ArticleThe Journal of clinical endocrinology and metabolism2025
CAHQL: A Patient-Reported Outcome Instrument to Assess Health-Related Quality of Life in Congenital Adrenal Hyperplasia.
Article in The Journal of clinical endocrinology and metabolism, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 3 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
3 citing papers in PubMed.
- Factors affecting the quality of life of adults living with congenital adrenal hyperplasia: a qualitative study of lived experience.Endocrine connections · 2026Article
- Living with congenital adrenal hyperplasia: insights on quality of life.Frontiers in endocrinology · 2026Article
- Perceptions of CAH self-management and stress dosing in relation to health-related quality of life as measured by CAHQL.Frontiers in endocrinology · 2026Article
Corrections and comments
- Erratum issued
Authors and funding
8 authors.
Funding
Abstract
contextMeasuring health-related quality of life (HRQoL) is a crucial aspect of evaluating health care outcomes. Patients with congenital adrenal hyperplasia (CAH) often self-report deficiencies in HRQoL.
objectiveThe aim of our study was to develop a disease-specific patient-reported outcome (PRO) instrument to evaluate the HRQoL of patients > 16 years old with classic CAH.
methodsFollowing the FDA guidelines for developing PRO instruments, we developed a conceptual framework for the instrument. A preliminary instrument was created after interviewing a representative sample of 12 patients (aged 16 to 68 years) with CAH and 3 parents and obtaining expert feedback from 4 endocrinologists. The instrument was edited after cognitive interviews with 6 patients. Internal consistency of the instrument was evaluated using Cronbach's alpha. Validity was assessed by comparing the scores of our instrument with scores from widely used validated instruments for HRQoL and PRO not specific to CAH.
resultsSixty-nine patients 16 to 75 years old participated in validating our preliminary instrument. The final questionnaire consists of 44 questions within 7 domains: General Health, Adrenal Insufficiency, Glucocorticoid Excess, Physical Functioning, Mental Health and Cognition, Social Functioning, and Sexual Functioning, with acceptable internal consistency (Chronbach's alpha ≥ .6) and validity (r = -0.350 to 0.866).
conclusionCAHQL is the first validated PRO instrument to capture disease-specific HRQoL outcomes in CAH. In addition to its anticipated use in the clinical setting, the instrument could be used to assess the efficacy of novel treatments in development.
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