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Exploring experiences of reasonable adjustments in cancer care among patients with disabilities and their carers: A focus group study in South West England 残障患者及其照护者在癌症照护中合理调整的经验探讨:英格兰西南部的焦点小组研究。
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-09-18 DOI: 10.1016/j.jcpo.2025.100641
Selin Siviş , Andrew Turner , Hannah Little , Shamim Kholwadia , Ruth Hendy , Fiona Spence , Gifty Markey , Jon Banks

Background

The UK Equality Act 2010 mandates equal access to healthcare for people with disabilities. For those with disabilities who have also been diagnosed with cancer, addressing these needs is complex and multifaceted. Whilst existing research has primarily focused on reasonable adjustments for individuals with learning disabilities or autism, this study broadens the scope to include physical disabilities, cognitive or sensory impairments, and mental health conditions.

Aim

This study aimed qualitatively explore and understand the experiences of individuals with disabilities requiring reasonable adjustments, who have direct or indirect exposure to cancer treatment within the cancer care setting, as well as the experiences of their carers.

Methods

Qualitative study based on seven focus groups with 44 participants who have direct or indirect experience of cancer treatment and experience of one or more of a range of conditions that may require reasonable adjustments. Thematic analysis was used inductively to explore patterns.

Results

Participants described various care pathway adjustments but also noted their limited effectiveness. The main concern was a lack of alignment with individual needs. Three key areas for improvement emerged: (1) communication and coordination (e.g., clearer signposting, longer appointments, better understanding of needs); (2) support for family and carers (e.g., tailored adjustments for caregivers, clearer explanations); and (3) adherence to compassion and empathy (e.g., avoiding jargon, using accessible language, and ensuring patients feel heard).

Conclusion

Reasonable adjustments are necessary but not sufficient for equitable care. Participants emphasised the need for an integrated approach to individual needs to ensure adjustments are both accessible and effective.

Policy summary

An integrated understanding of individuals’ and their family carers’ needs should underpin approaches to reasonable adjustments by healthcare providers. A first step to achieving this is to develop training for healthcare professionals to encompass a broader understanding of reasonable adjustments beyond legal categories.
背景:2010年《联合王国平等法》规定残疾人享有平等的医疗保健机会。对于那些同时被诊断患有癌症的残疾人来说,解决这些需求是复杂和多方面的。虽然现有的研究主要集中在对有学习障碍或自闭症的个体进行合理调整,但这项研究扩大了范围,包括身体残疾、认知或感觉障碍以及精神健康状况。目的:本研究旨在定性地探索和了解在癌症护理环境中直接或间接接受癌症治疗的需要合理调整的残疾个体的经历,以及他们的照顾者的经历。方法:定性研究基于7个焦点小组的44名参与者,他们有直接或间接的癌症治疗经验,并经历了一种或多种可能需要合理调整的条件。主题分析采用归纳分析的方法来探索模式。结果:参与者描述了各种护理路径调整,但也注意到其有限的有效性。主要的担忧是缺乏与个人需求的一致性。出现了三个需要改进的关键领域:(1)沟通和协调(例如,更清楚的指示、更长的预约、更好地了解需要);(2)对家庭和照顾者的支持(例如,为照顾者量身定制调整,更清晰的解释);(3)坚持同情和同理心(例如,避免行话,使用通俗易懂的语言,并确保患者感到被倾听)。结论:合理的调整是必要的,但不足以实现公平护理。与会者强调需要对个人需求采取综合办法,以确保调整既容易获得又有效。政策总结:对个人及其家庭照顾者需求的综合理解应该是医疗保健提供者进行合理调整的基础。实现这一目标的第一步是为医疗保健专业人员开展培训,使其对法律类别之外的合理调整有更广泛的理解。
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引用次数: 0
A comparison of the cost-effectiveness of HPV (self-sampling and health care provider sampling) versus VIA for cervical cancer screening in India 印度宫颈癌筛查HPV(自我抽样和卫生保健提供者抽样)与VIA的成本效益比较
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-09-18 DOI: 10.1016/j.jcpo.2025.100642
Apourv Pant, Gowthaman Thangavel, Stany Mathew, Anita Nath
Cervical cancer ranks as the fourth most common cancer in women globally and the second most prevalent in India. Preventive measures, such as HPV vaccination and various screening methods, are essential. Despite these strategies, the economic burden of cervical cancer remains significant due to its long-term nature and treatment costs. This study evaluates the cost-effectiveness of three screening approaches—VIA, HPV physician sampling, and HPV self-sampling—for women aged 30–65. A Markov-based cost-utility analysis with a lifetime horizon and one-year cycle length was conducted. Model parameters were sourced from peer-reviewed literature, national cancer registries, and health economic studies. Deterministic and probabilistic sensitivity analyses were performed to ensure the robustness of the results. Health Provider HPV sampling yielded the highest Quality-Adjusted Life Years (QALYs) at 5.97 (three years) and 4.28 (five years), compared to VIA’s 4.01 (three years) and 2.9 (five years), and HPV self-sampling’s 4.71 (three years) and 3.41 (five years). Over 30 cycles for 100,000 women, healthcare provider sampling achieved a maximum QALY gain of 13.40. Compared to other methods, it offered a gain of 2.94 QALYs at an incremental cost of 19,409 INR. While VIA screening is cost-saving, it provides reduced health benefits. HPV healthcare provider sampling is more cost-effective in terms of QALYs gained despite higher screening costs. A policy analysis is necessary to achieve 70 % cervical cancer screening coverage in India, focusing on current HPV screening strategies and identifying areas for improvement.
子宫颈癌是全球第四大最常见的女性癌症,在印度排名第二。预防措施,如HPV疫苗接种和各种筛查方法是必不可少的。尽管有这些策略,子宫颈癌的经济负担仍然很大,因为它的长期性和治疗费用。本研究评估了三种筛查方法的成本效益- via, HPV医生抽样和HPV自我抽样-用于30至65岁的女性。基于马尔可夫的成本-效用分析包括生命周期和一年的周期长度。模型参数来源于同行评议文献、国家癌症登记处和卫生经济学研究。进行确定性和概率敏感性分析,以确保结果的稳健性。健康提供者HPV抽样产生的最高质量调整生命年(QALYs)为5.97(3年)和4.28(5年),而VIA为4.01(3年)和2.9(5年),HPV自抽样为4.71(3年)和3.41(5年)。在超过30个周期的10万名妇女中,医疗保健提供者抽样实现了13.40的最大质量aly增益。与其他方法相比,它提供了2.94个QALYs的增益,增量成本为19,409印度卢比。虽然VIA筛查节省了成本,但它提供的健康益处却减少了。尽管筛查成本较高,但HPV医疗保健提供者抽样在获得质量aly方面更具成本效益。为了在印度实现70%的宫颈癌筛查覆盖率,有必要进行政策分析,重点关注当前的HPV筛查战略并确定需要改进的领域。
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引用次数: 0
Psycho-oncology in India 印度的精神肿瘤学。
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-09-16 DOI: 10.1016/j.jcpo.2025.100640
J. Deodhar , P. Nayak , C.S. Pramesh , A. Purushotham
Psychosocial care is essential for high-quality cancer care. Psycho-oncology is a developing discipline globally. A narrative review was conducted of studies published in India from 2000 to 2024 on psychosocial care in patients with cancer. Of 233 papers identified, 85 were included. Distress rates ranged from 22 % to 62 % with the highest being in head and neck and breast cancer. Seven tools for measuring distress have been validated in a few Indian languages. Cancer-related communication revealed high rates of collusion and use of euphemisms. There is a paucity of intervention studies. Few studies described psychosocial issues in children and adolescents and older adults.Therefore, future high-quality intervention and outcome studies are required. There is an urgent need for the inclusion of psycho-oncology in national cancer control policy globally.
心理社会护理对于高质量的癌症护理至关重要。精神肿瘤学是一门全球性的新兴学科。对2000年至2024年在印度发表的关于癌症患者心理社会护理的研究进行了叙述性回顾。在233篇论文中,85篇被收录。焦虑率从22-62%不等,其中头颈癌和乳腺癌的比例最高。七种测量痛苦的工具已经在一些印度语言中得到了验证。与癌症相关的交流表明,相互勾结和使用委婉语的比例很高。干预研究很少。很少有研究描述儿童、青少年和老年人的社会心理问题。因此,未来需要进行高质量的干预和结果研究。迫切需要将精神肿瘤学纳入全球国家癌症控制政策。
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引用次数: 0
Therapeutic value of oncology drugs approved by Health Canada through Project Orbis: a cross-sectional study 加拿大卫生部通过Orbis项目批准的肿瘤药物的治疗价值:一项横断面研究
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-08-23 DOI: 10.1016/j.jcpo.2025.100635
Joel Lexchin

