Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study.

ABSTRACT:

Background

We launched a patient engagement strategy to facilitate research involvement of the retinoblastoma (childhood eye cancer) community in Canada. To inform our strategy, we aimed to uncover the experiences with retinoblastoma, knowledge of retinoblastoma and research engagement among retinoblastoma survivors and parents.

Methods

Focus groups were held in Toronto and Calgary, including both in-person and remote participants (via videoconference). Discussions centred on experience with retinoblastoma, knowledge of the disease and engagement with research. Focus group transcripts were evaluated by inductive thematic analysis.

Results

Four focus groups (3 in Toronto, 1 in Calgary) were held with a collective total of 34 participants. Retinoblastoma had a substanti

SUBMITTER: Moses C 

PROVIDER: S-EPMC7321723 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature