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


CONCLUSIONS
Many endometrial cancer survivors are unsatisfied with received information. Several areas of information provision are experienced as insufficient.


CONCLUSIONS
More patient-tailored information is probably needed to provide optimal information. Implementation of Survivorship Care Plans might be a way to achieve this.
Department of Medical Psychology and Neuropsychology, Tilburg University, The Netherlands. K.A.H.nicolaije@uvt.nl
Kim Agnes Helma
KA
Nicolaije
Olga
O
Husson
Nicole Paulina Maria
NP
Ezendam
Maria Caroline
MC
Vos
Rutgerus Franciscus Petrus Maria
RF
Kruitwagen
Marnix Lodewijk Maria
ML
Lybeert
Lonneke Veronique
LV
van de Poll-Franse
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003142:Communication; D003430:Cross-Sectional Studies; D003695:Delivery of Health Care / Q000379:methods; D016889:Endometrial Neoplasms / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D005260:Female; D005500:Follow-Up Studies; D006301:Health Services Needs and Demand; D006801:Humans; D016015:Logistic Models; D008875:Middle Aged; D009426:Netherlands; D010353:Patient Education as Topic / Q000379:methods*; D017060:Patient Satisfaction; D010465:Perception; D010817:Physician-Patient Relations; D011788:Quality of Life / Q000523:psychology*; D012042:Registries; D018203:Sarcoma, Endometrial Stromal / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D055815:Young Adult