title: Psychosexual development in men with congenital hypogonadotropic hypogonadism on long-term treatment: a mixed methods study.
abstract: BACKGROUND
  Congenital hypogonadotropic hypogonadism (CHH) is a rare, genetic, reproductive endocrine disorder characterized by absent puberty and infertility. Limited information is available on the psychosocial impact of CHH and psychosexual development in these patients.
  
  
  OBJECTIVE
  The aim of this study was to determine the impact of CHH on psychosexual development in men on long-term treatment.
  
  
  METHODS
  A sequential mixed methods explanatory design was used. First, an online survey (quantitative) was used to quantify the frequency of psychosexual problems among CHH men. Second, patient focus groups (qualitative) were conducted to explore survey findings in detail and develop a working model to guide potential nursing and interdisciplinary interventions.
  
  
  METHODS
  Patient characteristics, frequency of body shame, difficulty with intimate relationships, and never having been sexually active were assessed. Additionally, we collected subjective patient-reported outcomes regarding the impact of CHH on psychological/emotional well-being, intimate relationships, and sexual activity.
  
  
  RESULTS
  A total of 101 CHH men on long-term treatment (>1 year) were included for the analysis of the online survey (mean age 37 ± 11 years, range 19-66, median 36). Half (52/101, 51%) of the men had been seen at a specialized academic center and 37/101 (37%) reported having had fertility-inducing treatment. A high percentage of CHH men experience psychosexual problems including difficulty with intimate relationships (70%) and body image concerns/body shame (94/101, 93%), and the percentage of men never having been sexually active is five times the rate in a reference group (26% vs. 5.4%, P < 0.001). Focus groups revealed persisting body shame and low self-esteem despite long-term treatment that has lasting impact on psychosexual functioning.
  
