Disability and Health Journal 8 (2015) 611e618 www.disabilityandhealthjnl.com
Research Paper
Leisure-Time Physical Activity in adults with Cerebral Palsy Koyo Usuba, M.Sc.a, Bruce Oddson, Ph.D.b, Alain Gauthier, Ph.D.a,b, and Nancy L. Young, Ph.D.a,c,* a
Evaluating Children’s Health Outcomes Research Centre, Laurentian University, Sudbury, ON, Canada b School of Human Kinetics, Laurentian University, Sudbury, ON, Canada c School of Rural and Northern Health, Laurentian University, Sudbury, ON, Canada
Abstract Background: Cerebral Palsy (CP) is becoming more prevalent in the adult population, but there is limited information available regarding their Leisure-Time Physical Activity (LTPA). Objective: To investigate the self-reported frequency and LTPA participation patterns in adults with CP, compared to the Canadian general population (CGP). Methods: This was a cross-sectional, follow-up-survey of a cohort of 145 persons with CP. The primary outcome was the level of participation in LTPA. Questions were also posed about the motivations and self-reported barriers to LTPA participation. The survey results were compared to CGP estimates from the Canadian Community Health Survey (CCHS). Results: Fifty-four participants completed the survey, and 90% reported participation in at least one LTPA per week. On average, they reported participating in LTPA 7.3 6 5.7 times/week. They also reported participating in an average of 4.1 6 2.4 different types of LTPA. Walking, home-exercise, and swimming were the most frequently reported as a primary LTPA in the CP sample. These finding were comparable to those from the CGP. However, adults with CP were more likely to participate in home-exercise than the CGP ( p ! 0.05). More than 40% reported that the purpose of their LTPA was fitness or body maintenance and 56% indicated an interest in starting new activities. Various barriers were also reported. Conclusions: Adults with CP frequently participated in LTPA. However, the majority of them are not achieving recommended daily physical activity levels. Also their LTPA habitually focuses on rehabilitative exercises and the diversity of LTPA is limited by several barriers. Ó 2015 Elsevier Inc. All rights reserved. Keywords: Cerebral palsy; Adults; Leisure-time physical activity; General population
The concept of leisure is associated with recreation and placed in contrast to the obligatory activities of work.1 Accordingly, Leisure Time Physical Activity (LTPA) is defined as those intentional physical activities that people choose to do during their free time,2 while Physical Activity (PA) is defined as any bodily movement produced by the skeletal muscles, resulting in increased energy expenditure.3 The American College of Sports Medicine4 recommends that adults should perform moderateintensity aerobic activity for a minimum of 30 min on five days each week or vigorous-intensity aerobic activity for a minimum 20 min on three days each week. When activity meets this standard people derive physical benefits, such
Conflict of interest statement: The authors stated that they had no interest which might be perceived as posing a conflict or bias. * Corresponding author. Laurentian University, 935 Ramsey Lake Road, Sudbury, ON, Canada P3E 2C6. Tel.: þ1 705 675 1151x4014; fax: þ1 705 671 6603. E-mail address: [email protected] (N.L. Young). 1936-6574/$ - see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2015.05.006
as favorable alterations in body composition, skeletal health, cardiorespiratory fitness, as well as psychological benefits, potentially including alleviation of symptoms of depression, anxiety, and improved self-concept.5 LTPA is a key component that is central to achieving this level.6 There is evidence that adequate activity level is associated with similar benefits for people with disabilities. In the context of the International Classification of Functioning (ICF),7 researchers have identified main categories of factors that are associated with participation in PAs. Functioning and disability (types and degrees of functioning and disability), Environmental Factors (e.g. costs, accessibility, built environment, information and social support) and Personal Factors (e.g. age, selfefficacy, depression and mental health), all of which are significantly correlated with participation in PA in adults with disabilities.8 Specifically, studies have reported that, in people with disabilities, LTPA was related with life satisfaction, muscle strength, ability to perform everyday activities, and a reduction in secondary conditions.9e12
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One of the largest populations of people with disability is those with Cerebral Palsy (CP). CP has been described as ‘‘a group of permanent disorders of the development of movement and posture causing activity limitation, that occurred in the developing fetal or infant brain.’’13 Although CP is often seen as a childhood disorder, the number of adults with CP is increasing, as a result of the increased survival rates among low birth weight infants and increased longevity among persons with CP.14 Therefore, CP is no longer solely a condition of childhood and it is important to understand the health of this growing population in adulthood. Attention to the adults with CP has been increased and problems for adults with CP have been published, such as functional deterioration, secondary condition, and pain.15e18 In Quebec, Canada, Boucher and colleagues examined the influence of personal and environmental factors on leisure participation in adults with CP,19 which could be directly applied in the ICF model. They suggested that level of severity, physical accessibility, external attendant services, adapted transportation service, attitude from others are influencial for leisure participation. Despite a growing body of literature about adults with CP, information especially regarding their patterns of LTPA, remains limited. Three studies have described participation in LTPA in adults with CP.20e22 These studies report that although the level of PA can be limited by the severity of CP, many of adults with CP participated in regular LTPA and PA at levels that in most life areas were comparable to the healthy population.20,21 However, adults with CP tended to spend time on non-intensive activities. Gaskin and Morris22 also reported that 70.6% of adults with CP in their Australian sample were involved in exercise and 39.2% undertook LTPAs, but intensity of the activities were not sufficient enough to meet the general recommendation from the US Department of Health and Human Services.22 Therefore, it appears that there is a need to increase the level of participation in LTPA among adults with CP if they are to realize the benefits associated with PA. However, with the exception of the study conducted by Gaskin and Morris,22 the samples in these studies did not include many adults with severe disability, those who use wheeled mobility in most or all settings. There is a general lack of information regarding adults with CP. In Canada, adults with CP are not easily identified, especially the older individuals due to the absence of a central registration at the time of this study. Specifically, the dearth of information regarding LTPA in adults with severe CP may result in an inaccurate description of LTPA because it is evident that severe disabilities are strongly associated with physical inactiveness.8,12,23e25 Thus, it is important to gain a more detailed understanding of level of participation in LTPA among adults with CP in a Canadian context. The primary purpose of this study was to describe the level of participation in LTPAs in adults with CP in terms of frequency and intensity. This study was unique in its inclusion of the full spectrum of severity and in that the
data were collected in a way that permitted direct comparison to findings to those from the Canadian general population (CGP). A secondary purpose was to provide an exploratory analysis of the variations in LTPA in adults with CP attributable to ambulatory status.
Methods Sample of adults with Cerebral Palsy We contacted adults with CP who participated in a previous study in 2003/04 (n 5 199; age 13e32.9 years of age in 2003).26 The purpose of the previous study was to present a comprehensive picture of the health and life outcomes of youth and young adults with CP. Participants in this previous study were identified from six children’s rehabilitation centers across Ontario, which were selected to represent both rural and urban regions as well as northern and southern regions of the province. In 2012, in this sample 4 were known to be deceased, one participant had previously asked not to be contacted for future studies, and one was no longer living in Canada. Thus, 193 participants were available for follow-up. The range of ages in the cohort at the time of recruitment for the present study was 22.0e42.9 years; thus all potential participants were adults. Letters of invitation were sent to all participants whose home addresses were believed to be accurate, based on an internet search using www.canada411.com. Reminder postcards were sent at 3 and 6 weeks after the initial mailing. Participants were encouraged to self-report if possible, but were permitted to have assistance in completing the questionnaires, or to have the questionnaires completed by their primary caregivers if necessary. This approach was essential to enable those with extensive disabilities to participate (fully inclusive). The data in the present survey was mainly collected in late summer (August and September). Approval for this study was obtained from the Research Ethics Board at the author’s institution. All participants provided written informed consent. Of the 193 previous participants, 19 were not included in the mailing due to errors in their addresses. Letters of invitation were sent to the remaining 174 previous participants. Responses indicated an additional five were deceased, and 24 invitations were returned to the sender due to the addresses no longer being current. This left a possible sample of 145 potential participants. Questionnaire The questionnaire was developed by the investigators to explore their utilization of LTPA. The questionnaire package consisted of following three groups of items: LTPA questions, the self-report version of the Gross Motor Function Classification System (GMFCS), and a series of questions to capture key characteristics of participants.
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LTPA form The LTPA questions were developed based on the Canadian Community Health Survey (CCHS); 2010 Annual component27 to facilitate comparison to the CGP. There were 21 LTPAs on the list, all of which were included in the CCHS in 2010. The CCHS activities list was adopted from the Campbell’s Survey on wellbeing in Canada.28 All participants were asked about the frequency and type of each LTPA. The question regarding frequency of LTPA was a six level ordinal scales (the number of times per week: ‘‘1 to 3 times per month,’’ ‘‘once per week’’ to ‘‘5 times per week or more’’) converted from questions in the CCHS, and type of LTPA was binomial choice, standard or modified (standard: without any aid or assistance; modified: with aid, such as crutches, walker, wheelchair or assistance). LTPA was defined as any activity with a minimum duration of 30 min. Participants were then asked to identify their primary LTPA; defined as the LTPA in which they had participated most frequently in the past year. The participants were asked to provide more detail about their primary activity including: the intensity (three-level ordinal scale), the duration of involvement (six-level ordinal scale), and the reason for participation (five choices including open ended answer) in their primary LTPA. Finally, all participants were asked whether they were interested in starting new activities from the list of LTPAs and open-ended options, and the barriers they perceived to be associated with these potential new activities from the list of barriers, which were derived from the previous survey26 and open-ended options. Gross Motor Function Classification (GMFCS) form The GMFCS29 is considered to be one of the most commonly used scales for classifying the level of gross motor function in children with CP. Prior studies have confirmed the validity and reliability of the GMFCS in adults with CP and excellent inter-rater agreement between selfreported and professional ratings.30,31 The GMFCS Expanded & Revised Self-Reported Questionnaire for young people aged 12e18 years was employed in this study. The GMFCS consists of a 5-level scale, where Level I indicates being ambulant with almost no motor problems, III indicates being ambulant with assistive devices and requiring a wheelchair outdoors, and V indicates being totally dependent and non-ambulant with severe disabilities or motor problems. GMFCS level can be grouped dichotomously into ambulatory (level IeIII) and non-ambulatory (level IV and V). Personal information form Questions regarding participants’ background were included in a Personal Information Form. The form was used to collect socio-demographic information including gender, age, living situation (4 choices: house, group home, supportive apartment, apartment), living with (5 choices: parents/sibling, spouse/partner, alone, friend, other), marital status (4 choices: single, married, living
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with partner/common law, separated/divorced), employment (8 choices: full-time work, part-time work, going to school, regularly attending workshop/day-program/drop in center, not working but looking for work, not working and not looking for work, volunteering, other) and personal income (five-level ordinal scale). Those choices are broadly comparable with those in the CCHS, with exception of living situation. Sample of the Canadian General Population (CGP) It is important to be able to interpret the results from the CP sample in the context of patterns of activity in the CGP. Thus, a dataset from the Canadian Community Health Survey (CCHS; 2010 Annual component) was used as normative data. The CCHS is a cross-sectional survey conducted by Statistics Canada that collects information related to health status, health care utilization and health determinants for the Canadian population. Statistics Canada collects the data throughout the year from the population 12 years of age and over. Therefore, to match the age group and reduce the seasonal bias for the LTPA, the entire CCHS dataset was filtered by age (20e40) and the date of the survey conducted (August and September). This study obtained population normative values for the LTPA and socio-demographic information from the CCHS. Data analyses Descriptive statistics were calculated to summarize the participants’ demographic characteristics. Student t-tests and Pearson chi-square tests were employed to assess the potential impact of non-responder analyses. Manne Whitney U test tests were used to compare the frequency and the number of different activities, and Fisher’s Exact tests with Bonferroni-Holm correction were used to detect differences of participation in each activity between CP and CGP sample. All analyses used a significance level of p ! 0.05 using Statistical Package for Social Science version 19.0 (SPSS Inc., Chicago, IL, USA). LTPA frequency calculation The raw data of frequency of participation in LTPA was converted in preparation to compare the CP and CGP samples. In the CP sample, total frequency of LTPA was obtained by adding the frequencies of each LTPA where ‘‘1 to 3 times per month’’ was counted as 0.25, ‘‘once per week’’ to ‘‘5 times per week’’ counted as raw values of 1e5, respectively. In the CCHS, participants were asked about ‘‘physical activities not related to work, that is, leisure time activities, . In the past 3 months, how many times did you participate in [identified activity]?,’’ and answered the number of times they participated with a maximum 99 times. The frequency of LTPA in the original CCHS data was converted to seven ordinal scales to match
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the data in this study and then calculated for total frequency in the same way as CP sample. To compare ratio of active adults in the CP sample and samples from other studies, we dichotomously classified the participants as meeting the ACSM recommendation or not (Active: those who perform moderate-intensity aerobic activity for a minimum of 30 min on five days each week or vigorous-intensity aerobic activity for a minimum 20 min on three days each week). The CCHS did not include the question regarding intensity of activity; therefore, this definition was applied only for adults with CP.
Results Of 145 potential participants, a total of 61 responded to our invitation and consented to participate (42% of the eligible sample), of whom 54 completed the survey (89% of consenting participants and 37% of the eligible sample). The mean age of participants was 29.5 years (SD 6.2) and 25 (46%) were female. Nineteen of the participants (35%) were categorized as mild CP, 7 (13%) as moderate (GMFCS level III), and 29 (52%) as severe. Details are provided in Table 1. A non-responder analysis was conducted including all of the participants from the previous survey. There were no differences between respondents and non-respondents with respect to age, sex, and GMFCS (Table 2). Thus, we believe that the group who responded to the present survey was representative of the original sample. Note that the initial sample differed from those typically reported in the literature because of the inclusion of the severe end of the distribution. Thus this sample is more typical of the usual community distribution. The CGP estimates were computed from the CCHS dataset, after filtering to match them by age and the date distributions of the CP survey. This resulted in a population sample of 2731 with a mean age of 30.6 years (SD 6.0) and 1502 were female (55%). Basic characteristics for the CP and CGP sample are summarized in Table 1 CP vs CGP In the sample of CP, 91% participated in LTPA at least once per week. This was similar to the CGP sample (89%). The mean frequency of LTPA per week was 7.3 per week (SD 5.7) in the CP sample and 6.2 (SD 5.6) in the CGP sample, indicating that participation frequency in the CP sample was not different from the CGP sample. The most frequently participated LTPA in adults with CP were walking with a mean frequency of 2.68 (SD 2.16) times per week, followed by swimming with 0.75 (SD 1.34), and home exercise with 1.46 (SD 1.76). In the CGP sample the frequencies for these same activities were 1.39 (SD 2.32), 0.28 (SD 0.13) and 0.51 (SD 1.21) times per week respectively.
Table 1 Participants’ characteristics
Age Gender Male Female Proxy Non-proxy Proxy respondent GMFCS I II III IV V Living situation House Group home Supportive apartment Apartment (not supportive) Living with Parent/sibling Spouse/partner Alone Friend(s) Other Marital status Single Married Living with partner/ common law Separated/divorced Work situation Full-time work Part-time work Going to school Regularly attending workshop/day program/drop in center Not working, but looking for work Not working, not looking for work Volunteering Other
CP sample (n 5 54)
CGP sample (n 5 2731)
29.5 6 6.23 (range: 23e42)
30.6 6 6.01 (range: 20e40)
29 (53.7%) 25 (46.3%)
1229 (45%) 1502 (55%)
22 (40.7%) 32 (59.3%)
N.A.
12 7 7 12 16
(22.2%) (13.0%) (13.0%) (22.2%) (29.6%)
N.A.
