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Questionnaire accurately measured QOL among pediatric liver transplant recipients

A novel Pediatric Liver Transplantation Quality of Life questionnaire was valid and accurate in measuring quality of life among child and adolescent liver transplant recipients, according to new study data.

Researchers developed the Pediatric Liver Transplantation Quality of Life (PeLTQL) questionnaire based on feedback from child and parent interviews, literature reviews and three focus groups in Canada and the United Kingdom.

“The ultimate goal … was to develop a tool that could be used to measure quality of life that is specific to pediatric patients who have had a liver transplant,” Anthony Otley, MD, MSc, FRCPC, head of the division of gastroenterology and nutrition, IWK Health Centre, Canada, and Vicky Ng, MD, of the department of pediatrics, University of Toronto, told Healio.com/Hepatology. “Our study went through a rigorous development process. This allowed us to discern what patients who have had a liver transplant were thinking about and how these issues affected their health-related quality of life.”

Anthony Otley

From 300 original items, researchers developed a 26-item PeLTQL that 133 patients completed. Patients also completed the PedsQL generic (n=131) and PedsQL transplant module (n=131) questionnaires.

Vicky Ng

PeLTQL scores differed based on hospitalizations within the previous 12 months (P=.05), but PedsQL transplant module (P=.8) and PedsQL generic (P=.35) scores did not. Various models tested clinical and demographic variables that were hypothesized to be aligned with health-related quality of life. A final general linear model (P<.001) found that PeLTQL had been predicted by Screen for Child Anxiety Related Disorders (SCARED) score (P<.001); Child Depression Inventory Short Form score (P<.001); Liver Transplant Disability Scale score (P=.001) and post-transplant lymphoproliferative disease (P=.064).

Forty-six percent of patients who completed a validation process were male. Internal consistency (Cronbach alpha, 0.86) and test-retest reliability (intraclass correlation coefficient, 0.85) were excellent, according to researchers. Correlations existed between mean PeLTQL scores and PedsQL generic, PedsQL transplant, and SCARED scores (P<.001 for all).

“This measure will be useful clinically as it is a nonstigmatizing tool that can be quickly and routinely administered to patients during clinic visits,” Otley said. “This can give the physician an unbiased means to determine how patients are coping in terms of anxiety, depression, and general lifestyle.”

Disclosure: The researchers report no relevant financial disclosures.