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NeuroRehabilitation 35 (2014) 105–112 DOI:10.3233/NRE-141090 IOS Press

Effectiveness of a novel community exercise transition program for people with moderate to severe neurological disabilities Michelle Ploughmana,b,∗ , Jennifer Shearsb , Chelsea Harrisa , Stephen H. Hogana , Olivia Drodgea , Sherry Squiresc and Jason McCarthya,b a Recovery

and Performance Laboratory, Faculty of Medicine, Memorial University, St. John’s, NL, Canada and Continuing Care Program, Eastern Health Authority, L.A. Miller Centre Eastern Health, St. John’s, NL, Canada c YMCA Northeast Avalon, St. John’s, NL, Canada b Rehabilitation

Abstract. PURPOSE: To determine the effectiveness of a community re-integration exercise initiative on function, mood, participation, and exercise adherence for persons with moderate to severe neurological conditions (stroke, multiple sclerosis, etc.). METHODS: We recruited 29 adults (able to walk at least 3 m with assistance) discharged from an outpatient rehabilitation program for the 10 week intervention which was comprised of two components: circuit training and guided transition to a standard gym setting. We evaluated participants before and after the intervention and at four month follow up, including functional balance and mobility using the Timed Up and Go Test, walking endurance using the 6 Minute Walk Test, health related quality of life (HR QoL) using a visual analogue scale, activity and participation using the Frenchay Activities Index and mood using the Hospital Anxiety and Depression Scale. RESULTS: Twenty-seven participants completed the intervention. The only significant improvement was in HR QoL. Forty-four percent of participants continued to exercise after cessation of the program. Those who continued to exercise (Exercisers n = 12) experienced more improvement in HR QoL than Non-Exercisers (n = 15). CONCLUSIONS: This re-integration initiative for people with neurological impairments improved HR QoL and facilitated independent exercise for 44% of participants. The novel component of the program, which facilitated transition to standard gym equipment, likely contributed to improved exercise adherence in the longer term. Keywords: Community-based, multiple sclerosis, Parkinson’s disease, stroke, neurological disorders, participation, quality of life

1. Introduction Neurological diseases, disorders and injuries, including multiple sclerosis (MS), Parkinson’s disease (PD), stroke, and acquired brain injuries, are a leading cause ∗ Address for correspondence: Dr. Michelle Ploughman, PT, PhD, Recovery and Performance Laboratory, 4th Floor L.A. Miller Centre, 100 Forest Rd., St. John’s, NL A1A 1E5, Canada. Tel.: +1 709 777 2099; E-mail: [email protected].

of disability in Canada (Tator, Bray, & Morin, 2007). As a result of these neurological conditions, individuals are left with physical, speech and language, and cognitive impairments which are often permanent. Although formal rehabilitation improves outcome, rarely is recovery complete (Cramp et al., 2010) and patient’s functional abilities often decline post-discharge (Cramp et al., 2010). People with stroke, for example, avoid environments that they perceive are challenging (traffic,

