BACKGROUND: Health-related quality of life is an important outcome. Self-report is the gold standard, but in the paediatric setting we often rely on proxy reporting. Our understanding of the differences between self- and proxy reports and the factors that influence them is limited. These differences can impact on treatment choices and the patient-doctor relationship. OBJECTIVE: To evaluate differences between children's, parents' and doctors' perceptions of health states and health-related quality of life in children with chronic illness and explore factors which explain these differences. METHODS: Consecutive families attending eligible clinics at a tertiary paediatric centre were invited to complete the Health Utilities Index (HUI) 23 questionnaire. Percentage agreement and kappas were calculated as a measure of the agreement between pairs. Chi-squared tests or Fisher's exact test, if appropriate, were performed to determine if there was an association between level of agreement and participant variables. RESULTS: Data were collected for 130 parent-doctor pairs, 59 child-parent pairs and 59 child-doctor pairs. Overall health-related quality of life scores did not differ between responders, but there was poorer agreement for subjective domains. Doctor-child agreement was lower than parent-child agreement. Children with a diagnosis of cerebral palsy or chronic neurological condition were more likely to have lower inter-rater agreement for both subjective and objective domains. On the HUI2, agreement was lower for parent-child pairs when the father was the respondent. For child-doctor pairs, an increased frequency of patient-doctor visits and doctors' seniority were predictors of poorer agreement on the HUI3 and HUI2 respectively. CONCLUSIONS: We identified factors associated with level of agreement for self- and proxy reporting on the HUI23. Parent-child agreement was higher than doctor-child agreement. Patients with significant pain or emotional distress and patients with a diagnosis of severe cerebral palsy or chronic neurological conditions were more susceptible to under-reporting of subjective aspects of well-being by doctors and parents and may benefit from formal assessment of health-related quality of life in the clinical setting.
BACKGROUND: Health-related quality of life is an important outcome. Self-report is the gold standard, but in the paediatric setting we often rely on proxy reporting. Our understanding of the differences between self- and proxy reports and the factors that influence them is limited. These differences can impact on treatment choices and the patient-doctor relationship. OBJECTIVE: To evaluate differences between children's, parents' and doctors' perceptions of health states and health-related quality of life in children with chronic illness and explore factors which explain these differences. METHODS: Consecutive families attending eligible clinics at a tertiary paediatric centre were invited to complete the Health Utilities Index (HUI) 23 questionnaire. Percentage agreement and kappas were calculated as a measure of the agreement between pairs. Chi-squared tests or Fisher's exact test, if appropriate, were performed to determine if there was an association between level of agreement and participant variables. RESULTS: Data were collected for 130 parent-doctor pairs, 59 child-parent pairs and 59 child-doctor pairs. Overall health-related quality of life scores did not differ between responders, but there was poorer agreement for subjective domains. Doctor-child agreement was lower than parent-child agreement. Children with a diagnosis of cerebral palsy or chronic neurological condition were more likely to have lower inter-rater agreement for both subjective and objective domains. On the HUI2, agreement was lower for parent-child pairs when the father was the respondent. For child-doctor pairs, an increased frequency of patient-doctor visits and doctors' seniority were predictors of poorer agreement on the HUI3 and HUI2 respectively. CONCLUSIONS: We identified factors associated with level of agreement for self- and proxy reporting on the HUI23. Parent-child agreement was higher than doctor-child agreement. Patients with significant pain or emotional distress and patients with a diagnosis of severe cerebral palsy or chronic neurological conditions were more susceptible to under-reporting of subjective aspects of well-being by doctors and parents and may benefit from formal assessment of health-related quality of life in the clinical setting.
Authors: Erin M Rodríguez; Harsha Kumar; Sarah Kate Bearman; Ashlee M von Buttlar; Lisa Sánchez-Johnsen Journal: Fam Syst Health Date: 2017-11-27 Impact factor: 1.950
Authors: Conor M Jones; Justin N Baker; Rachel M Keesey; Ruth J Eliason; Jennifer Q Lanctot; Jennifer L Clegg; Belinda N Mandrell; Kirsten K Ness; Kevin R Krull; Deokumar Srivastava; Christopher B Forrest; Melissa M Hudson; Leslie L Robison; I-Chan Huang Journal: Qual Life Res Date: 2018-04-18 Impact factor: 4.147
Authors: Richard G McGee; Edward Y B Zhang; Jennifer J G Tan; Aiden C K Cheung; Matthew P Garvey Journal: BMC Endocr Disord Date: 2022-07-15 Impact factor: 3.263
Authors: Jill C Handisides; Danielle Hollenbeck-Pringle; Karen Uzark; Felicia L Trachtenberg; Victoria L Pemberton; Teresa W Atz; Timothy J Bradley; Elizabeth Cappella; Sylvia De Nobele; Georgeann Keh-Teng Groh; Michelle S Hamstra; Rosalind Korsin; Jami C Levine; Bergen Lindauer; Aimee Liou; Meghan K Mac Neal; Larry W Markham; Tonia Morrison; Kathleen A Mussatto; Aaron K Olson; Mary Ella M Pierpont; Reed E Pyeritz; Elizabeth A Radojewski; Mary J Roman; Mingfen Xu; Ronald V Lacro Journal: J Pediatr Date: 2018-09-27 Impact factor: 4.406