E Boomstra, S Hommes, R D Vromans, S van der Burg, A M Schrijver, M W J M Wouters, I M C van der Ploeg, M W van de Kamp, E J Krahmer, L V van de Poll-Franse, K M de Ligt
{"title":"\"数字呼唤行动，个性化叙述提供支持和认可\"：对癌症患者对患者报告结果测量（PROMs）反馈的定性评估与叙述。","authors":"E Boomstra, S Hommes, R D Vromans, S van der Burg, A M Schrijver, M W J M Wouters, I M C van der Ploeg, M W van de Kamp, E J Krahmer, L V van de Poll-Franse, K M de Ligt","doi":"10.1007/s11764-024-01663-7","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>Patient-reported outcome measures (PROMs) are questionnaires completed by patients to gain insight in their health-related quality of life. However, patients often find the interpretation of PROMS challenging. A personalized narrative, i.e., a story with patients' experiences tailored to the reader, could help explain PROMs and might be appreciated alongside numerical outcomes. We studied how cancer patients perceive PROMs feedback presented in a regular numerical and a novel narrative format.</p><p><strong>Methods: </strong>Cancer patients who completed PROMs in routine clinical practice were recruited. All participants received numerical feedback and a personalized narrative. Semi-structured interviews were conducted to uncover perceptions of both formats. Interviews were analyzed with an inductive reflexive approach to thematic analysis.</p><p><strong>Results: </strong>Twenty-nine patients with breast cancer, melanoma, and bladder cancer participated. Thematic analysis identified six themes: \"Understanding: I get the gist of it!\"; \"Usefulness: Tell me why I should complete PROMs\"; \"Format preferences: Numbers are cold, narratives are warm\"; \"Taking action: Can I do something about my score?\"; \"Personal relevance: Personalized narratives show me what life has in store for me\"; and \"Personal relevance: That's (not) me!\" Numbers seemed to help participants act, whereas narratives may provide emotional support and recognition. Participants identified with the content of the narrative yet differed in how they related to the main character.</p><p><strong>Conclusion: </strong>Personalized narratives could be a useful addition to PROMs feedback. The studied formats seem to serve different purposes; numbers help to facilitate action, personalized narratives provide recognition.</p><p><strong>Implications for cancer survivors: </strong>Personalized narratives may be a useful new way to communicate about quality of life to cancer survivors and help them to envision what the impact of cancer can be.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1000,"publicationDate":"2024-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"\\\"Numbers call for action, personalized narratives provide support and recognition\\\": a qualitative assessment of cancer patients' perspectives on patient-reported outcome measures (PROMs) feedback with narratives.\",\"authors\":\"E Boomstra, S Hommes, R D Vromans, S van der Burg, A M Schrijver, M W J M Wouters, I M C van der Ploeg, M W van de Kamp, E J Krahmer, L V van de Poll-Franse, K M de Ligt\",\"doi\":\"10.1007/s11764-024-01663-7\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>Patient-reported outcome measures (PROMs) are questionnaires completed by patients to gain insight in their health-related quality of life. However, patients often find the interpretation of PROMS challenging. A personalized narrative, i.e., a story with patients' experiences tailored to the reader, could help explain PROMs and might be appreciated alongside numerical outcomes. We studied how cancer patients perceive PROMs feedback presented in a regular numerical and a novel narrative format.</p><p><strong>Methods: </strong>Cancer patients who completed PROMs in routine clinical practice were recruited. All participants received numerical feedback and a personalized narrative. Semi-structured interviews were conducted to uncover perceptions of both formats. Interviews were analyzed with an inductive reflexive approach to thematic analysis.</p><p><strong>Results: </strong>Twenty-nine patients with breast cancer, melanoma, and bladder cancer participated. Thematic analysis identified six themes: \\\"Understanding: I get the gist of it!\\\"; \\\"Usefulness: Tell me why I should complete PROMs\\\"; \\\"Format preferences: Numbers are cold, narratives are warm\\\"; \\\"Taking action: Can I do something about my score?\\\"; \\\"Personal relevance: Personalized narratives show me what life has in store for me\\\"; and \\\"Personal relevance: That's (not) me!