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doors, weather, obstacles, etc.) and gradually reduce the amount of walking they do in the community (Robinson, Matsuda, Ciol, & Shumway-Cook, 2013). Recent research suggests that exercise programs (10 – 12 weeks long), based in the community, improve walking, balance (Salbach, Howe, Brunton, Salisbury, & Bodiam, 2013) and cardiorespiratory fitness (Pang, Eng, Dawson, McKay, & Harris, 2005) in people with chronic neurological disabilities. Unfortunately most community exercise programs target people who are already ambulatory (Best et al., 2012; Garrett et al., 2013a; Tiedemann et al., 2012) and are time-limited, meaning that participants attend the sessions for as long as the program exists but do not continue independently so benefits of physical fitness are lost once the training stops (Garrett et al., 2013; Mead et al., 2007). Relatively few programs exist for people with neurological disorders other than stroke (Best et al., 2012) such as PD and MS, even though those patients may also benefit from training (Combs et al., 2011). For example, although people with MS benefit from communitybased training programs (Garrett et al., 2013), they exercise less than their non-MS counterparts (Motl & Gosney, 2008) and exercise participation decreases over time (Stuifbergen, Blozis, Harrison, & Becker, 2006). It is likely that in smaller cities, the numbers of people with MS, PD and other non-stroke neurological disorders are too small to justify disease-specific community programs; a mixed program may be more feasible. In order for people with disabilities to participate in community fitness and wellness programs in the long term, they need a combination of education, professional support, appropriate programming and accessible space (Winward, 2011). Patients report that they often feel insecure in community-based exercise programs that are not designed to meet their needs, or lack specialized support from physiotherapists (Lennon, Doody, Ni Choisdealbh, & Blake, 2013; Simpson, Eng, & Tawashy, 2011). Furthermore, few programs are designed for people with moderate to severe disability (i.e. indoor ambulator or wheelchair user) who are perhaps at greatest risk of inactivity and social isolation (Hakim et al., 2000). We designed a community-based exercise re-integration initiative to assist participants with major physical and cognitive impairments to take steps out of the health care system and back into the community. We wished to be inclusive of all people with neurological disability in our community. We aimed to maintain and improve functional activities such as walking, balance, and getting up from a chair but more importantly transition to inde-

pendence within the community facility beyond the 10 week program. We hypothesized that most participants would continue to exercise at four month follow-up.

2. Methods This study used a prospective cohort design; pretest, post-test and four month survey follow up. The Memorial University Health Research Ethics Authority evaluated the study proposal and determined it did not require ethics review due to the fact it entailed program evaluation. 2.1. Participants Participants were identified by their health provider and recruited in groups of ten from a rehabilitation outpatient service discharge database. Participants were included if they 1) had a neurological disability; 2) were ambulatory for at least 3 m with assistance; 3) could understand basic two-step commands, 4) received clearance from their family physician to take part in physical activity; and, 5) were available for the duration of the 10- week program. They were excluded if they were currently receiving rehabilitation. Participants and/or their family members signed informed consent confirming that they understood the terms and conditions of the program and the exercise facility. They signed permission to have personal data collected and disseminated once personal identifiers were removed. 2.2. Setting In order to acclimatize participants to a non-hospital setting and build community capacity, the program took place at the local YMCA, which was equipped with an open concept exercise area, smaller exercise areas, a track, gymnasium and pool. Although the building was accessible, endurance, balance and navigation were required to move about the facility and from the parking lot. Two pieces of exercise equipment were specifically designed to be used by people with disability (SciFit and NuStep). The remaining equipment included general purpose treadmills, bicycles, rowing machines, stair climbers, and weight machines; typical of standard public gymnasiums. Since the YMCA gym is a community-based enterprise, all participants required a membership; the cost of which depended on their assessed financial status.

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2.3. Exercise intervention

2.5. Outcome measures

The 10-week program, called ‘NeuroFIT’ (90 minutes, 2X week), consisted of two components: first a circuit training aspect located in a small exercise area which focused on improving walking balance and exercise tolerance and second, a facilitated transition to the standard gym equipment located in the general training area of the YMCA. Both aspects were designed by experienced physiotherapists. The circuit based intervention (adapted from previously developed programs TIME (Salbach et al., 2013) and FAME (Eng et al., 2003)) included a warm-up and ten stations focusing on improving 1) balance, 2) functional strengthening, 3) stepping, 4) seated reaching tasks, 5) standing reaching tasks, 6) cardiovascular training, 7) upper limb strengthening, 8) standing weight shifts, 9) walking variations, and 10) advanced dynamic balance. The transition aspect of the program was tailored to the participant and began as early as week two of the program and as late as week six. As the three station challenge levels were mastered, circuit stations were gradually replaced by time in the open gymnasium (transition component). During the transition component participants were assigned an exercise partner (volunteer) who, with the help of the physiotherapist, worked together to target, problem-solve and adapt to exercise equipment within the open gymnasium. The goal being that by the end of the ten weeks, participants would be exercising entirely in the main gym area using the equipment independently and maintaining activity levels within the 4–6 range of the Borg Perceived Level of Exertion (PLE) 1–10 point scale (Borg, 1998). We recorded all aspects of both portions of the program in individual participant sections of station/gym documentation binders.