Background

In May 2019, the US Food and Drug Administration (FDA) initiated Project Orbis with the aim of providing patients faster access to promising cancer treatments by promoting coordination with international regulatory agencies, including Health Canada. This study evaluates the additional therapeutic value of drugs approved by Health Canada through Project Orbis.

Methods

The FDA list of drugs approved through Project Orbis until the end of 2024 was downloaded and drugs that Health Canada participated in were identified. The type of approval that Health Canada gave these drugs – standard, priority and Notice of Compliance with conditions (NOC/c, conditional approval) was identified. The additional therapeutic value of the drugs (major, moderate and minor) was assessed from the ratings of four international organizations. The distribution of additional therapeutic value (minor, moderate, major) according to review type was compared using a Chi-square test.

Results

The FDA approved 68 drugs for 112 indications of which 49 (72.1 %) drugs were reviewed by Health Canada for 78 (69.6 %) indications (30 new drugs and 48 new indications for existing drugs). The manufacturer withdrew one drug from the approval process leaving 77 new drugs and new indications for analysis. Twenty-eight drugs had a standard review, 31 a priority review and 18 a NOC/c review. The distribution of additional therapeutic value by review type was statistically significantly different, p = 0.0052 (Chi-square test). Sixteen (69.6 %) out of 23 drugs with a priority review offered either moderate (10) or major (6) additional therapeutic gains. Only 12 of the remaining 40 drugs with a therapeutic evaluation that had other types of approval had moderate or major additional therapeutic value.

