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

Abstract

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.