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Child and Parent-Reported Outcomes in Children Historically Managed as Nonsyndromic Pierre Robin Sequence: Feeding,
Bruno Matos Santos1, Alexis Poirier2, Hassan Youssef2
1Department of Pediatric Surgery, University Hospital Center of the Canton of Vaud (CHUV), Lausanne, Switzerland.
Insights
Children with nonsyndromic Pierre Robin sequence (nsPRS) report satisfactory quality of life, particularly in feeding, but speech outcomes require attention. Parent concerns highlight ongoing feeding and sleep issues in nsPRS management.
Area of Science:
- Craniofacial Medicine
- Pediatric Quality of Life Research
- Speech-Language Pathology
Background:
- Nonsyndromic Pierre Robin sequence (nsPRS) is a congenital condition affecting facial development, potentially impacting quality of life.
- Comprehensive assessment of long-term outcomes in nsPRS requires evaluating both child and parent perspectives.
Purpose of the Study:
- To evaluate child- and parent-reported quality of life and functional outcomes in adolescents and young adults with nsPRS.
- To identify specific domains of functioning that may require targeted interventions.
Main Methods:
- Retrospective observational cross-sectional study of 12 nsPRS patients (aged 11-20 years) at a tertiary craniofacial center.
- Utilized child-reported CLEFT-Q for feeding, speech, psychological well-being, and social function.
- Employed parent-reported Pediatric Sleep Questionnaire (PSQ) and Behavioral Pediatrics Feeding Assessment Scale (BPFAS).
Main Results:
- Child-reported feeding scores were highest (86.3%), followed by social function (77.0%), psychological well-being (69.9%), and speech (66.6%).
- Obstructive sleep apnea was suspected in 8.3% (PSQ), and habitual snoring reported in 41.7%.
- Problematic feeding behaviors were reported by parents in 50% of families, with discrepancies noted between child and parent feeding reports.
Conclusions:
- Child-reported quality of life in nsPRS is generally satisfactory, with preserved feeding function but lower speech outcomes.
- Parental concerns regarding feeding and residual sleep symptoms underscore the need for continued monitoring.
- Integrated child and parent perspectives are crucial for comprehensive nsPRS management, focusing on speech, feeding, and sleep.
Abstract:
ObjectiveTo assess child- and parent-reported quality of life and functional outcomes in children managed as nonsyndromic Pierre Robin sequence (nsPRS), using child-reported and parent-reported outcome measures.DesignRetrospective observational cross-sectional study.SettingSingle tertiary craniofacial center.ParticipantsChildren aged 11-20 years followed for nsPRS between 2010 and 2021. Twelve child-parent dyads participated. A pre-specified sensitivity analysis was restricted to children meeting strict nsPRS criteria.Outcome Measure(s)Child-reported CLEFT-Q scores for feeding, speech, psychological well-being, and social function; parent-reported Pediatric Sleep Questionnaire (PSQ) scores and Behavioral Pediatrics Feeding Assessment Scale (BPFAS) child-behavior frequency scores calculated from the 24 available child-behavior frequency items.ResultsMean age was 13.5 ± 3.9 years. CLEFT-Q scores showed feeding as the best-preserved child-reported domain (86.3 ± 12.3), followed by social function (77.0 ± 15.0), psychological well-being (69.9 ± 18.3), and speech (66.6 ± 15.9). Suspected obstructive sleep apnea syndrome according to PSQ screening was identified in 1/12 patients (8.3%), although habitual snoring was reported in 5/12 (41.7%). Parent-reported feeding behavior was classified as problematic in 6/12 families (50.0%). Descriptive cross-instrument comparison showed that 4/12 children reported high CLEFT-Q feeding scores despite parent-reported BPFAS concerns. Findings were directionally similar in the strict nsPRS sensitivity subgroup.ConclusionIn our small cohort, child-reported quality of life at follow-up was globally satisfactory, with preserved feeding scores but lower speech scores. Parent-reported feeding concerns and residual sleep-related symptoms support follow-up that includes both child-reported and parent-reported outcomes, with particular attention to speech rehabilitation, feeding behavior, and sleep-related symptoms.
