ArticleCancer medicine2025
Quality of Life in Adult Individuals Living With or at Risk of a Hereditary Cancer Predisposition Syndrome: A Scoping Review of the Qualitative Literature.
Article in Cancer medicine, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
- The Clinical Application of Refined Risk Estimates Study in BRCA1 and BRCA2 Pathogenic Variant Carriers: A Randomized Controlled Trial.Cancer prevention research (Philadelphia, Pa.) · 2026Trial
- Redefining holistic care for gynecologic hereditary cancer syndromes through universal social work referrals.Gynecologic oncology reports · 2026Article
- Quality of Life in Adult Individuals Living With or at Risk of a Hereditary Cancer Predisposition Syndrome: A Scoping Review of the Qualitative Literature.Cancer medicine · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
Abstract
backgroundThe in-depth understanding of the impact of a hereditary cancer predisposition syndrome (HCPS) on the health-related quality of life (HRQOL) of individuals with a hereditary cancer burden contributes to the improvement of counselling strategies as well as care planning and informs the development of patient-reported outcome measures (PROMs) for standardised HRQOL assessment. This is the first review to systematically identify and synthesise the evidence from qualitative literature on HRQOL issues relevant for adult individuals living with (the risk of) HCPS between 1991 and 2024.
methodsEligible studies were qualitative studies of adult individuals' experiences, including direct quotes and studies on the development or validation of health outcome measures. The literature was searched from 1991 to 2024 using the databases PubMed, CINAHL, Embase, and PsycINFO.
resultsWe screened 13,410 references for study inclusion by title and abstract, resulting in the retrieval of 606 full papers. More than 6800 qualitative patient quotes were extracted and coded by four raters. Reviewed literature provided a comprehensive picture of the experience of individuals living with (the risk of) HCPS in nine identified HRQOL domains (decision-making, impact on family and social relationships, emotional response to test result, living with HCPS, perspective on life and self, HCPS-related symptoms, taking measures to prevent the development or progression of cancer, issues related to the health care system, practical issues of life).
conclusionResults contribute to insight on how individuals at risk cope with genetic testing and will inform the development of a PROM on their HRQOL that will be applicable for individualised patient management and service evaluation.
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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.