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Bereavement Effects on Parents of Children with Spinal Muscular Atrophy

Strategic Insights

— 2 min read

Researchers from Tufts Medical Center recently conducted a study evaluating the impact of bereavement effects on parents of children who have died of spinal muscular atrophy (SMA) type 1. The study, which was published in the journal Value in Health, aimed to assess health-related quality of life, work productivity, and mental health among these parents over time. The research team surveyed 72 parents in the US, with 70 completing more than half the survey and being included in the analysis. The survey measured health-related quality of life, work productivity, anxiety, and depression, and derived health utility values using the Short-Form 6-Dimension.

Key Takeaways:

  • The study highlights the importance of considering bereavement effects in cost-effectiveness analyses of life-extending therapies for SMA type 1.
  • The survey showed that health utility values were significantly lower among parents who had lost a child to SMA type 1, indicating a negative impact on quality of life.
  • The study emphasizes the need to address the mental health and well-being of parents of children with SMA type 1, particularly after the child's death.
  • The research team recommends that healthcare providers offer support and resources to parents to help them cope with the loss of their child.
  • The study's findings have significant implications for the development of policies and programs aimed at supporting families affected by SMA type 1.
  • The survey methodology and results can inform future research on bereavement effects in other populations.
  • The study highlights the need for more research on the long-term effects of SMA type 1 on families.

Statistics:

  • 79% of respondents were mothers.
  • 89% of respondents were over the age of 34.
  • 84% of respondents identified as White.
  • 72 parents were surveyed, with 70 completing more than half the survey.
  • The survey measured health-related quality of life using the Short-Form 12-Item Survey-version 2.
  • The survey measured work productivity using the Work Limitations Questionnaire.
  • The survey measured anxiety using the General Anxiety Disorder-7.
  • The survey measured depression using the Patient Health Questionnaire-9.
  • Health utility values were derived using the Short-Form 6-Dimension.

Sources:

  • Mental Health, Quality of Life, and Work Functioning of Parents of Children Who Have Died of Spinal Muscular Atrophy (Value in Health, 2025).
  • Value in Health can be contacted at: Elsevier Science Inc, Ste 800, 230 Park Ave, New York, NY 10169, USA. (Elsevier - www.elsevier.com; Value in Health - www.journals.elsevier.com/value-in-health/)
  • Tara A. Lavelle, Center for the Evaluation of Value and Risk in Health, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, MA, United States.

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