Development of a Quality of Life Instrument for Pediatric Gastroesophageal Reflux Disease: Qualitative Interviews

Objectives: Antireflux procedures (ARP) are commonly performed in children and there is no disease-specific quality of life (QOL) instrument for gastroesophageal reflux (GERD) in children. The aim of this study was to identify the relevant domains for developing such an instrument. These domains will be validated in a future study. Patients and Methods: Parents of 19 patients (age 2 months-18 years) clinically diagnosed with GERD were recruited to complete semistructured interviews. Seven patients with adequate verbal skills were also interviewed. Patients were treated medically (13 patients) or with an ARP (6 patients). The interviews were analyzed using grounded theory. Results: GERD affects QOL through the following domains: symptom severity, feeding quality, sleep quality, hygiene, growth and development, social quality, self-image, coping skills, family QOL, health care usage, and impact of ARP. A greater-than-expected effect on parental QOL and remarkable use of accommodation were identified. Conclusions: A pediatric GERD-specific instrument cannot rely on QOL perception alone, but must address broadly the impact of the disease and the effect of coping skills on the child and his or her family in their activities of daily living and interaction with society. We have identified reproducible domains that will serve as the foundation for such an instrument.