Journal of Cancer Policy最新文献

{"title":"“But if you don't know what my needs are, you can't help me\": Health seeking experiences of older Black and Latinx cancer survivors","authors":"Candidus Nwakasi ,&nbsp;Jyotsana Parajuli ,&nbsp;Sarah Ahmed ,&nbsp;Obinna Odo ,&nbsp;Kingsley Udeh ,&nbsp;Chizobam Nweke","doi":"10.1016/j.jcpo.2025.100579","DOIUrl":"10.1016/j.jcpo.2025.100579","url":null,"abstract":"<div><h3>Background</h3><div>More research on minoritized individuals’ health-seeking experiences is necessary to address disparities in cancer survivorship. To fill this critical gap in the literature, this study explored the health-seeking experiences of older Black and Latinx populations in the United States (U.S.), guided by the intersectionality framework.</div></div><div><h3>Method</h3><div>Using a qualitative descriptive design, participants were recruited from the New England region of the U.S. Inclusion criteria were: a) 50 years or older, b) Black or Latinx person or both, c) a history of cancer diagnosis, and d) could speak English or Spanish. A semi-structured interview guide was used for data collection, and data were analyzed using reflexive thematic analysis.</div></div><div><h3>Results</h3><div>A total of 17 (4 men and 13 women) cancer survivors with a mean age of 63.9 years participated in this study. Three main themes relating to health-seeking emerged from the study: 1) views about cancer as stigmatizing or not (“Because you can see how people are staying away from you”); 2) the impact of being a Black or Latinx cancer survivor (“America is a complex one that sometimes you could be neglected”); and the impact of being an immigrant (“If I had no help, why didn't I go back to my country”).</div></div><div><h3>Conclusion</h3><div>Minoritized older cancer survivors may experience what we term the <em>triple jeopardy on health seeking</em> due to the disabling effect of cancer, race/ethnicity, and immigration status/situation.</div></div><div><h3>Policy summary</h3><div>To strengthen health-seeking and eliminate cancer health disparities, it is important to design or enhance policies that address structural inequities, including racism and xenophobia, and support community-oriented programs to reduce cancer-related stigma.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"44 ","pages":"Article 100579"},"PeriodicalIF":2.0,"publicationDate":"2025-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143734969","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Corrigendum to \"Sociodemographic, political, and policy contexts of cancer care: A comparative analysis of countries with the highest survival rates\" [J. Cancer Policy 43 (2025) 100559].","authors":"Alejandra Fuentes-García, Carla Flores-Figueroa, Alondra Castillo-Delgado","doi":"10.1016/j.jcpo.2025.100577","DOIUrl":"https://doi.org/10.1016/j.jcpo.2025.100577","url":null,"abstract":"","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":" ","pages":"100577"},"PeriodicalIF":2.0,"publicationDate":"2025-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143744298","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mismatch between evidence and related clinical recommendations about the treatment of advanced esophageal cancer patients with anticancer drugs: A critical historical review","authors":"Xavier Bonfill Cosp ,&nbsp;Olga Savall-Esteve ,&nbsp;Javier Bracchiglione ,&nbsp;Carolina Requeijo ,&nbsp;Marilina Santero ,&nbsp;Appropriateness of Systemic Oncological Treatments for Advanced Cancer (ASTAC-Study) Research Group","doi":"10.1016/j.jcpo.2025.100580","DOIUrl":"10.1016/j.jcpo.2025.100580","url":null,"abstract":"<div><h3>Purpose</h3><div>to analyze the most robust research and recommendations that have informed the potential superiority of treatments with anticancer drugs over any type of supportive care for advanced esophageal cancer (EC).</div></div><div><h3>Methods</h3><div>We conducted a critical historical review. First, we identified randomized clinical trials (RCTs) from a previous scoping review conducted by our research group, ASTAC, updating the search strategy. Second, we searched for the most important and recognized international clinical practice guidelines (CPGs) in advanced EC. Finally, we performed a systematic document analysis to compare whether the recommendations proposed in the CPGs were supported by the previously identified relevant evidence.</div></div><div><h3>Results</h3><div>We identified and assessed 15 RCTs and 11 CPGs from ESMO (eight), ASCO (two), and NICE (one) published over the last 40 years. There is a clear mismatch between these guidelines' recommendations and the available RCTs regarding the efficacy of anticancer drugs compared to best supportive care (BSC).