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Developing a ‘Living with Cancer’ programme in a rural and coastal setting: Experiences of collaborative and innovative co-production across an Integrated Health System f在农村和沿海环境中制定“与癌症共存”计划:在综合卫生系统中合作和创新合作生产的经验。
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-11-04 DOI: 10.1016/j.jcpo.2023.100452
Kathie McPeake , Louise Jeanes , David Nelson , Peter Selby , Samuel Cooke , Mark Gussy , Ros Kane

Introduction

With projected increases in cancer prevalence, and demonstrated unmet need, there is an urgency for a collaborative approach to improving the lives of those living with cancer particularly in rural and coastal areas where cancer survivors face unique challenges. We report on an innovative ‘Living with Cancer’ (LWC) programme in the rural and coastal English county of Lincolnshire.

Methods

In 2016, the Lincolnshire LWC programme was established to develop person-centred, local support for people living with cancer, their carers and significant others in Lincolnshire. This article reports on the setup of the LWC programme, our innovative approach to delivering cancer care in a rural and coastal setting, as well as our most salient achievements.

Results

This work, developed within a policy context of tackling health inequalities and personalised approaches to care, started with stakeholder and community engagement where people described the challenges to living well after cancer and the need to focus on 8 themes further exacerbated by rurality. Recognising the limitations of conventional approaches, led to the development of a strategy underpinned by a shared set of principles and a philosophy of the importance of a transformative, whole-system, place-based, asset-based, and person-centred approaches. The strategy is now being coordinated and delivered across all cancer pathways and Lincolnshire communities. In 2022, permanent funding was secured, and our success was also demonstrated by a national Macmillan Integration Excellence award.

Discussion

The initial success of the LWC programme in Lincolnshire is a result of an explicit focus on ‘transformation’ rather than ‘improvement’, and a programme not solely situated in an acute setting, which needed a whole systems approach with a focus on person-centred support and community engagement.

简介:随着癌症发病率的预计增加,以及未满足的需求,迫切需要采取合作方法来改善癌症患者的生活,特别是在癌症幸存者面临独特挑战的农村和沿海地区。我们报道了英国林肯郡农村和沿海县一项创新的“与癌症共存”(LWC)计划。方法:2016年,林肯郡LWC计划成立,旨在为癌症患者、他们的护理人员和林肯郡的重要其他人提供以人为中心的当地支持。本文报道了LWC计划的建立,我们在农村和沿海地区提供癌症护理的创新方法,以及我们最显著的成就。结果:这项工作是在解决健康不平等和个性化护理方法的政策背景下开展的,首先是利益相关者和社区的参与,人们描述了癌症后生活的挑战,以及关注因农村而进一步恶化的8个主题的必要性。认识到传统方法的局限性,制定了一项战略,其基础是一套共同的原则和一套关于变革性、整体系统、基于地点、基于资产和以人为本的方法重要性的哲学。该战略目前正在所有癌症途径和林肯郡社区进行协调和实施。2022年,我们获得了永久资金,国家麦克米伦集成卓越奖也证明了我们的成功。讨论:林肯郡LWC计划的初步成功是明确关注“转型”而非“改进”的结果,而且该计划不仅仅位于一个尖锐的环境中,需要一种以人为中心的支持和社区参与为重点的全系统方法。
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引用次数: 0
The Italian experience with the use of monitoring registers attached to negotiated agreements (MEAs) of the Italian Medicines Agency is a tool for governance and clinical appropriateness 意大利使用意大利药品管理局谈判协议所附监测登记册的经验是治理和临床适用性的工具。
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-11-01 DOI: 10.1016/j.jcpo.2023.100450
Maurizio Capuozzo , Venere Celotto , Alessandro Ottaiano , Andrea Zovi , Roberto Langella , Francesco Ferrara