  
  CONCLUSIONS
  CHH men frequently experience psychosexual problems that pose barriers to intimate relationships and initiating sexual activity. These lingering effects cause significant distress and are not ameliorated by long-term treatment. Psychosexual assessment in CHH men with appropriate psychological support and treatment should be warranted in these patients. Dwyer AA, Quinton R, Pitteloud N, and Morin D. Psychosexual development in men with congenital hypogonadotropic hypogonadism on long-term treatment: A mixed methods study. Sex Med 2015;3:32-41.
authors.affiliation: Endocrinology, Diabetes & Metabolism Service, Centre Hospitalier Universitaire Vaudois Lausanne, Switzerland ; Institut universitaire de formation et de recherche en soins, University of Lausanne Lausanne, Switzerland.
authors.forename: Andrew A
authors.initials: AA
authors.lastname: Dwyer
authors.affiliation: Institute of Genetic Medicine and the Royal Victoria Infirmary, University of Newcastle-upon-Tyne Newcastle-upon-Tyne, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Quinton
authors.affiliation: Endocrinology, Diabetes & Metabolism Service, Centre Hospitalier Universitaire Vaudois Lausanne, Switzerland ; Department of Physiology, Faculty of Biology & Medicine, University of Lausanne Lausanne, Switzerland.
authors.forename: Nelly
authors.initials: N
authors.lastname: Pitteloud
authors.affiliation: Institut universitaire de formation et de recherche en soins, University of Lausanne Lausanne, Switzerland.
authors.forename: Diane
authors.initials: D
authors.lastname: Morin
keywords: Body Image; Congenital Hypogonadotropic Hypogonadism; Kallmann Syndrome; Mixed Methods; Nursing; Psychosexual Outcome; Psychosocial Factors; Self-Esteem
references.citation: Endocr J. 2012;59(12):1099-105
references.pmid: 22972022
references.citation: Mol Cell Endocrinol. 2006 Jul 25;254-255:172-8
references.pmid: 16806671
references.citation: Clin Genet. 2008 Sep;74(3):197-207
references.pmid: 18657147
references.citation: Psychother Psychosom. 2012;81(6):380-2
references.pmid: 22964754
references.citation: Andrologia. 2014 Dec;46(10):1107-12
references.pmid: 24313565
references.citation: J Sex Med. 2014 Jan;11(1):84-92
references.pmid: 24118940
references.citation: Ann Intern Med. 1964 Aug;61:255-68
references.pmid: 14208163
references.citation: Lancet. 2012 Mar 17;379(9820):1056-67
references.pmid: 22305766
references.citation: J Sex Med. 2008 Dec;5(12):2842-52
references.pmid: 19090941
references.citation: J Clin Endocrinol Metab. 2002 Sep;87(9):4128-36
references.pmid: 12213860
references.citation: Neuroendocrinology. 2010;92(2):81-99
references.pmid: 20606386
references.citation: Probl Actuels Endocrinol Nutr. 1973 May 3;16:179-99
references.pmid: 4147392
references.citation: J Sex Med. 2013 Jun;10(6):1516-25
references.pmid: 23551571
references.citation: Fertil Steril. 2009 Aug;92(2):594-604
references.pmid: 18930225
references.citation: J Clin Endocrinol Metab. 1997 Feb;82(2):407-13
references.pmid: 9024227
references.citation: J Clin Endocrinol Metab. 2008 Jul;93(7):2686-92
references.pmid: 18445673
references.citation: Am J Public Health. 1993 Oct;83(10):1400-8
references.pmid: 8214228
references.citation: J Clin Endocrinol Metab. 2009 Mar;94(3):801-8
references.pmid: 19066302
references.citation: J Nerv Ment Dis. 2012 Jan;200(1):95-8
references.pmid: 22210370
references.citation: Health Promot Pract. 2006 Jul;7(3):312-23
references.pmid: 16760238
references.citation: J Clin Endocrinol Metab. 2008 Mar;93(3):784-91
references.pmid: 18073301
references.citation: Genet Med. 2008 May;10(5):325-9
references.pmid: 18496030
references.citation: Eur J Endocrinol. 2004 Nov;151 Suppl 3:U151-9
references.pmid: 15554900
references.citation: BMJ. 2012 Dec 03;345:e6971
references.pmid: 23207501
references.citation: Cogn Neuropsychiatry. 2013;18(6):594-614
references.pmid: 23441837
references.citation: J Clin Endocrinol Metab. 2012 Sep;97(9):3056-67
references.pmid: 22723321
references.citation: Endocr Rev. 1998 Oct;19(5):521-39
references.pmid: 9793755
references.citation: J Clin Endocrinol Metab. 2012 Mar;97(3):707-18
references.pmid: 22392951
references.citation: J Sex Med. 2013 Dec;10(12):2890-903
references.pmid: 23981815
references.citation: Trends Endocrinol Metab. 2011 Jul;22(7):249-58
references.pmid: 21511493
references.citation: N Engl J Med. 2012 Feb 2;366(5):443-53
references.pmid: 22296078
references.citation: J Sex Med. 2014 Jan;11(1):93-101
references.pmid: 23841855
references.citation: Pediatrics. 2008 Feb;121 Suppl 3:S218-30
references.pmid: 18245514
references.citation: CNS Spectr. 2012 Dec;17(4):167-75
references.pmid: 22939280
references.citation: Nat Rev Endocrinol. 2011 Oct 18;8(3):172-82
references.pmid: 22009162
references.citation: Arch Sex Behav. 1971 Dec;1(4):329-44
references.pmid: 24179080
references.citation: Ann Fam Med. 2012 Mar-Apr;10(2):126-33
references.pmid: 22412004
references.citation: J Clin Endocrinol Metab. 1996 Oct;81(10):3578-83
references.pmid: 8855804
references.citation: Psychol Rep. 1996 Dec;79(3 Pt 2):1123-6
references.pmid: 9009757
references.citation: Clin Endocrinol (Oxf). 2001 Aug;55(2):163-74
references.pmid: 11531922
references.citation: Clin Endocrinol (Oxf). 2010 Jun;72(6):731-7
references.pmid: 19912242
references.citation: Nat Rev Endocrinol. 2009 Oct;5(10):569-76
references.pmid: 19707180