</div></div><div><h3>Conclusion</h3><div>There is a lack of consistent evidence to support the treatment of advanced EC patients with anticancer drugs, and a notable mismatch exists between the available evidence and the recommendations made by relevant CPGs. As a result, these guidelines may be biased in favoring the use of anticancer drugs over supportive care and in consequence it is advisable to be very prudent when proposing systemic treatments to patients with advanced EC. Further rigorous and independent research is needed to better evaluate the true benefits of anticancer treatments in advanced EC and to update the CPGs accordingly.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"44 ","pages":"Article 100580"},"PeriodicalIF":2.0,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143732079","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Characteristics of professional society oncological drug evaluation in the Netherlands from 2016 to 2020: A retrospective analysis","authors":"B.M.F. Penninx ,&nbsp;M.J. Samson ,&nbsp;A.J. Duits ,&nbsp;J.B. Schnog","doi":"10.1016/j.jcpo.2025.100578","DOIUrl":"10.1016/j.jcpo.2025.100578","url":null,"abstract":"<div><h3>Background</h3><div>In the Netherlands oncological drug approvals by the European Medicines Agency (EMA) are evaluated for added clinical benefit by the cieBOM (commission ‘Beoordeling Oncologische Middelen’). A positive evaluation (further depicted as ‘approval’) by the cieBOM is of value in drug reimbursement decision making. In this study we explore characteristics of drug evaluations by the cieBOM.</div></div><div><h3>Methods</h3><div>We identified new drugs and drug indications for malignant solid tumours approved by the American Food and Drug Administration (FDA) and/or EMA from January 2016 to December 2020 and compared these to assessments by the cieBOM.</div></div><div><h3>Results</h3><div>A total of 136 new drug indications were identified of which 133 were evaluated by the FDA, 111 were evaluated by EMA and 87 were evaluated by cieBOM. The cieBOM initially approved 76 of 104 (73 %) EMA-approved indications, and 76 of 124 (61 %) of all FDA-approved indications. cieBOM approvals were more often based on phase III trials. Neither the percentage of approvals with an OS benefit, nor the magnitude of benefit, nor the hazard ratio for death differed significantly between agencies. PFS and QoL gains for approvals were also similar between agencies.</div></div><div><h3>Discussion</h3><div>The cieBOM evaluated less new drug indications and subsequently approved less often as compared to the EMA and the FDA, with approvals more frequently based on phase III trials. The gain in clinical or surrogate endpoints did not differ between cieBOM and FDA or EMA approvals. Globally, stricter criteria for both selection of studies to be assessed by advisory commissions such as cieBOM and drug approval agencies are needed in order to limit the advent of new drugs and drug indications to only those of high value.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"44 ","pages":"Article 100578"},"PeriodicalIF":2.0,"publicationDate":"2025-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143704570","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Barriers to radiotherapy completion in breast cancer patients: A retrospective analysis from a tertiary hospital in Indonesia","authors":"Marhendra S. Utama ,&nbsp;Setiawan ,&nbsp;Hanna Goenawan ,&nbsp;Soehartati Ghondowiardjo ,&nbsp;Antony A. Adibrata","doi":"10.1016/j.jcpo.2025.100574","DOIUrl":"10.1016/j.jcpo.2025.100574","url":null,"abstract":"<div><h3>Introduction</h3><div>Breast cancer is the most common malignancy among women and a leading cause of cancer-related mortality in Indonesia. Radiotherapy is a crucial treatment modality to improve local control, reduce recurrence, and enhance survival rates. However, access to radiotherapy remains limited, leading to prolonged waiting times and potential treatment incompletion. This study aims to identify key predictors influencing radiotherapy completion and analyze waiting times in a resource-limited setting</div></div><div><h3>Methods</h3><div>A retrospective study was conducted on breast cancer patients who underwent radiotherapy between January 2018 and December 2019 at Hasan Sadikin General Hospital, Indonesia. Data were obtained from the Hospital-Based Cancer Registry (HBCR). Statistical analyses were performed using chi-square and Mann-Whitney U tests to assess factors influencing radiotherapy completion and waiting time.</div></div><div><h3>Results</h3><div>279 Breast cancer patients were included. 77.8 % (n = 217) completed their prescribed radiotherapy. Significant predictors of completion include age, those older than 65 years old tend to do not complete their radiation treatment (p = 0.035). Those receiving treated using Linac radiotherapy had higher completion rates than those treated with Co-60. However, waiting time was not significantly associated with treatment completion (p = 0.427). The median radiotherapy waiting time was 8 weeks (0–40 weeks). Patients with metastatic disease (p &lt; 0.001) and those receiving palliative intent radiotherapy (p &lt; 0.001) experienced significantly shorter waiting times.