European Journal of Cancer Care最新文献

{"title":"Chronic Myeloid Leukaemia: A Qualitative Study of Patient and Practitioner Experiences of Managing Treatment","authors":"Ann Hewison,&nbsp;Eve Roman,&nbsp;Alexandra Smith,&nbsp;Dorothy McCaughan,&nbsp;Rebecca Sheridan,&nbsp;Russell Patmore,&nbsp;Karl Atkin,&nbsp;Debra Howell","doi":"10.1155/2023/6646271","DOIUrl":"10.1155/2023/6646271","url":null,"abstract":"<div>\u0000 <p><i>Background</i>. Following the dramatic impact of tyrosine kinase inhibitor (TKI) drugs on chronic myeloid leukaemia (CML) survival, research interest has grown into the long-term impact of treatment, identifying difficulties with medication adherence and ongoing side effects. Qualitative studies suggest the disease has a significant physical and psychological impact on patients, and medication management may be complex. However, only one study worldwide has examined healthcare practitioner (HCP) experiences of managing CML treatment and very little UK qualitative research exists exploring the patient experience. <i>Purpose</i>. Our qualitative study aimed to investigate both patient and HCP experiences of managing CML treatment in the UK. <i>Methods</i>. Patients and HCPs were purposively sampled from within the Haematological Malignancy Research Network (HMRN), a UK population-based patient cohort. Qualitative interviews were carried out with seventeen patients and thirteen HCPs, and data were analysed using thematic analysis. <i>Results</i>. Four themes were developed from interview analysis: “Importance of optimal clinical management,” “Multiple adherence strategies,” “Inconsistent management of adherence,” and “Controlling side effects is complex.” HCPs tended to focus on sometimes complex, clinical decision-making. Patients described various strategies to support adherence and manage side effects, some of which HCPs seemed to be less aware of. Several patients did not discuss non-adherence or side effects with their HCP, who tended to avoid direct enquiry regarding adherence and could be uncertain about adherence advice, whilst relying on medical strategies to manage side effects. <i>Conclusions</i>. Despite HCPs focusing on the medical management of CML treatment, patients may opt to use self-management techniques to control adherence and side effects and can be reluctant to discuss related difficulties. Increased clinic time and clear adherence advice guidance may support such discussion, in addition to adjusting the context of follow-up care through the introduction of shared care with GP services.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/6646271","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139236629","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Comparative Study of Sleep Parameters in Adult Survivors of Childhood Acute Lymphoblastic Leukemia and Healthy Peers: Insights from Accelerometer Data","authors":"Tomáš Vyhlídal,&nbsp;Jan Dygrýn,&nbsp;František Chmelík","doi":"10.1155/2023/8978333","DOIUrl":"10.1155/2023/8978333","url":null,"abstract":"<div>\u0000 <p><i>Background</i>. Sleep problems are among the common late side effects of treatment that can occur in survivors of childhood acute lymphoblastic leukemia. At present, the objective evaluation of sleep in the natural environment using actigraphy rather than self-assessment of research participants or the more demanding polysomnography is increasingly coming to the forefront in population epidemiological studies. The main objective of this cross-sectional study is to objectively characterize selected sleep parameters with respect to gender in adult survivors of childhood acute lymphoblastic leukemia (ALS) in their natural environment and to compare them with a control group (CG) sampled from a healthy population. Another partial aim of the study is to determine the fulfillment of recommendations in the areas of sleep (SL) and sleep efficiency (SE). <i>Methods</i>. 20 ALS and 20 CGs aged 18–30 years participated in the survey. The ALS were diagnosed on average 15.5 years ago. Selected sleep parameters were measured instrumentally by means of an Axivity AX3 accelerometer worn on the wrist for seven days in a natural environment. <i>Results</i>. No significant differences were found between the ALS and CG groups for the selected sleep parameters. The total time in bed for the ALS was 405.5 min/day compared to 428.2 min/day for the CG (<i>p</i> = 0.37), sleep for the ALS was 372.7 min/day compared to 382.9 min/day for the CG (<i>p</i> = 0.34), and SE for the ALS was 88.0% compared to 88.5% for the CG (<i>p</i> = 0.99). No significant gender differences were found. The sleep recommendation of &gt;420 min/day was met by 15% for the ALS and 19% for the CG; SE &gt; 85% was achieved by 80% for the ALS and 80% for the CG. <i>Conclusion</i>. The results of our study suggest that ALS may achieve the same values as the healthy population in selected sleep parameters.