Cancer patients’ preferences for involvement in research and consumer activities: A cross-sectional survey — ASN Events

Cancer patients’ preferences for involvement in research and consumer activities: A cross-sectional survey (#68)

Lisa J Mackenzie 1 2 , Rob Sanson-Fisher 1 2 , Mariko Carey 1 2 , Catherine D'Este 3
  1. School of Medicine & Public Health, University of Newcastle, Newcastle, NSW, Australia
  2. Hunter Medical Research Institute, Newcastle, NSW, Australia
  3. National Centre for Epidemiology and Population Health, The Australian National University, Canberra, ACT, Australia

Aims: There is a need to increase cancer consumer influence over cancer control research, advocacy and service delivery. This study aimed to establish radiation oncology outpatients’ preferences for involvement in consumer activities (e.g. peer support, fundraising, advocacy and research), and for being contacted about research participation opportunities.

Methods: Participants were adult cancer patients receiving radiotherapy (RT) at two Australian public hospitals. A touchscreen computer questionnaire assessed patients’ perceptions of cancer care and psychological wellbeing. Different subsamples completed questions about a) preferences for involvement in consumer activities; and b) willingness to complete additional touchscreen computer questionnaires while waiting for RT. Participants were then asked to complete a follow-up consent process to indicate willingness to be contacted about future research participation opportunities.

Results: Of 318 eligible patients, 277 (87%) consented to study participation. Of the 54 Subsample A respondents, at least two thirds indicated willingness to be involved in each of: supporting others with cancer (n = 41); raising money to support cancer organisations (n = 38); raising awareness of cancer in the community (n = 36); and sharing opinions about cancer with peak cancer bodies (n = 50). More than two thirds of the 159 Subsample B respondents indicated they would be willing to complete a RT waiting room touchscreen survey on multiple occasions. 228 of the total sample of 277 patients completed follow-up consent forms. Of these, 188 (82%) indicated that they were willing to be contacted at least once over the following 12 months about other research studies.

Conclusions: The majority of RT patients indicated that one-off and repeat involvement in treatment centre-based questionnaire research, and receiving invitations (by mail, telephone or e-mail) to be involved in other cancer research, was acceptable. Assessing cancer outpatients’ willingness to be involved in different consumer activities and survey research throughout the year may be a useful approach for identifying and increasing involvement of treatment-phase cancer patients in these activities.