Paula Bray1,2, Anita C Bundy3, Monique M Ryan4,5, Kathryn N North5. 1. Occupational Therapy Department, The Children's Hospital at Westmead, Locked Bag 4001, Westmead, Sydney, NSW, 2145, Australia. Paula.bray@health.nsw.gov.au. 2. Discipline of Occupational Therapy, Faculty of Health Sciences, The University of Sydney, Sydney, NSW, Australia. Paula.bray@health.nsw.gov.au. 3. Discipline of Occupational Therapy, Faculty of Health Sciences, The University of Sydney, Sydney, NSW, Australia. 4. Children's Neuroscience Centre, Royal Children's Hospital, Melbourne, VIC, Australia. 5. Murdoch Children's Research Institute, Melbourne, VIC, Australia.
Abstract
AIM: To investigate whether in-the-moment diary reports of daily experience, taken collectively, are a valid representation of health-related quality of life (HRQL). METHODS: A total of 35 boys with Duchenne muscular dystrophy (DMD) were recruited through four neuromuscular care providers across Australia. Participants completed the PedsQL™ Generic Core scales and one week of experience-sampling diary reporting on a personal digital assistant. Rasch analysis was undertaken on the diary data to derive a single valid measure score. The resulting measure score for each participant was correlated with the summary score from the PedsQL™ Generic Core scales to examine whether daily experience was representative of HRQL. RESULTS: The daily diary method showed good metric properties, with adequate goodness of fit for data from items and participants suggesting unidimensionality of the construct: quality of everyday experience. The correlation of the daily diary measure score with overall PedsQL™ summary score showed moderate agreement (r = .60, p = 0.001). CONCLUSIONS: The benefits of measuring daily quality of life include detailed descriptions of day-to-day experiences of children without the need for retrospective recall. Diary methods on an electronic platform or software application for personal devices may be a useful tool to understand HRQL as the repeated measures data provide a detailed experience directly from the child and the platform makes data completion highly motivating.
AIM: To investigate whether in-the-moment diary reports of daily experience, taken collectively, are a valid representation of health-related quality of life (HRQL). METHODS: A total of 35 boys with Duchenne muscular dystrophy (DMD) were recruited through four neuromuscular care providers across Australia. Participants completed the PedsQL™ Generic Core scales and one week of experience-sampling diary reporting on a personal digital assistant. Rasch analysis was undertaken on the diary data to derive a single valid measure score. The resulting measure score for each participant was correlated with the summary score from the PedsQL™ Generic Core scales to examine whether daily experience was representative of HRQL. RESULTS: The daily diary method showed good metric properties, with adequate goodness of fit for data from items and participants suggesting unidimensionality of the construct: quality of everyday experience. The correlation of the daily diary measure score with overall PedsQL™ summary score showed moderate agreement (r = .60, p = 0.001). CONCLUSIONS: The benefits of measuring daily quality of life include detailed descriptions of day-to-day experiences of children without the need for retrospective recall. Diary methods on an electronic platform or software application for personal devices may be a useful tool to understand HRQL as the repeated measures data provide a detailed experience directly from the child and the platform makes data completion highly motivating.
Authors: James W Varni; Tasha M Burwinkle; Sandra A Sherman; Kanela Hanna; Susan J Berrin; Vanessa L Malcarne; Henry G Chambers Journal: Dev Med Child Neurol Date: 2005-09 Impact factor: 5.449
Authors: Iris H L Maes; Philippe A E G Delespaul; Madelon L Peters; Mathew P White; Yvette van Horn; Koen Schruers; Lucien Anteunis; Manuela Joore Journal: Value Health Date: 2015-01 Impact factor: 5.725