Health-Related Quality of Life in Pediatric Patients with Syndromic Autism and their Caregivers.
Corneliu Bolbocean, Fabiola N Andújar, Maria McCormack and 2 others
PMID 33937973WHAT IT FOUND
Caregivers reported children with syndromic autism had low quality of life, especially physical functioning.
Rett syndrome scored lowest. Families rated emotional well-being as the area most strained. Therapists should ask about mobility, pain, energy, self-care, school participation, and family stress.
Key findings
01Children in the combined syndromic autism group had the lowest total quality of life score compared with healthy controls and several other chronic childhood illnesses, at 42.80.
02Rett syndrome had the lowest total score among the genetic disorders, at 38.03, and its greatest impairment was physical functioning, at 19.64.
03Caregivers reported emotional well-being as the family quality of life domain with the greatest toll.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The diagnoses were based on caregiver report and could not be verified by the researchers. The survey was anonymous and did not collect age or socio-demographic information, so those factors could not be analysed. Families were recruited through advocacy organisations and self-selected interest, so they may not represent all children with these conditions. The SYNGAP1 group had only 30 participants and was removed from later direct comparisons with Rett and Phelan-McDermid syndrome. The study covered only three genetic disorders that predispose to syndromic autism, and the authors say it is unclear whether they represent all syndromic autism. It measured reported quality of life without a follow-up or intervention, so it cannot show that any treatment improves quality of life.
Declared interests
The funding statement names the Robbins Foundation, Mr. Charif Souki, and the Joan and Stanford Endowed Chair. The supplied text does not provide author conflict-of-interest disclosures.
The easy way to misread this
Do not read the low quality of life scores as proof that physical, language or occupational therapy improves them. The study did not assign or test a treatment; it surveyed caregivers and compared groups by diagnosis.