41 6 4 3
(75.9%) (11.1%) (7.4%) (5.6%)
35 7 4 3 5
(64.8%) (13%) (7.4%) (5.6%) (9.3%)
596 1396 427 N.A. 299
(21.8%) (51.1%) (15.6%) (10.9%)
46 (85.2%) 5 (9.3%) 2 (3.7%)
1076 (39.4%) 1077 (39.4%) 458 (16.7%)
1 (1.9%)
118 (4.3%)
7 3 3 15
(13.0%) (5.6%) (5.6%) (27.8%)
2401 (87.9%) 330 (12.1%)
7 (13.0%) 13 (24.1%) 3 (5.6%) 2 (3.7%)
The number the different activities in the past three months were 4.12 (SD 2.38) in the CP sample, and 4.69 (SD 3.07) in the CGP sample. Table 3 shows that the percentage of people who participated in each activity at least once in the past 3 months with 95% confident interval (95% CI). In both samples, walking was the most frequently participated LTPA (74% in the CP sample and 74.1% in the CGP sample), followed by home exercise (63%) and swimming (54%) in the CP sample, and followed by gardening (56%) and swimming (49%) in the CGP sample. Adults with CP were less likely to participate in gardening, jogging/running, golfing and fishing (all p ! 0.01 on Fisher’s Exact tests with Bonferroni-Holm correction), while more likely to participate in home-exercise ( p ! 0.05).
K. Usuba et al. / Disability and Health Journal 8 (2015) 611e618 Table 2 Comparison of study participants to those lost to follow-up Study participants Lost to follow-up Variables (n 5 54) (n 5 2731) Age Male GMFCS I II III IV V
20 y 6 mo (6 y 5 mo) 53.7%
19 y 6 mo (5 y 6 mo) 57.2%
22.2% 13.0% 13.0% 22.2% 29.6%
23.2% 14.5% 15.2% 25.4% 21.7%
Type and kind of LTPAs In addition to the LTPAs shown in Table 3, participants reported other LTPAs including yoga, Zumba, canoeing, sailing, dodgeball, and therapeutic horseback riding. Fig. 1 illustrates the percentages of type of LTPA. ‘‘Standard’’ indicates that LTPA without any aids or assistance, and ‘‘modified’’ indicates that LTPA with aid, such as crutches, walker wheelchair or assistance. Thirty-nine adults with CP (72%) participated in one or more modified LTPA. Primary LTPA in adults with CP Of the 54 participants, 46 (85%) indicated a primary LTPA. Walking, home exercise, and swimming were the most frequently reported primary LTPA (33%, 15% and 15% respectively). Of those, 30 (56%) reported the Table 3 Percentage of people who participated in each activity at least once in the past 3 months in adults with CP and the CGP CP sample CGP sample (n 5 54) (n 5 2731) Name of activity
% (95% CI)
% (95% CI)
Walking Gardening/yard work** Swimming Bicycling Popular/social dance Home exercise* Ice hockey Ice skating In-line skating/roller blading Jogging/Running** Golfing** Exercise class/Aerobics Skiing/Snowboarding Bowling Baseball/Softball Tennis Weight-training Fishing** Volleyball Basketball Soccer
74.1 27.7 53.7 31.5 31.5 62.9 1.9 3.7 1.9 7.4 1.9 25.9 0.0 20.4 3.7 1.9 16.7 3.7 0.0 7.4 1.9
74.1 56.0 49.1 37.5 22.2 38.8 3.8 2.1 8.6 35.2 19.0 14.1 e 12.3 13.5 6.8 24.8 23.4 7.9 8.5 14.3
(61.1e83.9) (17.6e40.9) (40.6e66.3) (20.7e44.7) (20.7e44.7) (49.6e74.6) (0.0e9.8) (1.0e12.5) (0.0e9.8) (2.9e17.6) (0.0e9.8) (16.1e38.9) (0.0e5.4) (11.7e32.9) (1.0e12.5) (0.0e9.8) (9.0e28.7) (1.0e12.5) (0.0e5.4) (2.9e17.6) (0.0e9.8)
(72.4e75.7) (54.1e57.8) (47.3e51.0) (35.7e39.4) (20.6e23.7) (36.9e40.6) (3.2e4.6) (1.6e2.7) (7.6e9.8) (33.4e37.0) (17.6e20.5) (12.9e15.5) (11.1e13.6) (12.3e14.9) (5.9e7.9) (23.2e26.4) (21.8e25.0) (6.9e8.9) (7.5e9.6) (13.1e15.7)
*p ! 0.05, **p ! 0.01 on Fisher’s Exact tests with Bonferroni-Holm correction between adults with CP and the CGP. The number and percentage of Skiing in the CCHS is suppressed due to low numbers.
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Table 4 Reported barriers for starting new LTPA in the CP sample Reported barriers n Health condition Lack of time with care attendant Accessibility Cost Lack of information Not strong enough interest Lack of time Transportation Don’t know where to do Lack of equipment May affect condition worse Other Disability Self-conscious Season
%
17 16 13 13 10 10 9 9 7 5 1 8
31.5% 29.6% 24.1% 24.1% 18.5% 18.5% 16.7% 16.7% 13.0% 9.3% 1.9% 14.8%
intensity as moderate, which required moderate physical effort and made breathing somewhat harder than normal, and 4 (7%) reported as vigorous, which required hard physical effort and make you breath much harder than normal. Ten (18.5%) were classified as active based on the recommendation of the ACSM. More than half of them had been participating in the indicated primary LTPA for more than five years, and ‘‘fitness’’ was most frequently reported as the reason for their primary LTPA. Five participants stated in the questionnaire that ‘‘body maintenance’’ was their main reason for participating in LTPA. Interest in/barriers to starting new LTPAs in adults with CP Thirty participants (56%) indicated interests in starting new LTPAs. The most frequently reported barrier for 0%
Walking Gardening/Yardwork Swimming Bicycling Dance Home exercise Hockey Skating Inline skating Jogging/Running Golfing Exercise class/Aerobics Skiing/Snowboarding Bowling Baseball/softball Tennis Weight training Fishing Volleyball Basketball Soccer Yoga Zumba Canoeing Sailing Dogeball Therapeutic Horseback riding
20%
40%
60%
80%
100%
Standard Modified Not Participating
Fig. 1. Proportion of type in each LTPA in adults with CP.
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moving forward to participate in the indicated LTPA was their health condition (32%), followed by lack of time with a personal care attendant (30%), cost (24%), and accessibility of the facility (24%) (Table 4). LTPA in adults with CP by ambulatory status The frequency and ratio of active participants were explored with respect to ambulatory status, with those with GMFCS IeIII being classified as ambulatory (n 5 26) and those with GMFCS IVeV being classified as nonambulatory (n 5 28). The ambulatory group participated in LTPA 9.3 times/week (SD 5.6) on average and 26.9% of them were categorized as active. These were higher than those in the non-ambulatory group (mean 5.5 and SD 5.2, 10.7% were active).