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/8978333","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139248782","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Translating Evidence from Dutch Exercise Oncology Trials in Patients with Breast Cancer into Clinical Practice Using the RE-AIM Framework","authors":"Marieke R. Ten Tusscher,&nbsp;Martijn M. Stuiver,&nbsp;Caroline S. Kampshoff,&nbsp;Rosalie J. Huijsmans,&nbsp;Neil K. Aaronson,&nbsp;Miranda Velthuis,&nbsp;Roxanne Gal,&nbsp;Hanna Van Waart,&nbsp;Anne M. May,&nbsp;Laurien M. Buffart","doi":"10.1155/2023/2296881","DOIUrl":"10.1155/2023/2296881","url":null,"abstract":"<div>\u0000 <p><i>Purpose</i>. We aimed to evaluate the potential for implementing exercise interventions for patients with breast cancer in the Netherlands, based on findings of the Dutch randomized controlled trials in this population. <i>Methods</i>. We evaluated the implementation of four Dutch exercise trials retrospectively, using the five dimensions of the RE-AIM framework: Reach (exercise participation rate), Effectiveness for physical fitness, fatigue, quality of life, and physical function, Adoption (e.g., satisfaction of physical therapists guiding the exercise intervention), Implementation (cost-effectiveness and exercise adherence correlates thereof), and Maintenance (maintenance of exercise levels by individual patients and sustainability of exercise delivery at organization level). Thereby, we reflect on these results using (international) literature to gain better insight in overall barriers, facilitators, and opportunities for further implementation of exercise interventions. <i>Results</i>. Participation rates of 44–52% not only indicated acceptable Reach in the context of a trial but also indicated room for improvement. Effectiveness of exercise during and after treatment was demonstrated in most trials showing benefits for aerobic fitness, physical fatigue, quality of life and physical function, and high patient satisfaction. Adoption of the exercise interventions by physical therapists was adequate (satisfaction score: 7.5 out of 10). Evaluation of Implementation indicated adequate adherence to supervised exercise, inconsistent findings on potential correlates of adherence, and promising results on cost-effectiveness. Currently, reimbursement for exercise programs is lacking. Maintenance of intervention effects at the patient level was limited and inconsistent. Maintenance of intervention availability at the organizational level was facilitated by an extensive network of specially trained physical therapists, but better communication and collaboration between different healthcare professionals are desired. <i>Conclusions</i>. Improved implementation could particularly be achieved by increasing reach and improved focus on exercise maintenance on both the patient and organizational level.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/2296881","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135141601","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Validity and Reliability of the Turkish Version of National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Ovarian Symptom Index-18 (NFOSI-18) and Neurotoxicity-4 (NTX-4) for Patients with Advanced Ovarian Cancer","authors":"Husnu Tore Yavuzsen,&nbsp;Sukriye Cansu Gulteki̇n,&nbsp;Karya Polat,&nbsp;Murat Keser,&nbsp;Zeynep Gulsum Guc,&nbsp;Merve Keskinkilic,&nbsp;Tugba Yavuzsen,&nbsp;Didem Karadibak","doi":"10.1155/2023/5521892","DOIUrl":"10.1155/2023/5521892","url":null,"abstract":"<div>\u0000 <p><i>Objectives</i>. The aim of this study was to investigate the validity and reliability of the Turkish version of the National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Ovarian Symptom Index-18 (NFOSI-18) and Functional Assessment of Cancer Therapy/Gynecologic Oncology Group Neurotoxicity 4-item (NTX-4) in patients with advanced ovarian cancer (OC). <i>Methods</i>. Ninety-four women with OC were included. Pearson correlation coefficients were used to examine the convergent validity between the European Quality of Life Survey-5 Dimension-3 Level (EQ-5D-3L) and the Turkish NFOSI-18 and NTX-4. The internal consistencies of the Turkish NFOSI-18 and NTX-4 were calculated using Cronbach’s alpha. Turkish NFOSI-18 and Turkish NTX-4 were readministered to 62 (67.4%) patients with OC after 14–21 days to evaluate test-retest reliability.