The siblings of patients with Duchenne muscular dystrophy (DMD) were more likely to concentrate on DMD-linked desires and aspirations associated with work, intimacy, self-image, community, family, and living with discomfort than a cohort of peers of similar ages, a recent study suggests.

The results also showed that the siblings of patients with DMD were more focused on DMD-related concerns like community, family, intimacy, and work as they aged compared to their peers. Yet, they were not as concentrated on pragmatics, independence, bettering their problem-solving abilities, or temperament, reported Carolyn E. Schwartz, of DeltaQuest Foundation Inc, in Concord, Massachusetts, and colleagues.

The findings were published online in the Journal of Patient-Reported Outcomes.


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The effect of DMD on the life of a person who has a sibling with the disease is likely due to the patient’s progressive loss of independence. However, the effect of the situation on the aspirations of the patient’s siblings has not been investigated so far.

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Here, a team of researchers led by Bruce D. Rapkin, PhD, of the Albert Einstein College of Medicine in the Bronx, New York, conducted a cross-sectional case-control study to investigate aspiration differences between brothers and sisters of DMD patients and other people.

The team conducted a web-based survey between October and December 2020 to measure the aspirations of the participants. The survey included questions about wishes, goals, and the definition of quality of life. A total of 349 participants who had a sibling with DMD, and 619 controls completed the survey. 

People who did not have a sibling affected by DMD, on the other hand, were more focused on goals related to growth, purpose, and reflection.

“Future research might build on this study by evaluating differences in achievement of such aspirations over time,” the authors concluded. 

Reference

Schwartz CE, Biletch E, Stuart RBB, Rapkin BD. Siblings’ life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study. J Patient Rep Outcomes. 2022;10;6(1):96. doi:10.1186/s41687-022-00501-7