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

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.

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.

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.

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.

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.