12th July 2019,
Yeojeong Jane So, Michael Jameson, Vincent Newton, Anne O’Donnell, Mark Jeffery, Christopher Jackson, Alexander Tuck, Kate Gregory, Richard North, Malcolm Anderson, Katrina Sharples, Michael Findlay, Michelle K Wilson
One in two New Zealanders will have contact with cancer, either personally or through a relative or friend.1 Cancer remains the leading cause of mortality in New Zealand and is…
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Clinical trials often provide access to unfunded or investigational treatments and trial participation has improved cancer outcome around the world. To better understand why New Zealand has low clinical trials participation rates, we conducted a qualitative survey of cancer patients around New Zealand to determine what barriers are present at patient level. Our patients reported strong enthusiasm in clinical trials across age, tumour group, demographics and location. Majority wanted to participate in clinical trials/research to help others but few patients felt that fear of randomisation held them back from participating in clinical trials.
Fewer than 5% of adult cancer patients participate in clinical trials, with multiple patient, clinician and institutional barriers identified. This study aimed to explore patient factors that impact access to cancer trials in New Zealand.
A questionnaire that included demographics and factors that might impact trial participation was circulated via nine district health boards (DHBs) and four cancer foundations to patients with a cancer diagnosis.
Between July 2016 and August 2017, 691 patients responded, 62% female and 77% aged >50 years. Most patients (86%) would consider trial participation, which differed by income (p=0.0001) but not by age, tumour type or gender. Patients would consider attending another hospital (44%) or relocating (11%); 10% considered trials a last resort. Advantageous factors to participation included: benefiting others (92%), better treatment (82%), more scans and longer follow-up (47% and 51%). Disincentives included fear of randomisation (78%), treatment toxicities (71%), time and cost of more visits (40%) and unspecified future research (32%).
Identified barriers to trial participation were similar in New Zealand to other developed countries. In this motivated cohort, patients are very interested in trial participation at any stage of their treatment and did not mind extra travel or tests.
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