Conclusion

The results of this study suggest that Health Canada’s participation in Project Orbis should concentrate on drugs that qualify for a priority review.
2019年5月,美国食品和药物管理局(FDA)启动了Orbis项目,旨在通过促进与包括加拿大卫生部在内的国际监管机构的协调,让患者更快地获得有希望的癌症治疗方法。这项研究评估了加拿大卫生部通过奥比斯项目批准的药物的附加治疗价值。方法下载FDA截止2024年底通过Orbis项目批准的药物清单,并对加拿大卫生部参与的药物进行鉴定。确定了加拿大卫生部批准这些药物的类型——标准、优先和符合条件通知(NOC/c,有条件批准)。根据四个国际组织的评级对药物(主要、中等和次要)的附加治疗价值进行评估。根据复习类型比较附加治疗价值(轻度、中度、重度)的分布,采用卡方检验。结果FDA批准了68种药物的112种适应症,其中49种(72.1 %)药物的78种(69.6% %)适应症获得了加拿大卫生部的审查(30种新药和48种现有药物的新适应症)。生产商从审批程序中撤回了一种药物,留下77种新药和新的适应症供分析。28种药物进行了标准审评,31种为优先审评,18种为NOC/c审评。不同复习类型的附加治疗价值分布差异有统计学意义,p = 0.0052(卡方检验)。在23种优先审查的药物中,有16种(69.6 %)提供了中等(10)或主要(6)的额外治疗效果。在剩余的40种具有其他类型批准的治疗评价的药物中,只有12种具有中等或主要的额外治疗价值。结论本研究的结果表明,加拿大卫生部参与奥比斯项目时应将重点放在有资格优先审查的药物上。
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引用次数: 0
Assessing and comparing patient engagement in clinical cancer research: A cross-regional analysis between Europe and Japan using a structured evaluation tool 评估和比较临床癌症研究中的患者参与:使用结构化评估工具的欧洲和日本之间的跨区域分析
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-08-22 DOI: 10.1016/j.jcpo.2025.100634
Laureline Gatellier , Beatrice Serckx , Lode Dewulf , Nicholas Brooke , Bertrand Tombal , Hadrien Charvat , Keiko Katsui , Yoshiyuki Majima , Jin Higashijima , Kazuyuki Suzuki , Ingrid Klingmann , Beata Juzyna , Iryna Shakhnenko , Kenichi Nakamura , Tomohiro Matsuda

Background

Meaningful patient engagement (PE) is increasingly recognized as a critical element of clinical cancer research. Policy frameworks in Europe and Japan reflect growing support for involving patients in research and policymaking. However, tools to assess the actual implementation of PE in clinical trials remain limited. This study introduces a structured, self-evaluation tool for principal investigators (PIs) to assess PE and compares its application to academic trials across Europe and Japan.

Methods

A two-dimensional matrix was developed to evaluate PE across eight key research steps—research priorities, fundraising, protocol development, informed consent, ethical review, investigator meetings, reporting, and regulatory submission—against five engagement levels (0: none to 4: co-creation). The tool was refined to ensure linguistic and contextual applicability in both regions. A structured questionnaire incorporating the matrix was distributed to PIs identified from public databases. Statistical analyses were conducted to compare PE practices between both regions.

Results

Among 178 European and 123 Japanese trials, PI response rate were 24.2 % (n = 43) and 52.0 % (n = 64), respectively. Across all research steps, 60.7 % of European and 80.6 % of Japan trials contained no PE. However, PE was reported in at least one step in 86.0 % of European and 39.1 % of Japanese trials. When engaging, European trials showed higher levels in protocol development, informed consent, ethical review, and reporting steps than Japan (p < 0.001 for all).

Conclusion

This study developed a simple, structured tool to assess PE and applied it to trials in Europe and Japan. It revealed regional differences across culturally and structurally distinct systems, demonstrating its value for cross-context comparison and broader application.

