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Cerebral Palsy, Health and Well-Being

Cerebral Palsy, Health and Well-Being. Dr. David Berbrayer Head, Division of Physiatry Sunnybrook Health Sciences Centre University of Toronto. Objectives. To discuss health services of adult CP To identify current treatments adult CP To reflect on current research adult CP.

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Cerebral Palsy, Health and Well-Being

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  1. Cerebral Palsy, Health and Well-Being Dr. David Berbrayer Head, Division of Physiatry Sunnybrook Health Sciences Centre University of Toronto

  2. Objectives • To discuss health services of adult CP • To identify current treatments adult CP • Toreflecton current research adult CP

  3. Health Services

  4. Employment

  5. Education

  6. Education and Employment prospects in Cerebral Palsy * • 819 CP Danish registry 1965-1978 • 4406 controls without CP born between 1965 and 1978 (2546 males; mean age 28y 10 mo, SD 4y, range 21 to 35y). • 471 males (21-35 years) • 31% hemiplegia, 43% diplegia, 18% tetraplegia, and 8% other types. • 62% able to walk without assistance, 21% with assistance, and 16% not able to walk (for 1% of study children walking ability not known

  7. Education and Employment prospects in Cerebral Palsy * • Of the participants with CP, 33% vs. 77% of controls, had education beyond lower secondary school (i.e. after age 15-16y) • 29% were competitively employed (vs. 82% of controls), • 5% were studying • 5% had specially created jobs.

  8. Education and Employment prospects in Cerebral Palsy * • Severity of motor impairment among participants with CP able to walk had just a minor influence • 50% CP who had attended mainstream schooling were employed *Dev Med Child Neurol. 2005 Aug;47(8):511-7. Michelsen et.al.

  9. Employment and Social Issues in Adult Cerebral Palsy • 101 cerebral palsy (27-74 yrs) community • 80% wished MD knew more about CP • 84% parents overprotected as child • >90% more sexual education • 67% independent living,34%with and 33% without an attendant • 53% competitively employed • 50% speech deficits Murphy KP et al. Archives PMR 2000

  10. Functional Issues at Work • Adjusted work schedule • Placement of bathrooms • Less walking • ‘Frequent rest periods • Assistive equipment-phone, dragon system etc. • Early retirement

  11. Partners in Health Care

  12. 25 year old male turned away because hand appearance

  13. 25 year old male turned away because hand appearance • Little useful function in this limb • Simply wanted it out of the way • Tendon lengthening at the elbow and wrist • Enabled him to keep his hand in a pocket • Prevented excessive posturing • Obtained desk job 6 weeks after surgery

  14. Adult Complications of CP • Hearing , seeing, mobility and agility • Pain, fatigue, fractures, pressure sores • Spasticity, incontinence, arthritis • Chewing, swallowing , speaking, retiring • Constipation, women’s issues, sexuality • Dental problems, scoliosis • Lack preventive care-prostate and cervix

  15. Equipment and Braces

  16. Health Issues in Young Adults with Cerebral Palsy: towards a Life-Span Perspective • Two data sources were used: 54 adults with cerebral palsy (age range 25-36 years) and 48 physicians (members of the Netherlands Society of Physical and Rehabilitation Medicine) • In the patient sample, pain (59%) and joint deformities (19-57%) were observed most frequently • Evidence of a decrease in the utilization of healthcare services at adult age emerged • Rehabilitation physicians reported pain (88%), joint deformities (86%) and fatigue (76%) as being cerebral palsy-related health problems in adults J Rehabil Med. 2007 Oct;39(8):605-11 Hilberink et al

  17. Functional instruments and health-related quality-of-life measures Global function Pediatrics evaluation of disability inventory Functional independence measure for children Arm functional assessment tests/scales Assessment of quality of movement for unilateral upper-limb function (Melbourne) Quality of upper extremity skills House classification Leg functional assessment instruments Gross motor performance measure Gross motor functional measure Gross motor functional classification system Physician rating scale (lower extremity rating scale) Spasticity assessment instruments Ashworth scale Modified Ashworth scale Tardieu scale Burke-Rahn-Marsden scale of dystonia Barry-Albright dystonia instruments Child health questionnaire Pediatric musculoskeletal-functional scale Health-related quality of life in cerebral palsy: generic Child health questionnaire Peds QL 4.0 Health-related quality of life in cerebral palsy: disease specific instruments Caregiver questionnaire66 Utility measures Health Utilities Index, Mark 3

  18. Health and Well Being of Adults with Cerebral Palsy • Decrease their utilization of health and related services, in part because the transition to adult services is less than optimal. • Adult cerebral palsy have a high prevalence of comorbid and secondary complications • Adults with cerebral palsy also have less participation in areas such as social interactions, employment, marriage, and independent living than adults without cerebral palsy • Cognitive abilities, the severity of the cerebral palsy and age all affect participation • International Classification of Functioning can help identify areas in which research is needed Curr Opin Neurol. 2008 Apr;21(2):136-42 Liptak GS

  19. How well are we doing? Families of adolescents or young adults with Cerebral Palsy share their perceptions of service delivery.” Disabil Rehabil. 2002 Jul 10;24(10):542-9. Darrah J, Magil-Evans J.Atkins R.

