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Psychological adjustment, quality of life, and self-perceptions of reproductive health in males with congenital adrenal hyperplasia: a systematic review

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Daae, Elisabeth, Feragen, Kristin Billaud, Nermoen, Ingrid, Falhammar, Henrik·2018·Endocrine

Abstract

PURPOSE: Congenital adrenal hyperplasia (CAH) has been shown to potentially affect psychological adjustment. However, most research has focused on females, and knowledge about psychological challenges in males remains sparse. The aim of this systematic review was therefore to assess these in males with CAH. METHODS: We systematically searched the OVID Medline, PsycINFO, CINAHL, and Web of Science databases, for articles published up to April 20, 2018, investigating psychological adjustment in males with CAH. RESULTS: Eleven studies were included in the review. Three main health domains were identified: psychological and psychiatric health, quality of life (QoL), and self-perceptions of reproductive health. Some studies covered more than one health domain. Seven studies explored psychological adjustment and/or the presence of psychiatric symptoms or disorders. Results indicated that males with CAH had more problems related to internalizing behaviors (negative behaviors directed toward the self) and more negative emotionality compared to reference groups. Six studies examined QoL, five of them reporting reduced QoL compared to reference groups. Three studies explored the impact of fertility and sexual health issues on psychological health with varying results from impaired to normal sexual well-being. CONCLUSIONS: CAH seems to have an impact on males' psychological health. However, the number of identified studies was limited, included few participants, and revealed divergent findings, demonstrating the need for larger studies and highlighting a number of methodological challenges that should be addressed by future research.

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  • Increased psychiatric symptomatology in both sexes with CAH mirrors observations for a wide range of chronic medical conditions.

    “The mental health of patients with CAH is another example; although most studies focus on females, increased psychiatric symptomatology in both sexes mirrors observations for a wide range of chronic medical conditions (547,594-597).”

    From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [594]

    The Results (Psychological and psychiatric health; page unavailable) report increased psychiatric disorders and symptoms in males with CAH compared with controls. The paper notes a psychiatric-disorder rate in females with CAH but does not establish that it is increased relative to controls. Its comparisons with other chronic conditions do not establish that increased psychiatric symptomatology in both sexes mirrors a wide range of those conditions. (LLM, conf=0.85)

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  • Males diagnosed beyond the neonatal period and women with the most severe null genotype are especially at risk for mental health issues.

    “Males diagnosed beyond the neonatal period and women with the most severe null genotype are especially at risk for mental health issues (547,594,597).”

    From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [594]

    The Results section (Psychological and psychiatric health; page unavailable) reports higher rates of psychiatric disorders and suicidality in males born before neonatal CAH screening was introduced. Birth before screening is not the same as a documented diagnosis beyond the neonatal period. The review does not report mental-health risk specifically for women with a null genotype. (LLM, conf=0.85)

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Cited by

Sorted by citations

Authors
Daae, E., Feragen, K. B., Nermoen, I., & Falhammar, H.
Affiliations
  • Oslo University Hospital (NO)
  • University of Oslo (NO)
  • Karolinska University Hospital (SE)
Corresponding author
Falhammar, Henrik
Venue
Endocrine
Published
2018-08-20
Volume
62
Issue
1
Pages
3-13
ISSN
  • 0969-711X (ISSN-L)
  • 1355-008X
  • 1559-0100
OpenAlex
W2888164537
Cited by
45
References
17
Citations by year
2026: 5 · 2025: 3 · 2024: 3 · 2023: 4 · 2022: 8 · 2021: 8 · 2020: 6 · 2019: 5 · 2018: 2
FWCI
0.52
Type
journal article
Language
en
Open access
Locations
  • Endocrine (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • NORA - Norwegian Open Research Archives (submittedVersion, cc-by)
Funders
Magnus Bergvalls Stiftelse (2017-02138)
Topics
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Molecular Biology › Sexual Differentiation and Disorders
  • Social Sciences › Psychology › Social Psychology › LGBTQ Health, Identity, and Policy
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Adrenal Hormones and Disorders
Keywords
congenital adrenal hyperplasia, male patients, psychological adjustment, quality of life, internalizing problems, negative affectivity, psychiatric symptoms, fertility, sexual health
MeSH terms
Emotional Adjustment, Adrenal Hyperplasia, Congenital, Humans, Male, Mental Health, Quality of Life, Self Concept

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