SAT-851 - Characterizing Mental Health Challenges and Care Gaps in Patients with Lipodystrophy and Their Care Partners

Background: Lipodystrophy (LD) is defined by visible adipose tissue loss and metabolic dysfunction. Current endocrine management rigorously targets metabolic parameters (e.g., HbA1c, lipids), yet the psychosocial sequelae of the disease driven by altered physical appearance and chronic illness burden are frequently overlooked. This study aimed to quantify the mental health (MH) burden, identify specific stressors across the care journey, and assess the utilization of support services in the LD community to better inform clinical practice.

Methods: We conducted an anonymous, cross-sectional online survey in late 2025, distributed via two patient advocacy organizations: Lipodystrophy United (North America) and Lipodystrophy UK (United Kingdom). Respondents included adults with a confirmed or suspected LD diagnosis and their care partners. The survey assessed the frequency of MH symptoms, the impact on quality of life (QoL) domains, and barriers to accessing professional support.

Results: A total of 63 individuals responded (56 patients, 7 care partners). The cohort was predominantly female (90%) and aged 30–60 years.
Anxiety, chronic stress, embarrassment, and mood swings were the most frequently reported symptoms. Notably, 76% of respondents reported experiencing anxiety "Often" or "Always" during their diagnostic journey.
MH challenges most significantly impacted "Self-esteem and Body Image" (85% reporting moderate-to-severe impact) and "Overall Enjoyment of Life" (79%). Furthermore, the burden extended deeply into personal intimacy, with significant negative impacts reported on romantic and sexual relationships. Despite a high symptom burden, 52.4% of respondents were not receiving mental health support. The primary barrier to access was neither cost nor patient refusal, but a lack of provider action: Forty four percent (44%) of unsupported patients cited that support was "never offered" by their medical team. Crucially, the data indicates that patients are receptive to intervention, the majority of respondents indicated they would seek help if explicitly encouraged by their treating clinician.

Conclusion: The mental health burden in lipodystrophy is multifactorial, driven by disease-specific stressors such as altered body image and the uncertainty of the diagnostic journey. Yet, a profound disconnect remains, while patients view mental health as a critical priority, over half remain unsupported. Clinicians are uniquely positioned to bridge this gap. By integrating proactive screening into standard management, especially during the period of peak vulnerability at diagnosis, providers can move beyond metabolic control to holistic patient care.

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