In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: Siblings’ life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study
A paper from Schwartz et al on the impact of having a brother with Duchenne on life aspirations in the journal of patient reported outcomes. Important topic, as siblings are often overlooked. See also the World Duchenne Awareness Day 2022 video. Doi 10.1186/s41687-022-00501-7
Duchenne patients are generally diagnosed between age 3 and 5. They experience chronic loss of muscle function and increasing dependence due to loss of ambulation and loss of arm function and respiration. Most Duchenne patients die in the 3rd-5th decade of life.
The disease has an impact not only on patients but also on parents & (focus on this paper) on siblings. They do not have a progressive disease themselves, but earlier research has shown they worry more, have an increased sense of responsibility and experience troublesome emotions
Only limited systematic studies have been performed on Duchenne siblings. Here authors focus on the life aspirations of siblings of Duchenne patients (349), compared to a comparator group (619) through a questionnaire. All participants were young adults from the USA.
Male to female ratio was ~50:50. Overall comparisons between siblings & comparator revealed siblings reported less financial strain and a lower incidence of COVID-19 in the household (likely because they took active measures to avoid it given the fragility of Duchenne patients)
The siblings were more likely to have goals and aspirations related to Duchenne. They also showed less focus on personal growth and reflection and more focus on problem solving and carrying out roles (work, volunteering etc).
Siblings found family welfare more important than the comparator group and complained less about mental health and mood. Authors conclude the siblings are more resilient and more other-centered (or less self-centered). I do not think these are bad traits personally.
However, authors stress that in their study they did not ask whether participants interpreted the traits as positive or negative. They discuss the limitations of the study: it is a cross-sectional analysis and the data obtained was complex making analysis challenging.
I would like to add a limitation: this was only a cohort from the USA and most participants were Caucasians. More work will be needed in other countries and across different cultures. So as always there is more work to be done.
I commend the authors for studying this often overlooked group. Also recommend looking at the World Duchenne Awareness Day 2022 video – especially the section where Hazel (a sister of a Duchenne patient) explains how this impacted her life.