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

Laura K Fawcett, Claire E Wakefield, Sheila Sivam, Peter G Middleton, Peter Wark, John Widger, Adam Jaffe, Shafagh A Waters
Author Information
  1. Laura K Fawcett: School of Women's and Children's Health, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia. ORCID
  2. Claire E Wakefield: School of Women's and Children's Health, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia.
  3. Sheila Sivam: Dept of Respiratory and Sleep Medicine, Royal Prince Alfred Hospital, Sydney, NSW, Australia.
  4. Peter G Middleton: Cystic Fibrosis Unit, Dept of Respiratory and Sleep Medicine, Westmead Hospital, Sydney, NSW, Australia. ORCID
  5. Peter Wark: Centre for Healthy Lungs, University of Newcastle, Newcastle, NSW, Australia. ORCID
  6. John Widger: School of Women's and Children's Health, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia.
  7. Adam Jaffe: School of Women's and Children's Health, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia.
  8. Shafagh A Waters: School of Women's and Children's Health, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia. ORCID

Abstract

BACKGROUND: patient-oriented research approaches that reflect the needs and priorities of those most affected by health research outcomes improves translation of research findings into practice. Targeted therapies for Cystic Fibrosis (CF) are now a viable treatment option for some eligible individuals despite the heterogeneous patient-specific therapeutic response. This has necessitated development of a clinical tool that predicts treatment response for individual patients. patient-derived mini-organs (organoids) have been at the forefront of this development. However, little is known about their acceptability in CF patients and members of the public.
METHODS: We used a cross-sectional observational design to conduct an online survey in people with CF, their carers and community comparisons. Acceptability was examined in five domains: 1) willingness to use organoids, 2) perceived advantages and disadvantages of organoids, 3) acceptable out-of-pocket costs, 4) turnaround time and 5) source of tissue.
RESULTS: In total, 188 participants completed the questionnaire, including adults with CF and parents of children with CF (90 (48%)), and adults without CF and parents of children without CF (98 (52%)). Use of organoids to guide treatment decisions in CF was acceptable to 86 (95%) CF participants and 98 (100%) community participants. The most important advantage was that organoids may improve treatment selection, improving the patient's quality of life and life expectancy. The most important disadvantage was that the organoid recommended treatment might be unavailable or too expensive.
CONCLUSIONS: These findings indicate acceptance of patient-derived organoids as a tool to predict treatment response by the majority of people surveyed. This may indicate successful future implementation into healthcare systems.

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Word Cloud

Created with Highcharts 10.0.0CFtreatmentorganoidsresearchresponsecommunityparticipantsfindingsdevelopmenttoolpatientspeopleuseacceptableadultsparentschildrenwithout98guidedecisionsimportantmaylifeorganoidindicateBACKGROUND:Patient-orientedapproachesreflectneedsprioritiesaffectedhealthoutcomesimprovestranslationpracticeTargetedtherapiescysticfibrosisnowviableoptioneligibleindividualsdespiteheterogeneouspatient-specifictherapeuticnecessitatedclinicalpredictsindividualPatient-derivedmini-organsforefrontHoweverlittleknownacceptabilitymemberspublicMETHODS:usedcross-sectionalobservationaldesignconductonlinesurveycarerscomparisonsAcceptabilityexaminedfivedomains:1willingness2perceivedadvantagesdisadvantages3out-of-pocketcosts4turnaroundtime5sourcetissueRESULTS:total188completedquestionnaireincluding9048%52%Use8695%100%advantageimproveselectionimprovingpatient'squalityexpectancydisadvantagerecommendedmightunavailableexpensiveCONCLUSIONS:acceptancepatient-derivedpredictmajoritysurveyedsuccessfulfutureimplementationhealthcaresystemsAvataracceptability:viewsAustralianCysticFibrosispersonalisedtechnology

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