Determinants of quality of life and participation in children with cerebral palsy

1. Determinants of quality of life and participation in children with cerebral palsy Annette Majnemer, Michael Shevell, Mary Law, Peter Rosenbaum, Chantal Poulin McGill University & McMaster University Montreal Children�s Hospital-MUHC

2. Outcomes of Children with CP Children with CP may have difficulties in their ability to move, problem solve, socialize and communicate Associated with activity limitations At risk for lower participation in social and recreational activities

3. Quality of Life Quality of life: an individual�s perception of their well-being and general satisfaction with life (personal perspective) A good life quality may occur in spite of significant deficits �disability paradox� Importance of contextual factors (personal, environmental) increasingly appreciated

4. Participation in Leisure Activities Participation Taking part or being involved in everyday life activities and roles Leisure activities Those activities that an individual chooses to participate in during their spare time because they find them enjoyable Participation in leisure activities Important in fostering friendships, enhancing skill competencies, developing personal interests and identity

5. Quality of life and participation in leisure activities in children with CP

6. Life Quality of Children with CP Little descriptive data on quality of life Lower than the norm (physical<psychosocial) Determinants of life quality Severity of CP- physical well-being; general health, parent impact Pain- emotional impact on parents Epilepsy, cognition- not predictive Type of CP- children with quadriplegia have lower scores than other spastic types

7. Participation in Leisure Activities Few studies on children with CP specifically Pattern of participation Similar to children with other physical disabilities Decreased when compared to peers (less varied, home-based, less social and physical activities) Variety of intrinsic and extrinsic factors beginning to emerge as predictors of participation for children with physical disabilities Activity limitations, age, gender Family preferences, parent education, social supports, environmental barriers

8. Rationale Paucity of information on the life-quality of school-age children with CP Broader understanding of health and well-being needed Parent and child perspectives important Identification of key determinants for development of health promotion initiatives Focus beyond body functions as predictor variables

9. To what extent do children with cerebral palsy enjoy a good quality of life?What factors are most important in ensuring a good life quality?What intrinsic and extrinsic factors influence level of involvement in leisure activities?

10. Primary Study Objectives Describe the quality of life and level of participation in children of school-age with CP Parent and child perspectives Identify relative strengths Identify the determinants of enhanced life quality Biomedical Activity limitations Personal factors Environmental factors

11. Research Design Consecutive series of children with CP Historical cohort Letter sent to parents describing study For children between 6-12 years of age: (2003-06) Following consent, appointment made Evaluations by a psychologist, OT, PT and neurologist

12. Outcome Measures Health-related Quality of Life Child Health Questionnaire (PF50, CF87) Physical well-being Psychosocial well-being Pediatric Quality of Life Inventory (PedsQL) Domains: physical, emotional, social, school Parent & child data collected when feasible

13. Outcome Measures Participation Children�s Assessment of Participation and Enjoyment (CAPE) Administered to those children who could actively participate in completing the measure Intensity (how often; in the last 4 months) Diversity (how many activities) Level of enjoyment

14. Predictor Variables Biomedical factors: Type of CP, history of neonatal difficulties, etiology Developmental & functional status: Leiter Intelligence Test, Gross Motor Function Measure, Vineland Adaptive Behavior Scale, Strengths & Difficulties Questionnaire Personal factors: Gender, SES, age Motivation- Dimensions of Mastery Questionnaire Environmental factors: Family functioning- Impact on Family Scale, Parenting Stress Index Current rehabilitation services Segregated vs. integrated schooling

15. Results

16. Group Characteristics 95 children with CP recruited 25.8% refused, (25/153 lost to follow-up) Mean age: 9.3 � 2.1 (5.8-12.9 years) 35 female, 60 male 45% premature 47% level I, 16% level II, 2% level III, 9% level IV, 26% level V 36% spastic quadriplegia, 26% spastic hemiplegia, 20% spastic diplegia,18% other 44% special school, remainder in regular school (� resources) 84% -rehabilitation services

17. Quality of Life Journal of Pediatrics, 151:470-5, 2007

18. Quality of Life (CHQ) Child Health Questionnaire Physical well-being: 39.6�16.9 50.0% <40 Psychosocial well-being: 43.0�11.3 53.8% <40

19. Quality of Life (PedsQL)

20. Parent�s vs Child�s Perspectives PedsQL Physical well-being: ICC=0.72, [CI: .55-.83] Psychosocial well-being: ICC=0.54, [CI: .30-.71] Children rated themselves higher overall Parents more likely to score lower than their child did except for emotional subscale Less discrepancy in scores between dyads for: Boys, older children, better daily living skills, less emotional problems, prosocial behaviors

21. Predictors of Physical Well-being Type of CP (quadriplegia< hemiplegia) Motor function Functional limitations Motivation Impact on family Parental stress Rehabilitation service needs Segregated school setting Family income Gender Age Neonatal difficulties IQ Behavioral difficulties

22. Best Predictive Models: Physical Well-being PedsQL (r2= 0.65, p<.0001) GMFM score Mastery motivation- gross motor persistence Mastery motivation- social persistence with adults Child Health Questionnaire (r2= 0.32, p<.0001) GMFM score

23. Predictors of Psychosocial Well-being Behavioral difficulties Poor socialization skills Motivation Parental stress Rehabilitation service needs Type of CP Neonatal difficulties Motor function Functional limitations IQ Gender Age Family income School setting

24. Best Predictive Models: Psychosocial Well-being PedsQL (r2= 0.55, p<.0001) Behavior problems- total score and impact scale Need for rehabilitation services Child Health Questionnaire (r2= 0.60, p<.0001) Socialization skills Behavior problems- total score and impact scale Impact on family