</div></div><div><h3>Conclusion</h3><div>Radiotherapy completion rates among breast cancer patients in Indonesia remain suboptimal, with access disparities affecting treatment adherence. Addressing logistical and systemic barriers could improve outcomes and enhance cancer care delivery in resource-limited settings.</div></div><div><h3>Plain language summary</h3><div>Breast cancer is the most common cancer among women in Indonesia. Many patients require radiotherapy to prevent the disease from coming back and to improve survival. However, some patients do not complete their treatment due to long waiting times and other challenges. This study looks at how long patients wait for radiotherapy and what factors influence whether they complete treatment. We analyzed the medical records of 279 breast cancer patients who received radiotherapy at Hasan Sadikin General Hospital between 2018 and 2019. We examined their age, radiation therapy tools, waiting time, and whether they completed radiotherapy. We used statistical methods to find patterns and associations between these factors. Our findings suggest that certain groups of patients, especially older individuals and those undergoing curative treatment, may need additional support to complete their radiotherapy.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"44 ","pages":"Article 100574"},"PeriodicalIF":2.0,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143644187","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Availability, affordability and health insurance coverage of breast cancer services in Iran - An analysis based on the Universal Health Coverage-Service Planning Delivery and Implementation tool","authors":"Zahra Goudarzi ,&nbsp;Mojtaba Nouhi ,&nbsp;Majid Heydari ,&nbsp;Leon Bijlmakers","doi":"10.1016/j.jcpo.2025.100571","DOIUrl":"10.1016/j.jcpo.2025.100571","url":null,"abstract":"<div><h3>Background</h3><div>As part of efforts to achieve Universal Health Coverage for priority conditions in Iran, it is crucial to evaluate the breast cancer service package and identify aspects that may require adjustment. This study analyzes the current state of breast cancer service supply, service delivery platforms, health insurance coverage, and patient co-payment levels.</div></div><div><h3>Methods</h3><div>The Universal Health Coverage Compendium (UHCC) developed by WHO served to list and distinguish various types of breast cancer services. Information from health insurance agencies in Iran was obtained on actual service provision in the country. The Universal Health Coverage Service Planning Delivery and Implementation (UHC-SPDI) tool was used to assess the scope of breast cancer service delivery in Iran and human workforce levels, and to identify possible gaps in service coverage.</div></div><div><h3>Results</h3><div>All 73 actions listed as breast cancer services in the UHC-SPDI are provided in the Iranian healthcare system, with a strong reliance on out-patient centers and hospitals rather than primary health care facilities as service delivery platforms, reflecting suboptimal integration of service delivery. Eighty-seven percent of the services are recognized and accepted by health insurance agencies, with cost coverage levels ranging from 20 % for magnetic resonance imaging to 100 % for intravenous targeted therapy for metastasis. Genomic tests and four medicines (Pembrolizumab, Pertuzumab, Anastrozole, and Fluorouracil) are not covered by health insurance.</div></div><div><h3>Conclusion</h3><div>The UHC-SPDI has offered an instrumental framework for a comprehensive assessment of Iran’s national breast cancer service package composition by connecting it to the service delivery system and human resources competencies. There is room for improvement of the breast cancer service package in Iran, not only in terms of their health insurance coverage, but also in terms of their actual delivery.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"44 ","pages":"Article 100571"},"PeriodicalIF":2.0,"publicationDate":"2025-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143644188","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ensuring equitable and affordable access to clean water for people living with cancer in a rural and coastal setting","authors":"Kathie McPeake ,&nbsp;Chloe North ,&nbsp;Emma Townend ,&nbsp;Kelly Dixon ,&nbsp;Louise Jeanes ,&nbsp;Samuel Cooke ,&nbsp;Ros Kane ,&nbsp;Peter Selby ,&nbsp;Mark Lawler ,&nbsp;David Nelson","doi":"10.1016/j.jcpo.2025.100572","DOIUrl":"10.1016/j.jcpo.2025.100572","url":null,"abstract":"<div><h3>Background</h3><div>The UN General Assembly (UNGA) stated that the right-to-water entitles everyone to accessible and affordable water. People living with cancer (PLWC) need water for numerous reasons including hydration, personal hygiene and infection control. In 2023, reports emerged of PLWC in Lincolnshire (UK) disconnecting their water supply from cost fears. We report on innovative ways to ease financial burden and provide equitable and affordable access to clean water for PLWC in rural and coastal settings.