Discussion Many people with chronic diseases and disabilities can benefit from LTPA in the same way as the healthy population; nevertheless information regarding participation in LTPA in adults with CP is limited. Adults with severe disabilities have rarely been included in studies describing LTPA/PA level. Since people with severe disabilities may be at higher risk for a physically inactive life style and have different outcomes, this has been as a gap in the literature.20,23,32,33 In this study, 52% of the participants had GMFCS levels of IV or V, which is similar to the distribution from other community-based samples of adults with CP in Ottawa (47%).34 Thus, this study includes the information of medically fragile adults with CP. In the present study, although adults with severe CP were included, the reported frequency of LTPAs and the number of different kind of LTPA from adults with CP were surprisingly similar to those from the CGP. Thus, adults with CP did not appear to be less active than the CGP based on results. However, our results also showed that approximately 20% of adults with CP met the ACSM criteria for ‘‘active.’’ This proportion was much lower than the 33% of the members of a healthy population reported in the USA by Carlson et al (33%)35 that was measured with a similar questionnaire (including 23 specific exercises, sports or physically active hobbies, such as walking, football, swimming etc.). These findings indicate that adults with CP participated in LTPAs as frequently as the CGP but many of them were not active enough to meet the criteria of ACSM when intensity was taken into consideration. Thus, the findings reported here are consistent with previous studies.21,22 To enable people with CP to obtain health benefit from LTPA, special efforts should be made to increase intensity levels of their LTPAs. These efforts should focus primarily on the non-ambulatory group, because our exploratory analyses indicated that non-ambulatory participants tended
to be inactive. Furthermore, participants need to be monitored carefully to prevent overuse syndromes, which may occur in adults with disabilities.17,18,36,37 The intervention should be implemented slowly and progressed gradually especially with those who have severe motor disability in order to prevent overuse injuries. Although more than half of participants with CP were interested in starting new LTPA, many of them also reported health condition and lack of time with personal care attendant as barriers to moving forward. In this study, more than 40% of participants were categorized as having severe CP, which may be related to unstable health condition including secondary condition, such as pain, deformities, and bowel problems.12 Furthermore, people with severe CP need more time with care attendants for activities of daily living, therefore it might be difficult for them to use limited time with care attendant for participating in LTPA. The high percentage of people who reported health conditions and lack of time with care attendant as a barrier was to be expected because of the fully inclusive cohort in this study. Qualitative studies have identified several barriers for the participation in LTPA; including environment, economic issues, emotional and psychological barriers, equipment barriers, information-related barriers, professional knowledge issues, perceptions and attitudes of persons from non-disable people, and policies.38,39 Our study showed that many adults with CP perceived similar barriers as reported by others38,39; also health condition and environmental factor in ICF framework may have major influences when adults with severe CP are included. Our results, especially the high frequency of participation in LTPAs, appear to contradict some studies that reported lower activity level in adults with disabilities. However, it is difficult to directly compare our results with other studies because of differences in measurements and setting. Santiago and Coyle40 reported that women with physical disabilities participated in LTPAs only 2.9 times per week on average and 39.4% of them never participated in LTPAs. Also Rimmer et al41 reported that only 8.2% of African-American women with physical disabilities participated in LTPAs. One aspect of this discrepancy is that potential rehabilitative exercises, such as home-exercise, were included as LTPA in our study while those were not included as LTPA in Santiago and Rimmer’s studies. The question of defining what activity can be classified as leisure is well documented in the early leisure studies literature but such discussions have taken place without reference to disability. The higher frequency of participation in exercise in adults with CP has been reported by some authors,22,40 and our results were consistent with such studies. Specifically, home-exercise may have a different meaning in people with disabilities because rehabilitative activities are inevitable for them. Indeed, many of their primary LTPAs resembled common rehabilitative exercises that Heller et al42 reported; also more than 40% of our participants reported fitness or body maintenance as a
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reason for the primary LTPA. Therefore, those LTPAs may be obligational rehabilitative activities rather than actual leisure activities for pleasure. Indeed, some studies reported that many people with disabilities reported that they were fed up with exercise/physiotherapy but had to do it to maintain their function.40,43,44 However, it is difficult to identify whether their activities were rehabilitative or pleasant, also the main purpose of this study was to compare the frequency of LTPAs in adults with CP and the CGP. Thus, we did not exclude potential rehabilitative activities from LTPA in the analyses. We recommend that the purpose of such activities (e.g., for intentional rehabilitation, vs. exercise, vs. pleasure) needs to be assessed and taken into account in the design of future research. Despite the potential measurement bias, our results identified that the adults with CP participated in LTPA as frequent as the CGP. We suggest for future research that the definition of LTPA in a disabled population may need to be considered carefully when LTPA is measured. Limitations There are several limitations in this study. First, the low response rate to the survey may be of concern. However, the demographic similarities between respondents and non-respondents suggest that the non-response effect, if any, would be small. Second, we acknowledge that the results are based on a relatively small sample size, which has limited statistical power. However, this is a relatively large sample considering that adults with CP are a hard to reach population because there was no central CP register in Ontario at the time of this survey. Third the questionnaire used in this study was not specifically intended to explore the LTPA in a disabled population. In addition, relatively high rate of proxy respondent and the self-reported nature of the survey may have resulted in a reporting bias, alsousing ordinal values for the number of participation in LTPA on the questionnaire may cause measurement error. Yet, given that there was no standardized or validated measure of LTPA in adults with CP at the time of data collection we feel that the method used to assess LTPA was the most appropriate. Despite such limitations, this study was able to describe the level of participation in LTPAs in this growing population by comparing with the CGP, and provides important data to guide further research.
Conclusion This study describes the self-reported patterns of LTPA participation in Canadian adults with CP and presents a comparison with data from the CGP. This study was important because it is one of very few to include a range of participants including those with severe disabilities.
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The findings suggest that adults with CP were frequently involved in various LTPAs; more so than would be expected. They participated in modified LTPAs with aids; however, the majority of them may not be achieving recommended activity levels. To maximize the benefits from LTPA, the level of LTPAs needs to be increased especially in adults with severe CP. Minimizing key barriers may facilitate participation in LTPAs.
Acknowledgment The authors thank all adults and their families who participated in this study. References 1. Fullagar S, Owler K. Narratives of leisure: recreating the self. Disabil Soc. 1998;13:441e450. 2. Physical Activity, Fitness, and Health: International Proceedings and Consensus Statement. Champaign, IL, England: Human Kinetics Publishers; 1994. 3. Caspersen CJ, Powell KE, Christenson GM. Physical activity, exercise, and physical fitness: definitions and distinctions for healthrelated research. Public Health Rep. 1985;100:126. 4. Garber CE, Blissmer B, Deschenes MR, et al. American College of Sports Medicine position stand. Quantity and quality of exercise for developing and maintaining cardiorespiratory, musculoskeletal, and neuromotor fitness in apparently healthy adults: guidance for prescribing exercise. Med Sci Sports Exerc. 2011;43:1334e1359. 5. Trost S. Discussion Paper for the Development of Recommendations for Children’s and Youth’s Participation in Health Promoting Physical Activity; 2005. 6. US Department of Health and Human Services. Physical Activity and Health: A Report of the Surgeon General: U.S. Department of Health and Human Services. Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion; 1996. 7. International Classification of Functioning, Disability and Health. Geneva: World Health Organization; 2001. 8. Saebu M. Physical disability and physical activity: a review of the literature on correlates and associations. Eur J Adapt Phys Act. 2011;3. 9. Allen J, Dodd KJ, Taylor NF, McBurney H, Larkin H. Strength training can be enjoyable and beneficial for adults with cerebral palsy. Disabil Rehabil. 2004;26:1121e1127. 10. Coyle CP, Santiago MC, Shank JW, Ma GX, Boyd R. Secondary conditions and women with physical disabilities: a descriptive study. Arch Phys Med Rehabil. 2000;81:1380e1387. 11. Lee Y, McCormick B. Subjective well-being of people with spinal cord injury-does leisure contribute? J Rehabil. 2004;70. 12. Turk MA, Geremski CA, Rosenbaum PF, Weber RJ. The health status of women with cerebral palsy. Arch Phys Med Rehabil. 1997;78: S10eS17. 13. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007;109. 14. Strauss D, Shavelle R, Reynolds R, Rosenbloom L, Day S. Survival in cerebral palsy in the last 20 years: signs of improvement? Dev Med Child Neurol. 2007;49:86e92. 15. Ando N, Ueda S. Functional deterioration in adults with cerebral palsy. Clin Rehabil. 2000;14:300e306. 16. Gajdosik CG, Cicirello N. Secondary conditions of the musculoskeletal system in adolescents and adults with cerebral palsy. Phys Occup Ther Pediatr. 2002;21:49e68.
