5. Wright V, Majnemer A. The concept of a toolbox of
7. Bickenbach J, Cieza A, Rauch A, Stucki A, editors. ICF
9. Brewer K, Pollock N, Wright V. Addressing the chal-
outcome measures for children with cerebral palsy: why,
Core Sets: Manual for Clinical Practice. Gottingen:
lenges of collaborative goal setting with children
what, and how to use? J Child Neurol, 2014; 29: 1055–65.
Hogrefe, 2012.
and their families. Phys Occup Ther Pediatr 2014; 34: 138–
6. Schiariti V, Selb M, Cieza A, O’Donnel M, International
8. McDougall J, Wright V, Miller L. Applying the ICF
Classification of Functioning, Disability and Health Core
framework to studying changes in quality of life of
Sets for children and youth with cerebral palsy: a consen-
youth with chronic conditions. Dev Neurorehabil 2011;
sus meeting. Dev Med Child Neurol 2015; 57: 149–58.
14: 41–53.
52.
Heavy going but making progress: challenges for increasing physical activity in young people with cerebral palsy CAROL MAHER School of Health Sciences, University of South Australia – Alliance for Research in Exercise, Nutrition and Activity (ARENA), Adelaide, SA, Australia. doi: 10.1111/dmcn.12608 This commentary is on the original article by Slaman et al. on pages 159–166 of this issue.
Physical activity holds key health and social benefits for young people with disabilities. Furthermore, it is likely to play an important role in maximizing and maintaining physical function, with flow-on implications for independence in daily life.1 Despite these vital benefits, evidence suggests that young people with physical disabilities are physically inactive compared with their typically developing peers.2 To date, very few physical activity interventions for young people with disabilities have been reported in the literature. Slaman et al.’s3 paper represents a quality attempt to increase physical activity and reduce sedentary behaviours in young adults with cerebral palsy, aged 16 to 25 years. The intervention was comprised of a twice-weekly supervised fitness and strengthening session for 3 months, monthly counselling sessions regarding lifestyle physical activity and sedentary behaviour patterns for 6 months, as well as two to four personalized counselling sessions regarding the participants’ sporting interests and suitable local opportunities. In addition, participants were offered optional, individualized sport-specific training sessions. The program was evaluated using a randomized controlled trial design, which followed participants for a full 12 months. The intensive, individualized nature of the intervention program positioned it to have a good impact, yet findings of the randomized controlled trial showed minimal effect. There was no change in the primary outcomes (objectively measured physical activity and sedentary behaviour). A short-term change in self-reported physical activity was observed at 6 months but not at 12 months. However, as
the authors point out, self-reported measures are highly susceptible to reporting and social desirability bias. Despite the less than emphatic results, careful consideration of Slaman et al.’s study raises many interesting questions, which will assist in advancing the field. For example, reasonably high dropout rates were experienced (37%) and the study’s recruitment appeared slow (given the modest target sample and broad eligibility criteria). Why was it that such an individualized, flexible program had difficulty attracting and retaining participants? Is there something unique about this population which makes it particularly difficult for them to take on, and adhere to, a physical activity intervention? Barriers research amongst people with disabilities has typically identified environmental and social factors, such as transport and family resources;4 however, baseline data from our own recent intervention study5 suggest that fatigue may be a major issue for young people with disabilities. Further work is warranted exploring the extent to which fatigue and other intrinsic factors act as a barrier for young people with disabilities taking on additional physical activity. The study also highlights the question, how is physical activity best measured in people with disabilities? Considerable gains have been made in this area over the past decade, with numerous tools scrutinized for reliability and validity in young people with disabilities; however, reasonably few tools have proven credentials.6 The VitaMove tool used by Slaman et al. had been scientifically validated; despite this the authors experienced a number of practical issues (technical failure and participant compliance issues), resulting in high data loss rates and undermining the statistical power of the study. This emphasizes the ongoing work needed to develop suitable tools for measuring physical activity and sedentary behaviour in people with disabilities. Increasing physical activity in young people with physical disabilities is a vital issue. Slaman et al.’s study highlights that we don’t yet have all the answers and this is true for non-disability populations as well. Assisting people to increase their physical activity is a major population
Commentaries
113
health challenge facing virtually every developed country. Slaman et al. and other early studies with disability populations suggest that it is even more complex and challenging in these groups. Clinicians and researchers working with young people with physical disabilities need to persist and
continue coming up with new ways of helping young people with physical disabilities increase their activity levels – the health, social, functional, and well-being gains to be had are too great to do otherwise.
