Vicky Ng1, David Nicholas2, Anil Dhawan3, Nada Yazigi4, Looi Ee5, Michael Stormon6, Susan Gilmour7, Rick Schreiber8, Rachel Taylor9, Anthony Otley10. 1. Sick Kids Transplant Center, The Hospital for Sick Children and The University of Toronto, Toronto, Ontario, Canada. 2. Social Work, University of Calgary, Calgary, Alberta, Canada. 3. Pediatric Liver Center, Kings College London and King's College Hospital, London, United Kingdom. 4. Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH. 5. Pediatrics, Royal Children's Hospital, Brisbane, Queensland, Australia. 6. Pediatrics, The Children's Hospital at Westmead, Sydney, New South Wales, Australia. 7. Pediatrics, Stollery Children's Hospital, Edmonton, Alberta, Canada. 8. Pediatrics, British Columbia Children's Hospital, Vancouver, British Columbia, Canada. 9. Cancer Clinical Trials Unit, University College London Hospital, London, United Kingdom. 10. Pediatrics, Dalhousie University, IWK Health Centre, Halifax, Nova Scotia, Canada. Electronic address: arotley@dal.ca.
Abstract
OBJECTIVES: To develop and validate a Pediatric Liver Transplantation Quality of Life (PeLTQL) questionnaire via an international multicenter collaboration. STUDY DESIGN: Item generation with 146 child and/or parent interviews (92 pediatric liver transplantation [LT] recipients) and 3 focus groups generated over 300 items. An item reduction questionnaire with 76 questions was completed by 320 participants (212 pediatric LT recipients). RESULTS: Frequency-importance product ranking, questionnaire formatting, and pre-testing resulted in a 26-item PeLTQL questionnaire. Factor analysis identified 3 domains: future health, coping and adjustment, and social-emotional. The validation phase was completed by 133 (46% male) LT recipients (aged 8-18 years). Internal consistency (Cronbach α = 0.86) and test-retest reliability (intraclass correlation coefficient = 0.85) were excellent. Mean patient PeLTQL score was 69.54 ± 13.06. Construct validity with validated tools identified significant correlations between mean PeLTQL scores and (1) Pediatric Quality of Life Inventory generic (r = 0.64, P < .001); (2) Pediatric Quality of Life Inventory transplant (r = 0.73, P < .001); and (3) Screen for Child Anxiety Related Disorders (r = -0.57, P < .001) scores. Only 17/3458 (0.5%) questions were left blank. A Flesch-Kincaid grade level of 5.4 was calculated as a measure of the PeLTQL readability statistic. CONCLUSIONS: The PeLTQL is a valid and reliable novel 26-item disease-specific health related quality of life instrument for LT recipients aged 8-18 years. Low PeLTQL scores can identify patients at risk for childhood anxiety and depression. The tool is now ready for broad use in both clinical practice and clinical interventional trials.
OBJECTIVES: To develop and validate a Pediatric Liver Transplantation Quality of Life (PeLTQL) questionnaire via an international multicenter collaboration. STUDY DESIGN: Item generation with 146 child and/or parent interviews (92 pediatric liver transplantation [LT] recipients) and 3 focus groups generated over 300 items. An item reduction questionnaire with 76 questions was completed by 320 participants (212 pediatric LT recipients). RESULTS: Frequency-importance product ranking, questionnaire formatting, and pre-testing resulted in a 26-item PeLTQL questionnaire. Factor analysis identified 3 domains: future health, coping and adjustment, and social-emotional. The validation phase was completed by 133 (46% male) LT recipients (aged 8-18 years). Internal consistency (Cronbach α = 0.86) and test-retest reliability (intraclass correlation coefficient = 0.85) were excellent. Mean patient PeLTQL score was 69.54 ± 13.06. Construct validity with validated tools identified significant correlations between mean PeLTQL scores and (1) Pediatric Quality of Life Inventory generic (r = 0.64, P < .001); (2) Pediatric Quality of Life Inventory transplant (r = 0.73, P < .001); and (3) Screen for Child Anxiety Related Disorders (r = -0.57, P < .001) scores. Only 17/3458 (0.5%) questions were left blank. A Flesch-Kincaid grade level of 5.4 was calculated as a measure of the PeLTQL readability statistic. CONCLUSIONS: The PeLTQL is a valid and reliable novel 26-item disease-specific health related quality of life instrument for LT recipients aged 8-18 years. Low PeLTQL scores can identify patients at risk for childhood anxiety and depression. The tool is now ready for broad use in both clinical practice and clinical interventional trials.
Authors: Stacey V Konidis; Alexander Hrycko; Scott Nightingale; Eberhard Renner; Leslie Lilly; George Therapondos; Ann Fu; Yaron Avitzur; Vicky Lee Ng Journal: Paediatr Child Health Date: 2015-05 Impact factor: 2.253
Authors: Saeed Mohammad; Shikha S Sundaram; Kristen Mason; Steven Lobritto; Mercedes Martinez; Yumirle P Turmelle; John Bucuvalas; Sandy Feng; Estella M Alonso Journal: Liver Transpl Date: 2021-05 Impact factor: 5.799