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17. Jahnsen R, Villien L, Aamodt G, Stanghelle J, Holm I. Musculoskeletal pain in adults with cerebral palsy compared with the general population. J Rehabil Med. 2004;36:78e84. 18. Opheim A, Jahnsen R, Olsson E, Stanghelle JK. Walking function, pain, and fatigue in adults with cerebral palsy: a 7-year follow-up study. Dev Med Child Neurol. 2009;51:381e388. 19. Boucher N, Dumas F, Maltais DB, Richards CL. The influence of selected personal and environmental factors on leisure activities in adults with cerebral palsy. Disabil Rehabil. 2010;32:1328e1338. 20. Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Physiotherapy and physical activity e experiences of adults with cerebral palsy, with implications for children. Adv Physiother. 2003;5:21e32. 21. van der Slot WM, Roebroeck ME, Landkroon AP, Terburg M, van den Berg-Emons RJ, Stam HJ. Everyday physical activity and community participation of adults with hemiplegic cerebral palsy. Disabil Rehabil. 2007;29:179e189. 22. Gaskin CJ, Morris T. Physical activity, health-related quality of life, and psychosocial functioning of adults with cerebral palsy. J Phys Act Health. 2008;5:146e157. 23. Maltais DB, Dumas F, Boucher N, Richards CL. Factors related to physical activity in adults with cerebral palsy may differ for walkers and nonwalkers. Am J Phys Med Rehabil. 2010;89:584e597. 24. Van Naarden Braun K, Yeargin-Allsopp M, Lollar D. Factors associated with leisure activity among young adults with developmental disabilities. Res Dev Disabil. 2006;27:567e583. 25. Hamrah Nedjad J, Jansson E, Bartonek A. Physical activity in a Swedish youth and adult population with cerebral palsy. Eur J Physiother. 2013;15:70e77. 26. Young N, McCormick A, Mills W, et al. The transition study: a look at youth and adults with cerebral palsy, spina bifida and acquired brain injury. Phys Occup Ther Pediatr. 2006;26:25e45. 27. Statistics Canada. Canadian Community Health Survey (CCHS); 2012. 28. The Well-being of Canadians: Highlights of the 1988 Campbell’s Survey. Ottawa: Canadian Fitness and Lifestyle Research Institute; 1990. 29. Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39: 214e223. 30. Jahnsen R, Aamodt G, Rosenbaum P. Gross Motor Function Classification System used in adults with cerebral palsy: agreement of selfreported versus professional rating. Dev Med Child Neurol. 2006;48: 734e738.
31. Sandstrom K, Alinder J, Oberg B. Descriptions of functioning and health and relations to a gross motor classification in adults with cerebral palsy. Disabil Rehabil. 2004;26:1023e1031. 32. Bjornson KF, Belza B, Kartin D, Logsdon R, McLaughlin JF. Ambulatory physical activity performance in youth with cerebral palsy and youth who are developing typically. Phys Ther. 2007;87:248e257. 33. Maher CA, Williams MT, Olds T, Lane AE. Physical and sedentary activity in adolescents with cerebral palsy. Dev Med Child Neurol. 2007;49:450e457. 34. McCormick A, Brien M, Plourde J, Wood E, Rosenbaum P, McLean J. Stability of the Gross Motor Function Classification System in adults with cerebral palsy. Dev Med Child Neurol. 2007;49:265e269. 35. Carlson SA, Fulton JE, Schoenborn CA, Loustalot F. Trend and prevalence estimates based on the 2008 physical activity guidelines for Americans. Am J Prev Med. 2010;39:305e313. 36. Murphy KP, Molnar GE, Lankasky K. Medical and functional status of adults with cerebral palsy. Dev Med Child Neurol. 1995;37: 1075e1084. 37. Schwartz L, Engel JM, Jensen MP. Pain in persons with cerebral palsy. Arch Phys Med Rehabil. 1999;80:1243e1246. 38. Dattilo J, Estrella G, Estrella LJ, Light J, McNaughton D, Seabury M. ‘‘I have chosen to live life abundantly’’: perceptions of leisure by adults who use augmentative and alternative communication. Augment Altern Commun. 2008;24:16e28. 39. Rimmer JH, Riley B, Wang E, Rauworth A, Jurkowski J. Physical activity participation among persons with disabilities: barriers and facilitators. Am J Prev Med. 2004;26:419e425. 40. Santiago MC, Coyle CP. Leisure-time physical activity and secondary conditions in women with physical disabilities. Disabil Rehabil. 2004;26:485e494. 41. Rimmer JH, Rubin SS, Braddock D, Hedman G. Physical activity patterns of African-American women with physical disabilities. Med Sci Sports Exerc. 1999;31:613. 42. Heller T, Ying Gs GS, Rimmer JH, Marks BA. Determinants of exercise in adults with cerebral palsy. Public Health Nurs. 2002;19: 223e231. 43. Rimmer JH, Rubin SS, Braddock D. Barriers to exercise in African American women with physical disabilities. Arch Phys Med Rehabil. 2000;81:182e188. € 44. Sandstr€om K, Samuelsson K, Oberg B. Prerequisites for carrying out physiotherapy and physical activity-experiences from adults with cerebral palsy. Disabil Rehabil. 2009;31:161e169.
Research Paper
Leisure-Time Physical Activity in adults with Cerebral Palsy Koyo Usuba, M.Sc.a, Bruce Oddson, Ph.D.b, Alain Gauthier, Ph.D.a,b, and Nancy L. Young, Ph.D.a,c,* a
Evaluating Children’s Health Outcomes Research Centre, Laurentian University, Sudbury, ON, Canada b School of Human Kinetics, Laurentian University, Sudbury, ON, Canada c School of Rural and Northern Health, Laurentian University, Sudbury, ON, Canada
Abstract Background: Cerebral Palsy (CP) is becoming more prevalent in the adult population, but there is limited information available regarding their Leisure-Time Physical Activity (LTPA). Objective: To investigate the self-reported frequency and LTPA participation patterns in adults with CP, compared to the Canadian general population (CGP). Methods: This was a cross-sectional, follow-up-survey of a cohort of 145 persons with CP. The primary outcome was the level of participation in LTPA. Questions were also posed about the motivations and self-reported barriers to LTPA participation. The survey results were compared to CGP estimates from the Canadian Community Health Survey (CCHS). Results: Fifty-four participants completed the survey, and 90% reported participation in at least one LTPA per week. On average, they reported participating in LTPA 7.3 6 5.7 times/week. They also reported participating in an average of 4.1 6 2.4 different types of LTPA. Walking, home-exercise, and swimming were the most frequently reported as a primary LTPA in the CP sample. These finding were comparable to those from the CGP. However, adults with CP were more likely to participate in home-exercise than the CGP ( p ! 0.05). More than 40% reported that the purpose of their LTPA was fitness or body maintenance and 56% indicated an interest in starting new activities. Various barriers were also reported. Conclusions: Adults with CP frequently participated in LTPA. However, the majority of them are not achieving recommended daily physical activity levels. Also their LTPA habitually focuses on rehabilitative exercises and the diversity of LTPA is limited by several barriers. Ó 2015 Elsevier Inc. All rights reserved. Keywords: Cerebral palsy; Adults; Leisure-time physical activity; General population
The concept of leisure is associated with recreation and placed in contrast to the obligatory activities of work.1 Accordingly, Leisure Time Physical Activity (LTPA) is defined as those intentional physical activities that people choose to do during their free time,2 while Physical Activity (PA) is defined as any bodily movement produced by the skeletal muscles, resulting in increased energy expenditure.3 The American College of Sports Medicine4 recommends that adults should perform moderateintensity aerobic activity for a minimum of 30 min on five days each week or vigorous-intensity aerobic activity for a minimum 20 min on three days each week. When activity meets this standard people derive physical benefits, such
Conflict of interest statement: The authors stated that they had no interest which might be perceived as posing a conflict or bias. * Corresponding author. Laurentian University, 935 Ramsey Lake Road, Sudbury, ON, Canada P3E 2C6. Tel.: þ1 705 675 1151x4014; fax: þ1 705 671 6603. E-mail address: [email protected] (N.L. Young). 1936-6574/$ - see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2015.05.006
as favorable alterations in body composition, skeletal health, cardiorespiratory fitness, as well as psychological benefits, potentially including alleviation of symptoms of depression, anxiety, and improved self-concept.5 LTPA is a key component that is central to achieving this level.6 There is evidence that adequate activity level is associated with similar benefits for people with disabilities. In the context of the International Classification of Functioning (ICF),7 researchers have identified main categories of factors that are associated with participation in PAs. Functioning and disability (types and degrees of functioning and disability), Environmental Factors (e.g. costs, accessibility, built environment, information and social support) and Personal Factors (e.g. age, selfefficacy, depression and mental health), all of which are significantly correlated with participation in PA in adults with disabilities.8 Specifically, studies have reported that, in people with disabilities, LTPA was related with life satisfaction, muscle strength, ability to perform everyday activities, and a reduction in secondary conditions.9e12
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One of the largest populations of people with disability is those with Cerebral Palsy (CP). CP has been described as ‘‘a group of permanent disorders of the development of movement and posture causing activity limitation, that occurred in the developing fetal or infant brain.’’13 Although CP is often seen as a childhood disorder, the number of adults with CP is increasing, as a result of the increased survival rates among low birth weight infants and increased longevity among persons with CP.14 Therefore, CP is no longer solely a condition of childhood and it is important to understand the health of this growing population in adulthood. Attention to the adults with CP has been increased and problems for adults with CP have been published, such as functional deterioration, secondary condition, and pain.15e18 In Quebec, Canada, Boucher and colleagues examined the influence of personal and environmental factors on leisure participation in adults with CP,19 which could be directly applied in the ICF model. They suggested that level of severity, physical accessibility, external attendant services, adapted transportation service, attitude from others are influencial for leisure participation. Despite a growing body of literature about adults with CP, information especially regarding their patterns of LTPA, remains limited. Three studies have described participation in LTPA in adults with CP.20e22 These studies report that although the level of PA can be limited by the severity of CP, many of adults with CP participated in regular LTPA and PA at levels that in most life areas were comparable to the healthy population.20,21 However, adults with CP tended to spend time on non-intensive activities. Gaskin and Morris22 also reported that 70.6% of adults with CP in their Australian sample were involved in exercise and 39.2% undertook LTPAs, but intensity of the activities were not sufficient enough to meet the general recommendation from the US Department of Health and Human Services.22 Therefore, it appears that there is a need to increase the level of participation in LTPA among adults with CP if they are to realize the benefits associated with PA. However, with the exception of the study conducted by Gaskin and Morris,22 the samples in these studies did not include many adults with severe disability, those who use wheeled mobility in most or all settings. There is a general lack of information regarding adults with CP. In Canada, adults with CP are not easily identified, especially the older individuals due to the absence of a central registration at the time of this study. Specifically, the dearth of information regarding LTPA in adults with severe CP may result in an inaccurate description of LTPA because it is evident that severe disabilities are strongly associated with physical inactiveness.8,12,23e25 Thus, it is important to gain a more detailed understanding of level of participation in LTPA among adults with CP in a Canadian context. The primary purpose of this study was to describe the level of participation in LTPAs in adults with CP in terms of frequency and intensity. This study was unique in its inclusion of the full spectrum of severity and in that the
data were collected in a way that permitted direct comparison to findings to those from the Canadian general population (CGP). A secondary purpose was to provide an exploratory analysis of the variations in LTPA in adults with CP attributable to ambulatory status.