Policy summary

By enabling structured assessment and monitoring of PE, this tool supports the implementation of engagement policies across regions. Its adaptability may foster shared learning and cross-border collaboration, especially in regions where engagement frameworks are still emerging.
有意义的患者参与(PE)越来越被认为是临床癌症研究的一个关键因素。欧洲和日本的政策框架反映出越来越多的人支持让患者参与研究和决策。然而,评估PE在临床试验中的实际实施的工具仍然有限。本研究为主要研究者(pi)引入了一种结构化的自我评估工具来评估PE,并比较了其在欧洲和日本的学术试验中的应用。方法开发了一个二维矩阵,根据五个参与水平(0:无参与到4:共同创造)评估八个关键研究步骤(研究优先级、筹款、方案制定、知情同意、伦理审查、研究者会议、报告和监管提交)的PE。该工具经过改进,以确保在两个地区的语言和上下文的适用性。将包含矩阵的结构化问卷分发给从公共数据库确定的pi。对两个地区的体育实践进行了统计分析比较。结果178项欧洲试验和123项日本试验中,PI有效率分别为24.2% % (n = 43)和52.0 % (n = 64)。在所有的研究步骤中,60.7% %的欧洲试验和80.6% %的日本试验没有PE。然而,在86.0 %的欧洲试验和39.1% %的日本试验中,至少有一步发生了PE。在参与试验时,欧洲试验在方案制定、知情同意、伦理审查和报告步骤方面的水平高于日本(p <; 0.001)。本研究开发了一种简单、结构化的评估PE的工具,并将其应用于欧洲和日本的试验。它揭示了文化和结构不同的系统之间的区域差异,显示了跨背景比较的价值和更广泛的应用。政策摘要通过对教育教育进行结构化评估和监测,该工具支持跨区域实施参与政策。它的适应性可以促进共享学习和跨境合作,特别是在参与框架仍在形成的地区。
{"title":"Assessing and comparing patient engagement in clinical cancer research: A cross-regional analysis between Europe and Japan using a structured evaluation tool","authors":"Laureline Gatellier ,&nbsp;Beatrice Serckx ,&nbsp;Lode Dewulf ,&nbsp;Nicholas Brooke ,&nbsp;Bertrand Tombal ,&nbsp;Hadrien Charvat ,&nbsp;Keiko Katsui ,&nbsp;Yoshiyuki Majima ,&nbsp;Jin Higashijima ,&nbsp;Kazuyuki Suzuki ,&nbsp;Ingrid Klingmann ,&nbsp;Beata Juzyna ,&nbsp;Iryna Shakhnenko ,&nbsp;Kenichi Nakamura ,&nbsp;Tomohiro Matsuda","doi":"10.1016/j.jcpo.2025.100634","DOIUrl":"10.1016/j.jcpo.2025.100634","url":null,"abstract":"<div><h3>Background</h3><div>Meaningful patient engagement (PE) is increasingly recognized as a critical element of clinical cancer research. Policy frameworks in Europe and Japan reflect growing support for involving patients in research and policymaking. However, tools to assess the actual implementation of PE in clinical trials remain limited. This study introduces a structured, self-evaluation tool for principal investigators (PIs) to assess PE and compares its application to academic trials across Europe and Japan.</div></div><div><h3>Methods</h3><div>A two-dimensional matrix was developed to evaluate PE across eight key research steps—research priorities, fundraising, protocol development, informed consent, ethical review, investigator meetings, reporting, and regulatory submission—against five engagement levels (0: none to 4: co-creation). The tool was refined to ensure linguistic and contextual applicability in both regions. A structured questionnaire incorporating the matrix was distributed to PIs identified from public databases. Statistical analyses were conducted to compare PE practices between both regions.</div></div><div><h3>Results</h3><div>Among 178 European and 123 Japanese trials, PI response rate were 24.2 % (n = 43) and 52.0 % (n = 64), respectively. Across all research steps, 60.7 % of European and 80.6 % of Japan trials contained no PE. However, PE was reported in at least one step in 86.0 % of European and 39.1 % of Japanese trials. When engaging, European trials showed higher levels in protocol development, informed consent, ethical review, and reporting steps than Japan (<em>p</em> &lt; 0.001 for all).</div></div><div><h3>Conclusion</h3><div>This study developed a simple, structured tool to assess PE and applied it to trials in Europe and Japan. It revealed regional differences across culturally and structurally distinct systems, demonstrating its value for cross-context comparison and broader application.</div></div><div><h3>Policy summary</h3><div>By enabling structured assessment and monitoring of PE, this tool supports the implementation of engagement policies across regions. Its adaptability may foster shared learning and cross-border collaboration, especially in regions where engagement frameworks are still emerging.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"46 ","pages":"Article 100634"},"PeriodicalIF":2.0,"publicationDate":"2025-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144912721","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}
引用次数: 0
Financial burden due to distance traveled to access treatment from specialized cancer hospitals in public sector in India: a case study of patients treated for gastric and pancreatic cancer 前往印度公共部门癌症专科医院接受治疗的路程所造成的经济负担:对胃癌和胰腺癌患者的个案研究
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-08-15 DOI: 10.1016/j.jcpo.2025.100632
Mohit Pandey , T.R. Dilip , Amit Chopade , Shailesh V. Shrikhande , Manish Bhandare

Background

Cancer care offered in India and large part of the world is heterogenous with few regions having dedicated high volume centres with established referral patterns. Due to scarcity of the specialized units treating cancer, patients often have to travel for long distances for medical care. Our study examines the impact of additional financial burden (non-medical expenses) on cancer patients’ families due to long distance travelled while seeking treatment for gastric and pancreatic cancer.

Methods

The data (n = 244) were collected as part of a prospective, non-interventional cohort study, conducted at Tata Memorial Hospital (TMH), Mumbai, India. Consecutive patients with gastric and pancreatic cancers. The medical and non-medical expenditures were collected for each visit along with other cancer specific and treatment details. Distress financing defined as borrowing money or selling assets to meet treatment-related expenses.

Findings

The mean distance travelled by patients was 1475 km. 63.1 % of patients travelled greater than 1500 km. The mean Non-Medical Health Expenditure (NMHE) for patients traveling more than 1500 km was ₹107,040 ($1278), nearly two times higher than the expenditure for patients traveling less than 500 km, ₹49,112 ($587). A total of 42.9 % of NMHE was spent on travel, 33.3 % on accommodation, and 17.2 % on food. The logistic regression results depict that patients traveling > 500 km are three times more likely to experience Catastrophic NMHE (CNMHE) compared to < 500 km. The distress health financing due to cancer treatment was 39.3 %. Distress health financing was higher with CNMHE at 25 % (52.8 %) compared to CNMHE at 10 % (45.8 %), and was two times higher in patients travelling > 500 km compared to < 500 km

