Beyond hormone replacement: quality of life in women with congenital hypogonadotropic hypogonadism.

Détails

Ressource 1Télécharger: EC-17-0095.full.pdf (963.69 [Ko])
Etat: Public
Version: Final published version
ID Serval
serval:BIB_3189030E7B51
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Titre
Beyond hormone replacement: quality of life in women with congenital hypogonadotropic hypogonadism.
Périodique
Endocrine connections
Auteur(s)
Dzemaili S., Tiemensma J., Quinton R., Pitteloud N., Morin D., Dwyer A.A.
ISSN
2049-3614 (Print)
ISSN-L
2049-3614
Statut éditorial
Publié
Date de publication
08/2017
Peer-reviewed
Oui
Volume
6
Numéro
6
Pages
404-412
Langue
anglais
Notes
Publication types: Journal Article
Publication Status: ppublish
Résumé
Little is known about how women with isolated GnRH deficiency cope with their condition. This study aimed to examine the health and informational needs of women with congenital hypogonadotropic hypogonadism (CHH) and evaluate if their experiences differ from women with more common forms of infertility.
Cross-sectional, multiple methods study using web-based data collection to reach dispersed rare disease patients.
A community-based participatory research framework was employed to develop an online survey and collect quantitative and qualitative data. Adult women diagnosed with CHH who had received at least one year of hormonal treatment completed the Morisky Medication Adherence Scale, Revised Illness Perception Questionnaire and Zung Self-Rating Depression Scale. Information on health care experiences, treatment outcomes and patient-reported challenges were also collected.
Women (n = 55) were often diagnosed late (20.7 ± 7.4, range: 10-48 years) and 16/20 patients receiving fertility treatment conceived. Poor adherence was frequently observed (34/55) while more than half (27/49) reported a gap in treatment exceeding a year. Low adherence correlated with depressive symptoms (r = 0.3, P > 0.05). Negative illness perceptions were pervasive and 30/55 exhibited some depressive symptoms - significantly greater than women with common female factor infertility (P < 0.01). Symptoms were underappreciated by providers as only 15 of 55 patients had discussions about psychological services. Women identified isolation, need for information and finding expert care as challenges to living with CHH.
Despite being a treatable form of female infertility, the presumable availability of treatment does not necessarily ensure adequate quality of life for women with isolated GnRH deficiency.

Mots-clé
Kallmann syndrome, female infertility, illness perceptions, medication adherence, patient-centered care, rare diseases
Pubmed
Web of science
Open Access
Oui
Création de la notice
13/07/2017 2:15
Dernière modification de la notice
20/08/2019 13:16
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