\\\" Numbers seemed to help participants act, whereas narratives may provide emotional support and recognition. Participants identified with the content of the narrative yet differed in how they related to the main character.</p><p><strong>Conclusion: </strong>Personalized narratives could be a useful addition to PROMs feedback. The studied formats seem to serve different purposes; numbers help to facilitate action, personalized narratives provide recognition.</p><p><strong>Implications for cancer survivors: </strong>Personalized narratives may be a useful new way to communicate about quality of life to cancer survivors and help them to envision what the impact of cancer can be.</p>\",\"PeriodicalId\":15284,\"journal\":{\"name\":\"Journal of Cancer Survivorship\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":3.1000,\"publicationDate\":\"2024-09-25\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Cancer Survivorship\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s11764-024-01663-7\",\"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":"Journal of Cancer Survivorship","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s11764-024-01663-7","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
"Numbers call for action, personalized narratives provide support and recognition": a qualitative assessment of cancer patients' perspectives on patient-reported outcome measures (PROMs) feedback with narratives.
Purpose: Patient-reported outcome measures (PROMs) are questionnaires completed by patients to gain insight in their health-related quality of life. However, patients often find the interpretation of PROMS challenging. A personalized narrative, i.e., a story with patients' experiences tailored to the reader, could help explain PROMs and might be appreciated alongside numerical outcomes. We studied how cancer patients perceive PROMs feedback presented in a regular numerical and a novel narrative format.
Methods: Cancer patients who completed PROMs in routine clinical practice were recruited. All participants received numerical feedback and a personalized narrative. Semi-structured interviews were conducted to uncover perceptions of both formats. Interviews were analyzed with an inductive reflexive approach to thematic analysis.
Results: Twenty-nine patients with breast cancer, melanoma, and bladder cancer participated. Thematic analysis identified six themes: "Understanding: I get the gist of it!"; "Usefulness: Tell me why I should complete PROMs"; "Format preferences: Numbers are cold, narratives are warm"; "Taking action: Can I do something about my score?"; "Personal relevance: Personalized narratives show me what life has in store for me"; and "Personal relevance: That's (not) me!" Numbers seemed to help participants act, whereas narratives may provide emotional support and recognition. Participants identified with the content of the narrative yet differed in how they related to the main character.
Conclusion: Personalized narratives could be a useful addition to PROMs feedback. The studied formats seem to serve different purposes; numbers help to facilitate action, personalized narratives provide recognition.
Implications for cancer survivors: Personalized narratives may be a useful new way to communicate about quality of life to cancer survivors and help them to envision what the impact of cancer can be.
期刊介绍：
Cancer survivorship is a worldwide concern. The aim of this multidisciplinary journal is to provide a global forum for new knowledge related to cancer survivorship. The journal publishes peer-reviewed papers relevant to improving the understanding, prevention, and management of the multiple areas related to cancer survivorship that can affect quality of care, access to care, longevity, and quality of life. It is a forum for research on humans (both laboratory and clinical), clinical studies, systematic and meta-analytic literature reviews, policy studies, and in rare situations case studies as long as they provide a new observation that should be followed up on to improve outcomes related to cancer survivors. Published articles represent a broad range of fields including oncology, primary care, physical medicine and rehabilitation, many other medical and nursing specialties, nursing, health services research, physical and occupational therapy, public health, behavioral medicine, psychology, social work, evidence-based policy, health economics, biobehavioral mechanisms, and qualitative analyses. The journal focuses exclusively on adult cancer survivors, young adult cancer survivors, and childhood cancer survivors who are young adults. Submissions must target those diagnosed with and treated for cancer.
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