Conclusion

A structured decentralization of cancer care is the need of the hour to negate the additional financial burden and CNMHE experienced by the cancer patients and their families. If adequate infrastructure is provided at the non-urban areas, well trained oncologists can be deployed in hospitals closer to patients homes to treat cancers at earlier stage.
背景:印度和世界大部分地区提供的癌症治疗是异质性的,很少有地区拥有专门的高容量中心,并建立了转诊模式。由于治疗癌症的专门单位很少,病人常常不得不长途跋涉去看病。我们的研究考察了癌症患者在寻求胃癌和胰腺癌治疗时长途旅行对其家庭的额外经济负担(非医疗费用)的影响。方法数据(n = 244)是在印度孟买塔塔纪念医院(TMH)进行的一项前瞻性、非干预性队列研究的一部分。连续的胃癌和胰腺癌患者。每次就诊的医疗和非医疗费用以及其他癌症特异性和治疗细节都被收集起来。紧急融资被定义为借钱或出售资产以支付与治疗相关的费用。患者平均行走距离为1475 km。63.1 %的患者行程大于1500 公里。旅行超过1500 公里的患者的平均非医疗卫生支出(NMHE)为107,040卢比(1278美元),比旅行少于500 公里的患者的支出高出近两倍,49,112卢比(587美元)。NMHE的42.9% %用于旅行,33.3% %用于住宿,17.2% %用于食品。逻辑回归结果显示,与旅行>; 500 公里的患者相比,旅行>; 500 公里的患者经历灾难性NMHE (CNMHE)的可能性是前者的三倍。因癌症治疗造成的健康窘迫占39.3% %。与CNMHE的10 %(45.8 %)相比,CNMHE的痛苦健康融资更高,为25 %(52.8 %),并且在旅行>; 500 km的患者中比<; 500 km的患者高出两倍。结论癌症护理的结构化分散化需要一小时来抵消癌症患者及其家属所经历的额外经济负担和CNMHE。如果在非城市地区提供足够的基础设施,训练有素的肿瘤学家可以部署到离病人家更近的医院,在早期治疗癌症。
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引用次数: 0
Navigating cost and care: A qualitative study on oncologists’ perspectives on financial toxicity in India 导航成本和护理:一项关于肿瘤学家对印度金融毒性观点的定性研究
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-08-11 DOI: 10.1016/j.jcpo.2025.100633
Parth Sharma , Bhavna Seth , Vid Karmarkar , Pooja Sharma

Background

This study aimed to explore oncologists’ perspectives on how financial toxicity (FT) shapes clinical decision-making and to identify potential solutions to reduce its impact.

Methods

We conducted a qualitative study using semi-structured interviews with nineteen oncologists working across public, private, and not-for-profit hospitals in nine Indian states. The interviews were audio-recorded, transcribed, and analyzed till thematic analysis until data saturation was achieved.

Results

The oncologists reported that FT impacted their decision making in four ways:1) Tailoring treatment discussions, 2) Diagnostic adaptations, e.g. avoiding expensive diagnostic tests, 3) Treatment modification, e.g. using treatment protocols based on local research or using generic drugs, and 4) Referral of patients to government centers from private centers. Financial status was assessed by an assessment committee, administrator, clinician, nurse, or social worker. Understanding methods of distress financing, checking eligibility for treatment schemes, and assessing socioeconomic status, expenditure capacity, and insurance coverage were some of the methods used for the financial assessment of patients. Participants suggested improvements at 1) Health system level - expanding public insurance, regulating private hospital pricing, strengthening district-level cancer care, and improving the availability of affordable generic medications, 2) Hospital-level - establishing patient assistance programs, financial navigation services, grievance redressal systems, and multidisciplinary tumor boards to guide evidence-based, cost-conscious care and 3) Provider level - clear, empathetic shared-decision making communication, thoughtful clinical judgment, early palliative care integration, and engaging with policymakers to advocate for broader reforms.

Conclusion

Oncologists in India routinely adapt to account for patients’ financial limitations. Addressing financial toxicity requires coordinated interventions at the system, hospital, and provider levels to ensure equitable, affordable access to cancer care.

Policy summary

This paper highlights the need for a comprehensive National Cancer Policy in India and the need to expand coverage of the government-funded health insurance schemes.
本研究旨在探讨肿瘤学家对财务毒性(FT)如何影响临床决策的看法,并确定减少其影响的潜在解决方案。方法采用半结构化访谈对印度9个邦公立、私立和非营利性医院的19名肿瘤学家进行了定性研究。对访谈进行录音、转录和分析,直到专题分析,直到达到数据饱和。结果肿瘤学家报告说,FT在四个方面影响了他们的决策:1)调整治疗讨论;2)诊断适应,例如避免昂贵的诊断测试;3)治疗修改,例如使用基于当地研究或使用仿制药的治疗方案;4)将患者从私人中心转介到政府中心。财务状况由评估委员会、行政人员、临床医生、护士或社工评估。了解困境融资的方法,检查治疗方案的资格,评估社会经济地位,支出能力和保险覆盖范围是用于患者财务评估的一些方法。与会者建议在以下方面进行改进:1)卫生系统层面——扩大公共保险,规范私立医院的定价,加强地区一级的癌症护理,提高可负担得起的仿制药的可获得性;2)医院层面——建立患者援助计划、财务导航服务、申诉补救系统和多学科肿瘤委员会,以指导循证、成本意识强的护理;共情的共同决策沟通、深思熟虑的临床判断、早期姑息治疗整合,以及与政策制定者接触,倡导更广泛的改革。结论:印度的肿瘤学家经常适应患者的经济限制。解决财务毒性问题需要在系统、医院和提供者层面进行协调干预,以确保公平、负担得起的癌症治疗。本文强调了印度需要一个全面的国家癌症政策,需要扩大政府资助的健康保险计划的覆盖范围。
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引用次数: 0
Barriers and enablers of research engagement among multidisciplinary cancer care professionals in Ireland: A mixed-methods study 爱尔兰多学科癌症护理专业人员研究参与的障碍和促成因素:一项混合方法研究。
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-08-07 DOI: 10.1016/j.jcpo.2025.100630
Amanda Drury , Christopher Crockford

Rationale

Nurses and health and social care professionals (HSCPs) are integral to multidisciplinary cancer care and are well-positioned to engage in research that enhances patient outcomes. However, unlike medical professionals, non-medical clinicians often face substantial barriers to research engagement, including limited institutional support, time constraints, and lack of research training and mentorship.