The use of monitoring registers with annexed negotiation agreements (MEAs) of the Italian Medicines Agency (AIFA) are the pillar of Italian healthcare governance to guarantee the correct allocation of economic healthcare resources. In Italy, an analysis was conducted in the context of a local health authority where all negotiation activities were implemented to verify the amount of reimbursements that can be recovered through the use of all available procedures on the monitoring registers. The purpose of this analysis was to highlight any criticalities which, if not properly addressed by doctors and pharmacists, can lead to considerable financial loss. Correct verification by the hospital pharmacy resulted in an economic recovery of approximately EUR 579,443.40 for the year 2022 and EUR 682,225.30 in the first 9 months of 2023. This analysis is intended to highlight how effective collaboration between doctors and pharmacists can lead to clear economic advantages with an efficient health system to the total benefit of citizens.

使用附有意大利药品管理局谈判协议的监测登记册是意大利医疗保健治理的支柱,以确保经济医疗资源的正确分配。在意大利,在一个地方卫生当局的背景下进行了一项分析,该当局开展了所有谈判活动,以核实通过使用监测登记册上的所有可用程序可以收回的报销金额。这项分析的目的是强调任何批评,如果医生和药剂师不妥善处理,可能会导致相当大的经济损失。医院药房的正确验证导致2022年经济复苏约579443.40欧元,2023年前9个月经济复苏约682225.30欧元。这项分析旨在强调医生和药剂师之间的有效合作如何通过高效的卫生系统带来明显的经济优势,从而使公民完全受益。
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引用次数: 0
Starting and stopping cancer drugs: The need for randomized trials 启动和停止癌症药物:需要随机试验。
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-10-31 DOI: 10.1016/j.jcpo.2023.100451
David J. Benjamin, Vinay Prasad

Precision oncology has gained widespread popularity over the past decade, and increasingly oncologists strive to provide the right treatment to the right patient. To date, precision efforts have focused on the specific mutational target(s), food/ drug interactions, functional oncology, or dose of drug given. Moreover, the tumor and blood samples of hundreds of thousands of patients with cancer have been sequenced in the United States alone with the goal of identifying and prescribing the most precise treatment. Despite this broad consideration of precision oncology, one neglected aspect of precision oncology is identifying the optimal start time and stopping point for cancer therapies. Is it possible to improve overall survival (OS) or quality of life for patients with more precise initiation and discontinuation of therapy? In this commentary, we review the historical basis to initiate, discontinue or switch therapies. We emphasize that largely these time points were selected arbitrarily, and subsequently constrained by historical accident. We highlight randomized efforts to better elucidate the time points in starting or stopping therapy. Finally, we provide suggestions for a research agenda on precision timing of anti-cancer drugs.

在过去的十年里,精准肿瘤学得到了广泛的欢迎,越来越多的肿瘤学家努力为正确的患者提供正确的治疗。到目前为止,精确的工作集中在特定的突变靶点、食物/药物相互作用、功能肿瘤学或给药剂量上。此外,仅在美国就对数十万癌症患者的肿瘤和血液样本进行了测序,目的是确定和开出最精确的治疗方法。尽管对精准肿瘤学进行了广泛的考虑,但精准肿瘤学的一个被忽视的方面是确定癌症治疗的最佳开始时间和停止点。有可能通过更精确的治疗开始和停止来提高患者的总生存率(OS)或生活质量吗?在这篇评论中,我们回顾了开始、停止或转换治疗的历史依据。我们强调,这些时间点在很大程度上是任意选择的,随后受到历史偶然性的限制。我们强调随机努力,以更好地阐明开始或停止治疗的时间点。最后,我们为抗癌药物精确定时的研究议程提供了建议。
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引用次数: 0
Breast cancer patient experiences in the Botswana health system: Is it time for patient navigators? 癌症患者在博茨瓦纳卫生系统的经历:现在是患者导航仪的时候了吗?
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-10-26 DOI: 10.1016/j.jcpo.2023.100449
Kirthana Sharma , Leyla Baghirova-Busang , Shaheen Abkenari , Godwill Gulubane , Charmi Rana , Peter Vuylsteke , Richard Marlink , Tendani Gaolathe , Tiny Masupe

Background

New models of care are required to support women with breast cancer due to rising incidence and mortality in sub-Saharan Africa (SSA). This study gives voice to the experiences of advanced-stage breast cancer patients in the Botswana healthcare system, to guide improved service provision and the potential utility of patient navigator (PN) programs.

