Cross-sectional survey evaluates psychosocial outcomes in caregivers and quality of life in children with Pierre Robin Sequence, highlighting the need for support.
Objective This study assessed psychosocial outcomes in caregivers and quality of life (QoL) in children with Pierre Robin Sequence treated with the Stanford Orthodontic Airway Plate (OAP). Design A cross-sectional survey was completed by caregivers of 30 OAP-treated children (age at survey: 1.5 ± 1.1 years). Main Outcome Measure(s): Eight open-ended questions and one-sample t tests for: Connor-Davidson Resilience Scale-10 (CD-RISC-10); Kessler Psychological Distress Scale-6 (K6); Perceived Stress Scale (PSS); and Pediatric QoL Inventory (PedsQL). Results The mean CD-RISC-10 scores were similar to community samples. The K6 scores were significantly higher (Cohen d = 1.01), and PSS scores were lower (Cohen d = 0.82) than national averages. The mean PedsQL score was high (89.3 ± 8.4). While 78% of caregivers found OAP demanding, 68% indicated a preference for pursuing OAP earlier. Conclusions Caregivers reported low stress and high child QoL along with moderate distress, suggestive of the need for ongoing psychosocial supports for caregivers.
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Wagner et al. (2026) studied this question.
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