Aim

To explore the barriers and enablers to research activity among nurses and HSCPs working in clinical cancer care settings in Ireland.

Methods

A mixed methods design was used. Phase 1 consisted of a stakeholder consultation workshop (n = 14) to qualitatively identify research barriers and enablers. Phase 2 involved a cross-sectional questionnaire (n = 157) assessing participants’ research capacity, activity, and influencing factors using the Research Capacity and Culture (RCC) tool and additional study-specific items.

Results

Key barriers identified included lack of protected research time (64.3 %), funding (65.0 %) and resourcing/support (64.3 %). Participants reported moderate individual research skills, particularly in literature review and data collection, but lower confidence in research leadership activities, including grant writing, budgeting, and protocol development. Despite barriers, 73.9 % of participants expressed interest in research activities, especially in data collection, analysis, and project leadership. Access to academic-clinical partnerships, supportive management, and training opportunities were cited as critical enablers.

Conclusions

There is significant untapped potential for research engagement among non-medical cancer care professionals in Ireland. Organizational investment in protected research time, mentorship, and targeted training is essential to build research capacity, support clinician-led research, and improve outcomes for patients and healthcare systems alike.
理由:护士和健康与社会护理专业人员(hscp)是多学科癌症护理不可或缺的组成部分,并且能够很好地参与提高患者预后的研究。然而,与医疗专业人员不同,非医疗临床医生在参与研究方面往往面临重大障碍,包括有限的机构支持、时间限制以及缺乏研究培训和指导。目的:探讨障碍和使能者之间的研究活动护士和hscp工作在临床癌症护理设置在爱尔兰。方法:采用混合方法设计。第一阶段包括一个利益相关者咨询研讨会(n=14),以定性地确定研究障碍和推动因素。第二阶段采用横断面问卷(n=157)评估参与者的研究能力、活动和影响因素,使用研究能力和文化(RCC)工具和其他研究特定项目。结果:确定的主要障碍包括缺乏受保护的研究时间(64.3%)、资金(65.0%)和指导。参与者报告了一般的个人研究技能,特别是在文献综述和数据收集方面,但在拨款写作、预算编制和方案制定方面的信心较低。尽管存在障碍,73.9%的参与者表示对研究活动感兴趣,特别是在数据收集、分析和项目领导方面。获得学术-临床合作伙伴关系、支持性管理和培训机会被认为是关键的促成因素。结论:在爱尔兰的非医疗癌症护理专业人员中,研究参与具有重要的未开发潜力。组织在受保护的研究时间、指导和有针对性的培训方面的投资对于建立研究能力、支持临床医生主导的研究以及改善患者和医疗保健系统的结果至关重要。
{"title":"Barriers and enablers of research engagement among multidisciplinary cancer care professionals in Ireland: A mixed-methods study","authors":"Amanda Drury ,&nbsp;Christopher Crockford","doi":"10.1016/j.jcpo.2025.100630","DOIUrl":"10.1016/j.jcpo.2025.100630","url":null,"abstract":"<div><h3>Rationale</h3><div>Nurses and health and social care professionals (HSCPs) are integral to multidisciplinary cancer care and are well-positioned to engage in research that enhances patient outcomes. However, unlike medical professionals, non-medical clinicians often face substantial barriers to research engagement, including limited institutional support, time constraints, and lack of research training and mentorship.</div></div><div><h3>Aim</h3><div>To explore the barriers and enablers to research activity among nurses and HSCPs working in clinical cancer care settings in Ireland.</div></div><div><h3>Methods</h3><div>A mixed methods design was used. Phase 1 consisted of a stakeholder consultation workshop (n = 14) to qualitatively identify research barriers and enablers. Phase 2 involved a cross-sectional questionnaire (n = 157) assessing participants’ research capacity, activity, and influencing factors using the Research Capacity and Culture (RCC) tool and additional study-specific items.</div></div><div><h3>Results</h3><div>Key barriers identified included lack of protected research time (64.3 %), funding (65.0 %) and resourcing/support (64.3 %). Participants reported moderate individual research skills, particularly in literature review and data collection, but lower confidence in research leadership activities, including grant writing, budgeting, and protocol development. Despite barriers, 73.9 % of participants expressed interest in research activities, especially in data collection, analysis, and project leadership. Access to academic-clinical partnerships, supportive management, and training opportunities were cited as critical enablers.</div></div><div><h3>Conclusions</h3><div>There is significant untapped potential for research engagement among non-medical cancer care professionals in Ireland. Organizational investment in protected research time, mentorship, and targeted training is essential to build research capacity, support clinician-led research, and improve outcomes for patients and healthcare systems alike.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"45 ","pages":"Article 100630"},"PeriodicalIF":2.0,"publicationDate":"2025-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144812545","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}
引用次数: 0
Direct and indirect costs of breast cancer management in Sub-Saharan Africa 撒哈拉以南非洲地区乳腺癌管理的直接和间接费用。
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-08-05 DOI: 10.1016/j.jcpo.2025.100629
Irénée Ahindu Konga , Vanina Pofagi , Alexis Parenté , Freddy Gnangnon , Dismand Houinato , Clémence Thébaut

Background

In Benin, breast cancer is the leading cause of cancer-related mortality among women, with 566 deaths reported in 2020. The cost of its management remains poorly understood, although its estimation is essential for assessing the implementation of public health policies, particularly in a resource-limited setting. This study aims to estimate the direct and indirect costs of breast cancer management from the patients' perspective.

