Quality of Life - Agape Centre Sibu

18-Jul-12Scope of presentationQuality of Lifein Children with Cerebral PalsyQOL in Children with Cerebral Palsy• What is cerebral palsy?• What impacts on QOL in kids with CP• Rationalising goals for kids with CPTerrence ThomasPaediatric NeurologistKK Women’s andChildren’s HospitalSingHealthKK Women’s andChildren’s HospitalSingHealthUnderstanding Cerebral PalsyProblem with motor functionTone, Movement and posturedue to injury to the developingbrainKK Women’s andChildren’s HospitalSingHealthKK Women’s andChildren’s HospitalMotor Function:PosturetonestrengthbalanceMovementspeedtimingcoordination02-Jan-094SingHealthUnderstanding Cerebral PalsyMotor Function:Throwing a ballKK Women’s andChildren’s HospitalPosturetonestrengthbalanceMovementspeedtimingcoordination02-Jan-095SingHealthKK Women’s andChildren’s HospitalSingHealthNECIC 2012 Sibu Malaysia 1

18-Jul-12Understanding Cerebral PalsyCauses of Cerebral PalsyWhat problems does the child face?PrenatalIntrapartumPostnatalMotor systemgait, mobilitysitting, standinghand functionfeeding difficultiessquintscoliosisconstipationAssociated problemslearning difficultiesspeech, language delayepilepsyvisual impairmenthearing impairmentbehavioural disorderstrokeprematuritybrain malformations asphyxiaintrauterine infections strokechorioamnionitis meningitisintracranial bleed intracranial bleedkernicterus90%KK Women’s andChildren’s Hospitalanoxiameningitisnon-accidental injurystrokeSingHealth25201510519701975 1980 1985 1990 1995 2000cerebral palsyPooled data from Australia, Canada, Scotland,Denmark, England, United States, Norway, andIrelandClark. Am J ObstGynec 2003Caesareansection rateCerebral Palsyprevalencefamily doctorrehabilitationphysicianpaediatricianneurologistThe CP Management Teamcommunitynursesocial workereducationalpsychologistCP child&FamilyNGO’sspecial Edteachersphysiotherapistoccupationaltherapistoptometristorthoptistspeech languagepathologistorthopaedicsurgeonLiving with Cerebral PalsyLiving with Cerebral PalsyNeighbourhoodCommunityCP child&FamilySchoolParent(Mom or Dad)CP childSpouse(working)BrotherSisterSisterReligiousCommunityFAMILY UNITKK Women’s andChildren’s HospitalSingHealthNECIC 2012 Sibu Malaysia 2

18-Jul-12Living with Cerebral PalsyLiving with Cerebral PalsyCP childmobilitybasic self carecommunicationschoolfitting-inParent(Mom or Dad)CP childperceived progressgoals settingburden of careexhaustionconcerns about futureQuality of LifeQuality of LifeKK Women’s andChildren’s HospitalSingHealthKK Women’s andChildren’s HospitalSingHealthLiving with Cerebral PalsyLiving with Cerebral PalsyParent(Mom or Dad)Spouse(working)SisterSpouse(working)Sistermeeting spouse’s needsmeeting children’s needsBrotherSisterCP childBrotherSisterKK Women’s andChildren’s HospitalSingHealthQuality of LifeKK Women’s andChildren’s HospitalSingHealthParent(Mom or Dad)Living with Cerebral PalsyDisability and QOLParent(Mom or Dad)Spouse(working)SisterBody function& structureImpairmentBrotherCP childSisterFAMILY UNITKK Women’s andChildren’s HospitalSingHealthKK Women’s andChildren’s HospitalSingHealthNECIC 2012 Sibu Malaysia 3

18-Jul-12Disability and QOLDisability and QOLBody function& structureActivitiesBody function& structureActivitiesParticipationImpairmentLimitationImpairmentLimitationRestrictionKK Women’s andKK Women’s andChildren’s HospitalChildren’s HospitalSingHealthSingHealthDisability and QOLMeasuring Quality of LifeBody function& structureActivitiesParticipationCP QOL-ChildCP Quality of Life Questionnaire for childrenImpairmentLimitationRestrictionCHQChild Health QuestionnaireEnvironmentFamilySocial set-upPersonalityKIDSCREEN-10European Quality of Life questionnaire – 10 domainsKK Women’s andKK Women’s andChildren’s HospitalChildren’s HospitalSingHealthSingHealthMeasuring Quality of LifeRationalising QOL GoalsKK Women’s andChildren’s HospitalSingHealthCP QOL-ChildCP Quality of Life Questionnaire for children• Social well-being and acceptance• Feelings about functioning• Participation and physical health• Emotional wellbeing• Access to services• Pain and feelings about disability• Family healthThe KidsWho CanKK Women’s andChildren’s HospitalSingHealthGMFCS I-IIIThe KidsWho Need a lot of careGMFCS IV-IVSevere cognitive impairmentBed boundTube feedingVisual impairmentNECIC 2012 Sibu Malaysia 4