Methods

focus group discussions (FGD) were conducted with advanced-stage breast cancer patients recruited from the oncology ward of the public Princess Marina Hospital located in Gaborone, Botswana.

Results

FGDs included 7 female breast cancer patients and their 7 caregivers (2 male and 5 females). Findings fell into the following themes: experiences with cancer diagnosis, experiences with treatment, roles of caregivers, information needs, views on cancer resources, and attitudes towards cancer research. The study identified several barriers across the cascade of care for breast cancer patients in the Botswana health system. These correspond to challenges with timely diagnosis and comprehensive management and highlight community level barriers to achieving the targets of the WHO Global Breast Cancer initiative (GBCI).

Conclusion

The study findings suggest PN programs have the potential to bridge barriers identified in the Botswana healthcare system by improving communication, meeting information needs, providing emotional or practical support, and by addressing logistical barriers to cancer diagnosis and treatment in Botswana.

背景:由于撒哈拉以南非洲(SSA)的发病率和死亡率不断上升,需要新的护理模式来支持患有癌症的妇女。这项研究反映了博茨瓦纳医疗系统中晚期癌症患者的经验,以指导改善服务提供和患者导航(PN)计划的潜在效用。方法:对博茨瓦纳哈博罗内公立公主玛丽娜医院肿瘤科招募的晚期癌症患者进行焦点小组讨论(FGD)。结果:FGD包括7名女性癌症患者及其7名护理人员(2名男性和5名女性)。研究结果分为以下主题:癌症诊断经验、治疗经验、护理人员的角色、信息需求、对癌症资源的看法以及对癌症研究的态度。这项研究确定了博茨瓦纳卫生系统中癌症乳腺癌患者护理的几个障碍。这些与及时诊断和综合管理方面的挑战相对应,并突出了实现世界卫生组织全球癌症倡议(GBCI)目标的社区层面障碍。结论:研究结果表明,PN计划有可能通过改善沟通、满足信息需求、,提供情感或实际支持,并解决博茨瓦纳癌症诊断和治疗的后勤障碍。
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引用次数: 0
Health diplomacy in action: The cancer legacy of the Good Friday Agreement 健康外交在行动:耶稣受难日协议的癌症遗产。
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-10-14 DOI: 10.1016/j.jcpo.2023.100448
Mark Lawler , Richard Sullivan , Ghassan K. Abou-Alfa , Karen McCloskey , Debbie Keatley , Jennifer Feighan , William Dahut , Eibhlin Mulroe , Robert Ladner , Mohamed Genead , Maeve Lowery , James L. Gulley , Christopher J. Scott , Daniel B. Longley , Aedin Culhane , William M. Gallagher , Nick Orr , Stephen J. Chanock , Satish Gopal

2023 marks the 25th anniversary of the Good Friday Agreement, which led peace in Northern Ireland. As well as its impact on peace and reconciliation, the Good Friday Agreement has also had a lasting positive impact on cancer research and cancer care across the island of Ireland. Pursuant to the Good Friday Agreement, a Memorandum of Understanding (MOU) was signed between the respective Departments of Health in Ireland, Northern Ireland and the US National Cancer Institute (NCI), giving rise to the Ireland – Northern Ireland – National Cancer Institute Cancer Consortium, an unparalleled tripartite agreement designed to nurture and develop linkages between cancer researchers, physicians and allied healthcare professionals across Ireland, Northern Ireland and the US, delivering world class research and better care for cancer patients on the island of Ireland and driving research and innovation in the US.