Methods Sample of adults with Cerebral Palsy We contacted adults with CP who participated in a previous study in 2003/04 (n 5 199; age 13e32.9 years of age in 2003).26 The purpose of the previous study was to present a comprehensive picture of the health and life outcomes of youth and young adults with CP. Participants in this previous study were identified from six children’s rehabilitation centers across Ontario, which were selected to represent both rural and urban regions as well as northern and southern regions of the province. In 2012, in this sample 4 were known to be deceased, one participant had previously asked not to be contacted for future studies, and one was no longer living in Canada. Thus, 193 participants were available for follow-up. The range of ages in the cohort at the time of recruitment for the present study was 22.0e42.9 years; thus all potential participants were adults. Letters of invitation were sent to all participants whose home addresses were believed to be accurate, based on an internet search using www.canada411.com. Reminder postcards were sent at 3 and 6 weeks after the initial mailing. Participants were encouraged to self-report if possible, but were permitted to have assistance in completing the questionnaires, or to have the questionnaires completed by their primary caregivers if necessary. This approach was essential to enable those with extensive disabilities to participate (fully inclusive). The data in the present survey was mainly collected in late summer (August and September). Approval for this study was obtained from the Research Ethics Board at the author’s institution. All participants provided written informed consent. Of the 193 previous participants, 19 were not included in the mailing due to errors in their addresses. Letters of invitation were sent to the remaining 174 previous participants. Responses indicated an additional five were deceased, and 24 invitations were returned to the sender due to the addresses no longer being current. This left a possible sample of 145 potential participants. Questionnaire The questionnaire was developed by the investigators to explore their utilization of LTPA. The questionnaire package consisted of following three groups of items: LTPA questions, the self-report version of the Gross Motor Function Classification System (GMFCS), and a series of questions to capture key characteristics of participants.
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LTPA form The LTPA questions were developed based on the Canadian Community Health Survey (CCHS); 2010 Annual component27 to facilitate comparison to the CGP. There were 21 LTPAs on the list, all of which were included in the CCHS in 2010. The CCHS activities list was adopted from the Campbell’s Survey on wellbeing in Canada.28 All participants were asked about the frequency and type of each LTPA. The question regarding frequency of LTPA was a six level ordinal scales (the number of times per week: ‘‘1 to 3 times per month,’’ ‘‘once per week’’ to ‘‘5 times per week or more’’) converted from questions in the CCHS, and type of LTPA was binomial choice, standard or modified (standard: without any aid or assistance; modified: with aid, such as crutches, walker, wheelchair or assistance). LTPA was defined as any activity with a minimum duration of 30 min. Participants were then asked to identify their primary LTPA; defined as the LTPA in which they had participated most frequently in the past year. The participants were asked to provide more detail about their primary activity including: the intensity (three-level ordinal scale), the duration of involvement (six-level ordinal scale), and the reason for participation (five choices including open ended answer) in their primary LTPA. Finally, all participants were asked whether they were interested in starting new activities from the list of LTPAs and open-ended options, and the barriers they perceived to be associated with these potential new activities from the list of barriers, which were derived from the previous survey26 and open-ended options. Gross Motor Function Classification (GMFCS) form The GMFCS29 is considered to be one of the most commonly used scales for classifying the level of gross motor function in children with CP. Prior studies have confirmed the validity and reliability of the GMFCS in adults with CP and excellent inter-rater agreement between selfreported and professional ratings.30,31 The GMFCS Expanded & Revised Self-Reported Questionnaire for young people aged 12e18 years was employed in this study. The GMFCS consists of a 5-level scale, where Level I indicates being ambulant with almost no motor problems, III indicates being ambulant with assistive devices and requiring a wheelchair outdoors, and V indicates being totally dependent and non-ambulant with severe disabilities or motor problems. GMFCS level can be grouped dichotomously into ambulatory (level IeIII) and non-ambulatory (level IV and V). Personal information form Questions regarding participants’ background were included in a Personal Information Form. The form was used to collect socio-demographic information including gender, age, living situation (4 choices: house, group home, supportive apartment, apartment), living with (5 choices: parents/sibling, spouse/partner, alone, friend, other), marital status (4 choices: single, married, living
613
with partner/common law, separated/divorced), employment (8 choices: full-time work, part-time work, going to school, regularly attending workshop/day-program/drop in center, not working but looking for work, not working and not looking for work, volunteering, other) and personal income (five-level ordinal scale). Those choices are broadly comparable with those in the CCHS, with exception of living situation. Sample of the Canadian General Population (CGP) It is important to be able to interpret the results from the CP sample in the context of patterns of activity in the CGP. Thus, a dataset from the Canadian Community Health Survey (CCHS; 2010 Annual component) was used as normative data. The CCHS is a cross-sectional survey conducted by Statistics Canada that collects information related to health status, health care utilization and health determinants for the Canadian population. Statistics Canada collects the data throughout the year from the population 12 years of age and over. Therefore, to match the age group and reduce the seasonal bias for the LTPA, the entire CCHS dataset was filtered by age (20e40) and the date of the survey conducted (August and September). This study obtained population normative values for the LTPA and socio-demographic information from the CCHS. Data analyses Descriptive statistics were calculated to summarize the participants’ demographic characteristics. Student t-tests and Pearson chi-square tests were employed to assess the potential impact of non-responder analyses. Manne Whitney U test tests were used to compare the frequency and the number of different activities, and Fisher’s Exact tests with Bonferroni-Holm correction were used to detect differences of participation in each activity between CP and CGP sample. All analyses used a significance level of p ! 0.05 using Statistical Package for Social Science version 19.0 (SPSS Inc., Chicago, IL, USA). LTPA frequency calculation The raw data of frequency of participation in LTPA was converted in preparation to compare the CP and CGP samples. In the CP sample, total frequency of LTPA was obtained by adding the frequencies of each LTPA where ‘‘1 to 3 times per month’’ was counted as 0.25, ‘‘once per week’’ to ‘‘5 times per week’’ counted as raw values of 1e5, respectively. In the CCHS, participants were asked about ‘‘physical activities not related to work, that is, leisure time activities, . In the past 3 months, how many times did you participate in [identified activity]?,’’ and answered the number of times they participated with a maximum 99 times. The frequency of LTPA in the original CCHS data was converted to seven ordinal scales to match
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the data in this study and then calculated for total frequency in the same way as CP sample. To compare ratio of active adults in the CP sample and samples from other studies, we dichotomously classified the participants as meeting the ACSM recommendation or not (Active: those who perform moderate-intensity aerobic activity for a minimum of 30 min on five days each week or vigorous-intensity aerobic activity for a minimum 20 min on three days each week). The CCHS did not include the question regarding intensity of activity; therefore, this definition was applied only for adults with CP.
