Shota Dzemaili|Jitske Tiemensma|Richard Quinton|Nelly Pitteloud|Diane Morin|Andrew A. Dwyer
Beyond hormone replacement: quality of life in women with congenital hypogonadotropic hypogonadism
University of Lausanne|University of California, Merced|Newcastle University|University Hospital of Lausanne|University of Lausanne|Université Laval|University of Lausanne|University Hospital of Lausanne
little known women isolated gnrh deficiency cope condition study aimed examine health informational needs women congenital hypogonadotropic hypogonadism chh evaluate experiences differ women common forms infertilitycrosssectional multiple methods study using webbased data collection reach dispersed rare disease patientsa communitybased participatory research framework employed develop online survey collect quantitative qualitative data adult women diagnosed chh received least one year hormonal treatment completed morisky medication adherence scale revised illness perception questionnaire zung selfrating depression scale information health care experiences treatment outcomes patientreported challenges also collectedwomen n 55 often diagnosed late 207 74 range 1048 years 1620 patients receiving fertility treatment conceived poor adherence frequently observed 3455 half 2749 reported gap treatment exceeding year low adherence correlated depressive symptoms r 03 p 005 negative illness perceptions pervasive 3055 exhibited depressive symptoms significantly greater women common female factor infertility p 001 symptoms underappreciated providers 15 55 patients discussions psychological services women identified isolation need information finding expert care challenges living chhdespite treatable form female infertility presumable availability treatment necessarily ensure adequate quality life women isolated gnrh deficiency