  20. Perceptions of Service Delivery • Service delivery in areas of health, education, recreation, employment, housing and transportation • Forty-nine adolescents (13-15 years) • Thirty- nine young adults (19-23 years) • 4 themes: caring and supportive people; fighting and fatigue; disability awareness & communication/information

  21. International Classification of Functioning, Disability, and Health(ICF)

  22. Cerebral Palsy and Driving

  23. Driving and Cerebral Palsy • Impairments in the areas of vision • Impairments in perception • Difficulties in learning • Seizures • Exaggerated startle reflex to loud noise • Spasticity, weakness • Slow processing and reaction time

  24. Unique Difficulties in Driving • Longer time to learn • Difficulty parking • Challenges in getting gas at self serve • Cost of insurance and license • Need for caregiver • Greater difficulty route planning • Higher number accidents able body

  25. Activity limitations in personal, domestic and vocational tasks: a study of adults with inborn and early acquired mobility disorders • To compare activity limitations at the workplace with those in the home situation • Sixty-nine subjects, 22-49 years of age • Functional Independence Measure (FIM) and Instrumental Activity Measure (IAM) and in 22 vocation-related items. • Conclusions: household tasks and transportation dependence & vocation-related tasks independence * Disabil Rehabil. 2004 Mar 4;26(5):262-71 Andren E et.al.

  26. Independent Living and the Physical Environment: aspects that matter to residents.** • 6 factors: • CONTROL * • Safety/Security • Accessibility/Mobility • Function • Flexibility • Privacy **Can J Occup Ther. 1992 Cooper et. al.

  27. What Predictors Independence? • Presence of epilepsy • Severity motor impairment • Parents income and education • Subtype of Cerebral Palsy • Intelligence • Cohabitation • “Social integration of adults with Cerebral Palsy” Developmental Medicine & Child Neurology 2006, 48: 643–649

  28. What Predictors Independence? • Presence of epilepsy • Severity motor impairment • Parents income and education • Subtype of Cerebral Palsy • Intelligence • Cohabitation • “Social integration of adults with Cerebral Palsy” Developmental Medicine & Child Neurology 2006, 48: 643–649

  29. Family Planning

  30. “Decline in function and life expectancy of older persons with cerebral palsy.”* • 904 subjects age 60 • Marked decline in ambulation and ability to dress oneself after age 60 • Preserved speech, self-feeding and the ability to order meals in public • 18% lived independently. • 41% resided in facilities • Survival rates ambulatory only slightly worse non CP but non-ambulatory poor survival * NeuroRehabilitation. 2004;19(1):69-78 Strauss et al

  31. Cognitive Difficulties • Increased incidence of attention deficit hyperactivity disorder (ADHD), mental retardation, and specific learning disabilities • Impact on academic performance and self-esteem • Increased incidence of depression • Increased incidence of progressive development disorder (PDD) or autism associated with concurrent diagnosis of CP

  32. Diet and Nutrition • Not enough food to meet nutritional needs* • Enough food to meet energy needs • Fat free mass is deficient in cerebral palsy** • Poor growth and decrease muscle mass*** • Low iron stores especially in females *Stallings 1996,**Stallings 1995,***Bandin 1991

  33. Effectiveness of Strength Training Programs in Cerebral Palsy • 11 articles: 1 RCT • 8/10 strength increases as result of strength training programs • 2 improvements in activity • 1 improvement in self perception • No negative effects-spasticity or r.o.m. Dodd KJ et al. Archives 2002

  34. Dental Care • Mobility or communication difficulties more likely to attend • Cost not a barrier to attendance • Anxiety and attendant care not barrier • Fear, negative attitudes and dislike major barriers to attendance Russell GM,1993

  35. Independent Living

  36. Transportation

  37. Resources Cerebral Palsy • American Academy for Cerebral Palsy • Can Child ( Hamilton) • United Cerebral Palsy • Ontario Federation Cerebral Palsy • Cerebral Palsy: Hope through Research • Cerebral Palsy Canada • Cerebral Palsy Association Western Australia

  38. Treatment Adult Cerebral Palsy

  39. Spectrum of Disability

  40. Challenges Adult CP

  41. Challenges Adult CP

  42. Premature Ageing • Loss of brain control over movement • Increasing episodes urinary incontinence • Increase lethargy • Loss of strength • Difficulty with stress

  43. Aging with Cerebral Palsy • Occurs after age 40 • May reduce life expectancy • More stress on cardiovascular system • More stress on respiratory system • Increasing loss of strength and mobility, fatigue, spasticity • Rely more on caregiver, lose motivation

  44. Challenges Adult CP

  45. Employment-securing and maintaining Vocational Rehabilitation Estate planning Marriage Life insurance Legal rights Accommodations at work-adjusted work schedule, assistive equipment, frequent rest periods Early retirement Accommodations in marriage and housing Adult Functional Issues

  46. Retrospective Study of Factors affecting Employability of Individuals with Cerebral Palsy in Japan • A retrospective nonrandomized descriptive study was performed • Subjects were 99 individuals with cerebral palsy eligible to have vocational training • All of them perform ADL unassisted • Walking ability, female and experience of learning in a regular school positive factor Tohoku J Exp Med. 2000 Dec;192(4):291-9

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