2023年是《耶稣受难日协议》25周年,该协议促成了北爱尔兰的和平协议,结束了30年的冲突。除了对和平与和解的影响外,《耶稣受难日协议》对整个爱尔兰岛的癌症研究和癌症护理合作产生了持久的积极影响。根据《耶稣受难日协议》,北爱尔兰各卫生部与美国国家癌症研究所(NCI)签署了谅解备忘录,成立了爱尔兰-北爱尔兰-国家癌症研究所癌症联合会,一项无与伦比的三方协议,旨在培育和发展爱尔兰、北爱尔兰和美国癌症研究人员、医生和联合医疗保健专业人员之间的联系,为爱尔兰岛上的癌症患者提供世界级的研究和更好的护理,并推动美国的研究和创新。
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引用次数: 0
The direct medical cost of breast cancer management in a provincial hospital of Papua New Guinea: A cost of illness study of consecutive patients from 2017 to 2022 巴布亚新几内亚一家省级医院癌症管理的直接医疗成本:2017年至2022年连续患者的疾病成本研究。
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-10-07 DOI: 10.1016/j.jcpo.2023.100447
Ian Umo , Michealynne Kulai , Pius Umo , Kennedy James , Rodger Ikasa

Background

Breast cancer is a major global health, gender and socioeconomic challenge. In PNG it is the leading cause of female mortality. Understanding direct medical costs related to breast cancer management can direct resource allocation and investment in breast cancer screening, treatment, infastructure and training.

Methods

A cost of illness study was conducted amongst patients with breast cancer at Alotau Provincial Hospital from the 12th of January 2017–9 th of August 2022. A bottom up approach of micro costing was applied to estimate the patient and hospital perspectives of direct medical costs.

Results

The total cost of breast cancer management was K1,624,656.14 (US$471,150.28). 58.5 % (n = 38) of patients with breast cancer did not undergo any form of surgery. Hospital costs accounted for 99.7 % (K1,620,156.14, US$469,845.28) of the total direct medical costs. The average cost per patient was K24,994.71 (US$ 7248.47). The dollar conversion was 1 KINA = 0.29 USD.

Conclusion

Investment in screening, diagnosis and treatment is crucial in addressing the burden of breast cancer in PNG.

Policy Summary

Provincial hospitals (in PNG) must invest in and implement the 2015 National Cancer Control Policy strategies that aim to develop hospital based cancer registries, human resources, equip health systems, improve cancer screening, improve diagnostics, research, funding and treatment for breast cancer control.