Results Of 145 potential participants, a total of 61 responded to our invitation and consented to participate (42% of the eligible sample), of whom 54 completed the survey (89% of consenting participants and 37% of the eligible sample). The mean age of participants was 29.5 years (SD 6.2) and 25 (46%) were female. Nineteen of the participants (35%) were categorized as mild CP, 7 (13%) as moderate (GMFCS level III), and 29 (52%) as severe. Details are provided in Table 1. A non-responder analysis was conducted including all of the participants from the previous survey. There were no differences between respondents and non-respondents with respect to age, sex, and GMFCS (Table 2). Thus, we believe that the group who responded to the present survey was representative of the original sample. Note that the initial sample differed from those typically reported in the literature because of the inclusion of the severe end of the distribution. Thus this sample is more typical of the usual community distribution. The CGP estimates were computed from the CCHS dataset, after filtering to match them by age and the date distributions of the CP survey. This resulted in a population sample of 2731 with a mean age of 30.6 years (SD 6.0) and 1502 were female (55%). Basic characteristics for the CP and CGP sample are summarized in Table 1 CP vs CGP In the sample of CP, 91% participated in LTPA at least once per week. This was similar to the CGP sample (89%). The mean frequency of LTPA per week was 7.3 per week (SD 5.7) in the CP sample and 6.2 (SD 5.6) in the CGP sample, indicating that participation frequency in the CP sample was not different from the CGP sample. The most frequently participated LTPA in adults with CP were walking with a mean frequency of 2.68 (SD 2.16) times per week, followed by swimming with 0.75 (SD 1.34), and home exercise with 1.46 (SD 1.76). In the CGP sample the frequencies for these same activities were 1.39 (SD 2.32), 0.28 (SD 0.13) and 0.51 (SD 1.21) times per week respectively.
Table 1 Participants’ characteristics
Age Gender Male Female Proxy Non-proxy Proxy respondent GMFCS I II III IV V Living situation House Group home Supportive apartment Apartment (not supportive) Living with Parent/sibling Spouse/partner Alone Friend(s) Other Marital status Single Married Living with partner/ common law Separated/divorced Work situation Full-time work Part-time work Going to school Regularly attending workshop/day program/drop in center Not working, but looking for work Not working, not looking for work Volunteering Other
CP sample (n 5 54)
CGP sample (n 5 2731)
29.5 6 6.23 (range: 23e42)
30.6 6 6.01 (range: 20e40)
29 (53.7%) 25 (46.3%)
1229 (45%) 1502 (55%)
22 (40.7%) 32 (59.3%)
N.A.
12 7 7 12 16
(22.2%) (13.0%) (13.0%) (22.2%) (29.6%)
N.A.
41 6 4 3
(75.9%) (11.1%) (7.4%) (5.6%)
35 7 4 3 5
(64.8%) (13%) (7.4%) (5.6%) (9.3%)
596 1396 427 N.A. 299
(21.8%) (51.1%) (15.6%) (10.9%)
46 (85.2%) 5 (9.3%) 2 (3.7%)
1076 (39.4%) 1077 (39.4%) 458 (16.7%)
1 (1.9%)
118 (4.3%)
7 3 3 15
(13.0%) (5.6%) (5.6%) (27.8%)
2401 (87.9%) 330 (12.1%)
7 (13.0%) 13 (24.1%) 3 (5.6%) 2 (3.7%)
The number the different activities in the past three months were 4.12 (SD 2.38) in the CP sample, and 4.69 (SD 3.07) in the CGP sample. Table 3 shows that the percentage of people who participated in each activity at least once in the past 3 months with 95% confident interval (95% CI). In both samples, walking was the most frequently participated LTPA (74% in the CP sample and 74.1% in the CGP sample), followed by home exercise (63%) and swimming (54%) in the CP sample, and followed by gardening (56%) and swimming (49%) in the CGP sample. Adults with CP were less likely to participate in gardening, jogging/running, golfing and fishing (all p ! 0.01 on Fisher’s Exact tests with Bonferroni-Holm correction), while more likely to participate in home-exercise ( p ! 0.05).
K. Usuba et al. / Disability and Health Journal 8 (2015) 611e618 Table 2 Comparison of study participants to those lost to follow-up Study participants Lost to follow-up Variables (n 5 54) (n 5 2731) Age Male GMFCS I II III IV V
20 y 6 mo (6 y 5 mo) 53.7%
19 y 6 mo (5 y 6 mo) 57.2%
22.2% 13.0% 13.0% 22.2% 29.6%
23.2% 14.5% 15.2% 25.4% 21.7%
Type and kind of LTPAs In addition to the LTPAs shown in Table 3, participants reported other LTPAs including yoga, Zumba, canoeing, sailing, dodgeball, and therapeutic horseback riding. Fig. 1 illustrates the percentages of type of LTPA. ‘‘Standard’’ indicates that LTPA without any aids or assistance, and ‘‘modified’’ indicates that LTPA with aid, such as crutches, walker wheelchair or assistance. Thirty-nine adults with CP (72%) participated in one or more modified LTPA. Primary LTPA in adults with CP Of the 54 participants, 46 (85%) indicated a primary LTPA. Walking, home exercise, and swimming were the most frequently reported primary LTPA (33%, 15% and 15% respectively). Of those, 30 (56%) reported the Table 3 Percentage of people who participated in each activity at least once in the past 3 months in adults with CP and the CGP CP sample CGP sample (n 5 54) (n 5 2731) Name of activity
% (95% CI)
% (95% CI)
Walking Gardening/yard work** Swimming Bicycling Popular/social dance Home exercise* Ice hockey Ice skating In-line skating/roller blading Jogging/Running** Golfing** Exercise class/Aerobics Skiing/Snowboarding Bowling Baseball/Softball Tennis Weight-training Fishing** Volleyball Basketball Soccer
74.1 27.7 53.7 31.5 31.5 62.9 1.9 3.7 1.9 7.4 1.9 25.9 0.0 20.4 3.7 1.9 16.7 3.7 0.0 7.4 1.9
74.1 56.0 49.1 37.5 22.2 38.8 3.8 2.1 8.6 35.2 19.0 14.1 e 12.3 13.5 6.8 24.8 23.4 7.9 8.5 14.3
(61.1e83.9) (17.6e40.9) (40.6e66.3) (20.7e44.7) (20.7e44.7) (49.6e74.6) (0.0e9.8) (1.0e12.5) (0.0e9.8) (2.9e17.6) (0.0e9.8) (16.1e38.9) (0.0e5.4) (11.7e32.9) (1.0e12.5) (0.0e9.8) (9.0e28.7) (1.0e12.5) (0.0e5.4) (2.9e17.6) (0.0e9.8)
(72.4e75.7) (54.1e57.8) (47.3e51.0) (35.7e39.4) (20.6e23.7) (36.9e40.6) (3.2e4.6) (1.6e2.7) (7.6e9.8) (33.4e37.0) (17.6e20.5) (12.9e15.5) (11.1e13.6) (12.3e14.9) (5.9e7.9) (23.2e26.4) (21.8e25.0) (6.9e8.9) (7.5e9.6) (13.1e15.7)
*p ! 0.05, **p ! 0.01 on Fisher’s Exact tests with Bonferroni-Holm correction between adults with CP and the CGP. The number and percentage of Skiing in the CCHS is suppressed due to low numbers.