Participants were evaluated three times; prior to commencing the intervention (pre), at the completion of the intervention (post), and at the four month follow up. We measured functional balance and mobility using the Timed Up and Go Test (TUG) (Cole, 1995), a timed test in which the subject rises from a chair, walks 3 m and returns to sit on the chair. We measured walking endurance using the 6 Minute Walk Test (6MWT) (Cole, 1995) which asks the subject to walk as quickly and safely as they can for six minutes while the distance walked is recorded using an odometer wheel. TUG and 6MWT, measured before and after the intervention, were modified such that we permitted and documented physical assistance and supervision during the tests. At each time point (pre, post and follow up) participants completed a questionnaire that measured health related quality of life (HR QoL) using the visual analog scale (VAS) from EQ-5D (Szende, 2007), activity and participation using the Frenchay Activity Index (FAI) (Wade, Legh-Smith, & Langton Hewer, 1985) and mood using the Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith, 1983). The FAI measures three aspects of participation; household, leisure and outdoor with total score ranging from 15 to 60; a higher score indicating greater involvement in activities. The HADS measures anxiety and depression, scores ranging from 0–21 with a higher score indicating more distress. Custom survey questions were also used to obtain information on number of falls or near falls, and the number of hours of physical activity per week. Participants and their caregivers were also asked to describe their experiences with the program by answering open ended written questions. Since all participants were registered for memberships at the YMCA, we tracked attendance using their electronic access card.

2.4. Personnel 2.6. Analysis We recruited university student volunteers through word-of-mouth and a Facebook page. Following the two hour training program (neurological conditions, precautions, and safety) they provided one-to-one assistance to participants. The NeuroFIT program circuit station progressions and equipment modifications, as well as the supervision of participants and volunteers, was the responsibility of the attending physiotherapist. In some cases, two-to-one assistance was provided for participants with considerable balance impairments or cognitive/behavioural concerns.

Data was entered into spreadsheets and analysed using IBM SPSS software v20. We derived descriptive statistics and compared scores at the testing time points using repeated measures ANOVA and if significant, continued with Bonferroni post-hoc comparisons; significance set at p < 0.05. Variances were tested and if needed, corrected for sphericity. We determined the differences between the characteristics of Exercisers and Non-Exercisers using ANOVA or, in the case of binary variables, chi-square.

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M. Ploughman et al. / Effectiveness of a novel community exercise transition program Table 1 Participant Characteristics

Gender Age Neurological Condition

Primary Mobility (# major cognitive impairment) Baseline TUG

Males: 17 Females: 10 57.7 (SD 13.6) Range: 32–78 Stroke: 15 Parkinson’s Disease: 2 Multiple Sclerosis: 2 Traumatic Brain Injury: 5 Hereditary Neurodegenerative: 3 Wheelchair: 3 (1) Walker: 2 (1) Cane and/or Assistance: 10 (2) Independent: 12 (4) 25.4s (SD 27.4) Range 7–149s

3. Results

cising entirely in the main gym; only one participant reported Borg PLE of three at any point using the gym equipment. All remaining participants reported Borg PLE scores between 4–9 in the main gym. 3.2. The effect of training on short-term physical function Physical outcomes (TUG and 6MWT) measured before and after the ten week program did not change significantly however the number of participants who “passed” the TUG test, that is, they were able to complete the test within ten seconds (Podsiadlo & Richardson, 1991), increased from three at the beginning of the program to eight at the end (Table 2). 3.3. Longer term effects on participation, mood and health-related quality of life

3.1. Participant safety and logistics Of the 29 participants (three groups) enrolled, 17 males and 10 females completed the program. Two people withdrew due to unrelated health concerns. During the 60 sessions there were two incidents; both falls requiring application of ice (thumb, ribcage) but no further intervention and both participants continued their exercises with modifications. Participant characteristics are described in Table 1. All participants required standby supervision or physical assistance at the stations. In terms of level of challenge of the program, only two participants reported a Borg (PLE) less than 2 at any circuit station; five participants’ reports ranged from as low as 3 to as high as 9 and all remaining participants reported a Borg PLE between 4 and 9 for all stations. All participants transitioned to the main gym; the earliest at two weeks and latest at eight weeks. In the transition, an average of eight pieces of equipment were used by participants; about four pieces per session. In the last two weeks of the program all participants were exer-

