Can in-the-moment diary methods measure health-related quality of life in Duchenne muscular dystrophy?
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 Aust...
| Publicado en: | Quality of Life Research Vol. 26; no. 5; pp. 1145 - 1153 |
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| Autores principales: | , , , |
| Formato: | Journal Article |
| Publicado: |
Springer Nature
May2017
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=122289199&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 122289199 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09629343 GPQ jtl: Quality of Life Research issn: 09629343 maglogo: N pubinfo: dt: May2017 vid: 26 iid: 5 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 122289199 122289199 143929148 NLM27812849 10.1007/s11136-016-1442-z NLM27812849 122289199 ppf: 1145 ppct: 8 formats: fmt: @attributes: type: P tig: atl: Can in-the-moment diary methods measure health-related quality of life in Duchenne muscular dystrophy? aug: au: Bray, Paula Bundy, Anita C. Ryan, Monique M. North, Kathryn N. affil: Occupational Therapy Department, The Children's Hospital at Westmead, Locked Bag 4001, Westmead, Sydney, NSW 2145, Australia sug: subj: Sickness Impact Profile Muscular Dystrophy, Duchenne Psychosocial Factors Medical Records Retrospective Design Adolescence Male Child Scales Adolescent: 13-18 years Child: 6-12 years Male ab: 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. pubtype: Academic Journal doctype: Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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