Aims

In Australia, state-based cancer registries offer a mechanism for recruiting population-based samples of cancer patients for research; however, the suitability of this method for the recruitment of patients with low-incidence cancers for supportive care studies is unclear. This report describes the process of recruitment of primary brain tumour patients, response rates and sample representativeness.

Methods

We aimed to recruit a population-based sample of 40 newly diagnosed brain tumour patients through the Queensland Cancer Registry for a pilot longitudinal study of needs, distress and service utilisation. For eligible patients identified via the registry, consent to contact was sought from patients’ treating doctors, and once obtained, patients were invited to participate and consented. The CONSORT flowchart and descriptive statistics were used to describe participant flow through the recruitment process.

Results

Of 212 adults identified as eligible via the registry, consent to contact was attempted for 203 patients via treating doctors, and obtained for 97 patients (45.8%). Reasons for non-consent to contact (from clinicians) included no response (for 74 patients), refusal (20) and return-to-sender (12). Almost half (40; 18.9% of all potentially eligible patients) invited to participate consented and completed baseline data collection. Reasons for patient non-consent included no response (48 patients), refusal (5), death (3) and return-to-sender (1). Comparison of participants and non-participants (based on registry data) showed no significant differences in age at diagnosis, gender, area of residence or tumour characteristics (side, location, lobe, histology or grade).

Conclusions

Patient recruitment was limited primarily by non-response from clinicians, suggesting earlier clinician involvement is needed. Although the final response rate was low, the sample was representative of the target population’s demographic and disease characteristics, suggesting this method may be feasible for patient recruitment for future supportive care studies where generalisability is desired.