<i>Results</i>. Turkish NFOSI-18 and Turkish NTX-4 showed excellent internal consistency (Cronbach’s alpha: 0.919 and 0.917, respectively). The test-retest reliability of Turkish NFOSI-18 and Turkish NTX-4 was detected as good to excellent for total score (ICC [95%] = 0.93 [0.88-0.95] and ICC [95%] = 0.90 [0.85-0.94], respectively). Significant correlations were detected between the EQ-5D-3L total score, NFOSI-18 (<i>r</i> = 0.648, <i>p</i> &lt; 0.01), and NTX-4 (<i>r</i> = 0.694, <i>p</i> &lt; 0.01) indicating sufficient convergent validity. <i>Conclusion</i>. The Turkish NFOSI-18 and Turkish NTX-4 are reliable and valid tools to assess disease-related symptoms in patients with advanced OC.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-11-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/5521892","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135291179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Practice Patterns of Medical Oncologists: A Survey of Advance Care Planning in the Outpatient Setting","authors":"Joanna Gotfrit,&nbsp;Macyn Leung,&nbsp;Horia Marginean,&nbsp;Daniel Kobewka,&nbsp;Dean Fergusson,&nbsp;Rachel Goodwin","doi":"10.1155/2023/3119940","DOIUrl":"10.1155/2023/3119940","url":null,"abstract":"<div>\u0000 <p><i>Introduction</i>. Advance care planning (ACP) is an important part of cancer care. We determined the ACP practice patterns of medical oncologists at our academic cancer centre in Canada. <i>Methods</i>. Medical oncologists were invited to participate in a questionnaire in August 2019. Questions were validated by a local survey expert. Twelve multiple-choice questions were included. <i>Results</i>. Seventeen of the 23 eligible oncologists responded. 64% were male, and 76% were in practice for &lt;16 years. Common tumour sites treated by respondents included breast (53%), lung (24%), gastrointestinal (24%), and genitourinary (24%) cancers. Oncologists responded that components of ACP included designating a substitute decision-maker (100%), determining goals of care (100%), making decisions about cardiopulmonary resuscitation (94%), and disposition of property/finances (88%). They discuss ACP with curable vs. incurable patients 6% vs. 93% of the time. While 88% of oncologists reported it would be desirable to initiate ACP discussions in the first 3 visits, in the incurable setting, only 29% reported doing so. Patient characteristics that prompt oncologists to discuss ACP in the first 3 visits in the curative vs. incurable settings include elderly age (23% vs. 59%), poor performance status (47% vs. 88%), and short prognosis (47% vs. 88%). Oncologists thought the most appropriate time to discuss ACP in the curative setting was at the time the patient initiates it (35%), and during visits 2-3 in the incurable setting (41%). The most common barriers to discussing ACP include insufficient time (71%) and too much information for the patient (71%). <i>Conclusions</i>. While medical oncologists believe that discussing ACP with cancer patients in the first few outpatient visits is important, this seldom occurs due to the presence of several barriers.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/3119940","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135774277","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation","authors":"Megan Bowes,&nbsp;Catherine Coyle,&nbsp;Olga Husson,&nbsp;Kimberly Dienes,&nbsp;Rachael Powell","doi":"10.1155/2023/9756000","DOIUrl":"10.1155/2023/9756000","url":null,"abstract":"<div>\u0000 <p><i>Objective</i>. Desmoid-type fibromatosis (DF), a rare benign tumour with similar treatment options to cancer, can adversely impact people’s lives, yet little qualitative research addressing patients’ experiences of DF exists. The present study aimed to understand the day-to-day experiences of individuals with DF and their experiences of healthcare. <i>Methods</i>. Semistructured, qualitative interviews were conducted by phone or email with 20 participants. Inductive thematic analysis was performed, structured with the Framework approach. <i>Results</i>. Many participants reported delays in diagnosis. This was attributed to them ignoring their symptoms or to healthcare professionals lacking awareness of DF. Healthcare experiences varied, with some participants expressing good support. Others felt unsupported, viewing staff as dismissive of difficulties. Comparisons between DF and cancer were commonly discussed. Some participants felt relieved that they did not have cancer; others perceived that their needs were secondary to cancer patients and believed they were treated as less important. Participants discussed negative impact of DF on psychosocial well-being. Chronic pain and activity limitations seemed to impact mood and relationships. <i>Conclusion</i>. Greater awareness and understanding of DF by health professionals may help to reduce diagnostic delay and improve support. Individuals may benefit from being treated by specialist DF teams.