</div></div><div><h3>Methods</h3><div>Quantitative data from secondary care and qualitative data from community-practitioners investigating PLWC’s difficulties in accessing a clean and safe water supply were synthesised. A review of existing financial support identified no services directly addressing water. The Lincolnshire Living with Cancer Team approached water provider, Anglian Water sharing concerns, identifying common values, and confirming shared aims. A formal partnership was established to address these inequalities.</div></div><div><h3>Results</h3><div>Initial data reviews showed completion of 25,858 Extra Care Assessments between Jan-Sept 2023 (12 % increase on previous year). This has enabled over 30,000 people with long-term conditions, including PLWC, to access clean and affordable water, a personalised support package for their water bill, including income maximisation, debt management, payment breaks, and bill reductions.</div></div><div><h3>Conclusion</h3><div>Impacts of cancer extend beyond physical health, with many PLWC reporting financial distress. Some PLWC have taken extreme measures to reduce their water consumption when they actually need increased water volumes. A partnership approach between health, voluntary and community sectors with a water provider can help address these inequalities.</div></div><div><h3>Policy summary</h3><div>The study addresses national policy (NHS Long Term Plan 2019) by demonstrating how personalisation can be achieved for PLWC in a rural and coastal county. Internationally, it aligns to The European Code of Cancer Practice and seeks to contribute to its implementation UNGA Resolution 64/292, the universal human right to water and sanitation.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"44 ","pages":"Article 100572"},"PeriodicalIF":2.0,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143636406","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluation of travel time to colorectal cancer care and survival: A cohort study using cancer registry data in Osaka Prefecture, Japan","authors":"Mari Kajiwara Saito ,&nbsp;Shoko Wakamiya ,&nbsp;Kayo Nakata ,&nbsp;Mizuki Shimadzu Kato ,&nbsp;Yoshihiro Kuwabara ,&nbsp;Toshitaka Morishima ,&nbsp;Isao Miyashiro","doi":"10.1016/j.jcpo.2025.100573","DOIUrl":"10.1016/j.jcpo.2025.100573","url":null,"abstract":"<div><h3>Background</h3><div>Cancer care in Japan faces a major challenge in maintaining equity in access and efficiency. Care is provided on the basis of catchment area, referred to as a secondary medical area (SMA); at least one designated cancer care hospital (DCCH) is placed in every SMA. We aimed to evaluate travel time and net survival by SMA among patients diagnosed with colorectal cancer (CRC) in Osaka Prefecture, Japan.</div></div><div><h3>Methods</h3><div>We used cancer registry data for this cohort study and included patients diagnosed with CRC during 2013–2018. We evaluated equality in the utilisation of care by travel time between patients’ addresses and medical institutions for diagnosis or treatment in Osaka Prefecture. Travel time was compared by SMA of residence. We analysed which factors were associated with travel time using quantile regression. Efficiency was evaluated as un-standardised, age-standardised and stage-stratified three-year net survival by SMA of hospital for patients who received surgical resection.</div></div><div><h3>Results</h3><div>Among the 53,301 patients, the estimated median travel time was 27 (interquartile range 14 to 61, 90th percentile 82) minutes. Travel time varied between SMAs of residence by 20 minutes and types of hospital (prefectural DCCH versus non-DCCH) by 15 minutes at most. Regarding net survival, all SMA of hospital were within the 99.8 % control limits. However, around 40 % of hospitals had annual surgical volume below ten.</div></div><div><h3>Conclusions</h3><div>Travel time varied by SMA by 20 minutes at most. Although net survival was equalised across catchment areas, the current situation suggests an over-regionalisation of surgical care. The entire prefecture may need to reallocate resources to achieve higher efficiency.</div></div><div><h3>Policy Summary</h3><div>Reconfiguring cancer care might be inevitable to cut the waste of resource inputs, but access equity should also be considered when centralising care.