REFERENCES 1. Jahnsen R, Villien L, Aamout G, Standhelle JK, Hom I.
among adolescents and young adults with spastic cerebral
management program for children and adolescents with
Physiotherapy and physical activity – experiences of
palsy? A randomized controlled trial. Dev Med Child Neurol
physical disability-design and methods of the StepUp
adults with cerebal palsy, with implications for children.
2015; 57: 159–66.
study. BMC Pediatr 2014; 14: 31.
4. Shikako-Thomas K, Majnemer A, Law M, Lach L.
6. Clanchy KM, Tweedy SM, Boyd R. Measurement of
2. Carlon SL, Taylor NF, Dodd KJ, Shields N. Differ-
Determinants of participation in leisure activities
habitual physical activity performance in adolescents
ences in habitual physical activity levels of young people
in children and youth with cerebral palsy: system-
with cerebral palsy: a systematic review. Dev Med Child
with cerebral palsy and their typically developing peers:
atic review. Phys Occup Ther Pediatr 2008; 28:
Neurol 2011; 53: 499–505.
a systematic review. Disabil Rehabil 2013; 35: 647–55.
155–69.
Adv Physiother 2003; 5: 21–32.
3. Slaman J, Roebroeck M, Dallmojer A, et al. Can a lifestyle
5. Maher C, Crettenden A, Evans K, Thiessen M, Toohey
intervention programme improve physical behaviour
M, Dollman J. A pedometer based physical activity self-
Physical inactivity and secondary health complications in cerebral palsy: chicken or egg? MARK PETERSON Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA. doi: 10.1111/dmcn.12578 This commentary is on the original article by Mitchell et al. on pages 167–174 of this issue.
Nobody really lives long enough to die of old age. We die from accidents, and most of all, disuse. -Walter Bortz II, M.D. In conjunction with the primary neurological insult, individuals with cerebral palsy (CP) are at risk of various secondary health complications including orthopedic abnormalities, exaggerated sedentary lifestyles, lower fitness, and musculoskeletal fragility. Fundamental movement skills are thought to be a central predictor of activity participation among children with CP, with those who are more proficient tending to be more physically active.1 However, more than one-third of ambulatory children are at risk of losing the ability to walk by early adulthood.2 Clinical efforts are thus largely directed at preserving ambulatory status by treating the overt symptoms of CP such as pain, fatigue, gait and orthopedic abnormalities, and spasticity. Despite the documented efficacy of these interventions to alleviate symptoms of physiological or biomechanical dysfunction, what remains to be determined is whether such practices actually lead to sustainable behavior modifications and/or preser114 Developmental Medicine & Child Neurology 2015, 57: 112–119
vation of activity patterns throughout the lifespan. In reality, and even with the typically developing pediatric population, low physical activity participation has become a public health burden, with less than 25% of adolescents meeting recommended levels.3 Given that habitual activity behaviors are known to track from adolescence into adulthood,4 and moreover, that physical inactivity is a modifiable risk factor for various cardiometabolic diseases, cancer and early all-cause mortality, evaluating the prevalence and contributing factors of participation among adolescents of all abilities may help to inform viable public health interventions. In their recent study, Mitchell et al.5 sought to determine the extent to which personal and environmental factors contribute to habitual physical activity among ambulatory children and adolescents with CP. Their findings identified several factors that were associated with greater objectively-measured physical activity, including physical ‘capacity’ (as determined by the 6-minute walk test [6MWT]), lower age, the male sex, and greater participation in the home and community. This is a valuable addition to the body of literature, and should serve as yet another reminder for clinicians and parents to vigilantly monitor physical activity patterns among children with CP. Perhaps more importantly, it also highlights several modifiable factors that could be targeted to potentially improve activity participation. Yet, as with all cross-sectional research, the interpretation of these findings must be viewed within the context of an unknown direction of causation. The authors make a strong and
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
7. Bickenbach J, Cieza A, Rauch A, Stucki A, editors. ICF
9. Brewer K, Pollock N, Wright V. Addressing the chal-
outcome measures for children with cerebral palsy: why,
Core Sets: Manual for Clinical Practice. Gottingen:
lenges of collaborative goal setting with children
what, and how to use? J Child Neurol, 2014; 29: 1055–65.
