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; Leanne Hassett

doi:10.1007/s40271-023-00628-9

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

Patient. 2023 Jul;16(4):385-398. doi: 10.1007/s40271-023-00628-9. Epub 2023 May 19.

Authors

Abby Haynes^{1

2

3}, Kirsten Howard⁴, Liam Johnson^{5

6}, Gavin Williams^{5

7}, Kelly Clanchy^{8

9}, Sean Tweedy¹⁰, Adam Scheinberg^{11

12}, Sakina Chagpar^{13

4}, Belinda Wang^{13

4}, Gabrielle Vassallo¹⁴, Rhys Ashpole¹⁵, Catherine Sherrington^{13

4}, Leanne Hassett^{13

16

17}

Affiliations

¹ Sydney Musculoskeletal Health: The University of Sydney and Sydney Local Health District, Gadigal Land, Sydney, NSW, Australia. abby.haynes@sydney.edu.au.
² Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Gadigal Land, Sydney, NSW, Australia. abby.haynes@sydney.edu.au.
³ Sydney Musculoskeletal Health, Level 10 KGV Building, Missenden Road, Camperdown (Gadigal land), NSW, 2050, Australia. abby.haynes@sydney.edu.au.
⁴ Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Gadigal Land, Sydney, NSW, Australia.
⁵ School of Health Sciences, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, VIC, Australia.
⁶ School of Behavioural and Health Sciences, Faculty of Health Sciences, Australian Catholic University, Melbourne, VIC, Australia.
⁷ Physiotherapy Department, Epworth HealthCare, Melbourne, VIC, Australia.
⁸ School of Health Sciences and Social Work, Griffith Health, Griffith University, Gold Coast, QLD, Australia.
⁹ Menzies Health Institute of Queensland, Griffith University, Gold Coast, QLD, Australia.
¹⁰ School of Human Movement and Nutrition Sciences, Faculty of Health and Behavioural Sciences, University of Queensland, Brisbane, QLD, Australia.
¹¹ Murdoch Children's Research Institute, Melbourne, VIC, Australia.
¹² Department of Paediatrics, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, VIC, Australia.
¹³ Sydney Musculoskeletal Health: The University of Sydney and Sydney Local Health District, Gadigal Land, Sydney, NSW, Australia.
¹⁴ Independent consumer representative, Sydney, NSW, Australia.
¹⁵ Insurance and Care (icare) NSW, Sydney, NSW, Australia.
¹⁶ Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.
¹⁷ Implementation Science Academy, Sydney Health Partners, Sydney, NSW, Australia.

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.

MeSH terms

Brain Injuries*
Brain Injuries, Traumatic*
Choice Behavior
Exercise
Humans
Patient Preference
Qualitative Research

Grants and funding

MRF2009099/National Health and Medical Research Council