Psychological aspects of congenital hypogonadotropic hypogonadism
- 1Boston College, United States
- 2Massachusetts General Hospital, Harvard Medical School, United States
- 3HYPOHH Patient Support Group, United Kingdom
- 4Newcastle University, United Kingdom
- 5Royal Victoria Infirmary, United Kingdom
Congenital hypogonadotropic hypogonadism/Kallmann syndrome (CHH/KS) is a rare, treatable form of infertility. Like other rare disease patients, individuals with CHH/KS frequently experience feelings of isolation, shame and alienation. Unlike many rare diseases, CHH/KS is not life threatening and effective treatments are available. Nevertheless, it remains a profoundly life-altering condition with psychosocial distress on a par with untreatable or life-limiting disease. Patients with CHH/KS frequently express lasting adverse psychological, emotional, social and psychosexual effects resulting from disrupted puberty. They also frequently experience a ‘diagnostic odyssey’, characterized by distressing and convoluted medical referral pathways, lack-of-information, misinformation, and sometimes-incorrect diagnoses. Unnecessary delays in diagnosis and treatment-initiation can significantly contribute to poor body image and self-esteem. Such experiences can erode confidence and trust in medical professionals as well as undermine long-term adherence to treatment - with negative sequelae on health and wellbeing. This review provides a summary of the psychological aspects of CHH/KS and outlines an approach to comprehensive care that spans medical management as well as appropriate attention, care and referrals to peer-to-peer support and mental health services to ameliorate the psychological aspects of CHH/KS.
Keywords: coping, hypogonadotropic hypogonadism, Kallmann Syndrome, patient activation, patient centered care, patient experience, Transitional care
Received: 21 Nov 2018;
Accepted: 17 May 2019.
Edited by:Stephen Franks, Imperial College London, United Kingdom
Reviewed by:Ludwig Wildt, Innsbruck Medical University, Austria
Himanshu Arora, University of Miami, United States
Copyright: © 2019 Dwyer, Smith and Quinton. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
Dr. Andrew A. Dwyer, Boston College, Chestnut Hill, 02467, Massachusetts, United States, firstname.lastname@example.org
Dr. Richard Quinton, Newcastle University, Newcastle upon Tyne, NE1 7RU, North East England, United Kingdom, Richard.Quinton@nuth.nhs.uk