Youth recruitment via cancer registries may be ineffective
Registries of cancer patients provide a centralised source of potential trial participants that could be particularly effective for recruiting low incidence cancer populations. Failure to recruit large, representative samples from the resource will drive up costs and limit trial effectiveness.
Adolescent and young adult (AYA) cancer survivors should, given the low incidence rate, be ideal candidates for recruitment via registries. However, Australian research published in BMC Medical Research Methodology achieved an overall consent rate of 7.8 per cent among AYAs.
Furthermore, the research raised sample bias concerns as 14 to 17 year olds were over-represented among the consenters.
Inability to obtain permission from clinicians to contact cancer survivors was a major limitation to recruitment. Clinician refusal and, more commonly, patients changing doctors resulted in the researchers failing to receive contact permission for more than half the 411 potential candidates.
A lack of continuity in the doctor-patient relationship, driven, in part, by increased population mobility, is cited as a reason 35 per cent of eligible candidates changing clinician since entering the registry.
Moving away from an active clinician consent protocol, which is used in Australia, may help increase recruitment rates. A consumer driven approach, called direct survivor consent, in which a patient informs the registry of what level of contact they want is suggested by the researchers.
“This consumer driven approach would allow survivors to choose the focus of research studies they are interested in participating in”, said the researchers, “and negate the need for clinician consent to contact the survivors”.
Obtaining contact details
Adopting direct survivor consent may overcome low clinician response rates but fails to tackle the problem of finding up-to-date contact details. Consequently the researchers propose recruitment of AYAs from treatment centres and clinics.
Many treatment centres and clinics would need to be involved to overcome the low prevalence of cancer in AYAs. Also, the need to target adult and children’s hospitals to representatively recruit across the AYA age range complicates the process.
Finally, the researchers speculate that use of a paper and pencil questionnaire may have limited responses. AYAs are 14 to 19 years old and, as such, the researchers believe online or telephone surveys may have increased response rates.