Hogrefe, 2012.
and their families. Phys Occup Ther Pediatr 2014; 34: 138–
6. Schiariti V, Selb M, Cieza A, O’Donnel M, International
8. McDougall J, Wright V, Miller L. Applying the ICF
Classification of Functioning, Disability and Health Core
framework to studying changes in quality of life of
Sets for children and youth with cerebral palsy: a consen-
youth with chronic conditions. Dev Neurorehabil 2011;
sus meeting. Dev Med Child Neurol 2015; 57: 149–58.
14: 41–53.
52.
Heavy going but making progress: challenges for increasing physical activity in young people with cerebral palsy CAROL MAHER School of Health Sciences, University of South Australia – Alliance for Research in Exercise, Nutrition and Activity (ARENA), Adelaide, SA, Australia. doi: 10.1111/dmcn.12608 This commentary is on the original article by Slaman et al. on pages 159–166 of this issue.
Physical activity holds key health and social benefits for young people with disabilities. Furthermore, it is likely to play an important role in maximizing and maintaining physical function, with flow-on implications for independence in daily life.1 Despite these vital benefits, evidence suggests that young people with physical disabilities are physically inactive compared with their typically developing peers.2 To date, very few physical activity interventions for young people with disabilities have been reported in the literature. Slaman et al.’s3 paper represents a quality attempt to increase physical activity and reduce sedentary behaviours in young adults with cerebral palsy, aged 16 to 25 years. The intervention was comprised of a twice-weekly supervised fitness and strengthening session for 3 months, monthly counselling sessions regarding lifestyle physical activity and sedentary behaviour patterns for 6 months, as well as two to four personalized counselling sessions regarding the participants’ sporting interests and suitable local opportunities. In addition, participants were offered optional, individualized sport-specific training sessions. The program was evaluated using a randomized controlled trial design, which followed participants for a full 12 months. The intensive, individualized nature of the intervention program positioned it to have a good impact, yet findings of the randomized controlled trial showed minimal effect. There was no change in the primary outcomes (objectively measured physical activity and sedentary behaviour). A short-term change in self-reported physical activity was observed at 6 months but not at 12 months. However, as
the authors point out, self-reported measures are highly susceptible to reporting and social desirability bias. Despite the less than emphatic results, careful consideration of Slaman et al.’s study raises many interesting questions, which will assist in advancing the field. For example, reasonably high dropout rates were experienced (37%) and the study’s recruitment appeared slow (given the modest target sample and broad eligibility criteria). Why was it that such an individualized, flexible program had difficulty attracting and retaining participants? Is there something unique about this population which makes it particularly difficult for them to take on, and adhere to, a physical activity intervention? Barriers research amongst people with disabilities has typically identified environmental and social factors, such as transport and family resources;4 however, baseline data from our own recent intervention study5 suggest that fatigue may be a major issue for young people with disabilities. Further work is warranted exploring the extent to which fatigue and other intrinsic factors act as a barrier for young people with disabilities taking on additional physical activity. The study also highlights the question, how is physical activity best measured in people with disabilities? Considerable gains have been made in this area over the past decade, with numerous tools scrutinized for reliability and validity in young people with disabilities; however, reasonably few tools have proven credentials.6 The VitaMove tool used by Slaman et al. had been scientifically validated; despite this the authors experienced a number of practical issues (technical failure and participant compliance issues), resulting in high data loss rates and undermining the statistical power of the study. This emphasizes the ongoing work needed to develop suitable tools for measuring physical activity and sedentary behaviour in people with disabilities. Increasing physical activity in young people with physical disabilities is a vital issue. Slaman et al.’s study highlights that we don’t yet have all the answers and this is true for non-disability populations as well. Assisting people to increase their physical activity is a major population
Commentaries
113
health challenge facing virtually every developed country. Slaman et al. and other early studies with disability populations suggest that it is even more complex and challenging in these groups. Clinicians and researchers working with young people with physical disabilities need to persist and
continue coming up with new ways of helping young people with physical disabilities increase their activity levels – the health, social, functional, and well-being gains to be had are too great to do otherwise.
