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一项针对支持性癌症护理的医疗需求、偏好和期望的跨国调查:共同创建 LifeChamps 数字平台。

A multinational investigation of healthcare needs, preferences, and expectations in supportive cancer care: co-creating the LifeChamps digital platform.

机构信息

School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK.

Academic Primary Health Care Center, Stockholm Health Care Services, Region Stockholm, 104 31, Stockholm, Sweden.

出版信息

J Cancer Surviv. 2023 Aug;17(4):1094-1110. doi: 10.1007/s11764-022-01289-7. Epub 2022 Nov 11.

Abstract

PURPOSE

This study is to evaluate healthcare needs, preferences, and expectations in supportive cancer care as perceived by cancer survivors, family caregivers, and healthcare professionals.

METHODS

Key stakeholders consisted of cancer survivors diagnosed with breast cancer, prostate cancer, or melanoma; adult family caregivers; and healthcare professionals involved in oncology. Recruitment was via several routes, and data were collected via either online surveys or telephone interviews in Greece, Spain, Sweden, and the UK. Framework analysis was applied to the dataset.

RESULTS

One hundred and fifty-five stakeholders participated: 70 cancer survivors, 23 family caregivers, and 62 healthcare professionals (13 clinical roles). Cancer survivors and family caregivers' needs included information and support on practical/daily living, as frustration was apparent with the lack of follow-up services. Healthcare professionals agreed on a multidisciplinary health service with a "focus on the patient" and availability closer to home. Most healthcare professionals acknowledged that patient-reported outcomes may provide "better individualised care". Cancer survivors and family caregivers generally felt that the digital platform would be useful for timely personalised support and aided communication. Healthcare professionals were supportive of the "proactive" functionality of the platform and the expected advantages. Anticipated challenges were integration obstacles such as workload/infrastructure and training/support in using the new technology.

CONCLUSIONS

Obtaining key stakeholders' insights provided a foundation for action to further co-create the LifeChamps digital platform to meet needs and priorities and deliver enhanced supportive care to "older" cancer survivors.

IMPLICATIONS FOR CANCER SURVIVORS

Co-creation provided insight into gaps where digital support may enhance health and well-being.

摘要

目的

本研究旨在评估癌症幸存者、家庭照顾者和医疗保健专业人员对支持性癌症护理的医疗需求、偏好和期望。

方法

主要利益相关者包括被诊断患有乳腺癌、前列腺癌或黑色素瘤的癌症幸存者、成年家庭照顾者以及参与肿瘤学的医疗保健专业人员。通过多种途径进行招募,并在希腊、西班牙、瑞典和英国通过在线调查或电话访谈收集数据。应用框架分析对数据集进行分析。

结果

共有 155 名利益相关者参与:70 名癌症幸存者、23 名家庭照顾者和 62 名医疗保健专业人员(13 个临床角色)。癌症幸存者和家庭照顾者的需求包括有关实际/日常生活的信息和支持,因为对缺乏后续服务感到不满。医疗保健专业人员一致认为需要建立一个多学科的医疗服务体系,“以患者为中心”,并提供离家更近的服务。大多数医疗保健专业人员承认,患者报告的结果可能提供“更好的个性化护理”。癌症幸存者和家庭照顾者普遍认为,数字平台将有助于及时提供个性化支持,并促进沟通。医疗保健专业人员支持平台的“主动”功能以及预期的优势。预计面临的挑战包括集成障碍,如工作量/基础设施以及使用新技术的培训/支持。

结论

获得主要利益相关者的意见为进一步共同创建 LifeChamps 数字平台提供了基础,以满足需求和优先事项,并为“老年”癌症幸存者提供增强的支持性护理。

意义

共同创造为数字支持可能增强健康和幸福感的差距提供了深入了解。

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