Methods

This cross-sectional study was conducted in three healthcare facilities in Cotonou, collecting healthcare expenditures from 104 breast cancer patients through a structured questionnaire. A linear regression analysis was performed to identify factors influencing direct medical costs.

Results

The average direct medical cost of breast cancer management in Benin was estimated at US$ 4768.3 (± US$ 774.7). The median productivity loss cost, based on patient-reported data, was US$ 954.4 (IQR = US$ 477.2 – US$ 1336.1). Chemotherapy accounted for 38.5 % of the direct medical costs. An advanced disease stage was significantly associated with higher medical costs (coefficient = 0.50; p = 0.007).

Conclusion

Breast cancer leads to high direct and indirect costs, especially in the advanced stages of the disease in Sub-Saharan Africa. These findings highlight the need for the implementation of early screening programs to reduce costs.
背景:在贝宁,乳腺癌是妇女癌症相关死亡的主要原因,2020年报告有566人死亡。尽管对其管理成本的估计对于评估公共卫生政策的执行情况至关重要,特别是在资源有限的情况下,但对其管理成本的了解仍然很少。本研究旨在从患者的角度估计乳腺癌治疗的直接和间接成本。方法:本横断面研究在科托努的三家医疗机构进行,通过结构化问卷收集了104名乳腺癌患者的医疗支出。采用线性回归分析确定影响直接医疗费用的因素。结果:贝宁乳腺癌治疗的平均直接医疗费用估计为4,768.3美元(±774.7美元)。根据患者报告的数据,生产力损失成本中位数为954.4美元(IQR = 477.2美元- 1336.1美元)。化疗费用占直接医疗费用的38.5%。疾病晚期与较高的医疗费用显著相关(系数= 0.50;P = 0.007)。结论:乳腺癌导致高昂的直接和间接费用,特别是在撒哈拉以南非洲的疾病晚期。这些发现强调了实施早期筛查项目以降低成本的必要性。
{"title":"Direct and indirect costs of breast cancer management in Sub-Saharan Africa","authors":"Irénée Ahindu Konga ,&nbsp;Vanina Pofagi ,&nbsp;Alexis Parenté ,&nbsp;Freddy Gnangnon ,&nbsp;Dismand Houinato ,&nbsp;Clémence Thébaut","doi":"10.1016/j.jcpo.2025.100629","DOIUrl":"10.1016/j.jcpo.2025.100629","url":null,"abstract":"<div><h3>Background</h3><div>In Benin, breast cancer is the leading cause of cancer-related mortality among women, with 566 deaths reported in 2020. The cost of its management remains poorly understood, although its estimation is essential for assessing the implementation of public health policies, particularly in a resource-limited setting. This study aims to estimate the direct and indirect costs of breast cancer management from the patients' perspective.</div></div><div><h3>Methods</h3><div>This cross-sectional study was conducted in three healthcare facilities in Cotonou, collecting healthcare expenditures from 104 breast cancer patients through a structured questionnaire. A linear regression analysis was performed to identify factors influencing direct medical costs.</div></div><div><h3>Results</h3><div>The average direct medical cost of breast cancer management in Benin was estimated at US$ 4768.3 (± US$ 774.7). The median productivity loss cost, based on patient-reported data, was US$ 954.4 (IQR = US$ 477.2 – US$ 1336.1). Chemotherapy accounted for 38.5 % of the direct medical costs. An advanced disease stage was significantly associated with higher medical costs (coefficient = 0.50; p = 0.007).</div></div><div><h3>Conclusion</h3><div>Breast cancer leads to high direct and indirect costs, especially in the advanced stages of the disease in Sub-Saharan Africa. These findings highlight the need for the implementation of early screening programs to reduce costs.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"45 ","pages":"Article 100629"},"PeriodicalIF":2.0,"publicationDate":"2025-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144769177","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}
引用次数: 0
Long-term quality of life and quality adjusted life years after breast cancer: Impact of detection mode, tumor characteristics and treatment 乳腺癌后长期生活质量及质量调整生命年:检测方式、肿瘤特征及治疗的影响
IF 2 Q3 HEALTH POLICY & SERVICES Pub Date : 2025-08-05 DOI: 10.1016/j.jcpo.2025.100631
Nataliia Moshina , Ragnhild S. Falk , Edoardo Botteri , Marthe Larsen , Lars A. Akslen , Giske Ursin , John A. Cairns , Solveig Hofvind

Background

Health-related quality of life (HRQoL) of breast cancer survivors has been extensively evaluated. However, HRQoL differences for women diagnosed by organized mammographic screening and women diagnosed due to symptoms have been sparsely described. We aimed to compare self-reported long-term HRQoL and quality adjusted life years (QALYs) between women with screen-detected breast cancer and women with symptomatic breast cancer, adjusting for histopathologic tumor characteristics and treatment.

Methods

This study was nested within a cohort of women diagnosed with breast cancer by organized mammographic screening or due to symptoms 2006–2017 who responded a questionnaire measuring HRQoL (VAS, 0–100) and EQ-5D-5L 2019–2020. Responses to EQ-5D-5L were transformed into health utility values using a tariff based on preferences elicited in a national survey. Multivariable linear regression models were used to compare VAS-scores adjusting for tumor characteristics and treatment. QALYs were estimated by summing up the health utility values between the third and the fifth year since breast cancer diagnosis adjusting for breast cancer survival.

