Impact of lipodystrophy on health-related quality of life: the QuaLip study

Abstract

Background: Lipodystrophy is a rare disease characterized by loss of adipose tissue. Natural history studies have demonstrated significant burden of disease; however, there is limited data on the impact of lipodystrophy on quality of life (QoL) and psychoemotional well-being. The QuaLip study is a prospective observational real-world study that aims to determine the impact of lipodystrophy on QoL and psychoemotional well-being and explore subjective burden of the disease. Sixty-seven adult patients and eight pediatric patients with lipodystrophy were included. Patients were followed up for 24 months and assessments were repeated every three months. Patients were examined by licensed psychiatrists at baseline, and at year 1 and year 2 visits.

Results: Eighteen (27.69%) of 65 adult patients (two subjects refused psychiatric assessment) were diagnosed with a psychiatric disorder (e.g., depressive episodes, mixed anxiety and depressive disorder, anxiety disorder, adjustment disorder, recurrent depression, panic disorder, generalized anxiety disorder, unspecified mood disorder, nonorganic sleep disorder, post-traumatic stress disorder, depressive episode comorbidity, social phobia and obsessive-compulsive disorder comorbidity). Lipodystrophy disease and QoL questionnaires revealed a significant disease burden over the study period. More than one-third of patients reported depression symptoms on the Beck Depression Inventory and more than one-fourth of the patients reported significant hunger throughout the study period. Physical appearance, fatigue, and pain contributed to the disease burden. QoL scores were lower in patients with psychiatric disease and in those with poor metabolic control. Attention deficit hyperactivity disorder, depressive disorder, sub-threshold depressive symptoms, obsessive-compulsive disorder, appetite problems, and issues with physical appearance were identified in selected pediatric subjects.

Conclusions: Lipodystrophy has a significant impact on QoL and psychoemotional well-being. Psychiatric disorders seem to be underdiagnosed among patients with lipodystrophy.

Keywords: Appetite; Emotional well-being; Lipodystrophy; Psychiatric disease; Quality of life.

Fig. 1

Lipodystrophy disease questionnaires. A My lipodystrophy limits the type of life I can lead. B My lipodystrophy leaves me depressed or down much of the time. C I am unable to work or complete housework as much as I would like to. D I am unable to do leisure activities because I have no energy or do not feel well enough. E I would like to be able to do more leisure activities. F Tiredness limits what I can do. G My lipodystrophy causes me a lot of stress

Fig. 2

EQ-5D-5L components. A Mobility. B Self-care. C Usual activity. D Pain/ discomfort. E Depression/anxiety. F Did you feel upset or angry when you could not eat what you wanted to? G Did your hunger or eating affect your normal daily activities such as time with friends and family, school, or work? H How often did you get up at night to eat?

Fig. 3

Items from derriford appearance scale. A How distressed do you get when you see yourself in the mirror/window? B My self-consciousness makes me irritable at home. C How hurt do you feel? D How irritable do you feel? E How distressed are you by being unable to wear your favorite clothes? F How distressed do you get when going to social events?