Australian cystic fibrosis community views on organoids

What is it about?

Targeted therapies for cystic fibrosis (CF) are available for some eligible individuals. However, treatment effectiveness is very variable amongst people with CF. 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. We conducted an online survey in people with CF, their carers and the wider community. Participants were invited to watch a 1minute explainer video about organoids and how they can be used to guide treatment choices. Acceptability was examined in five areas: 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. 188 participants completed the questionnaire. They included adults with CF, parents of children with CF, adults without CF and parents of children without CF. Use of organoids to guide treatment decisions in CF was acceptable to 86/90 (95%) CF participants and 98/98 (100%) community participants. The most important perceived advantage by the study participants was that organoids may improve treatment selection, improving a patient's quality of life and life expectancy. The most important disadvantage was that the organoid recommended treatment might be unavailable or too expensive. Participants were still very willing to use the technology after considering the advantages and disadvantages. Parents of children with CF were willing to pay more than community controls. CF participants (parents and adults) were willing to wait longer for results/recommendations from organoids. Participants chose the least invasive source of tissue if given a hypothetical choice of site.

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Photo by Michael Longmire on Unsplash

Photo by Michael Longmire on Unsplash

Why is it important?

It is important to establish if new technologies are acceptable to the people who will use them to improve translation from research to mainstream clinical care. This is the second study to investigate this question in the CF population and the first to also include community controls.