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/9756000","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135221327","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the Psychosocial Needs of Adults with Haematological Cancer under Watch-and-Wait: A Qualitative Study","authors":"Katie Russell,&nbsp;Anna Tickle,&nbsp;Nima Moghaddam,&nbsp;Sanchia Biswas","doi":"10.1155/2023/6653645","DOIUrl":"10.1155/2023/6653645","url":null,"abstract":"<div>\u0000 <p><i>Objective</i>. Research reporting the unmet needs of individuals with haematological cancers under watch-and-wait is scarce, despite reports of elevated levels of psychological distress. This qualitative study aimed to explore the psychosocial needs of these individuals, and when these were met, if so at all. <i>Methods</i>. A longitudinal design using semistructured interviews was used. Individuals with a diagnosis of haematological cancer living under watch-and-wait were recruited through online support groups. Participants were each invited to two semistructured interviews, six months apart. Interviews took place in March 2022 and September 2022 and were therefore in the context of the COVID-19 pandemic. All interviews were recorded and transcribed verbatim. Reflexive thematic analysis and pattern-oriented longitudinal analysis were used to analyse the data. <i>Results</i>. Of the fifteen participants interviewed initially, twelve attended a second interview. The sample was predominantly White and female. Across participants and time points, a theme was generated that individuals experienced a “Psychological battle of watch-and-wait.” Under this overarching theme, four themes were constructed: “Understanding the impossible: Cancer that does not require treatment;” “Sense of abandonment under watch and wait;” “The importance of peer connection;” and “Trying to live after COVID-19.” The themes were understood to predominantly represent needs for information, communication, peer support, and emotional support and were most often met when individuals engaged with relevant charities. <i>Conclusion</i>. People living with haematological cancer under watch-and-wait may be at risk of having unmet needs across domains, and without support, these needs will likely remain unmet over time. The findings add to the growing literature base how Oncology and Haematology services can holistically support individuals with indolent cancers to live well alongside their diagnosis.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/6653645","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136068843","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Primary Angiosarcoma of the Breast: A 20-Year Single-Institution Experience in China","authors":"Tian Tian,&nbsp;Yun Li,&nbsp;Yue Yu,&nbsp;Xuchen Cao,&nbsp;Ming Li,&nbsp;Xin Wang","doi":"10.1155/2023/2178615","DOIUrl":"10.1155/2023/2178615","url":null,"abstract":"<div>\u0000 <p><i>Background</i>. Primary angiosarcoma of the breast (PAS) is a rare aggressive tumor with no standardized treatment. The aim of this study was to investigate the characteristics of all primary angiosarcoma of the breast obtained from a single center and the features peculiar to Chinese patients. <i>Methods</i>. The medical records at Tianjin Medical University Cancer Institute and Hospital were retrospectively searched to identify all cases of PAS treated in 2000–2019. <i>Results</i>. Sixteen cases of PAS were identified, and most involved the left breast. Forty percent of young patients had a history of progressive tumor enlargement with localized pain and skin color changes. The diagnostic accuracy rate was 66.7% for MRI, 75% for core-needle aspiration, and 58.3% for intraoperative fast frozen pathology. The most common surgery was modified radical mastectomy (<i>n</i> = 9, 56.25%). All positive margins involved the pectoralis major muscle, and these tumors’ mean size was 8.2 cm. All cases were CD34 positive, and the Ki-67 index was ≥30% in 37.5%. Median local or distant recurrence-free survival was 57.6 months for low-to-moderate-grade tumors and 23.5 months for high-grade tumors. Seventy-five percent of the patients were treated with chemotherapy. The average tumor size in patients with relapse-free survival longer than 3 years was 2.2 cm. <i>Conclusion</i>. Young patients may have larger and softer breast tumors with skin color changes. MRI and core-needle biopsy should be performed preoperatively. A positive surgical margin at pectoralis major should be noted. Breast prosthesis may be a better reconstruction option. Adjuvant chemotherapy and/or radiotherapy should be considered for large tumors with a high Ki-67 index or high-grade tumors.