Results

Mean HRQoL (VAS) was 66.2 (standard deviation, SD: 21.1) for women with screen-detected breast cancer (n = 1141) and 62.5 (SD: 21.2) for women with symptomatic breast cancer (n = 1561). Women with screen-detected breast cancer had 3.8 (95 % confidence interval, CI, 2.3, 5.4) and 3.7 (95 %CI 2.1, 5.2) higher HRQoL VAS-scores compared to women with symptomatic breast cancer in the models adjusted for tumor characteristics and treatment, respectively. Women with screen-detected breast cancer and women with symptomatic breast cancer accrued 2.30 and 2.06 QALYs, respectively.

Conclusion

Women with screen-detected breast cancer demonstrated higher estimates of long-term HRQoL and QALYs compared to women with symptomatic cancer.

Policy Summary

More favorable long-term quality of life outcomes were shown for women diagnosed with breast cancer by organized mammographic screening compared to women diagnosed due to symptoms.
背景:乳腺癌幸存者的健康相关生活质量(HRQoL)已被广泛评估。然而,通过有组织的乳房x光检查诊断的妇女和因症状诊断的妇女的HRQoL差异很少被描述。我们的目的是比较自我报告的长期HRQoL和质量调整生命年(QALYs)在筛查发现乳腺癌的妇女和有症状的乳腺癌妇女之间,调整组织病理学肿瘤特征和治疗。方法:本研究纳入了2006-2017年通过有组织的乳房x线摄影筛查或因症状诊断为乳腺癌的女性队列,她们回答了测量HRQoL (VAS, 0-100)和EQ-5D-5L 2019-2020的问卷。对EQ-5D-5L的反应被转化为健康效用价值,使用基于全国调查中得出的偏好的关税。采用多变量线性回归模型比较调整肿瘤特征和治疗的vas评分。通过总结乳腺癌诊断后第三年至第五年的健康效用值来估计质量年,并根据乳腺癌生存率进行调整。结果:筛查乳腺癌女性(n=1141)的平均HRQoL (VAS)为66.2(标准差,SD: 21.1),有症状乳腺癌女性(n=1561)的平均HRQoL (VAS)为62.5 (SD: 21.2)。在针对肿瘤特征和治疗进行调整的模型中,筛查检测到乳腺癌的女性的HRQoL vas评分分别比有症状的乳腺癌女性高3.8(95%可信区间,CI, 2.3, 5.4)和3.7(95%可信区间,CI 2.1, 5.2)。筛查出乳腺癌的女性和有症状的乳腺癌女性分别累积了2.30和2.06个QALYs。结论:与有症状的乳腺癌相比,筛查发现乳腺癌的女性表现出更高的长期HRQoL和QALYs估计。政策总结:通过有组织的乳房x光检查诊断为乳腺癌的妇女比通过症状诊断的妇女有更有利的长期生活质量结果。
{"title":"Long-term quality of life and quality adjusted life years after breast cancer: Impact of detection mode, tumor characteristics and treatment","authors":"Nataliia Moshina ,&nbsp;Ragnhild S. Falk ,&nbsp;Edoardo Botteri ,&nbsp;Marthe Larsen ,&nbsp;Lars A. Akslen ,&nbsp;Giske Ursin ,&nbsp;John A. Cairns ,&nbsp;Solveig Hofvind","doi":"10.1016/j.jcpo.2025.100631","DOIUrl":"10.1016/j.jcpo.2025.100631","url":null,"abstract":"<div><h3>Background</h3><div>Health-related quality of life (HRQoL) of breast cancer survivors has been extensively evaluated. However, HRQoL differences for women diagnosed by organized mammographic screening and women diagnosed due to symptoms have been sparsely described. We aimed to compare self-reported long-term HRQoL and quality adjusted life years (QALYs) between women with screen-detected breast cancer and women with symptomatic breast cancer, adjusting for histopathologic tumor characteristics and treatment.</div></div><div><h3>Methods</h3><div>This study was nested within a cohort of women diagnosed with breast cancer by organized mammographic screening or due to symptoms 2006–2017 who responded a questionnaire measuring HRQoL (VAS, 0–100) and EQ-5D-5L 2019–2020. Responses to EQ-5D-5L were transformed into health utility values using a tariff based on preferences elicited in a national survey. Multivariable linear regression models were used to compare VAS-scores adjusting for tumor characteristics and treatment. QALYs were estimated by summing up the health utility values between the third and the fifth year since breast cancer diagnosis adjusting for breast cancer survival.</div></div><div><h3>Results</h3><div>Mean HRQoL (VAS) was 66.2 (standard deviation, SD: 21.1) for women with screen-detected breast cancer (n = 1141) and 62.5 (SD: 21.2) for women with symptomatic breast cancer (n = 1561). Women with screen-detected breast cancer had 3.8 (95 % confidence interval, CI, 2.3, 5.4) and 3.7 (95 %CI 2.1, 5.2) higher HRQoL VAS-scores compared to women with symptomatic breast cancer in the models adjusted for tumor characteristics and treatment, respectively. Women with screen-detected breast cancer and women with symptomatic breast cancer accrued 2.30 and 2.06 QALYs, respectively.</div></div><div><h3>Conclusion</h3><div>Women with screen-detected breast cancer demonstrated higher estimates of long-term HRQoL and QALYs compared to women with symptomatic cancer.</div></div><div><h3>Policy Summary</h3><div>More favorable long-term quality of life outcomes were shown for women diagnosed with breast cancer by organized mammographic screening compared to women diagnosed due to symptoms.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"45 ","pages":"Article 100631"},"PeriodicalIF":2.0,"publicationDate":"2025-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144800570","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}
引用次数: 0
期刊
Journal of Cancer Policy
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