TY - JOUR
T1 - Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: A study from the population-based PROFILES registry
AU - Nicolaije, Kim Agnes Helma
AU - Husson, Olga
AU - Ezendam, Nicole Paulina Maria
AU - Vos, Maria Caroline
AU - Kruitwagen, Rutgerus Franciscus Petrus Maria
AU - Lybeert, Marnix Lodewijk Maria
AU - van de Poll-Franse, Lonneke Veronique
PY - 2012/9
Y1 - 2012/9
N2 - 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.
AB - 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.
KW - Endometrial cancer
KW - Cancer survivors
KW - Information provision
KW - Information satisfaction
KW - Population-based
KW - PROFILES registry
U2 - 10.1016/j.pec.2012.05.002
DO - 10.1016/j.pec.2012.05.002
M3 - Article
C2 - 22658248
SN - 0738-3991
VL - 88
SP - 427
EP - 435
JO - Patient Education and Counseling
JF - Patient Education and Counseling
IS - 3
ER -