Au Audit it of He Healt alth Sup uperv ervision ision Ser - - PowerPoint PPT Presentation
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.
Community Paediatrics SWRHA
“When you focu you focus s on so
meone's
disabi isabili lity yo ty you' u'll ll
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
n to to love love yo yourself urself unconditionally.”
Yvonne Pi Pierre, Th The Day My My Soul Cr Cried: A M A Memoir
To ap apprais ise health th superv rvis isio ion serv rvic ices es availa lable ble within in SWRHA HA for
the lon
term rm ma manageme ment nt
ch children en with Do Down Syndrome me (D (DS)
following
is designed to help the paediatrician provide care for children with Down syndrome & their families
is
by the issues that need to be addressed in various age groups & throughout childhood
Several areas require
assessment throughout childhood and should be reviewed periodically at developmentally appropriate ages
Month
Month
Year
Year
Years
Years
Years
Years
Years
Older
support available to family
& medical support programs
Income benefits
& abuse prevention with special consideration
developmental skills
& exercise to maintain appropriate weight
Feeding Squint & cataracts Hearing loss Heart defects Duodenal atresia Leukemia Constipation Respiratory Tract infection Hypothyroidism
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
– evaluate for restricted diet, limited fluid intake
GI malformations & Hirschsprung disease
reflux- diagnosed & managed clinically
hypothyroidism- Obtain TSH & T4
exam & lab studies
risk
pneumococcal vaccine
screen : rpt at 6 , 12 months then annually
the 1st 6 mths – discuss symptoms
sleep apnoea
each visit- discuss the importance
maintaining the C- spine during certain procedures
weight & follow weight- for- height trends
the first 6 mths of life evaluate for squint & cataracts
infants with cardiac defects
CBC for signs
iron deficiency anemia
for signs
neurologic dysfunction- seizures
History & Physical exam
risk
OM & hearing Loss
audiogram every 6 months until 3 years if tympanic membranes are not visible
x-rays between 3-5 years
age to evaluate atlanto-axial instability if symptomatic
Thyroid &
screening
symptoms
sleep apnea
early intervention : OT , ST, PT, Preschool, school placement & performance
: behavioural issues, discipline ,sibling adjustment, socialization, recreation, diet & physical activity
& physical exam
audiology and
screening
TFTs
dermatologic complications- especially dry skin
sleep apnea
growth patterns
children
a diet that contains gluten, review for symptoms potentially related to celiac disease
parents that some sports place children at increased risk
spinal cord injury
the need for gynaecologic care in the pubescent girl
school placement & developmental intervention
socialization, family status, financial & guardian relationships
sense
responsibility
families regarding the transition from elementary to middle school
& physical exam
audiology screening
TFTs & CBC
cardiac evaluation for mitral & aortic valvular disease
dermatologic complications
sleep apnea
evaluation every 3 years
Care
Training
& Socialization
Homes & Independent Living
& Guardian Relationships
Development
Hygiene
risk
DS in female pts
diagnosed with DS were selected from the SFGH cardiac clinic database & telephone contact information was
Performa was designed to
specific information through telephone interviews with parents based
AAP 2011 guidelines highlighting health supervision services for children with DS
patient names & numbers were
those, 2 were deceased
patients were unreachable
parents agreed to participate in the survey
2 12 6 4 1 2 4 6 8 10 12 14 BIRTH - 1 MO 1MO - 1 YR 1 YR- 5 YRS 5 YRS- 13 YRS 13 YRS- 21 YRS > 21 YRS
AGES OF CHILDRE LDREN INCLUD LUDED ED IN THE AUDIT
NUMBER OF CHILDREN
25 16 24 1 9 1 24 5 10 15 20 25 30
Ht & Wt TFTs LAST YR VACCINES UPTO DATE SEIZURES YES NO
5 10 15 20 25
CARDIAC OPTHALMOLOGY DENTAL
14 10 3 11 15 22 23 10 5
OUTPATIENT CLINICS AND ASSESSMENTS
YES NO ASSESSMENT DONE
11 7 7
HEARING TEST EVER DONE YES NO WITHIN THE LAST YEAR PRIOR TO LAST YEAR
4 3 3 6 21 22 22 19
5 10 15 20 25
DEVELOPMENT GROSS MOTOR SKILLS FINE MOTOR SKILLS SPEECH
PARENTAL CONCERNS
YES NO
1 3
5 10 15 20 25 30
PHYSIOTHERAPY OCCUPATIONAL SPEECH
THERAPIES ACCESSED
ACCESSED NOT ACCESSED
5 10 15 20 25
PROBLEMS WITH INTERACTION HYPERACTIVITY BEHAVIORAL PROBLEMS
2 4 5 23 21 20
NO YES
3 6 6 10
TYPE OF EDUCATION
PRESCHOOL SPECIAL SCHOOL HOMESCHOOLED NOT IN SCHOOL
11 14
ACCESS TO SPECIAL CHILD/WELFARE GRANT
YES NO
19 2 4 6
ACCESS TO DOWN SYNDROME SUPPORT GROUPS YES NO SOUTH GROUP FAMILY NETWORK
Laboratory Investigations
regarding long term follow up for Ophthalmology, ENT, Dental.
range
developmentally appropriate hearing tests
perception
their child’s developmental skills
to basic therapies like Speech and OT
specialised training and counselling with respect to transitional care, sexuality, choice
vocation and behavioural issues
to Inclusive Main Stream Education
to Psych-Educational assessments
to Social Welfare supports
to Family Support Groups
revised standardised checklist in Clinics for long term and holistic health supervision for children with DS.
that priority be given for TFTs &
investigations.
with
specialties such as ENT, Ophthalmology and Dental regarding guidelines for long term follow up
Advocacy for developmentally appropriate hearing tests within the public service
studies should be done to assess parents’ perception
DS and Quality
Life achievable.
Advocacy for support services such as Speech, Occupational & Early Intervention Therapy in the public system
for further training
counselling as pertains to transitional care, sexuality, choice
vocation & behavioural issues
to Liaise with Student Support Services regarding Mainstream Inclusion with appropriate supports.
to advocate for improved accessibility for Psychological Education Assessments
advocacy regarding access to social welfare provisions
for a revised Special Child Grant assessment form.
to encourage families to join family support groups.