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Prioritizing Parental Worry Associated with Duchenne Muscular Dystrophy Using Best‐Worst Scaling
Author(s) -
Peay Holly Landrum,
Hollin I. L.,
Bridges J. F. P.
Publication year - 2016
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-015-9872-2
Subject(s) - worry , ambulatory , medicine , psychological intervention , duchenne muscular dystrophy , feeling , ambulatory care , clinical psychology , pediatrics , physical therapy , psychology , psychiatry , health care , anxiety , social psychology , economics , economic growth
Duchenne muscular dystrophy (DMD) is a progressive, fatal pediatric disorder with significant burden on parents. Assessing disease impact can inform clinical interventions. Best‐worst scaling (BWS) was used to elicit parental priorities among 16 short‐term, DMD‐related worries identified through community engagement. Respondents viewed 16 subsets of worries, identified using a balanced, incomplete block design, and identified the most and least worrying items. Priorities were assessed using best‐worst scores (spanning +1 to −1) representing the relative number of times items were endorsed as most and least worrying. Independent‐sample t‐tests compared prioritization of parents with ambulatory and non‐ambulatory children. Participants ( n = 119) most prioritized worries about weakness progression ( BW score = 0.64) and getting the right care over time ( BW = 0.25). Compared to parents of non‐ambulatory children, parents of ambulatory children more highly prioritized missing treatments ( BW = 0.31 vs. 0.13, p < 0.001) and being a good enough parent ( BW = 0.06 vs. −0.08, p = 0.010), and less prioritized child feeling like a burden ( BW = − 0.24 vs. −0.07, p < 0.001). Regardless of child's disease stage, caregiver interventions should address the emotional impact of caring for a child with a progressive, fatal disease. We demonstrate an accessible, clinically‐relevant approach to prioritize disease impact using BWS, which offers an alternative to the use of traditional rating/ranking scales.