Protocol for the avatar acceptability study: a multiperspective cross-sectional study evaluating the acceptability of using patient-derived xenografts to guide personalised cancer care in Australia and New Zealand

Abstract

IntroductionPatient-derived xenografts (PDXs) have the potential to transform personalised cancer care, however, little is known about the acceptability of using PDXs to guide treatment decision-making. Given that patient and community preferences can influence satisfaction with care as well as the success of new technologies, we will evaluate the acceptability of PDXs in individuals affected by cancer and community comparisons.Methods and analysisThis comparative cross-sectional study will recruit 323 individuals affected by cancer (cancer survivors (of childhood or adult cancer) and parents of childhood cancer survivors) and 323 community comparisons (adults and parents). We will collect data via structured interviews and questionnaires. To determine the acceptability of PDXs, we will assess five domains: willingness to use PDXs when/if diagnosed with cancer, perceived advantages and disadvantages of PDXs, maximum acceptable out-of-pocket costs per patient, maximum acceptable turnaround time to receive results and maximum acceptable number of mice sacrificed per patient. The primary endpoint will be participants’ decisional balance ratio (calculated as participants’ advantages ratings divided by perceived disadvantages ratings).Ethics and disseminationThe study protocol has been approved by the South Eastern Sydney Local Health District Human Research Ethics Committee (HREC:12/173) and UNSW Sydney (HC15773). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be published on the Behavioural Sciences Unit website.

The Avatar Acceptability Study: Survivor, Parent and Community Willingness to Use Patient-Derived Xenografts to Personalize Cancer Care

“…Aligning with the protocol [ 19 ], we aimed to recruit a minimum of 323 individuals affected by cancer and 323 community comparisons. We matched the community comparison groups to the groups affected by cancer (by age and sex).…”

“…Significant differences were determined using Welch's t -test, given the large difference in sample size across these two diagnosis groups [ 21 ]. We planned a-priori to analyze data from participants who indicated that they did not understand PDXs separately [ 19 ]. Regressions that included income as a variable excluded participants who chose not to report their income ( Table 2 ).…”

Avatar acceptability: views from the Australian Cystic Fibrosis community on the use of personalised organoid technology to guide treatment decisions

“…Considering the similarities between a platform that uses patient-derived organoids and mouse-derived xenografts, this study protocol was based on that of W akefield et al . [ 25 , 26 ] who investigated the acceptability of mouse-derived xenografts used in childhood cancer. We assessed acceptability over five domains.…”

“…These were adapted from W akefield et al . [ 25 ] to be more specific to CF treatment using our experience of managing patients with CF. Maximum acceptable cost: We asked participants the maximum out-of-pocket amount that they would be willing to pay for organoid technology.…”

“…Some of the limitations of organoids may influence a person's assessment of the acceptability. Limitations include the need for a repeat procedure to obtain a sample in the event of cell culture failure and the time taken to establish the cell cultures, which can be up to a few months, meaning that answers are not made available immediately [ 25 ].…”