Health-related Quality of Life, Social, and Psychological Well-Being of 109 Adult Patients With Genetic Lipodystrophy
Authors' conclusion
This study highlights the need of psychosocial support in patients with lipodystrophy. An integrated approach and evaluation of psychological and physical symptoms by physicians should be made available to organize specialized care and set up specific therapeutic educational programs.
Study context
- Population
- Adults with genetic lipodystrophy recruited throughout the French national reference network for rare diseases of insulin secretion and insulin sensitivity; 84% womenof 175 eligible
- Participants
- 109 adults
- Exposure
- Patients with genetic lipodystrophy vs French general population norms
- Familial partial lipodystrophyn = 93
- Congenital generalized lipodystrophyn = 16
- Outcome
- Health-related quality of life (physical and mental scores) vs French general population of similar age and gender
Methodological detailsself-reported questionnaire, comparison with general population norms, national reference network
- Self-reported questionnaire
- Comparison with general population norms
- National reference network
Main finding
As reported in the abstract
- Physical and mental scores significantly decreased vs general population
- P < .001 for both
Observational data: associations, not effects.
Further findings
Moderate or severe depression
- Patients reporting moderate or severe depression
- 41%
Chronic pain
- Patients with chronic pain
- 69%
Lifetime use of tranquilizers, sleeping pills or antidepressants
- Half of respondents had taken them over their life
Unemployment due to health issues (women)
- Women more frequently unemployed due to health issues vs general population
Social discrimination
- Social discrimination prevalence
- 73%
- Cases coming from health professionals
- 34%
Body image (women)
- More than half of affected women reported a very negative impact on body image, significantly associated with depressive symptoms
Original publication
Health-related Quality of Life, Social, and Psychological Well-Being of 109 Adult Patients With Genetic Lipodystrophy. J Clin Endocrinol Metab. Published 5 December 2024. doi:10.
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