Psychological Aspects of Congenital Hypogonadotropic Hypogonadism
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 ef...
| Main Authors: | , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2019-07-01
|
| Series: | Frontiers in Endocrinology |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/article/10.3389/fendo.2019.00353/full |
| _version_ | 1818842406554959872 |
|---|---|
| author | Andrew A. Dwyer Andrew A. Dwyer Neil Smith Richard Quinton |
| author_facet | Andrew A. Dwyer Andrew A. Dwyer Neil Smith Richard Quinton |
| author_sort | Andrew A. Dwyer |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-19T04:41:28Z |
| format | Article |
| id | doaj.art-896382d9086948dd9cb1a971e9805203 |
| institution | Directory Open Access Journal |
| issn | 1664-2392 |
| language | English |
| last_indexed | 2024-12-19T04:41:28Z |
| publishDate | 2019-07-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Endocrinology |
| spelling | doaj.art-896382d9086948dd9cb1a971e98052032022-12-21T20:35:35ZengFrontiers Media S.A.Frontiers in Endocrinology1664-23922019-07-011010.3389/fendo.2019.00353438059Psychological Aspects of Congenital Hypogonadotropic HypogonadismAndrew A. Dwyer0Andrew A. Dwyer1Neil Smith2Richard Quinton3William F. Connell School of Nursing, Boston College, Boston, MA, United StatesReproductive Endocrine Unit, Massachusetts General Hospital, Boston, MA, United StatesInternational Patient Support Group for Hypogonadotropic Hypogonadism (HYPOHH), London, United KingdomNewcastle-upon-Tyne Hospitals Foundation NHS Trust (Royal Victoria Infirmary) and Institute of Genetic Medicine, University of Newcastle-upon-Tyne, Newcastle-upon-Tyne, United KingdomCongenital 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.https://www.frontiersin.org/article/10.3389/fendo.2019.00353/fullcopinghypogonadotropic hypogonadismkallmann syndromepatient activationpatient centered carepatient experience |
| spellingShingle | Andrew A. Dwyer Andrew A. Dwyer Neil Smith Richard Quinton Psychological Aspects of Congenital Hypogonadotropic Hypogonadism Frontiers in Endocrinology coping hypogonadotropic hypogonadism kallmann syndrome patient activation patient centered care patient experience |
| title | Psychological Aspects of Congenital Hypogonadotropic Hypogonadism |
| title_full | Psychological Aspects of Congenital Hypogonadotropic Hypogonadism |
| title_fullStr | Psychological Aspects of Congenital Hypogonadotropic Hypogonadism |
| title_full_unstemmed | Psychological Aspects of Congenital Hypogonadotropic Hypogonadism |
| title_short | Psychological Aspects of Congenital Hypogonadotropic Hypogonadism |
| title_sort | psychological aspects of congenital hypogonadotropic hypogonadism |
| topic | coping hypogonadotropic hypogonadism kallmann syndrome patient activation patient centered care patient experience |
| url | https://www.frontiersin.org/article/10.3389/fendo.2019.00353/full |
| work_keys_str_mv | AT andrewadwyer psychologicalaspectsofcongenitalhypogonadotropichypogonadism AT andrewadwyer psychologicalaspectsofcongenitalhypogonadotropichypogonadism AT neilsmith psychologicalaspectsofcongenitalhypogonadotropichypogonadism AT richardquinton psychologicalaspectsofcongenitalhypogonadotropichypogonadism |