists in collaborative approaches for promotion of physical activity. The integration of self-help and professional help provided by the Blue Prescription approach appeared to result in successful promotion of physical activity in persons with MS. Additional testing is required to examine its efficacy in other health care systems, in conditions beyond MS, and in terms of its economic impact. Video Abstract available (see Video, Supplemental Digital Content 1, http://links.lww.com/JNPT/A46) for more insights from the authors.

Systematic review of the psychometric properties of balance measures for cerebellar ataxia

Objective: To review systematically the psychometric properties of balance measures for use in people with cerebellar ataxia. Data sources: Medline, AMED, CINAHL, Web of Science and EMBASE were searched between 1946 and April 2014. Review methods: Two reviewers independently searched data sources. Cerebellar-specific and generic measures of balance were considered. Included studies tested psychometric properties of balance measures in people with cerebellar ataxia of any cause. Quality of reported studies was rated using the Consensus Based Standards for the selection of health status Measurement INstruments (COSMIN) checklist. Results: Twenty-one articles across which 16 measures had been tested were included for review. Using the COSMIN, quality of methodology in studies investigating psychometric properties of generic balance measures (n=10) was rated predominantly as ‘poor’. Furthermore, responsiveness has not been tested for any generic measures in this population. The quality of studies investigating psychometric properties of balance sub-components of the cerebellar-specific measures (n=6) ranged from ‘poor’ to ‘excellent’; however, Minimally Clinically Important Difference has not been determined for these cerebellar-specific measures. Conclusion: The Posture and Gait (PG) sub-component of the International Cooperative Ataxia Rating Scale (ICARS) demonstrates the most robust psychometric properties with acceptable clinical utility.

Walking is a Feasible Physical Activity for People with Rheumatoid Arthritis: A Feasibility Randomized Controlled Trial.

BACKGROUND Exercise has been recognized as important in the management of rheumatoid arthritis (RA). Walking is a low-cost and low-impact activity, requiring little supervision. It requires no specialist training, is suited to a variety of environments and is inherently a clinically meaningful measure of independence. The aim of the present study was to determine whether a designed walking programme for people with RA successfully facilitated regular physical activity in participants, without detriment to pain levels. METHODS Thirty-three people with RA were recruited from Dunedin Hospital rheumatology outpatient clinics and enrolled in a walking randomized controlled trial (RCT) feasibility study. Participants were randomly allocated to the walking intervention (n = 11) or control (n = 22) groups. Control participants received a nutrition education session, and the walking intervention group received instructions on a walking route with three loops, to be completed 3-4 times per week. The walking route shape was designed so that the length of the walk could be tailored by participants. Both groups were assessed at baseline and six weeks later. The primary outcome measures were feasibility, acceptability and safety. The principal secondary outcome was change in walking speed after the intervention. Additional outcome measures were a step-up test, activity limitations (on the Health Assessment Questionnaire), global well-being (on the European Quality of Life Questionnaire), self-efficacy for managing arthritis symptoms, self-efficacy for physical activity, daily pedometer readings and a daily visual analogue scale for pain. RESULTS Participants successfully completed the walk for the suggested frequency, indicating feasibility and acceptability. There were no reported adverse effects of participation and the walking intervention group did not have higher daily pain levels than the control group, indicating safety. The walking intervention group showed a pattern of improvements in self-efficacy and global well-being; no changes in these outcomes were noted in the control group. No outcome measure showed statistically significant between-group differences. CONCLUSIONS Walking appears to be a feasible, acceptable and safe intervention for people with RA. These findings inform the design and power requirements of larger trials of structured walking interventions. Copyright

How Fatigue Influences Exercise Participation in Men With Multiple Sclerosis

Researchers have suggested that men with multiple sclerosis (MS) experience lower self-efficacy than women with MS and have linked women’s self-efficacy with a sense of perceived control over symptoms and activities. Self-efficacy—the belief in one’s own ability to achieve an outcome—has also been linked to engagement in healthy behaviors such as exercise. We sampled men with MS to better understand how MS-related fatigue influences exercise participation. Guided by the interpretive description method, we interviewed 18 men about their fatigue and exercise experiences. One overarching theme and three subthemes were developed through multiple readings, author comparisons, and participant reflections. The men described a process of goal readjustment with regard to exercise that helped them stay engaged in meaningful physical activity despite fatigue. Health care professionals might consider introducing goal readjustment strategies to help men with MS-related fatigue retain perceived control over exercise engagement and achieve greater self-efficacy.