Why do so Few Kiwi Cancer Patients Participate in Clinical Trials?

Jul 14, 2019 | Clinical Trial Participation New Zealand, Patient Engagement

clinical trial, 3D rendering, rough street sign collection

Although when surveyed Kiwi cancer patients are keen on clinical trial participation very few actually join a clinical trial reports a new study in the New Zealand Medical Journal.

Jamie Morton of the New Zealand Herald reports that cancer now affects one in two Kiwis—either directly or through a friend or family member that has been diagnosed with the disease. Clinical research participation rates are very low, however—typically 1 % to 2%–far below international targets.

Research on Kiwi Clinical Trial Participation

Researchers from Auckland University and Auckland District Health Board conducted a survey on this topic, surveying nearly 700 patients to determine what can be done about the terribly low participation rates.

Study Demographics

75% of the patients were over 50; nearly 70% were women and approximately 80% were Pakeha, and around 40% had an annual household income lower than $55,000.

Study Metrics

  • The vast majority had heard of clinical trials but only 23% of the patients had a trial mention to them from a physician, for example. Only 18% had prior experience with clinical trials.
  • 60% wanted to be told about a trial at any time there was one open to them and just 10% thought the option should be last resort.
  • Respondents don’t mind traveling to participation—in fact, up to 33% were willing to travel two hours and 10% were even willing to relocate.
  • Of those Kiwis that have already been involved with clinical research, 94% would consider participation again.
  • Only one patient out of the 2.5% who would participate again gave toxicity related to treatment as the reason.
  • Why would Kiwis consider participation: 92% said that they would do so to benefit other patients; 85% to help doctors’ research; and 82% for better access to treatment (e.g. clinical research as care option).
  • What would discourage Kiwis from participating in clinical trials?  78% report fear of randomization; 71% treatment toxicities; 71% time and cost associated with site visits; 40%; uncertainty as to how the tissue would be used 32%.

Cultural Issues

Asian Pacific Islanders such as Maori, Samoan or other Polynesian or Melanesian populations may up to 25% be more concerned about studies but with pakeha patients, this was less so.

Conclusion

Most Kiwis are willing and ready to participate in clinical trials. The patient experience is critically important and clearly, the gap or delta between the actual participation numbers and what patients report is wide—the health systems and research sponsors need to do a far better job of outreach and engagement in New Zealand.

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