Patient Voices: What Can We Learn From the Covid-19 Pandemic About Follow-Up Care in Gynaecologic Oncology?

IF 3.2 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2025-09-22 DOI:10.1111/hex.70405

Esther M. Vermaas, Luc R. C. W. Van Lonkhuijzen, Henrike Westerveld, Maaike A. Van Der Aa, Tijmen J. Bonestroo, Brigitte F. M. Slangen, Johanna W. M. Aarts

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引用次数: 0

Abstract

Purpose

To explore women's experiences with follow-up care after gynaecological cancer during the Covid-19 pandemic and identify key elements of aftercare from their perspective.

Methods

A qualitative study was performed, including five focus group discussions and two individual interviews with 20 participants diagnosed with ovarian (n = 5), cervical (n = 6), endometrial (n = 5) or vulvar cancer (n = 4) who received follow-up care during the Covid-19 pandemic in the Netherlands. Transcripts underwent thematic analysis, guided by the framework of the Picker Principles of Patient-Centred Care.

Results

Five themes were generated: (1) continuity of care, (2) absence of family members and carers, (3) meeting my needs, (4) managing my needs and (5) the cancer survivor narrative. The main changes experienced during the Covid-19 pandemic were the introduction to remote healthcare and the absence of family members. An interconnection between themes was found, highlighting that providing a designated, always accessible contact person can be a catalyst for the improvement of information provision and healthcare guidance.

Conclusions

In conclusion, this study highlights the need for personalised and patient-centred follow-up that promotes patient empowerment, and how this can be provided by a designated contact person. Findings emphasise the importance of tailored support, involvement of family members, addressing information gaps, and overcoming barriers to self-management. Lastly, the findings provide direction on how to approach follow-up care in the future.

Patient Contribution

This study was done in close collaboration with the patient advocacy group Olijf; their significant input in both the design and conduct of the study is invaluable. Olijf's involvement ensured that the research remained patient-centred and aligned with the real-life concerns and priorities of those affected by gynaecological cancers. The participants in this study, all of whom are gynaecological cancer survivors, played an important role by sharing their experiences, and we extend our gratitude to them. Their insights were critical in shaping the findings of this research.

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患者之声：2019冠状病毒病大流行对妇科肿瘤随访护理有何启示？

目的探讨新冠肺炎大流行期间妇女妇科癌症术后随访护理的经验，从她们的角度确定术后护理的关键要素。方法采用定性研究，包括5次焦点小组讨论和2次个人访谈，对20名在荷兰Covid-19大流行期间接受随访治疗的被诊断为卵巢癌（n = 5）、宫颈癌（n = 6）、子宫内膜癌（n = 5）或外阴癌（n = 4）的参与者进行了定性研究。在以患者为中心的护理的Picker原则框架的指导下，对成绩单进行了专题分析。结果产生了五个主题：(1)护理的连续性，(2)家庭成员和照顾者的缺席，(3)满足我的需求，(4)管理我的需求，(5)癌症幸存者的叙述。在2019冠状病毒病大流行期间经历的主要变化是引入了远程医疗保健和家庭成员的缺席。发现了主题之间的相互联系，强调提供指定的、随时可接触的联系人可以促进改进信息提供和保健指导。总之，这项研究强调了个性化和以患者为中心的随访的必要性，以促进患者的赋权，以及如何通过指定的联系人提供这一点。调查结果强调了有针对性的支持、家庭成员的参与、解决信息差距和克服自我管理障碍的重要性。最后，研究结果为今后如何进行后续护理提供了指导。这项研究是与患者倡导组织Olijf密切合作完成的；他们在研究的设计和实施方面的重要投入是无价的。Olijf的参与确保了研究始终以患者为中心，并与现实生活中妇科癌症患者的关注和优先事项保持一致。本研究的参与者都是妇科癌症幸存者，他们通过分享他们的经验发挥了重要作用，我们向他们表示感谢。他们的见解对形成这项研究的结果至关重要。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.