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"44 ","pages":"Article 100573"},"PeriodicalIF":2.0,"publicationDate":"2025-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143630363","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Measuring the impact of COVID-19 on time to treatment for individuals diagnosed with cancer in Manitoba, Canada using an interrupted time series analysis","authors":"Pascal Lambert ,&nbsp;Katie Galloway ,&nbsp;Allison Feely ,&nbsp;Oliver Bucher ,&nbsp;Piotr Czaykowski ,&nbsp;Pamela Hebbard ,&nbsp;Julian O. Kim ,&nbsp;Marshall Pitz ,&nbsp;Harminder Singh ,&nbsp;Grace Musto ,&nbsp;Kathleen M. Decker","doi":"10.1016/j.jcpo.2025.100576","DOIUrl":"10.1016/j.jcpo.2025.100576","url":null,"abstract":"<div><h3>Background</h3><div>Delays in treatment can lead to increases in cancer morbidity and mortality. There were many concerns that the COVID-19 pandemic led to delays in cancer treatment. Several studies have examined this issue but with serious limitations. We conducted a study that addressed many of these limitations and evaluated changes in first treatment, surgery, systemic therapy, and radiation therapy (RT) during the pandemic for individuals diagnosed with cancer in Manitoba, Canada.</div></div><div><h3>Methods</h3><div>A population-based, quasi-experimental cross-sectional study with an interrupted time series analysis was used to examine time to first treatment (expressed as treatment rates accounting for the competing risk of death) before (January 2015–September 2019) and after (April 2020–December 2022) the COVID-19 pandemic.</div></div><div><h3>Results</h3><div>When compared to the counterfactual scenario without COVID-19, first treatments were not received significantly later during the COVID-19 period for any cancer site. Individuals diagnosed with breast, colon, endocrine, or head and neck cancer had their first treatment within 90 days of diagnosis significantly sooner when comparing the COVID-19 period to the counterfactual. When examining type of treatment within one year of diagnosis, individuals diagnosed with breast cancer had surgery significantly later from April to June 2020 and systemic therapy significantly sooner from April 2020 to September 2021. Individuals diagnosed with colon cancer had surgery significantly sooner from April 2020 to June 2021 and individuals diagnosed with rectal cancer had RT significantly later from January to June 2021.</div></div><div><h3>Conclusions</h3><div>Although significantly impacted by COVID-19, the cancer care system in Manitoba was able to prioritize individuals diagnosed with cancer and modify treatment modalities resulting in no significant delays in first treatment between April 2020 and December 2022.</div></div><div><h3>Policy summary</h3><div>It will be important to assess long-term survival and if unaltered, the ongoing use of strategies first used in the pandemic might be justified.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"44 ","pages":"Article 100576"},"PeriodicalIF":2.0,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143619152","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"‘It felt like finding hope only to lose it again’: A grounded theory study of rare cancer policies in Bulgaria","authors":"Kostadin Kostadinov ,&nbsp;Georgi Iskrov ,&nbsp;Nina Musurlieva ,&nbsp;Rumen Stefanov","doi":"10.1016/j.jcpo.2025.100570","DOIUrl":"10.1016/j.jcpo.2025.100570","url":null,"abstract":"<div><div>Rare cancers, defined by an annual incidence of fewer than 6 per 100,000 cases, pose significant challenges due to their complexity, lack of expertise, and limited treatment options. In Bulgaria, these challenges are compounded by limited resources, fragmented care, and outdated policies. This study investigates policy stakeholder perspectives to identify gaps and propose policy alternatives for rare cancer care in Bulgaria, with implications for the broader European Union (EU) context. A grounded theory qualitative research design was employed to explore stakeholder insights. Eight key stakeholders, including policymakers, healthcare providers, patient advocates, and pharmaceutical representatives, participated in semi-structured interviews. Data was analyzed through thematic coding to map policy gaps and develop viable alternatives. Stakeholders highlighted significant gaps in funding, access to innovative therapies, and care organization. Four policy approaches emerged: Liberal, advocating for inclusivity and decentralized care; Conservative, emphasizing cost control and centralization; Balanced, integrating elements of both; and Status Quo, retaining the current system. While centered on Bulgaria, these findings address universal challenges in rare cancer care, offering a framework adaptable to other EU countries. Adopting tailored policies can reduce disparities, improve patient outcomes, and align national strategies with EU objectives, particularly under Europe’s Beating Cancer Plan and the EU Cancer Mission.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"44 ","pages":"Article 100570"},"PeriodicalIF":2.0,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143610658","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}