Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: A study from the population-based PROFILES registry

Kim Agnes Helma Nicolaije*, Olga Husson, Nicole Paulina Maria Ezendam, Maria Caroline Vos, Rutgerus Franciscus Petrus Maria Kruitwagen, Marnix Lodewijk Maria Lybeert, Lonneke Veronique van de Poll-Franse

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Objective: To evaluate perceived level of and satisfaction with information received by endometrial cancer survivors, and to identify associations with socio-demographic and clinical characteristics. Methods: All patients diagnosed with endometrial cancer between 1998 and 2007, registered in the Eindhoven Cancer Registry, received a questionnaire including EORTC-QLQ-INFO25. Results: Seventy-seven percent responded (n = 742). Most patients indicated receiving quite a bit information about their disease and medical tests. However, most patients were not (54%) or a little (24%) informed about the cause of their disease, and possible side effects (36%; 27%). Especially information about additional help, rehabilitation, psychological assistance, and expected results on social and sexual life was lacking. Five percent was not or a little (36%) satisfied. Four percent found the information not or a little (35%) helpful. Fifteen percent preferred more information. Younger age, more recent diagnosis, radiotherapy, absence of comorbidities, having a partner, having received written information, and higher educational level were associated with higher perceived information receipt. Conclusion: Many endometrial cancer survivors are unsatisfied with received information. Several areas of information provision are experienced as insufficient. Practice implications: More patient-tailored information is probably needed to provide optimal information. Implementation of Survivorship Care Plans might be a way to achieve this.
Original languageEnglish
Pages (from-to)427-435
JournalPatient Education and Counseling
Issue number3
Publication statusPublished - Sep 2012


  • Endometrial cancer
  • Cancer survivors
  • Information provision
  • Information satisfaction
  • Population-based
  • PROFILES registry

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