Understanding data and information needs for palliative cancer care to target mobile phone-based intervention development in Uganda and Zimbabwe

了解姑息性癌症护理的数据和信息需求，以针对乌干达和津巴布韦基于移动电话的干预发展

• 批准号: MR/S014535/1
• 负责人: Matthew Allsop
• 金额: $ 24.64万
• 依托单位: University of Leeds
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2018
• 资助国家: 英国
• 起止时间: 2018 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=MR%2FS014535%2F1
• 关键词: Understanding; data; information; needs; palliative

Palliative care involves the prevention and relief of physical, emotional, social, and spiritual suffering associated with any chronic or life-threatening illness, beginning from the time of diagnosis. In sub-Saharan Africa, palliative care has historically focused on supporting patients with HIV/AIDS. However, increasing numbers of both cancer cases and cancer deaths mean that palliative care services urgently need to adapt to support affected patients and their caregivers. Around 80% of cancers are incurable at the time of detection and diagnosis. It is crucial to invest in and develop palliative cancer care to support the quality of life of patients in the later stages of their illness. Palliative cancer care will remain an essential component of healthcare delivery in sub-Saharan Africa, independent of efforts to improve cancer prevention and treatments. Through research, our team have been developing approaches to gathering data that can help shape provision of palliative care for cancer patients and their caregivers. This has involved developing measures for accurately and systematically capturing information about a patient's needs for support and their outcomes following palliative care intervention (e.g. pain medication). In order to extend this work, we need to explore tools for easily and securely capturing and sharing this information to guide palliative care service development. Our team have identified widespread use of mobile phones by patients and health professionals across palliative care services in the region. This includes a World Health Organization (WHO) pilot project capturing information via mobile phones from caregivers of palliative care patients in Uganda, Zimbabwe and India (called 'mPalliative'). Our team are supporting delivery and evaluation of this project for the sub-Saharan Africa sites. Clear potential for using mobile phones for capturing information has been demonstrated. However, it is essential to now undertake research to understand the best ways to collect data using mobile phones to make sure it is relevant to needs of patients, caregivers, health professionals and policymakers; this work is not planned and has not been undertaken previously.Pump-priming funding will enable the team to create a consortium that will work together to guide the development of mobile phone-based approaches in palliative cancer care in sub-Saharan Africa. The consortium will include researchers, policymakers, non-governmental organisations and leading technology partners. We will also undertake interviews to understand how mobile phone-based approaches can be used as part of service delivery to capture data that can directly inform development of palliative cancer care. We will gather patient and caregiver perspectives on how mobile phones can be used in an acceptable and sustainable way to support information collection and communication with health professionals. For health professionals, we will identify how patient-level data reflecting experience and outcomes (obtained using mobile phones) can directly influence their clinical practice and inform the development of current service provision. For policymakers, we will understand what data would be useful to gather (in what format and why), to inform decision making and commissioning around palliative cancer care. These perspectives, from across the health system, will provide strong foundations on which to pursue substantive funding to undertake the development and evaluation of mobile phone-based interventions to develop palliative cancer care in sub-Saharan Africa. Research activities linked to this pump-priming award will occur in Uganda and Zimbabwe. Both countries currently lead efforts to develop palliative care services across sub-Saharan Africa and have demonstrated capacity to support research activities making them both ideal partner countries. There will be multiple opportunities for sharing our findings across other countries.