We measured health–related QoL (HR QoL), mood (HADS) and participation (FAI) at pre, post, and at four months follow-up. Three participants were lost to follow-up leaving 24 with complete data. Repeated measures ANOVA showed a significant effect of time on perceived HR QoL but no effect on mood or participation (Table 3). Perceived HR QoL improved significantly at the end of the program (p < 0.05) but declined slightly at four month follow-up. 3.4. Transition to independent exercise The primary aim of the program was to secure independence for participants such that they attended the gym and the gym’s programs independently following program cessation. Using the participants’ electronic swipe card and gym membership information, corroborated in the follow-up questionnaire, we determined that

Table 2 Physical outcome measures Outcome Timed Up and Go Timed Up and Go 10 s or less (pass) 6 Min Walk

Pre (±SD)

Post (±SD)

Significance

25.4 s (±27.5) 3 272.4 m (±171.4)

23.2 s (±30.1) 8 289.9 m (±167.0)

F = 0.78, p > 0.05 F = 3.18, p > 0.05 F = 0.71, p > 0.05

Table 3 HR QoL, Mood and Participation Outcome

Pre (±SD)

Post (±SD)

Follow-Up (±SD)

Significance

Quality of Life Hospital Anxiety and Depression Scale Frenchay Activities Index

49.6 (±25.5) 11.8 (±6.2) 35.4 (±7.8)

67.7 (±16.9) 9.9 (±4.8) 35.7 (±11.3)

63.9 (±25.4) 11.3 (±5.9) 35.0 (±11.6)

F = 4.60, p = 0.01 F = 0.85, p > 0.05 F = 0.96, p > 0.05

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Table 4 Difference between Exercisers and Non-Exercisers Characteristic

Age Gender Neurological Condition Baseline TUG Baseline 6 Min Walk Baseline QoL Baseline HADS Baseline FAI Cognitive Impairment

Exerciser n = 12 (±SD)

Non-Exerciser n = 15 (±SD)

Significance (all p > 0.05 except *p < 0.05)

57.8 (±11.2) 6 women/6 men 8 stroke/1 TBI/1 MS/ 1PD/ 1 other 19.4 s (±13.2) 328.5 m (±194.4) 39.8 (±25.7) 13.1 (±5.4) 37.7 (±6.7) 2+/ 10-

57.5 (±15.7) 4 women/11 men 8 stroke/ 4 TBI/ 1MS/ 1 PD/ 1 other 30.2 s (±34.8) 227.6 s (±141.4) 57.4 (±15.7) 10.8 (±6.7) 33.7 (±8.3) 6+/9-

F = 0.003 F = 1.53 F = 0.004 F = 1.03 F = 2.44 F = 3.48* F = 0.91 F = 1.83 Chi square 1.74

12 continued to participate in regular structured exercise (Exercisers) and 15 did not (Non-Exercisers); a 44.4% success rate after four months. Since it was important to determine the barriers to exercise adherence (level of disability, mood etc.), we compared baseline characteristics of Exercisers and Non-Exercisers. There were no significant differences between them in any of the outcomes we assessed (Table 4), however we note that the Non-Exercisers took longer to complete the TUG, walked a shorter distance on 6MWT and scored lower than Exercisers on FAI. Since we expected there may be differences at follow-up between Exercisers and Non-Exercisers we completed a repeated measures ANOVA with both time and exercise status as factors. There were 10 Exercisers and 14 Non-Exercisers with complete data. Results showed that there was no effect of time or time X exercise status for mood (HADS) or participation (FAI; data not shown). However, in terms of HR QoL, there was a significant effect of time (F = 5.45 p =

Effectiveness of a novel community exercise transition program for people with moderate to severe neurological disabilities.

To determine the effectiveness of a community re-integration exercise initiative on function, mood, participation, and exercise adherence for persons ...
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