Self-management and adherence to recommended follow-up after gynaecological cancer: Results from the international InCHARGE study

Mette Skorstad*, Belle H. De Rooij, Mette Moustgaard Jeppesen, Stinne Holm Bergholdt, Nicole Paulina Maria Ezendam, Tonje Bohlin, Pernille Tine Jensen, Kristina Lindemann, Lonneke Van De Poll, Ingvild Vistad

*Corresponding author for this work

Research output: Contribution to journalJournal articleResearchpeer-review


Objective: To assess the relationship between self-management skills and adherence to follow-up guidelines among gynecological cancer survivors in the Netherlands, Norway, and Denmark, and to assess the relationship between adherence to follow-up programs and use of additional healthcare services. Methods: For this international, multicenter, cross-sectional study, we recruited gynecological cancer survivors 1-5 years after completion of treatment. Information on follow-up visits, use of healthcare resources, self-management (measured by the Health Education Impact Questionnaire), clinical characteristics, and demographics were obtained by validated questionnaires. Participants were categorized as adherent if they attended the number of follow-up visits recommended by national guidelines, non-adherent if they had fewer visits than recommended, or over-users if they had more visits than recommended. Results: Of 4455 invited survivors, 2428 (55%) returned the questionnaires, and 911 survivors were included in the analyses. Survivors with high self-management most frequently adhered to recommended follow-up. Non-adherent survivors showed lower self-management in the health-directed activity domain (OR 1.54, 95% CI 1.03 to 2.32) than adherent survivors. No other associations between self-management and follow-up adherence were revealed. Non-adherent survivors tended to have endometrial cancer, surgical treatment only, be older, and be Danish residents. Over-users reported more follow-up visits and also used additional healthcare services more frequently than adherent survivors. Conclusion: Low self-management appears to reduce the likelihood of adherence to national guidelines for gynecological cancer follow-up. Focusing on patient education for survivors at risk of low self-management to ensure adherence to recommended follow-up may improve personalization of follow-up.

Original languageEnglish
JournalInternational Journal of Gynecological Cancer
Issue number8
Pages (from-to)1106-1115
Publication statusPublished - Aug 2021


  • cervical cancer
  • ovarian cancer
  • quality of life (PRO)/palliative care
  • uterine cancer


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