背景:癌症是全球性的重大健康、性别和社会经济挑战。在巴布亚新几内亚,它是女性死亡的主要原因。了解与乳腺癌症管理相关的直接医疗费用可以指导癌症筛查、治疗、基础设施和培训的资源分配和投资。方法:2017年1月12日至2022年8月9日,在阿洛陶省医院对癌症乳腺癌患者进行疾病成本研究。采用自下而上的微观成本法来估计患者和医院的直接医疗成本。结果:癌症治疗的总费用为162456.14南非兰特(471150.28美元)。58.5%(n=38)的癌症患者未接受任何形式的手术。医院费用占直接医疗费用总额的99.7%(620156.14肯尼亚先令,469845.28美元)。每位患者的平均费用为4994.71肯尼亚克朗(7248.47美元)。美元换算为1肯尼亚克朗=0.29美元。结论:筛查投资,诊断和治疗对于解决巴布亚新几内亚癌症乳腺癌负担至关重要。政策摘要:省级医院(巴布亚新几内亚)必须投资并实施2015年国家癌症控制政策战略,旨在发展以医院为基础的癌症登记处、人力资源、装备卫生系统、改进癌症筛查、,为癌症控制提供资金和治疗。
{"title":"The direct medical cost of breast cancer management in a provincial hospital of Papua New Guinea: A cost of illness study of consecutive patients from 2017 to 2022","authors":"Ian Umo ,&nbsp;Michealynne Kulai ,&nbsp;Pius Umo ,&nbsp;Kennedy James ,&nbsp;Rodger Ikasa","doi":"10.1016/j.jcpo.2023.100447","DOIUrl":"10.1016/j.jcpo.2023.100447","url":null,"abstract":"<div><h3>Background</h3><p>Breast cancer is a major global health, gender and socioeconomic challenge. In PNG it is the leading cause of female mortality. Understanding direct medical costs related to breast cancer management can direct resource allocation and investment in breast cancer screening, treatment, infastructure and training.</p></div><div><h3>Methods</h3><p>A cost of illness study was conducted amongst patients with breast cancer at Alotau Provincial Hospital from the 12th of January 2017–9 th of August 2022. A bottom up approach of micro costing was applied to estimate the patient and hospital perspectives of direct medical costs.</p></div><div><h3>Results</h3><p>The total cost of breast cancer management was K1,624,656.14 (US$471,150.28). 58.5 % (n = 38) of patients with breast cancer did not undergo any form of surgery. Hospital costs accounted for 99.7 % (K1,620,156.14, US$469,845.28) of the total direct medical costs. The average cost per patient was K24,994.71 (US$ 7248.47). The dollar conversion was 1 KINA = 0.29 USD.</p></div><div><h3>Conclusion</h3><p>Investment in screening, diagnosis and treatment is crucial in addressing the burden of breast cancer in PNG.</p></div><div><h3>Policy Summary</h3><p>Provincial hospitals (in PNG) must invest in and implement the 2015 National Cancer Control Policy strategies that aim to develop hospital based cancer registries, human resources, equip health systems, improve cancer screening, improve diagnostics, research, funding and treatment for breast cancer control.</p></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"38 ","pages":"Article 100447"},"PeriodicalIF":1.3,"publicationDate":"2023-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41183822","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
The story of the development of generic lenalidomide: How one company thwarted the Hatch-Waxman Act to generate billions of dollars in revenue 仿制药来那度胺的开发故事:一家公司如何挫败《哈奇-瓦克斯曼法案》,创造数十亿美元的收入
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-09-28 DOI: 10.1016/j.jcpo.2023.100446
Ryan J. Beechinor , Ghulam Rehman Mohyuddin , David E. Mitchell , Daniel Aaron , Zahra Mahmoudjafari

Lenalidomide (Revlimid®) was originally approved by the Food and Drug Administration (FDA) in 2005, however, a generic version was not available until 2022. In that time, the price of lenalidomide has increased more than 20 times, and in 2021 alone, it accounted for >$5.8 billion dollars in Medicare Part D spending. This was a direct consequence of legal tactics employed by the manufacturer to thwart development of generic formulations of lenalidomide. In this report, we review the clinical development of lenalidomide, provide background on generic drug manufacturing in the United States (US), describe the steps that the manufacturer took to prevent entry of generic lenalidomide into the US market, and advocate for legislative reform of the FDA approval process and patent law protections in the US.

来那度胺(Revlimid®)最初于2005年获得美国食品药品监督管理局(FDA)的批准,但直到2022年才有仿制药版本。在那段时间里,来那度胺的价格上涨了20多倍,仅在2021年就占到了>$58亿美元的医疗保险D部分支出。这是制造商采用法律策略阻碍来那度胺仿制药配方开发的直接后果。在本报告中,我们回顾了来那度胺的临床开发,提供了美国仿制药生产的背景,描述了制造商为防止仿制药来那度酰胺进入美国市场所采取的步骤,并倡导对美国食品药品监督管理局的审批程序和专利法保护进行立法改革。
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引用次数: 0
Effect of a same day appointment initiative on racial disparities in access for radiation oncology 当天预约倡议对放射肿瘤学治疗中种族差异的影响。
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-09-15 DOI: 10.1016/j.jcpo.2023.100445
Allen M. Chen, Andrew D. Garcia, Marcela Alexandrescu, Erin Healy

Purpose

We present our single-institution experience with the development of a same day access scheduling initiative for an outpatient radiation oncology unit, focusing on its potential influence on ameliorating racial disparities.

