BackgroundUsing patient-derived xenografts (PDXs) to assess chemosensitivity to anti-cancer agents in real-time may improve cancer care by enabling individualized clinical decision-making. However, it is unknown whether this new approach will be met with acceptance by patients, family and community.MethodsWe used a cross-sectional structured survey to investigate PDX acceptability with 1550 individuals across Australia and New Zealand (648 survivors of adult and childhood cancer, versus 650 community comparisons; and 48 parents of childhood cancer survivors versus 204 community parents). We identified factors influencing willingness-to-use PDXs, willingness-to-pay, maximum acceptable wait-time, and maximum acceptable number of mice used per patient.FindingsPDXs were highly acceptable: >80% of those affected by cancer felt the potential advantages of PDXs outweighed the disadvantages (community participants: 68%). Survivors' and survivors' parents' most highly endorsed advantage was ‘increased chance of survival’. ‘Harm to animals’ was the least endorsed disadvantage for all groups. Cancer survivors were more willing to use PDXs than community comparisons [p < ·001]. Survivors and survivors' parents were willing to pay more [p < ·001; p = ∙004 respectively], wait longer for results [p = ·03; p = ∙01], and use more mice [p = ·01; p < ∙001] than community comparisons. Male survivors found PDXs more acceptable [p = ·01] and were willing to pay more [p < ·001] than female survivors. Survivors with higher incomes found PDXs more acceptable [p = ·002] and were willing to pay more [p < ·001] than survivors with lower incomes. Mothers found PDXs more acceptable [p = ·04] but were less willing to wait [p = ·02] than fathers.InterpretationWe found significant attitudinal support for PDX-guided cancer care. Willingness-to-pay and maximum acceptable number of mice align well with likely future usage. Maximum acceptable wait-times were lower than is currently achievable, highlighting an important area for future patient education until technology has caught up.
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.
Background: Using patient-derived xenografts (PDXs) to assess chemosensitivity to anti-cancer agents in realtime may improve cancer care by enabling individualized clinical decision-making. However, it is unknown whether this new approach will be met with acceptance by patients, family and community. Methods: We used a cross-sectional structured survey to investigate PDX acceptability with 1550 individuals across Australia and New Zealand (648 survivors of adult and childhood cancer, versus 650 community comparisons; and 48 parents of childhood cancer survivors versus 204 community parents). We identified factors influencing willingness-to-use PDXs, willingness-to-pay, maximum acceptable wait-time, and maximum acceptable number of mice used per patient. Findings: PDXs were highly acceptable: N80% of those affected by cancer felt the potential advantages of PDXs outweighed the disadvantages (community participants: 68%). Survivors' and survivors' parents' most highly endorsed advantage was 'increased chance of survival'. 'Harm to animals' was the least endorsed disadvantage for all groups. Cancer survivors were more willing to use PDXs than community comparisons [p b •001]. Survivors and survivors' parents were willing to pay more [p b •001; p = •004 respectively], wait longer for results [p = •03; p = •01], and use more mice [p = •01; p b •001] than community comparisons. Male survivors found PDXs more acceptable [p = •01] and were willing to pay more [p b •001] than female survivors. Survivors with higher incomes found PDXs more acceptable [p = •002] and were willing to pay more [p b •001] than survivors with lower incomes. Mothers found PDXs more acceptable [p = •04] but were less willing to wait [p = •02] than fathers.Interpretation: We found significant attitudinal support for PDX-guided cancer care. Willingness-to-pay and maximum acceptable number of mice align well with likely future usage. Maximum acceptable wait-times were lower than is currently achievable, highlighting an important area for future patient education until technology has caught up.
BACKGROUND Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2‐stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects. METHODS The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants. In Stage 2, during interviews, 20 survivors (55% of whom were female; mean age, 26.0 years [range, 18‐39 years]; standard deviation [SD], 0.80) and 20 parents (55% of whom were male; mean age of child survivor, 14.2 years [range, 10‐19 years]; SD, 0.79) rated the 7 most common benefits and concerns from those identified in Stage 1. Interviews were transcribed verbatim and analyzed. Decisional balance ratios were calculated by dividing the participants' average concerns scores with the average benefits scores. RESULTS Genetic testing for late effects was highly acceptable: 95% of participants leaned toward testing, and the majority (65.9%) would pay up to Australian $5000. The majority (97.2%) reported it was acceptable to wait for up to 6 months to receive results, and to be offered testing immediately after treatment or when the survivor reached adulthood (62.9%). Survivors and parents had a highly positive decisional balance (Mean (M), 0.5 [SD, 0.38] and M, 0.5 [SD, 0.39], respectively), indicating that perceived benefits outweighed concerns. CONCLUSIONS Although to our knowledge clinical efficacy has yet to be clearly demonstrated, survivors and parents described positive interest in genetic testing for the risk of developing late effects. Perceived benefits outweighed harms, and the majority of participants would be willing to pay, and wait, for testing. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2876–2885. © 2016 American Cancer Society
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