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Self-management and adherence to recommended follow-up after gynaecological cancer: results from the international InCHARGE study
  1. Mette Skorstad1,
  2. Belle H de Rooij2,3,
  3. Mette Moustgaard Jeppesen4,5,
  4. Stinne Holm Bergholdt6,
  5. Nicole Paulina Maria Ezendam2,3,
  6. Tonje Bohlin7,
  7. Pernille Tine Jensen8,9,
  8. Kristina Lindemann10,11,
  9. Lonneke van de Poll2,3,12 and
  10. Ingvild Vistad1,13
  1. 1Department of Gynaecology and Obstetrics, Sorlandet Hospital Kristiansand, Kristiansand, Norway
  2. 2Department of Medical and Clinical Psychology, IKNL, Utrecht, Utrecht, Netherlands
  3. 3Department of Medical and Clinical Psychology, Tilburg University, Tilburg, Netherlands
  4. 4Department of Gynaecology and Obstetrics, Hospital Lillebaelt Middelfart Hospital, Middelfart, Denmark
  5. 5OPEN, Odense Patient data Explorative Network, Odense University Hospital, Odense, Denmark
  6. 6Department of Gynaecology and Obstetrics, Odense University Hospital, Odense, Denmark
  7. 7Department of Gynaecology and Obstetrics, Vestfold Hospital Trust, Tonsberg, Norway
  8. 8Faculty of Health Science, Aarhus University, Aarhus, Denmark
  9. 9Department of Gynecology and Obstetrics, Aarhus Universitetshospital, Aarhus, Denmark
  10. 10Department of Gynecological Oncology, Division of Cancer Medicine, Oslo University Hospital, Oslo, Norway
  11. 11Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway
  12. 12Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, Netherlands
  13. 13Department of Clinical Science, University of Bergen Faculty of Medicine and Dentistry, Bergen, Norway
  1. Correspondence to Dr Mette Skorstad, Department of Gynaecology and Obstetrics, Sorlandet Hospital Kristiansand, Kristiansand, Norway; mette.skorstad{at}


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.

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

Data availability statement

Data are available upon reasonable request. In accordance with the journal’s guidelines, we will provide our data for the reproducibility of this study in other centers if such is requested.

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Data availability statement

Data are available upon reasonable request. In accordance with the journal’s guidelines, we will provide our data for the reproducibility of this study in other centers if such is requested.

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  • Contributors MS, BHdR, MMJ, SHB, PTJ, NPME, LvdP-F, and IV contributed to the study concept and design. All authors contributed to provision of patients. MS, BHdR and MMJ contributed to acquisition of data. MS, BHdR, MMJ, SHB, PTJ, NPME, LvdP-F, and IV carried out analysis and interpretation of data. All Authors contributed significantly to manuscript writing, critical review of the manuscript, and final approval of the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.