Methods and materials

From March 2021 to August 2022, a pilot initiative was conducted such that all new patients referred to a tertiary care-based radiation oncology department were offered the ability to be seen as a same day consultation. The timespan of this analysis was categorized into 2 distinct successive periods over 36 months—a 18-month pre-initiative period (September 2019 to February 2021) and another subsequent one (March 2021 to August 2022). Descriptive statistics were used to study the impact of this initiative on access-related benchmarks.

Results

A total of 2897 patients were referred. Among the 2107 patients scheduled, three hundred and sixteen (15 %) opted for same day appointments. Black, Latino, and Asian patients were significantly more likely to use the same day access initiative versus Caucasian patients (p = 0.01). The same day access initiative increased the proportion of patients seen within 5 days from referral from 8 % to 34 % for Blacks, 12–57 % for Latinos, and 18–67 % for Asians, compared to 39–55 % for Caucasians (p < 0.001). The no-show rate was reduced from 20 % to 7 % and 14–5 %, for Black and Latino patients, respectively (p < 0.001).

Conclusions

The implementation of a same day access initiative narrowed disparities with respect to access-related benchmarks.

目的:我们介绍了我们在为放射肿瘤学门诊部制定当天访问计划方面的单一机构经验,重点关注其对改善种族差异的潜在影响。方法和材料:从2021年3月到2022年8月,开展了一项试点活动,为所有转诊到三级护理放射肿瘤学科的新患者提供当天会诊的能力。该分析的时间跨度分为36个月内的两个不同的连续时期——一个是18个月的倡议前时期(2019年9月至2021年2月),另一个是随后的时期(2021年3月至2022年8月)。使用描述性统计数据来研究这一举措对获取相关基准的影响。结果:共有2897名患者被转诊。在安排的2107名患者中,3016名(15%)选择了当天预约。与白人患者相比,黑人、拉丁裔和亚裔患者更有可能使用当天就诊计划(p=0.01)。黑人患者在转诊后5天内就诊的患者比例从8%增加到34%,拉丁裔患者为12-57%,亚裔患者为18-67%,相比之下,高加索人的这一比例为39-55%(p结论:当天访问倡议的实施缩小了访问相关基准方面的差距。
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引用次数: 0
The current status of National Cancer Control Plans in Africa: Data from 32 countries 非洲癌症国家控制计划的现状:来自32个国家的数据
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-09-01 DOI: 10.1016/j.jcpo.2023.100430
A.V.C. Manirakiza , F. Rubagumya , M. Mushonga , M. Mutebi , N. Lasebikan , L. Kochbati , B. Gwayali , C.M. Booth , D.C. Stefan

Background

Cancer incidence and mortality are rapidly rising in Africa. National Cancer Control Plans (NCCPs have contributed to a reduction in the burden of some preventable cancers, availing early diagnosis and adequate treatment modalities and palliative care, while sustaining them with sufficient monitoring systems. knowledge we undertook a cross-sectional survey across continental Africa to understand the presence of NCCPs, availability of early detection and screening policies and the status of health financing pertaining to cancer.

Methods

Through an online survey, we approached key cancer care staff in 54 countries. Questions were themed in 3 main areas - Cancer registries and national cancer control plans (NCCPs) availability in countries, Cancer screening, diagnosis and management capacity, Financing in cancer care.

Results

On 54 approached respondents, we received 32 responses. 88 % of responding countries have active national cancer registries, 75 % with NCCPs and 47 % with cancer screening policies and practices. Universal Health Coverage is available in 40 % of countries.

Conclusion

Our study shows that there is a scarcity of NCCPs in Africa. Deliberate investment in cancer registry and clinical services is key to improving access to care and ultimately reduce cancer mortality in Africa.

