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. Development of targeted therapies for Cystic Fibrosis (CF) is a viable treatment option now 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, acceptable 3-out-of-pocket costs, 4-turnaround time, and 5-source of tissue.
Results 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 may 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.
Footnotes
This manuscript has recently been accepted for publication in the ERJ Open Research. It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJOR online. Please open or download the PDF to view this article.
Conflict of interest: Dr. Fawcett has nothing to disclose.
Conflict of interest: Prof. Wakefield has nothing to disclose.
Conflict of interest: Dr. SIvam has nothing to disclose.
Conflict of interest: Prof. Middleton has nothing to disclose.
Conflict of interest: Prof. Wark has nothing to disclose.
Conflict of interest: Dr. Widger has nothing to disclose.
Conflict of interest: Prof. Jaffe has nothing to disclose.
Conflict of interest: Dr. Waters has nothing to disclose.
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- Received June 30, 2020.
- Accepted September 18, 2020.
- Copyright ©ERS 2020
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