Au Audit it of He Healt alth Sup uperv ervision ision Ser ervices vices for or Ch Chil ildr dren en wit ith Do Down Synd yndrome ome Community Paediatrics SWRHA Dr. P. Bahadursingh Dr. A. Jagoo Dr. N. Ramnarine Dr. D. Rock
“When you focu you focus s on so on some meone's one's d disabi isabili lity yo ty you' u'll ll ov overlook erlook their abil their abilit itie ies, beauty s, beauty an and d uniqueness uniqueness. . On Once ce yo you u learn to a learn to acc ccep ept and love t and love t the hem for who m for who th they ey ar are, e, you subco you subcons nsci ciously lear ously learn n to to love love yo yourself urself unconditionally.” Yvonne Pi Pierre, Th The Day My My Soul Cr Cried: A M A Memoir
AI AIM of of Au Audit dit To ap apprais ise health th superv rvis isio ion serv rvic ices es availa lable ble within in SWRHA HA for or the lon ong term rm ma manageme ment nt of ch children en with Do Down Syndrome me (D (DS)
AA AAP GU GUID IDELIN ELINES ES FOR FOR DS DS • The following outline is designed to help the paediatrician provide care for children with Down syndrome & their families • It is organized by the issues that need to be addressed in various age groups & throughout childhood
AA AAP GU GUID IDELIN ELINES ES FOR FOR DS DS Several areas require ongoing assessment throughout childhood and should be reviewed periodically at developmentally appropriate ages
AA AAP GU GUID IDELIN ELINES ES 201 2011: 1: He Healt alth Su Super pervision vision • Birth - 1 Month • 1 Month - 1 Year • 1 Year - 5 Years • 5 Years - 13 Years • 13 Years - 21 Years or Older
As Assessmen sessment thr hrough ough ch child ildhood hood • Personal support available to family • Financial & medical support programs • Supplemental Income benefits • Injury & abuse prevention with special consideration of developmental skills • Diet & exercise to maintain appropriate weight
BI BIRTH TH - 1 MO MONT NTH • Confirm diagnosis with a karyotype • Discuss & review : hypotonia, facial features
BI BIRTH TH - 1 MON MONTH TH Squint & Feeding Hearing loss Heart defects cataracts Duodenal Respiratory Leukemia Constipation atresia Tract infection Hypothyroidism
BI BIRTH TH - 1 MON MONTH TH Heart defects - Perform ECHO Feeding issues -Radiographic assessment Eyes – check for red reflex & squint Hearing loss – perform hearing tests (OAE, BAE ) Duodenal atresia/ anorectal atresia- history & clinical exam
AA AAP GU GUID IDELIN ELINES ES FOR FOR DS DS: BI BIRTH TH - 1 MO MONT NTH • Constipation – evaluate for restricted diet, limited fluid intake or GI malformations & Hirschsprung disease • Gastroesophageal reflux- diagnosed & managed clinically • Congenital hypothyroidism- Obtain TSH & T4
AA AAP GU GUID IDELIN ELINES ES FOR FOR DS DS: 1 mo month – 1y 1yea ear • Physical exam & lab studies • Review risk of otitis media • Administer pneumococcal vaccine • TFTs screen : rpt at 6 , 12 months then annually
AA AAP GU GUID IDELIN ELINES ES FOR FOR DS DS: 1 mo month – 1y 1yea ear 1 st 6 • Within the mths – discuss symptoms of obstructive sleep apnoea • At each visit- discuss the importance of maintaining the C- spine during certain procedures • Monitor weight & follow weight- for- height trends
AA AAP GU GUID IDELIN ELINES ES FO FOR DS DS: 1 mo month – 1ye 1year ar • Within the first 6 mths of life evaluate for squint & cataracts • Monitor infants with cardiac defects • Monitor CBC for signs of iron deficiency anemia • Monitor for signs of neurologic dysfunction- seizures
AAP AAP GU GUIDELINE DELINES FO FOR DS: S: 1 - 5 5 ye year ars • Obtain History & Physical exam • Monitor risk of OM & hearing Loss • Check audiogram every 6 months until 3 years if tympanic membranes are not visible
AAP AAP G GUI UIDELI DELINES NES FOR DS: S: 1-5 ye years ars • Obtain x-rays between 3-5 years of age to evaluate atlanto-axial instability if symptomatic • Annual Thyroid & ophthalmological screening • Discuss symptoms of sleep apnea