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Table 4 Reported barriers for starting new LTPA in the CP sample Reported barriers n Health condition Lack of time with care attendant Accessibility Cost Lack of information Not strong enough interest Lack of time Transportation Don’t know where to do Lack of equipment May affect condition worse Other Disability Self-conscious Season
%
17 16 13 13 10 10 9 9 7 5 1 8
31.5% 29.6% 24.1% 24.1% 18.5% 18.5% 16.7% 16.7% 13.0% 9.3% 1.9% 14.8%
intensity as moderate, which required moderate physical effort and made breathing somewhat harder than normal, and 4 (7%) reported as vigorous, which required hard physical effort and make you breath much harder than normal. Ten (18.5%) were classified as active based on the recommendation of the ACSM. More than half of them had been participating in the indicated primary LTPA for more than five years, and ‘‘fitness’’ was most frequently reported as the reason for their primary LTPA. Five participants stated in the questionnaire that ‘‘body maintenance’’ was their main reason for participating in LTPA. Interest in/barriers to starting new LTPAs in adults with CP Thirty participants (56%) indicated interests in starting new LTPAs. The most frequently reported barrier for 0%
Walking Gardening/Yardwork Swimming Bicycling Dance Home exercise Hockey Skating Inline skating Jogging/Running Golfing Exercise class/Aerobics Skiing/Snowboarding Bowling Baseball/softball Tennis Weight training Fishing Volleyball Basketball Soccer Yoga Zumba Canoeing Sailing Dogeball Therapeutic Horseback riding
20%
40%
60%
80%
100%
Standard Modified Not Participating
Fig. 1. Proportion of type in each LTPA in adults with CP.
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moving forward to participate in the indicated LTPA was their health condition (32%), followed by lack of time with a personal care attendant (30%), cost (24%), and accessibility of the facility (24%) (Table 4). LTPA in adults with CP by ambulatory status The frequency and ratio of active participants were explored with respect to ambulatory status, with those with GMFCS IeIII being classified as ambulatory (n 5 26) and those with GMFCS IVeV being classified as nonambulatory (n 5 28). The ambulatory group participated in LTPA 9.3 times/week (SD 5.6) on average and 26.9% of them were categorized as active. These were higher than those in the non-ambulatory group (mean 5.5 and SD 5.2, 10.7% were active).
Discussion Many people with chronic diseases and disabilities can benefit from LTPA in the same way as the healthy population; nevertheless information regarding participation in LTPA in adults with CP is limited. Adults with severe disabilities have rarely been included in studies describing LTPA/PA level. Since people with severe disabilities may be at higher risk for a physically inactive life style and have different outcomes, this has been as a gap in the literature.20,23,32,33 In this study, 52% of the participants had GMFCS levels of IV or V, which is similar to the distribution from other community-based samples of adults with CP in Ottawa (47%).34 Thus, this study includes the information of medically fragile adults with CP. In the present study, although adults with severe CP were included, the reported frequency of LTPAs and the number of different kind of LTPA from adults with CP were surprisingly similar to those from the CGP. Thus, adults with CP did not appear to be less active than the CGP based on results. However, our results also showed that approximately 20% of adults with CP met the ACSM criteria for ‘‘active.’’ This proportion was much lower than the 33% of the members of a healthy population reported in the USA by Carlson et al (33%)35 that was measured with a similar questionnaire (including 23 specific exercises, sports or physically active hobbies, such as walking, football, swimming etc.). These findings indicate that adults with CP participated in LTPAs as frequently as the CGP but many of them were not active enough to meet the criteria of ACSM when intensity was taken into consideration. Thus, the findings reported here are consistent with previous studies.21,22 To enable people with CP to obtain health benefit from LTPA, special efforts should be made to increase intensity levels of their LTPAs. These efforts should focus primarily on the non-ambulatory group, because our exploratory analyses indicated that non-ambulatory participants tended
to be inactive. Furthermore, participants need to be monitored carefully to prevent overuse syndromes, which may occur in adults with disabilities.17,18,36,37 The intervention should be implemented slowly and progressed gradually especially with those who have severe motor disability in order to prevent overuse injuries. Although more than half of participants with CP were interested in starting new LTPA, many of them also reported health condition and lack of time with personal care attendant as barriers to moving forward. In this study, more than 40% of participants were categorized as having severe CP, which may be related to unstable health condition including secondary condition, such as pain, deformities, and bowel problems.12 Furthermore, people with severe CP need more time with care attendants for activities of daily living, therefore it might be difficult for them to use limited time with care attendant for participating in LTPA. The high percentage of people who reported health conditions and lack of time with care attendant as a barrier was to be expected because of the fully inclusive cohort in this study. Qualitative studies have identified several barriers for the participation in LTPA; including environment, economic issues, emotional and psychological barriers, equipment barriers, information-related barriers, professional knowledge issues, perceptions and attitudes of persons from non-disable people, and policies.38,39 Our study showed that many adults with CP perceived similar barriers as reported by others38,39; also health condition and environmental factor in ICF framework may have major influences when adults with severe CP are included. Our results, especially the high frequency of participation in LTPAs, appear to contradict some studies that reported lower activity level in adults with disabilities. However, it is difficult to directly compare our results with other studies because of differences in measurements and setting. Santiago and Coyle40 reported that women with physical disabilities participated in LTPAs only 2.9 times per week on average and 39.4% of them never participated in LTPAs. Also Rimmer et al41 reported that only 8.2% of African-American women with physical disabilities participated in LTPAs. One aspect of this discrepancy is that potential rehabilitative exercises, such as home-exercise, were included as LTPA in our study while those were not included as LTPA in Santiago and Rimmer’s studies. The question of defining what activity can be classified as leisure is well documented in the early leisure studies literature but such discussions have taken place without reference to disability. The higher frequency of participation in exercise in adults with CP has been reported by some authors,22,40 and our results were consistent with such studies. Specifically, home-exercise may have a different meaning in people with disabilities because rehabilitative activities are inevitable for them. Indeed, many of their primary LTPAs resembled common rehabilitative exercises that Heller et al42 reported; also more than 40% of our participants reported fitness or body maintenance as a
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reason for the primary LTPA. Therefore, those LTPAs may be obligational rehabilitative activities rather than actual leisure activities for pleasure. Indeed, some studies reported that many people with disabilities reported that they were fed up with exercise/physiotherapy but had to do it to maintain their function.40,43,44 However, it is difficult to identify whether their activities were rehabilitative or pleasant, also the main purpose of this study was to compare the frequency of LTPAs in adults with CP and the CGP. Thus, we did not exclude potential rehabilitative activities from LTPA in the analyses. We recommend that the purpose of such activities (e.g., for intentional rehabilitation, vs. exercise, vs. pleasure) needs to be assessed and taken into account in the design of future research. Despite the potential measurement bias, our results identified that the adults with CP participated in LTPA as frequent as the CGP. We suggest for future research that the definition of LTPA in a disabled population may need to be considered carefully when LTPA is measured. Limitations There are several limitations in this study. First, the low response rate to the survey may be of concern. However, the demographic similarities between respondents and non-respondents suggest that the non-response effect, if any, would be small. Second, we acknowledge that the results are based on a relatively small sample size, which has limited statistical power. However, this is a relatively large sample considering that adults with CP are a hard to reach population because there was no central CP register in Ontario at the time of this survey. Third the questionnaire used in this study was not specifically intended to explore the LTPA in a disabled population. In addition, relatively high rate of proxy respondent and the self-reported nature of the survey may have resulted in a reporting bias, alsousing ordinal values for the number of participation in LTPA on the questionnaire may cause measurement error. Yet, given that there was no standardized or validated measure of LTPA in adults with CP at the time of data collection we feel that the method used to assess LTPA was the most appropriate. Despite such limitations, this study was able to describe the level of participation in LTPAs in this growing population by comparing with the CGP, and provides important data to guide further research.
Conclusion This study describes the self-reported patterns of LTPA participation in Canadian adults with CP and presents a comparison with data from the CGP. This study was important because it is one of very few to include a range of participants including those with severe disabilities.
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The findings suggest that adults with CP were frequently involved in various LTPAs; more so than would be expected. They participated in modified LTPAs with aids; however, the majority of them may not be achieving recommended activity levels. To maximize the benefits from LTPA, the level of LTPAs needs to be increased especially in adults with severe CP. Minimizing key barriers may facilitate participation in LTPAs.
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