从诊断开始，姑息治疗涉及预防和减轻与任何慢性或危及生命的疾病有关的身体、情感、社会和精神痛苦。在撒哈拉以南非洲，姑息治疗历来侧重于支持艾滋病毒/艾滋病患者。然而，癌症病例和癌症死亡人数的增加意味着姑息治疗服务迫切需要适应，以支持受影响的患者及其护理人员。大约80%的癌症在发现和诊断时是无法治愈的。投资和发展姑息性癌症治疗，以支持患者在疾病晚期的生活质量，这一点至关重要。姑息性癌症治疗仍将是撒哈拉以南非洲医疗保健服务的重要组成部分，独立于改善癌症预防和治疗的努力之外。通过研究，我们的团队一直在开发收集数据的方法，这些数据可以帮助为癌症患者及其护理人员提供姑息治疗。这涉及制定措施，以准确和系统地获取有关患者支持需求及其姑息治疗干预（例如止痛药）后结果的信息。为了扩展这项工作，我们需要探索轻松安全地捕获和共享这些信息的工具，以指导姑息治疗服务的发展。我们的团队发现，该地区的患者和卫生专业人员在整个姑息治疗服务中广泛使用移动电话。这包括世界卫生组织（世卫组织）的一个试点项目，通过移动电话从乌干达、津巴布韦和印度的姑息治疗患者的护理人员（称为“姑息治疗”）获取信息。我们的团队正在为撒哈拉以南非洲地区的项目交付和评估提供支持。利用移动电话获取信息的明显潜力已得到证明。然而，现在必须进行研究，了解使用移动电话收集数据的最佳方法，以确保其与患者、护理人员、卫生专业人员和决策者的需求相关；这项工作没有计划，以前也没有进行过。注入资金将使该团队能够创建一个联盟，该联盟将共同指导撒哈拉以南非洲地区基于手机的姑息性癌症治疗方法的发展。该联盟将包括研究人员、政策制定者、非政府组织和领先的技术合作伙伴。我们还将进行访谈，以了解如何将基于手机的方法用作服务交付的一部分，以获取可以直接为姑息性癌症治疗的发展提供信息的数据。我们将收集患者和护理人员关于如何以可接受和可持续的方式使用移动电话的观点，以支持信息收集和与卫生专业人员的沟通。对于卫生专业人员，我们将确定反映经验和结果的患者水平数据（使用移动电话获得）如何直接影响他们的临床实践，并为当前服务提供的发展提供信息。对于政策制定者来说，我们将了解收集哪些数据（以何种格式和原因）是有用的，以便为姑息性癌症治疗的决策和委托提供信息。来自整个卫生系统的这些观点将提供坚实的基础，在此基础上寻求大量资金，以开发和评估基于移动电话的干预措施，在撒哈拉以南非洲发展姑息性癌症治疗。乌干达和津巴布韦将开展与这一激励奖有关的研究活动。两国目前在撒哈拉以南非洲地区主导发展姑息治疗服务的努力，并已显示出支持研究活动的能力，使两国都成为理想的伙伴国家。我们将有很多机会在其他国家分享我们的发现。

项目成果

Understanding the role of digital technologies to enhance palliative cancer care delivery in sub-Saharan Africa

了解数字技术在加强撒哈拉以南非洲地区癌症姑息治疗服务中的作用

• 发表时间: 2019
• 作者: Nkhoma, K.B.

Mobile technologies for palliative cancer care in Uganda: Qualitative secondary analysis of health professional perspectives

• DOI: 10.1016/j.hlpt.2022.100608
• 发表时间: 2022-03-12
• 期刊: HEALTH POLICY AND TECHNOLOGY
• 影响因子: 6
• 作者: Karera, Marie Grace Duhuze;Omar, Mayeh A.;Allsop, Matthew J.
• 通讯作者: Allsop, Matthew J.

Research Realities: Strategies to Successfully Execute Global Cancer Care Grants in Resource Constrained Settings

研究现实：在资源有限的环境中成功执行全球癌症护理补助金的策略

• 发表时间: 2020
• 作者: Allsop MJ

Patient experiences of living with cancer before interaction with palliative care services in Zimbabwe: A qualitative secondary data analysis.

• DOI: 10.1111/ecc.13632
• 发表时间: 2022-09
• 期刊: EUROPEAN JOURNAL OF CANCER CARE
• 影响因子: 2.1
• 作者: Dandadzi, Adlight;Chapman, Emma;Chirenje, Z. Mike;Namukwaya, Elizabeth;Pini, Simon;Nkhoma, Kennedy;Allsop, Matthew J.
• 通讯作者: Allsop, Matthew J.

The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study.

• DOI: 10.1177/0269216320974925
• 发表时间: 2021-03
• 期刊: Palliative medicine
• 影响因子: 4.4
• 作者: Adejoh SO;Boele F;Akeju D;Dandadzi A;Nabirye E;Namisango E;Namukwaya E;Ebenso B;Nkhoma K;Allsop MJ
• 通讯作者: Allsop MJ