AA AAP GU GUID IDELINE ELINES FO FOR DS DS: 1- 5 5 ye years ars • Review early intervention : OT , ST, PT, Preschool, school placement & performance • Discuss : behavioural issues, discipline ,sibling adjustment, socialization, recreation, diet & physical activity
AAP AAP GU GUIDELINE DELINES FO FOR DS: S: 5 -13 year ye ars • History & physical exam • Annual audiology and ophthalmology screening • Annual TFTs
AA AAP GU GUID IDELIN ELINES ES FO FOR DS DS: 5-13 year ye ars • Discuss dermatologic complications- especially dry skin • Discuss sleep apnea • Monitor growth patterns
AAP AAP G GUI UIDEL DELINE INES FOR DS: 5-13 ye year ars • For children on a diet that contains gluten, review for symptoms potentially related to celiac disease • Counsel parents that some sports place children at increased risk of spinal cord injury • Discuss the need for gynaecologic care in the pubescent girl
AA AAP GU GUID IDELIN ELINES ES FO FOR DS DS: 5 5-13 ye year ars • Discuss school placement & developmental intervention • Discuss socialization, family status, financial & guardian relationships • Discuss sense of responsibility • Counsel families regarding the transition from elementary to middle school
AA AAP GU GUID IDELIN ELINES ES FOR FOR DS DS: 13 to to 21 ye year ars • History & physical exam • Annual audiology screening • Annual TFTs & CBC • Annual cardiac evaluation for mitral & aortic valvular disease
AA AAP GU GUID IDELIN ELINES ES FOR FOR DS DS: 13 to to 21 ye year ars • Discuss dermatologic complications • Discuss sleep apnea • Obtain ophthalmologic evaluation every 3 years
AAP AAP GU GUIDELINES DELINES FOR OR DS DS: 13 to 21 yrs yrs : : • Transition of Care • Vocational Training • Sexuality & Socialization
AAP AAP GU GUIDELINES DELINES FOR OR DS DS: 13 to 21 yrs yrs • Contraception • Group Homes & Independent Living • Financial & Guardian Relationships
AAP AAP GU GUIDEL DELINE INES FOR OR DS DS: 13 to to 21 yrs yrs • Psychosexual Development • Menstrual Hygiene • Recurrence risk of DS in female pts
AUDIT
Me Methodology hodology of of au audi dit • Children diagnosed with DS were selected from the SFGH cardiac clinic database & telephone contact information was obtained • A Performa was designed to obtain specific information through telephone interviews with parents based on AAP 2011 guidelines highlighting health supervision services for children with DS
Da Data Co Colle llection ction • 37 patient names & numbers were obtained • From those, 2 were deceased • 10 patients were unreachable • 25 parents agreed to participate in the survey
AGES OF CHILDRE LDREN INCLUD LUDED ED IN THE AUDIT 14 12 12 10 8 6 6 4 4 2 2 1 0 0 BIRTH - 1 MO 1MO - 1 YR 1 YR- 5 YRS 5 YRS- 13 YRS 13 YRS- 21 YRS > 21 YRS NUMBER OF CHILDREN
Ev Evalu aluation tion of da data 30 25 24 24 25 20 16 15 9 10 5 1 1 0 0 Ht & Wt TFTs LAST YR VACCINES UPTO DATE SEIZURES YES NO
Ou Outpa patient tient Cli Clinic ics & As Asse sessmen ssments ts OUTPATIENT CLINICS AND ASSESSMENTS 25 23 22 20 14 15 15 11 10 10 10 5 5 3 0 CARDIAC OPTHALMOLOGY DENTAL YES NO ASSESSMENT DONE
Hear He arin ing As Asse sessmen ssment HEARING TEST EVER DONE 7 11 7 0 YES NO WITHIN THE LAST YEAR PRIOR TO LAST YEAR
Par aren ental tal Co Conce cern rn reg egar ardin ding De Deve velopm lopment ent PARENTAL CONCERNS 25 22 22 21 20 19 15 10 6 5 4 3 3 0 DEVELOPMENT GROSS MOTOR SKILLS FINE MOTOR SKILLS SPEECH YES NO
Ther Th erapies apies Ac Acce cessed ssed THERAPIES ACCESSED 30 25 20 15 10 5 3 1 0 0 PHYSIOTHERAPY OCCUPATIONAL SPEECH ACCESSED NOT ACCESSED
Be Behav haviour ioural al & So Social cial Pr Prob oblems lems 25 20 20 NO 21 15 23 YES 10 5 5 4 2 0 PROBLEMS WITH HYPERACTIVITY BEHAVIORAL PROBLEMS INTERACTION
Typ ype of of Ed Educ ucati tion on TYPE OF EDUCATION 3 10 6 6 PRESCHOOL SPECIAL SCHOOL HOMESCHOOLED NOT IN SCHOOL
Ac Acce cess ss to Gr Gran ants ACCESS TO SPECIAL CHILD/WELFARE GRANT 11 14 YES NO
Ac Acce cess ss to Sup upport port Gr Groups ups ACCESS TO DOWN SYNDROME SUPPORT GROUPS 4 19 6 2 YES NO SOUTH GROUP FAMILY NETWORK
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