Physical Activity Preferences of People Living with Brain Injury: Formative Qualitative Research to Develop a Discrete Choice Experiment

Abby Haynes (), Kirsten Howard, Liam Johnson, Gavin Williams, Kelly Clanchy, Sean Tweedy, Adam Scheinberg, Sakina Chagpar, Belinda Wang, Gabrielle Vassallo, Rhys Ashpole, Catherine Sherrington and Leanne Hassett
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Abby Haynes: Sydney Musculoskeletal Health: The University of Sydney and Sydney Local Health District
Kirsten Howard: The University of Sydney
Liam Johnson: University of Melbourne
Gavin Williams: University of Melbourne
Kelly Clanchy: Griffith Health, Griffith University
Sean Tweedy: University of Queensland
Adam Scheinberg: Murdoch Children’s Research Institute
Sakina Chagpar: Sydney Musculoskeletal Health: The University of Sydney and Sydney Local Health District
Belinda Wang: Sydney Musculoskeletal Health: The University of Sydney and Sydney Local Health District
Gabrielle Vassallo: Independent consumer representative
Rhys Ashpole: Insurance and Care (icare) NSW
Catherine Sherrington: Sydney Musculoskeletal Health: The University of Sydney and Sydney Local Health District
Leanne Hassett: Sydney Musculoskeletal Health: The University of Sydney and Sydney Local Health District

The Patient: Patient-Centered Outcomes Research, 2023, vol. 16, issue 4, No 9, 385-398

Abstract: Abstract Background and Objective The World Health Organization physical activity guidelines for people living with disability do not consider the needs of people living with moderate-to-severe traumatic brain injury. This paper describes the qualitative co-development of a discrete choice experiment survey to inform the adaption of these guidelines by identifying the physical activity preferences of people living with moderate-to-severe traumatic brain injury in Australia. Methods The research team comprised researchers, people with lived experience of traumatic brain injury and health professionals with expertise in traumatic brain injury. We followed a four-stage process: (1) identification of key constructs and initial expression of attributes, (2) critique and refinement of attributes, (3) prioritisation of attributes and refinement of levels and (4) testing and refining language, format and comprehensibility. Data collection included deliberative dialogue, focus groups and think-aloud interviews with 22 purposively sampled people living with moderate-to-severe traumatic brain injury. Strategies were used to support inclusive participation. Analysis employed qualitative description and framework methods. Results This formative process resulted in discarding, merging, renaming and reconceptualising attributes and levels. Attributes were reduced from an initial list of 17 to six: (1) Type of activity, (2) Out-of-pocket cost, (3) Travel time, (4) Who with, (5) Facilitated by and (6) Accessibility of setting. Confusing terminology and cumbersome features of the survey instrument were also revised. Challenges included purposive recruitment, reducing diverse stakeholder views to a few attributes, finding the right language and navigating the complexity of discrete choice experiment scenarios. Conclusions This formative co-development process significantly improved the relevance and comprehensibility of the discrete choice experiment survey tool. This process may be applicable in other discrete choice experiment studies.

Date: 2023
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DOI: 10.1007/s40271-023-00628-9

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