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.
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
None
Adult women with genetically confirmed lipodystrophy syndromes \[Congenital Generalized\] or \[Partial Familial\] or Turner syndrome, and with at least one consultation in the participant centers.
Case-control
Prospective
Not listed
proportion of sexual dissatisfaction in women with LS compared with that of women from the general population
proportion of sexual dissatisfaction in women with LS compared to women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life') in order to compare sexual dissatisfaction in women with LS, on the one hand, and TS, on the other, with that of women from the general population
proportion of sexual dissatisfaction in women with TS compared with that of women from the general population
proportion of sexual dissatisfaction in women with TS compared with that of women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life') in order to compare sexual dissatisfaction in women with LS, on the one hand, and TS, on the other, with that of women from the general population
proportion of disinterest in sexuality among women with LS compared with that of women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life')
proportion of disinterest in sexuality among women with LS compared with that of women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life') in order to compare sexual function, including a lack of interest in sexuality and the occurrence of pain during intercourse, among women with LS, on the one hand, and TS, on the other hand, and women in the general population.
proportion of pain during intercourse in women with LS compared with that of women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life')
proportion of pain during intercourse in women with LS compared with that of women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life') in order to compare sexual function, includin
proportion of disinterest in sexuality among women with TS compared with that of women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life')
proportion of disinterest in sexuality among women with TS compared with that of women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life') in order to compare sexual function, including a lack of interest in sexuality and the occurrence of pain during intercourse, among women with LS, on the one hand, and TS, on the other hand, and women in the general population.
proportion of pain during intercourse in women with TS compared with that of women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life')
proportion of pain during intercourse in women with TS compared with that of women from the general population (Sexual Life questionnaire from Constances cohort, Questions 'Lifestyle and health: sexual life') in order to compare sexual function, includin
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