What do patients living with advanced cancer and their carers want to know? - a needs assessment.
Our primary objective was to determine the content and format that is most suitable for educational events targeting patients and carers who are living with advanced cancer. Secondary objectives included examining the differences in information needs between patients and their carers, and providing an estimate of the rate of participation in educational events targeting such patients and carers. Out-patients receiving palliative radiotherapy at Toronto Sunnybrook Regional Cancer Center and their carers were invited to complete the Advanced Cancer Information Needs Survey. One hundred forty-four respondents participated in the survey. The participants identified the management of pain, fatigue, and home palliative care resources as the areas in which information was most needed. Carers displayed greater interest, and the range of topics in which they continue to seek additional information is wider. Thirty-one percent of respondents said they would participate in an educational event. A 'one-on-one' interview approach and short written materials were the preferred sources of information. Our study examined potential content areas and preferred format for proposed educational events targeting patients and carers living with advanced cancer. We also highlighted the reasons for, and potential limitations of this approach. The investment of future effort in evaluating the impact of 1 on 1 interviews and 'short written materials' on the informational needs of patients and carers living with advanced cancer is warranted.
University of Toronto, Department of Radiation Oncology, University Health Network, Princess Margaret Hospital, 5th Floor, 610 University Avenue, Toronto, Ontario, M5G 2M9, Canada. rebecca.wong@rmp.uhn.on.ca
Rebecca K S
RK
Wong
Edmee
E
Franssen
Ewa
E
Szumacher
Ruth
R
Connolly
Marty
M
Evans
Beverley
B
Page
Edward
E
Chow
Charles
C
Hayter
Tamara
T
Harth
Lourdes
L
Andersson
Joan
J
Pope
Cyril
C
Danjoux
D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000523:psychology* / Q000532:radiotherapy; D010353:Patient Education as Topic; D011795:Surveys and Questionnaires