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/2178615","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135511020","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Anticancer Recipe Recommendation Based on Cancer Dietary Knowledge Graph","authors":"Jianchen Tang,&nbsp;Bing Huang,&nbsp;Mingshan Xie","doi":"10.1155/2023/8816960","DOIUrl":"10.1155/2023/8816960","url":null,"abstract":"<div>\u0000 <p>Many recipes contain ingredients with various anticancer effects, which can help users to prevent cancer, as well as provide treatment for cancer patients, effectively slowing the disease. Existing recipe knowledge graph recommendation systems obtain entity feature representations by mining latent connections between recipes and between users and recipes to enhance the performance of the recommendation system. However, it ignores the influence of time on user taste preferences, fails to capture the dependency between them from the user’s dietary records, and is unable to more accurately predict the user’s future recipes. We use the KGAT to obtain the embedding representation of entities, considering the influence of time on users, and recipe recommendation can be viewed as a long-term sequence prediction, introducing LSTM networks to dynamically adjust users’ personal taste preferences. Based on the user’s dietary records, we infer the user’s preference for the future diet. Combined with the cancer knowledge graph, we provide the user with diet recommendations that are beneficial to disease prevention and rehabilitation. To verify the effectiveness and rationality of PPKG, we compared it with three other recommendation algorithms on the self-created datasets, and the extensive experimental results demonstrate that our algorithm performance performs other algorithms, which confirmed the effectiveness of PPKG in dealing with sequence recommendation.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/8816960","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135825343","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reporting Real-World Data on Prostate Cancer Treatment Outcomes to Consumers: The Prostate Cancer Report Card","authors":"Tenaw Tiruye,&nbsp;Kerry Ettridge,&nbsp;Michael O’Callaghan,&nbsp;Kim Moretti,&nbsp;Alex Jay,&nbsp;Braden Higgs,&nbsp;Kerry Santoro,&nbsp;Ganessan Kichenadasse,&nbsp;David Roder,&nbsp;Kerri Beckmann","doi":"10.1155/2023/6660371","DOIUrl":"10.1155/2023/6660371","url":null,"abstract":"<div>\u0000 <p><i>Aim</i>. To describe the process of developing a resource, the “Prostate Cancer Outcomes Report Card,” that provides information for men with prostate cancer and their family members about the outcomes of different treatment approaches. <i>Methods</i>. The project consisted of two phases. The first phase involved analysis of real-world data and translating outcomes into a format that consumers found easy to understand and interpret. The Report Card was developed in consultation with a consumer advisory group (<i>n</i> = 8). The second phase involved refinements of the resource through exploratory qualitative interviews with consumers (<i>n</i> = 14), an online survey among the general public (<i>n</i> = 134), and clinician feedback (<i>n</i> = 8). <i>Results</i>. Consumer engagement to explore preferences about the content and visual presentation from the end-users’ perspective was crucial in designing this report. Consumers required trustworthy, comprehensive, simple, and up-to-date information collated in one place to help them understand the risks and benefits of their treatments. Presenting survival, cancer recurrence, and functional outcomes by treatment type and risk category was highly commended while data on high survival rates were considered reassuring. We identified high levels of unmet psychosocial and supportive care need, with differences in individual preferences around extent of information required. <i>Conclusions</i>. Communicating registry data about real-world outcomes in a consumer-friendly way may help fill a gap in information needs among prostate cancer survivors. Providing relatively simple and easily understandable evidence in a single consumer-oriented report may help prostate cancer survivors become better informed and facilitate patient-provider communication and shared decision making.</p>\u0000 </div>","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"2023 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2023-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1155/2023/6660371","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135854192","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}