M. Sztankay, S. Wheelwright, V. Vassiliou, E. M. A. Bleiker, B. Rahman, B. Holzner, A. Yener, V. Engele, A. S. Oberguggenberger, EORTC Quality of Life Group
{"title":"患有或有患遗传性癌症易感性综合征风险的成人的生活质量：定性文献的范围综述","authors":"M. Sztankay, S. Wheelwright, V. Vassiliou, E. M. A. Bleiker, B. Rahman, B. Holzner, A. Yener, V. Engele, A. S. Oberguggenberger, EORTC Quality of Life Group","doi":"10.1002/cam4.71069","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>The 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.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>Eligible 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.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>We 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).</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>Results 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.</p>\n </section>\n </div>","PeriodicalId":139,"journal":{"name":"Cancer Medicine","volume":"14 18","pages":""},"PeriodicalIF":3.1000,"publicationDate":"2025-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/cam4.71069","citationCount":"0","resultStr":"{\"title\":\"Quality of Life in Adult Individuals Living With or at Risk of a Hereditary Cancer Predisposition Syndrome: A Scoping Review of the Qualitative Literature\",\"authors\":\"M. Sztankay, S. Wheelwright, V. Vassiliou, E. M. A. Bleiker, B. Rahman, B. Holzner, A. Yener, V. Engele, A. S. Oberguggenberger, EORTC Quality of Life Group\",\"doi\":\"10.1002/cam4.71069\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Background</h3>\\n \\n <p>The 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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>Eligible 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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>We 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).</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusion</h3>\\n \\n <p>Results 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.</p>\\n </section>\\n </div>\",\"PeriodicalId\":139,\"journal\":{\"name\":\"Cancer Medicine\",\"volume\":\"14 18\",\"pages\":\"\"},\"PeriodicalIF\":3.1000,\"publicationDate\":\"2025-09-12\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1002/cam4.71069\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Cancer Medicine\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/cam4.71069\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"ONCOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Cancer Medicine","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/cam4.71069","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
Quality of Life in Adult Individuals Living With or at Risk of a Hereditary Cancer Predisposition Syndrome: A Scoping Review of the Qualitative Literature
Background
The 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.
Methods
Eligible 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.
Results
We 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).
Conclusion
Results 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.
期刊介绍：
Cancer Medicine is a peer-reviewed, open access, interdisciplinary journal providing rapid publication of research from global biomedical researchers across the cancer sciences. The journal will consider submissions from all oncologic specialties, including, but not limited to, the following areas:
Clinical Cancer Research
Translational research ∙ clinical trials ∙ chemotherapy ∙ radiation therapy ∙ surgical therapy ∙ clinical observations ∙ clinical guidelines ∙ genetic consultation ∙ ethical considerations
Cancer Biology:
Molecular biology ∙ cellular biology ∙ molecular genetics ∙ genomics ∙ immunology ∙ epigenetics ∙ metabolic studies ∙ proteomics ∙ cytopathology ∙ carcinogenesis ∙ drug discovery and delivery.
Cancer Prevention:
Behavioral science ∙ psychosocial studies ∙ screening ∙ nutrition ∙ epidemiology and prevention ∙ community outreach.
Bioinformatics:
Gene expressions profiles ∙ gene regulation networks ∙ genome bioinformatics ∙ pathwayanalysis ∙ prognostic biomarkers.
Cancer Medicine publishes original research articles, systematic reviews, meta-analyses, and research methods papers, along with invited editorials and commentaries. Original research papers must report well-conducted research with conclusions supported by the data presented in the paper.
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