25. Participation in Leisure Activities

26. Group Characteristics 67/95 were able to participate in completing the CAPE Compared to the group as a whole, this group was more likely to: Have mild motor impairment (18% III-V) Be integrated in regular schools

27. Participation in Leisure Children participated in a wide range of activities High level of enjoyment, similar to peers Exception: skill-based activities Intensity (frequency) Participated in recreational activities most often, as well as social and self-improvement activities Somewhat similar to children with physical disabilities, but lower than peers

28. Favorite Activities* by Domain Recreational Doing crafts, drawing or coloring; playing computer or video games; playing with pets; pretend play; playing with toys; walking or hiking; watching TV or renting a movie Active Physical None (bicycling/in-line skating/skateboarding, team sports, water sports) Social Talking on the phone; hanging out; listening to music Skill-based None (swimming, dancing) Self-improvement Reading; doing a chore; homework *more than 50% participate in these activities on a weekly basis (30-50%)

29. Activities with Limited Involvement <6% participated in martial arts, art lessons, musical instrument, paid job 76% not part of a community organization 85% do no volunteer work 87% not involved in school clubs Avenues to pursue in the future to enhance community engagement and participationAvenues to pursue in the future to enhance community engagement and participation

30. Predictors of Participation Intensity (how often) Recreation (r2= 0.18, p=.006) Behavior problems (conduct) Mastery motivation Active physical (r2= 0.34, p=.019) Motor function Etiology Skill-based (r2= 0.09, p=.015) Rehabilitation services Social (r2= 0.38 p=.0004) IQ VABS adaptive behavior Mastery pleasure Self-improvement (r2= 0.44, p<.0001) Older children Communication Parental stress (child)

31. Predictors of Participation Diversity (how many) Recreation (r2= 0.33, p=.0008) Behavior problems (conduct) Mastery motivation VABS Daily living skills Parental stress Active physical (r2= 0.34, p=.019) Motor function Hyperactivity Skill-based (r2= 0.10, p=.014) Rehabilitation services Social (r2= 0.40 p=.0002) IQ VABS socialization Mastery pleasure Self-improvement (r2= 0.40, p<.0001) Older children Communication Motor function Variety of activities involved in;in addition to those identified for intensity,,,Variety of activities involved in;in addition to those identified for intensity,,,

32. Predictors of Participation Enjoyment (how much fun) Recreation (r2= 0.25, p=.006) IQ Behavior problems (peer relations) Parental stress (child) Active physical (r2= 0.35, p<.0001) Parental stress (child) Rehabilitation services Skill-based (r2= 0.29, p=.0005) Behavior problems (hyperactive) Gender Social (r2= 0.16 p=.015) Behavior problems (peer relations) Parental stress (child) Self-improvement (r2= 0.38, p<.0007) Negative reaction to failure Parental stress (child) Gender Age at assessment Variety of activities involved in;in addition to those identified for intensity,,,Variety of activities involved in;in addition to those identified for intensity,,,

33. Next Steps� Qualitative study (interviewing adolescents with CP) Majnemer, Lach, Shikako-Thomas, Shevell Extrinsic factors Family factors, community environment, school environment, activities, peers, technology Intrinsic factors Cerebral palsy factors, coping, perception of disability, personality, affective experience of disability

34. QUALA Study:Quality of Life And Leisure in Adolescents Determinants of quality of life and participation in adolescents with cerebral palsy

35. Summary of Findings Children with CP may experience a good life quality, in spite of disability At-risk for poor physical and psychosocial well-being Children have a more optimistic view of their life quality than their parents

36. Summary of Findings Type and severity of CP and activity limitations may influence physical well-being Importance of enhancing functional abilities Personal (motivation, behavioral difficulties) and environmental (family functioning) factors are associated with social-emotional well-being Potentially modifiable, but often not directly addressed as part of health and rehabilitation services

37. Summary of Findings Children with CP participate in a variety of leisure activities and experience a high level of enjoyment Less likely to participate in skill-based and active physical activities Less involvement in community-based activities Few in art or music; assistive technologies and virtual reality-future avenues Community clubs, volunteer � should be encouraged.facilitatedFew in art or music; assistive technologies and virtual reality-future avenues Community clubs, volunteer � should be encouraged.facilitated

38. Summary of Findings Severity of motor dysfunction, cognitive impairments and activity limitations may limit involvement in active-physical activities Accessability to adapted physical activities Role of new technologies Motivation can facilitate participation whereas behavior and social difficulties and parental stress may pose barriers to involvement and enjoyment of leisure activities Medical and rehabilitation services directed at these domains Rehabilitation services appear to facilitate the ability to participate in skill-based and physical activities Adapted physical activities: sailing, riding, skiing, etc.- awareness of what�s available, barriers re cost New technologies: playing music thru computers, virtual reality Rehab- involvement in skill based, enjoyment of physical Adapted physical activities: sailing, riding, skiing, etc.- awareness of what�s available, barriers re cost New technologies: playing music thru computers, virtual reality Rehab- involvement in skill based, enjoyment of physical

39. Practice Implications Health professionals need to be better informed about the extent and range of functioning, disability and health in children with CP Counseling families Providing appropriate resources Knowledge about determinants of good life quality will assist with Establishing realistic goals with family Planning effective services Guiding public policy

40. Childhood Disability LINKLinking Information and New Knowledgewww.childhooddisability.ca

41. Special thanks to:Nicholas Hall, Research CoordinatorOTs: Rena Birnbaum, Cynthia Perlman, Amy BrownsteinPsychologists: Lisa Steinbach, Nancy Marget, Mafalda Porporino, Terry Viola, Chantal MartelParents and children who participated in this study

42. Study funded by the United Cerebral Palsy Research & Educational Foundation (US)

43. Throughout Life with Cerebral Palsy Partnership, Environment and Participation