Poster Presentation COSA 2015 ASM

Recruitment of carer/person with cancer dyads into a randomised controlled trial: factors associated with non-participation and reasons for decline (#312)

Leila Heckel 1 , Kate M Fennell 2 3 , John Reynolds 4 , David M Ashley 5 , Mari Botti 1 6 , Jacquie Chirgwin 7 8 , Richard H Osborne 1 , Melinda Williams 9 , Patricia M Livingston 1
  1. Faculty of Health, Deakin University, Burwood, Victoria, Australia
  2. Cancer Council South Australia, Adelaide, South Australia, Australia
  3. Flinders Centre for Innovation in Cancer, School of Medicine, Flinders University, Adelaide, South Australia, Australia
  4. Faculty of Medicine, Monash University, Melbourne, Victoria, Australia
  5. The Andrew Love Cancer Centre, Geelong, Victoria, Australia
  6. Epworth HealthCare, Richmond, Victoria, Australia
  7. Oncology, Eastern Health, Box Hill, Victoria, Australia
  8. Faculty of Health and Medicine, University of Newcastle, Newcastle, New South Wales, Australia
  9. Barwon South Western Regional Integrated Cancer Service, Geelong, Victoria, Australia

The aims of this study were to determine the profile of non-participants in a multi-centred, randomised controlled trial, designed to test the efficacy of a telephone-based intervention to reduce burden and depression in carers of persons newly diagnosed with cancer; and to examine the reasons for non-participation.

From August 2013 to December 2014, 216 carer/person with cancer dyads were recruited at four Australian hospitals. Individuals diagnosed with cancer (stage I-III) were identified through medical records and invited to participate when presenting at the hospital for treatment, together with their carer (N=737). Interested dyads were given an information sheet, consent form and baseline survey, and were phoned within 48hrs to confirm participation. Reasons for non-participation were collected from dyads who chose not to take part. Descriptive analysis was used to describe sample demographics, X2analysis to examine factors associated with non-participation.

Of 737 eligible dyads, 522 (71%) declined. Dyads were less likely to participate if the carer was male (X2=6.2, p<0.05) and in a non-spousal relationship with the person with cancer (X2=14.5, p<0.05). Dyads were less likely to take part if the person with cancer was receiving chemotherapy or radiotherapy only (X2=98.7, p<0.001) or was treated at a public health service (X2=36.6, p<0.001), as opposed to receiving a combination of treatments and attending a private health service. Most common stated reasons for non-participation were lack of interest (29%), too busy (28%), and no need for support (22%).

This study identifies carer/person with cancer dyads who are most likely to decline participation in health research. Specific characteristics of non-participation in research has implications for evaluating the external validity of findings and future approaches to recruitment.