Feasibility of conducting a prospective cohort study in pediatric surgery: introducing the Caregiver Quality of Life of pediatric patients referred for feeding tube insertion (CARE) study

Introduction High-quality prospective cohort studies are needed to answer research questions focused on prognosis. To determine the feasibility of conducting this type of research, a prospective cohort study focused on investigating health-related quality of life (HRQoL) of caregivers of children who require a gastrostomy (G) tube at the McMaster Children's Hospital was piloted from November 2009 to May 2011. Methods Recruitment began after research ethics board approval. Feasibility data were collected on all caregivers of patients assessed for G tube placement by a pediatric surgeon including recruitment status, protocol compliance, and HRQoL. Data were collected at 1 month and 2 weeks before surgery and 2 weeks and 3, 6, 9, and 12 months after surgery. Health-related quality of life measures included the Short Form 36v2, the Caregiver Strain Index, and the Parent Experience of Childhood Illness. Results A total of 117 G procedures were conducted, and 39 caregivers met eligibility criteria. Thirty-one caregivers were enrolled (79.5% recruitment rate), 8 parents were not interested, and 26 were missed. Protocol adherence to the follow-up schedule is high (91.3%). Conclusion Conducting high-level research with long-term follow-up in pediatric surgery is challenging. Factors including low prevalence of patients and competing priorities for busy clinicians indicate that multicenter collaboration is essential to research success in this field.