背景非洲的癌症发病率和死亡率正在迅速上升。国家癌症控制计划(NCCP有助于减轻一些可预防癌症的负担,利用早期诊断和适当的治疗模式以及姑息治疗,同时通过足够的监测系统来维持它们。我们在非洲大陆进行了一项横断面调查,以了解NCCP的存在、早期检测和筛查政策的可用性以及与癌症有关的卫生筹资。方法通过在线调查,我们接触了54个国家的癌症医护人员。问题的主题是三个主要领域——癌症登记和国家癌症控制计划(NCCP)在各国的可用性,癌症筛查、诊断和管理能力,癌症护理的融资。结果在54名被调查者中,我们收到了32份回复。88%的答复国家有积极的癌症国家登记处,75%有NCCP,47%有癌症筛查政策和做法。40%的国家提供全民健康保险。结论我们的研究表明,非洲的NCCP非常稀缺。有意投资癌症登记和临床服务是改善非洲获得护理和最终降低癌症死亡率的关键。
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引用次数: 0
Under-representation of black patients with multiple myeloma in studies supporting International Myeloma Working Group guidelines 支持国际骨髓瘤工作组指南的研究中多发性骨髓瘤黑人患者代表性不足
IF 1.3 Q3 HEALTH POLICY & SERVICES Pub Date : 2023-09-01 DOI: 10.1016/j.jcpo.2023.100433
Suhib Fahmawi , Carolina Schinke , Sharmilan Thanendrarajan , Maurizio Zangari , John D. Shaughnessy Jr. , Fenghuang Zhan , Frits van Rhee , Samer Al Hadidi

Introduction

Multiple myeloma (MM) is more common in Black persons when compared to non-Hispanic White persons. The International Myeloma Working Group (IMWG) provides consensus for diagnosis and treatment of MM. Our study aimed to assess the racial composition of supporting studies used by IMWG to publish their guidelines

Methods

We performed a cross sectional study that included all IMWG publications up to July 2022. References cited in each publication were reviewed. Review articles, comments, editorials, case reports, and animal-based studies were excluded.

Results

A total of 59 IMWG publications with 3956 references were reviewed. Final analysis included 2047 references of which 39 % (n = 804) were clinical trials, 35 % (n = 712) were observational studies, 20 % (n = 401) were diagnostic and or genetic testing-based studies, 3 % (n = 65) were population-based analysis and 3 % (n = 65) classified as others. Only 10.4 % of included references (n = 213/2047) reported race/ethnicity of studied patients. The total number of patients in all referenced studies were 5,747,920, only 2.6 % (n = 150,790) black patients. Of the trials referenced and done exclusively in the US, 41 out of 282 (14.5 %) reported race/ethnicity with a total number of patients of 38,050 of which 2493 (6.5 %) were black patients.

Conclusion

IMWG guidelines were based mainly on studies that did not include enough Black patients. Guidelines should consider inclusion of observational, diagnostic and population-based studies with more black patients to allow for better reflection of disease prevalence, clinical characteristics and/or outcomes.

引言与非西班牙裔白人相比,多发性骨髓瘤在黑人中更常见。国际骨髓瘤工作组(IMWG)为MM的诊断和治疗提供了共识。我们的研究旨在评估IMWG用于发表其指南的支持性研究的种族组成。方法我们进行了一项横断面研究,包括截至2022年7月的所有IMWG出版物。对每份出版物中引用的参考文献进行了审查。综述文章、评论、社论、病例报告和基于动物的研究被排除在外。结果共查阅了59篇IMWG出版物,参考文献3956篇。最终分析包括2047篇参考文献,其中39%(n=804)为临床试验,35%(n=712)为观察性研究,20%(n=401)为基于诊断和/或基因检测的研究,3%(n=65)为基于人群的分析,3%(n=65)归类为其他研究。只有10.4%的纳入参考文献(n=213/2047)报告了研究患者的种族/民族。所有参考研究中的患者总数为5747920人,只有2.6%(n=150790)的黑人患者。在美国专门引用和进行的试验中,282人中有41人(14.5%)报告了种族/民族,患者总数为38050人,其中2493人(6.5%)是黑人患者。结论IMWG指南主要基于没有包括足够黑人患者的研究。指南应考虑纳入对更多黑人患者的观察性、诊断性和基于人群的研究,以便更好地反映疾病流行率、临床特征和/或结果。
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引用次数: 0
期刊
Journal of Cancer Policy
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