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Oral Presentation - 30
The impact of OA/TOF associated feeding difficulties on parent well-being
Alexandra Stewart 1, Roganie Govender 2, Christina Smith 3, Simon Eaton 4, Paolo De Coppi 4, Jo Wray 1
1 Great Ormond Street Hospital for Children, London, UK
2 University College London, UK
3 Department of Language and Cognition, University College London, UK
4 Institute of Child Health, University College London, UK
Background: Approximately 25% of children with OA/TOF experience feeding difficulties. However, their impact on parent QOL has received limited attention.
Aim: To investigate the impact of OA/TOF-associated feeding difficulties on parental anxiety, trauma and QOL.
Method: A cross-sectional study was conducted using online and postal questionnaires. Parents of children with OA/TOF aged 6 months-11 years were recruited from a support group and specialist hospital. Demographic and medical information were collected from parent report. Validated measures assessed feeding (Montreal children’s hospital feeding scale (MCHFS)), feeding-related QOL (feeding-swallowing impact survey (FSIS)), parent anxiety (GAD-7), post-traumatic stress disorder (PTSD-8) and personal resilience (brief resilience scale). Satisfaction with healthcare was evaluated using a parent-reported experience measure. Multiple linear regression models were developed to determine predictor variables for feeding-related QOL, parent anxiety and PTSD. Significance was determined as p=<.05.
Results: 175 parents (162, 94.2% mothers) of children with a (median age of 3 years (IQR 1 year) participated. 47 (27.2%) had moderate/severe feeding difficulties. 129 (74.1%) participants scored >95th centile on the FSIS. 60 (34.7%) parents presented with moderate/severe anxiety. 64 (38.1%) parents met the diagnostic threshold for PTSD.
Parent anxiety was significantly associated with prematurity, dyspnoea, severe feeding difficulty, parent age <30, lower personal resilience, and lower satisfaction with healthcare support. Parent PTSD was associated with dyspnoea, moderate or severe feeding difficulties, parent age under 30 years or 30-39 years and lower personal resilience. Lower feeding-related QOL was associated with younger child age, dyspnoea, mild, moderate or severe feeding difficulties, parent anxiety or PTSD and lower satisfaction with healthcare support.
Conclusions: OA/TOF related feeding difficulties impact on parental well-being. Parent anxiety and trauma should be explicitly assessed and managed to optimise child and family outcomes.