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

Department of Surgery, McMaster Pediatric Surgery Research Collaborative, McMaster University, Hamilton, Ontario, Canada.
Journal of Pediatric Surgery (Impact Factor: 1.39). 05/2012; 47(5):999-1004. DOI: 10.1016/j.jpedsurg.2012.01.058
Source: PubMed


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.
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.
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%).
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.

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    ABSTRACT: Introduction: While pediatric surgeons consider gastrostomy to be routine treatment for children with feeding difficulties, the impact on the family is not fully understood. This study focuses on Quality of Life (QoL) of parents of children who require a gastrostomy tube. Methods: A prospective repeated measures cohort study was conducted between November 2009 and March 2012. Demographic, surgical, and QoL data were collected at Baseline, 2 weeks, 3, 6, 9, and 12 months after surgery. At each time-point parents completed three QoL measures: Short Form 36v2 (SF-36), Caregiver Strain Index (CSI), and Parent Experience of Childhood Illness (PECI). Results: A total of 31 caregivers were recruited with a mean age of 32.6 years (SD=7.0). Overall, a 38% increased risk of depression was seen in the SF-36 when compared to population norms, and a moderate effect was seen in mental health at 12 months (ES=0.56). The CSI demonstrated a decrease in caregiver burden (8.72 to 7.05, p=0.007, 95% CI (0.57-3.18)), while the PECI revealed a decrease in frequency of feelings of guilt, worry, sorrow, anger, and long term uncertainty over 12 months. Conclusion: Gastrostomy not only improves the child's physical health, but also improves the mental health of the child's caregivers, especially at (or after) one year.
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