Women's perceptions of femininity after craniopharyngioma: a qualitative study

Abstract

Background Previous quantitative studies have shown a reduced quality of life in patients treated for craniopharyngioma (CP). However, few have assessed their sexual quality of life and other issues related to patient intimacy have not yet been addressed. Standardized questionnaires limit the approach to sexuality and the exploration of patient experiences. A qualitative study, which allows in‐depth analysis, may represent an interesting approach to explore intimacy in women with a history of CP. Objective To assess the impact of a CP history on femininity and relationships in women. Design and patients A qualitative study with semi‐structured interviews was conducted with 15 adult women treated for CP during childhood, adolescence or at childbearing age up to 40 years of age. Interviews were audio recorded, anonymized and transcribed literally. Data analysis was carried out with an inductive approach according to the grounded theory method. Results Three main themes were identified: (a) apparent changes leading to altered self‐perception that may impact on femininity and generate lower self‐esteem; (b) managing the hidden disabilities of the disease inducing a need for permanent control; and (c) building parenthood and couple relationships: coping with sexual dysfunction and infertility. Conclusions Our study highlighted alterations in self‐perception and femininity due to body change and disability resulting from CP treatment, impacting both couple and social relationships. Interviewing women who underwent CP surgery at different ages highlighted specific needs and different expectations of medical professionals which emphasize the importance of offering both global and personalized care.

Contemporary Biological Insights and Clinical Management of Craniopharyngioma

“…Pituitary deficits and neuroendocrine disturbances due to hypothalamic involvement and treatmentassociated hypothalamic lesions 66 as well as visual 67,68 and neuropsychological impairments 69 have major impact on long-term prognosis and quality of life (QoL) after craniopharyngioma 5,67 . Furthermore, gender-specific 70,71 , cardiovascular 72 and cerebrovascular sequelae such as cerebral infarction especially in patients with initial symptoms of increased intracranial pressure 73 result in…”

“…Gonadotrophin deficiency may necessitate pubertal induction and medically assisted reproduction, which is often unsatisfactory, leading to impairment in intimate relationships, sexuality, and intimacy 70,71 . Not surprisingly, rates of sexual activity are lower and psychosexual dysfunction higher in adult patients treated during childhood 70,121 .…”