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

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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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Acknowledgements

The authors are grateful to the Douglas and Lola Douglas Scholarship, Montrose Access, The Parent Project and United Way Queensland for their kind support. We also wish to thank all the parents and children who participated in this study.

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Authors and Affiliations

  1. Occupational Therapy Department, The Children’s Hospital at Westmead, Locked Bag 4001, Westmead, Sydney, NSW, 2145, Australia

    Paula Bray

  2. Discipline of Occupational Therapy, Faculty of Health Sciences, The University of Sydney, Sydney, NSW, Australia

    Paula Bray & Anita C. Bundy

  3. Children’s Neuroscience Centre, Royal Children’s Hospital, Melbourne, VIC, Australia

    Monique M. Ryan

  4. Murdoch Children’s Research Institute, Melbourne, VIC, Australia

    Monique M. Ryan & Kathryn N. North

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  1. Paula Bray
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Correspondence to Paula Bray.

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All authors read and approved the final version of the manuscript. There are no competing interests. This material has not been submitted to any other sources.

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Bray, P., Bundy, A.C., Ryan, M.M. et al. Can in-the-moment diary methods measure health-related quality of life in Duchenne muscular dystrophy?. Qual Life Res 26, 1145–1152 (2017). https://doi.org/10.1007/s11136-016-1442-z

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