18-Jul-12Rationalising QOL GoalsMotor ability and QOLThe KidsWho CanGMFCS I-III+/- somelearning issuesvisuo-motor issuesmanual dexterityepilepsymobilitybasic self carecommunicationschoolfitting-inCP QOL-ChildGMFCS I GMFCS II p value• Social well-being, acceptance• Feelings about functioning• Participation & physical health• Emotional wellbeing• Access to services• Pain, feelings about disability• Family health71656769286263676661664350510.250.770.160.540.020.010.02KK Women’s andChildren’s HospitalSingHealthKK Women’s andChildren’s HospitalSingHealthChe CM Am J Phys Med Rehabil 2011rehabilitationrehabilitationImportantphysiotherapyImportantAids and adaptationsoccupational therapytechniques:Bobath’sneurodevelopmental therapyPeto’s conductive educationsensory integration therapyKK Women’s andChildren’s HospitalSingHealthrehabilitationrehabilitationImportantspeech therapybehavioural therapymedical treatmentsmuscle relaxants - baclofenseizure medicationsKK Women’s andChildren’s HospitalSingHealthsometimes usedmedical treatmentsbotulinum toxinsurgical treatmentsorthopedic surgery - contracure release, hip surgeryneuro surgery - dorsal rhizotomycomplimentary therapiespool timehippotherapymusictherapymassageacupunctureNECIC 2012 Sibu Malaysia 5

18-Jul-12rehabilitationRationalising QOL GoalsKK Women’s andChildren’s HospitalSingHealthEducationistOrhtoptistspeechONE STOPCENTREphysioRehabdoctorOTChild Caregiverkeeping healthyoptimise nutritionprevent deconditioningprevent painKK Women’s andChildren’s HospitalSingHealthThe KidsWho Need a lot of careGMFCS IV-IVSevere cognitive impairmentBed boundTube feedingVisual impairmentRationalising QOL GoalsLife expectancy in Cerebral PalsyChild Caregiverfacilitate & ease careanticipate complicationsrespitetime for spouse, other kidsmental healthsocial integrationThe KidsWho Need a lot of careGMFCS IV-IVSevere cognitive impairmentBed boundTube feedingVisual impairmentKK Women’s andChildren’s HospitalSingHealthHutton. Arch Dis Child 2006Goals of rehabilitationmanagementSeverely impaired children - improve Quality of Life forfamilyfeeding - method, time to feedmobilitymanage seizuresprevent complications that impact on long termcare:respite care - hip dislocation, scoliosisSeverely impairedchildrenGastrostomy tube for feedingmanagementKK Women’s andChildren’s HospitalSingHealthNECIC 2012 Sibu Malaysia 6

18-Jul-12Severe cerebral palsyquadriplegic cerebralpalsyrehabilitationnotrecommended“medical treatments”health supplements: Palsotab, Ceretitin, Nootropilstem cell therapyrehabilitation techniquesGlenn Doman (Institute for Achievement of HumanPotential)complimentary therapiesEEG neurofeedback biofeedbackmagnetic therapychiropractic manipulationelectrical stimulation craniosacral therapyspecial dietshyperbaric oxygenrehabilitationnotrecommended“medical treatments”health supplements: Palsotab, Ceretitin, Nootropilstem cell therapyrehabilitation techniquesGlenn Doman (Institute for Achievement of HumanPotential)complimentary therapiesEEG neurofeedback biofeedbackmagnetic therapychiropractic manipulationelectrical stimulation craniosacral therapyspecial dietshyperbaric oxygenAlternative TherapiesAlternative TherapiesParent(Mom or Dad)Spouse(working)???BrotherSisterCP childSisterCP child“FAMILY” UNITKK Women’s andChildren’s HospitalSingHealthKK Women’s andChildren’s HospitalSingHealthNECIC 2012 Sibu Malaysia 7

18-Jul-12Practical Issues We Face• CP management teams• Resources for aids and adaptations• School• Respite careGrowing up with CP• What happens after school is over?• Transition to Adult careThank YouGardensby the BayKK Women’s andChildren’s HospitalSingHealthNECIC 2012 Sibu Malaysia 8