Sexual Quality of Life in Female Patients With Lipodystrophy Syndromes or Turner's Syndrome: a Case-control Study

Turner syndrome (TS) and congenital lipodystrophy syndromes (LS) are rare conditions with major consequences on cardiometabolic health, fertility, and body morphology. Some physical changes are visible from childhood in women with TS and from puberty in women with LS. Frequently, body morphology constitutes the first symptom orienting the diagnosis. In 2018, a systematic review identified 13 studies (4 randomised controlled trials, 1 case-control study, 4 cohort studies, 4 cross-sectional studies) assessing quality of life in women with TS and two observational studies in women with LS (1 cohort study, 1 cross-sectional study). These investigations suggested an impairment in the overall quality of life compared with the general population. However, little data exists on sexual quality of life, which is influenced by various factors: biological, hormonal, developmental, psychological, relational and social determinants. In the context of these chronic conditions, with biological and hormonal determinants, sexual quality of life may be affected. Only three observational studies assessing sexual quality of life with small sample sizes, including one ongoing study, have been identified. Data suggested a decrease in the sexual quality of life. When integrated into women's care pathways, aesthetic care recommended in French national diagnostic and management plans may help improving body image in women with LS. The uptake of these treatments in line with the recommendations has never been assessed, nor have their costs. This study aims to compare the sexual quality of life of women with TS or LS with that of the general population.

Inclusion Criteria: Cases: * Female aged 18 or more * Diagnosed with LS (Congenital Generalized Lipodystrophy or Familial Partial Lipodystrophy) or TS, diagnosis genetically confirmed * Patients followed in one of the participating centers * Adequate written and oral comprehension of the French language * No objection to participate Control group: Constances cohort with volunteers representative of the French general population. Exclusion Criteria: \- Not applicable