Getting the Message Across: Are we using Best Practice for Patient Education?

Bolderston, Amanda; Bunsko, Joy; Bedard, Angela C.; Ferrier, Lynne; Dent, Pamela

doi:10.1016/j.jmir.2014.03.024

Cited by 2 publications

(2 citation statements)

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“…Ensuring fully informed consent will be challenging, given the complexity of the PDX process [ 2 ], differences in PDX models across institutions [ 2 ], the often overwhelming availability of cancer information [ 23 ], and low pre-existing health literacy in some patients [ 24 ]. PDX information should follow patient education guidelines [ 25 ] to ensure that materials are easy-to-understand, while consent consultations should carefully gauge patient/parent understanding, and encourage question-asking.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2018

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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.

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Section: Discussionmentioning

confidence: 99%

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

et al. 2018

View full text Add to dashboard Cite

show abstract

“…Ensuring fully informed consent will be challenging, given the complexity of the PDX process [2], differences in PDX models across institutions [2], the often overwhelming availability of cancer information [23], and low pre-existing health literacy in some patients [24]. PDX information should follow patient education guidelines [25] to ensure that materials are easy-tounderstand, while consent consultations should carefully gauge patient/parent understanding, and encourage question-asking. Cancer is a life threatening diagnosis: it is therefore understandable that patients and parents feel impatient to receive treatment recommendations.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2018

View full text Add to dashboard Cite

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.

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Getting the Message Across: Are we using Best Practice for Patient Education?

Cited by 2 publications

References 0 publications

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

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

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

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