REFERENCES 1. Jahnsen R, Villien L, Aamout G, Standhelle JK, Hom I.
among adolescents and young adults with spastic cerebral
management program for children and adolescents with
Physiotherapy and physical activity – experiences of
palsy? A randomized controlled trial. Dev Med Child Neurol
physical disability-design and methods of the StepUp
adults with cerebal palsy, with implications for children.
2015; 57: 159–66.
study. BMC Pediatr 2014; 14: 31.
4. Shikako-Thomas K, Majnemer A, Law M, Lach L.
6. Clanchy KM, Tweedy SM, Boyd R. Measurement of
2. Carlon SL, Taylor NF, Dodd KJ, Shields N. Differ-
Determinants of participation in leisure activities
habitual physical activity performance in adolescents
ences in habitual physical activity levels of young people
in children and youth with cerebral palsy: system-
with cerebral palsy: a systematic review. Dev Med Child
with cerebral palsy and their typically developing peers:
atic review. Phys Occup Ther Pediatr 2008; 28:
Neurol 2011; 53: 499–505.
a systematic review. Disabil Rehabil 2013; 35: 647–55.
155–69.
Adv Physiother 2003; 5: 21–32.
3. Slaman J, Roebroeck M, Dallmojer A, et al. Can a lifestyle
5. Maher C, Crettenden A, Evans K, Thiessen M, Toohey
intervention programme improve physical behaviour
M, Dollman J. A pedometer based physical activity self-
Physical inactivity and secondary health complications in cerebral palsy: chicken or egg? MARK PETERSON Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA. doi: 10.1111/dmcn.12578 This commentary is on the original article by Mitchell et al. on pages 167–174 of this issue.
Nobody really lives long enough to die of old age. We die from accidents, and most of all, disuse. -Walter Bortz II, M.D. In conjunction with the primary neurological insult, individuals with cerebral palsy (CP) are at risk of various secondary health complications including orthopedic abnormalities, exaggerated sedentary lifestyles, lower fitness, and musculoskeletal fragility. Fundamental movement skills are thought to be a central predictor of activity participation among children with CP, with those who are more proficient tending to be more physically active.1 However, more than one-third of ambulatory children are at risk of losing the ability to walk by early adulthood.2 Clinical efforts are thus largely directed at preserving ambulatory status by treating the overt symptoms of CP such as pain, fatigue, gait and orthopedic abnormalities, and spasticity. Despite the documented efficacy of these interventions to alleviate symptoms of physiological or biomechanical dysfunction, what remains to be determined is whether such practices actually lead to sustainable behavior modifications and/or preser114 Developmental Medicine & Child Neurology 2015, 57: 112–119
vation of activity patterns throughout the lifespan. In reality, and even with the typically developing pediatric population, low physical activity participation has become a public health burden, with less than 25% of adolescents meeting recommended levels.3 Given that habitual activity behaviors are known to track from adolescence into adulthood,4 and moreover, that physical inactivity is a modifiable risk factor for various cardiometabolic diseases, cancer and early all-cause mortality, evaluating the prevalence and contributing factors of participation among adolescents of all abilities may help to inform viable public health interventions. In their recent study, Mitchell et al.5 sought to determine the extent to which personal and environmental factors contribute to habitual physical activity among ambulatory children and adolescents with CP. Their findings identified several factors that were associated with greater objectively-measured physical activity, including physical ‘capacity’ (as determined by the 6-minute walk test [6MWT]), lower age, the male sex, and greater participation in the home and community. This is a valuable addition to the body of literature, and should serve as yet another reminder for clinicians and parents to vigilantly monitor physical activity patterns among children with CP. Perhaps more importantly, it also highlights several modifiable factors that could be targeted to potentially improve activity participation. Yet, as with all cross-sectional research, the interpretation of these findings must be viewed within the context of an unknown direction of causation. The authors make a strong and
Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
