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Erschienen in: Quality of Life Research 5/2017

03.11.2016

Can in-the-moment diary methods measure health-related quality of life in Duchenne muscular dystrophy?

verfasst von: Paula Bray, Anita C. Bundy, Monique M. Ryan, Kathryn N. North

Erschienen in: Quality of Life Research | Ausgabe 5/2017

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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.
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Metadaten
Titel
Can in-the-moment diary methods measure health-related quality of life in Duchenne muscular dystrophy?
verfasst von
Paula Bray
Anita C. Bundy
Monique M. Ryan
Kathryn N. North
Publikationsdatum
03.11.2016
Verlag
Springer International Publishing
Erschienen in
Quality of Life Research / Ausgabe 5/2017
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1442-z

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