The challenges of recruiting cancer patient/caregiver dyads: informing randomized controlled trials

BACKGROUND: Family members are increasingly involved in the care of cancer patients, however many are not prepared for this challenging role. Intervention-based studies are valuable to inform the most appropriate and effective support for caregivers. Barriers in the recruitment of patient/caregiver dyads exist but the reasons for non-participation are less well understood. This analysis determined the factors associated with participation in a randomized controlled trial involving patient/caregiver dyads, reasons for non-participation and factors associated with these reasons. METHODS: Patients with any type of cancer (other than non-melanoma skin cancer), and their caregiver were recruited at four Australian health services. Eligible patients were invited to participate together with their caregiver (N = 737). Non-participation data were collected from non-participants. Bivariate and binary logistic regression analyses were conducted to examine factors associated with participation. RESULTS: Of the 737 eligible dyads, 521 (71%) declined participation. Dyad characteristics associated with participation were caregiver gender, patient treatment modality and hospital type. The odds for participating were almost two times greater for female than male caregivers (p = 0.005); 13 times greater for patients receiving chemoradiotherapy compared to radiotherapy alone (p < 0.001); and three times greater for dyads attending a private versus public hospital (p < 0.001). Reasons for non-participation were lack of interest (33%), lack of time (29%), not requiring support (23%), too burdensome (15%); factors significantly associated with these reasons were treatment modality, patient age, cancer type, and hospital type. Patients diagnosed with prostate cancer and receiving chemotherapy alone were less likely to decline due to a lack of interest. Patients more likely to decline due to lack of time were those aged 40-59 years and receiving chemotherapy alone. Patients who were more likely to decline because they felt participation was too burdensome were those attending a private hospital for treatment. CONCLUSIONS: To optimize recruitment, it is recommended that special attention is given to different cancer types and treatment modalities, gender and age. Approaching dyads at varied time points when their need for support is high is recommended. This analysis provides important information for researchers undertaking randomized controlled trials involving people diagnosed with cancer and their caregivers.