ArticleJournal of genetic counseling2005
Psychological adjustment and knowledge about hereditary hemochromatosis in a clinic-based sample: a prospective study.
Article in Journal of genetic counseling, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
What it found
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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.
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Who cites it
14 citing papers in PubMed, 24 citations in OpenAlex.
- Trial
- Effect of communicating DNA based risk assessments for Crohn's disease on smoking cessation: randomised controlled trial.BMJ (Clinical research ed.) · 2012Trial
- Quality of life in hereditary haemochromatosis: Scoping review of symptoms and initial ranking of symptoms by a special interest group.World journal of hepatology · 2025Review
- Article
- Patient and observer reported outcome measures to evaluate health-related quality of life in inherited metabolic diseases: a scoping review.Orphanet journal of rare diseases · 2018Article
- Haemochromatosis.Nature reviews. Disease primers · 2018Review
- Quality of life scores differs between genotypic groups of patients with suspected hereditary hemochromatosis.BMC medical genetics · 2018Article
- Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model.Journal of genetic counseling · 2016Article
- A new approach to assessing affect and the emotional implications of personal genomic testing for common disease risk.Public health genomics · 2015Article
- Considerations for the impact of personal genome information: a study of genomic profiling among genetics and genomics professionals.Journal of genetic counseling · 2010Article
- Ethical issues of predictive genetic testing for diabetes.Journal of diabetes science and technology · 2009Review
- A prospective, longitudinal study of the impact of GJB2/GJB6 genetic testing on the beliefs and attitudes of parents of deaf and hard-of-hearing infants.American journal of medical genetics. Part A · 2009Article
- Assessment of psychosocial outcomes in genetic counseling research: an overview of available measurement scales.Journal of genetic counseling · 2007Article
- Patients' understanding of genetic susceptibility testing in mainstream medicine: qualitative study on thrombophilia.BMC health services research · 2007Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This study assessed psychological adjustment and quality of life relative to population-based norms and knowledge about hereditary hemochromatosis in a sample of 101 patients who attended a hemochromatosis clinic. Participants were assessed prior to their clinic visit, and two weeks and 12 months after attendance, using self-administered questionnaires. Mean Mental Health Component Scores from the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) (45.3, 95% CI 43.2, 47.4) were as compromised as those found amongst stroke victims (45.9, 95% CI 42.8, 49.0) who had participated in a national health survey. Recall of the genetic testing result was less than optimal, in that only 69.3% of those with genetic testing results knew whether they carried one or two mutations. This study demonstrates that patients would benefit from routine assessment of psychological distress and referral to mental health professionals of those whose levels of distress suggest a need for clinical intervention. Results also show that patients may benefit from strategies aimed at improving recall of genetic testing results.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.