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The Patient’s Voice on What We Can Learn From the COVID-19 Pandemic About Gynaecologic Oncology Follow-up Care: a Qualitative Study
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  • E.M. Vermaas,
  • Luc R. C. W. van Lonkhuijzen,
  • H. Westerveld,
  • Maaike van der Aa,
  • Tijmen J.J. Bonestroo,
  • Brigitte Slangen,
  • Aarts JWM
E.M. Vermaas
Amsterdam Universitair Medische Centra

Corresponding Author:[email protected]

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Luc R. C. W. van Lonkhuijzen
Amsterdam Universitair Medische Centra
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H. Westerveld
Erasmus MC
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Maaike van der Aa
Integraal Kankercentrum Nederland
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Tijmen J.J. Bonestroo
Rijnstate
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Brigitte Slangen
Maastricht Universitair Medisch Centrum+ Afdeling Verloskunde and Gynaecologie
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Aarts JWM
Amsterdam Universitair Medische Centra
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Abstract

OBJECTIVE To explore how patients experienced the changed follow-up care for gynaecological cancer during the COVID-19 pandemic and their perspectives on aftercare to identify key elements of follow-up care. DESIGN Qualitative study using thematic analysis. SETTING Focus group discussions and individual interviews conducted in the Netherlands. POPULATION Patients diagnosed with ovarian, cervical, endometrial, or vulvar cancer who received follow-up care during the COVID-19 pandemic. METHODS Transcripts underwent thematic analysis. MAIN OUTCOME MEASURES Evaluate experiences of patients with follow-up during the pandemic and to explore and better understand patient preferences and needs. RESULTS Five themes were generated: 1) continuity of care, 2) absence of family members and carers, 3) meeting my needs, 4) managing my needs, 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 improving 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 during future periods of scarcity.