Physical activity preferences of people living with brain injury : Formative qualitative research to develop a discrete choice experiment

Journal article

Haynes, Abby, Howard, Kirsten, Johnson, Liam, Williams, Gavin, Clanchy, Kelly, Tweedy, Sean, Scheinberg, Adam, Chagpar, Sakina, Wang, Belinda, Vassallo, Gabrielle, Ashpole, Rhys, Sherrington, Catherine and Hassett, Leanne. (2023). Physical activity preferences of people living with brain injury : Formative qualitative research to develop a discrete choice experiment. Patient. 16(4), pp. 385-398. https://doi.org/10.1007/s40271-023-00628-9
AuthorsHaynes, Abby, Howard, Kirsten, Johnson, Liam, Williams, Gavin, Clanchy, Kelly, Tweedy, Sean, Scheinberg, Adam, Chagpar, Sakina, Wang, Belinda, Vassallo, Gabrielle, Ashpole, Rhys, Sherrington, Catherine and Hassett, Leanne
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.

Year2023
JournalPatient
Journal citation16 (4), pp. 385-398
PublisherSpringer
ISSN1178-1653
Digital Object Identifier (DOI)https://doi.org/10.1007/s40271-023-00628-9
PubMed ID37204699
Scopus EID2-s2.0-85159824335
PubMed Central IDPMC10196322
Open accessPublished as ‘gold’ (paid) open access
Page range385-398
Funder Medical Research Future Fund (MRFF), Australian Government
Publisher's version
License
File Access Level
Open
Output statusPublished
Publication dates
Online19 May 2023
Publication process dates
Accepted31 Mar 2023
Deposited08 Aug 2023
Grant IDAPP2009099
Permalink -

https://acuresearchbank.acu.edu.au/item/8z775/physical-activity-preferences-of-people-living-with-brain-injury-formative-qualitative-research-to-develop-a-discrete-choice-experiment

Log in to edit

Download files

Publisher's version
OA_Haynes_2023_Physical_activity_preferences_of_people_living.pdf
License: CC BY-NC 4.0
File access level: Open

  • 60
    total views
  • 51
    total downloads
  • 2
    views this month
  • 2
    downloads this month
These values are for the period from 19th October 2020, when this repository was created.

Export as

Related outputs

ZOom Delivered Intervention Against Cognitive decline (ZODIAC) COVID-19 pandemic adaptations to the Post-Ischaemic Stroke Cardiovascular Exercise Study (PISCES) : protocol for a randomised controlled trial of remotely delivered fitness training for brain health
Brodtmann, Amy, Billett, Alex, Telfer, Rachael, Adkins, Kim, White, Laura, McCambridge, Laura J. E., Burrell, Louise, Thijs, Vincent, Kramer, Sharon, Werden, Emilio, Cardoso, Barbara R., Case, Matthew, Hung, Stanley Hughwa, Churilov, Leonid, Bernhardt, Julie, Hayward, Kathryn and Johnson, Liam Gerard. (2024). ZOom Delivered Intervention Against Cognitive decline (ZODIAC) COVID-19 pandemic adaptations to the Post-Ischaemic Stroke Cardiovascular Exercise Study (PISCES) : protocol for a randomised controlled trial of remotely delivered fitness training for brain health. Trials. 25(1), pp. 1-12. https://doi.org/10.1186/s13063-024-08154-1
Is early initiated cardiorespiratory fitness training within a model of stroke-integrated cardiac rehabilitation safe and feasible?
Machado, Natasha, Williams, Gavin, Olver, John and Johnson, Liam Gerard. (2024). Is early initiated cardiorespiratory fitness training within a model of stroke-integrated cardiac rehabilitation safe and feasible? Journal of Stroke & Cerebrovascular Diseases. 33(2), pp. 1-10. https://doi.org/10.1016/j.jstrokecerebrovasdis.2023.107493
The safety and feasibility of early cardiorespiratory fitness testing after stroke
Machado, Natasha, Williams, Gavin, Olver, John and Johnson, Liam. (2023). The safety and feasibility of early cardiorespiratory fitness testing after stroke. PM&R. 15(3), pp. 291-301. https://doi.org/10.1002/pmrj.12787
Effect of exercise on brain-derived neurotrophic factor in stroke survivors : A systematic review and meta-analysis
Ashcroft, Sarah K., Ironside, Daniel D., Johnson, Liam, Kuys, Suzanne S. and Thompson-Butel, Angelica G.. (2022). Effect of exercise on brain-derived neurotrophic factor in stroke survivors : A systematic review and meta-analysis. Stroke. 53(12), pp. 3706-3716. https://doi.org/10.1161/STROKEAHA.122.039919
Maintenance of cardiorespiratory fitness in people with stroke : A systematic review and meta-analysis
Machado, Natasha, Wingfield, Matthew, Kramer, Sharon, Olver, John, Williams, Gavin and Johnson, Liam. (2022). Maintenance of cardiorespiratory fitness in people with stroke : A systematic review and meta-analysis. Archives of Physical Medicine and Rehabilitation. 103(7), pp. 1410-1421. https://doi.org/10.1016/j.apmr.2022.01.151
Revisiting poststroke upper limb stratification : Resilience in a larger cohort
Varley, Benjamin J., Shiner, Christine T., Johnson, Liam, McNulty, Penelope A. and Thompson Butel, A.. (2021). Revisiting poststroke upper limb stratification : Resilience in a larger cohort. Neurorehabilitation and Neural Repair. 35(3), pp. 280-289. https://doi.org/10.1177/1545968321992048
Determining maximal tolerable aerobic training intensity in the acute phase after stroke : A novel dose ranging trial protocol
Kramer, Sharon F., Cumming, Toby, Johnson, Liam, Churilov, Leonid and Bernhardt, Julie. (2020). Determining maximal tolerable aerobic training intensity in the acute phase after stroke : A novel dose ranging trial protocol. Journal of Stroke and Cerebrovascular Diseases. 29(12), p. Article 105359. https://doi.org/10.1016/j.jstrokecerebrovasdis.2020.105359
Emerging stroke clinicians and scientists : An Australian experience
Hayward, Kathryn S., Johnson, Liam and Yassi, Nawaf. (2020). Emerging stroke clinicians and scientists : An Australian experience. Stroke. 51(2), pp. e21-e23. https://doi.org/10.1161/STROKEAHA.119.028210
Physical fitness training for stroke patients
Saunders, D. H., Sanderson, M., Hayes, S., Johnson, L., Kramer, S., Carter, D. D., Jarvis, H., Brazzelli, M. and Mead, G. E.. (2020). Physical fitness training for stroke patients. Cochrane Database of Systematic Reviews. (3). https://doi.org/10.1002/14651858.CD003316.pub7
Safety of performing a graded exercise test early after stroke and transient ischemic attack
Johnson, Liam, Kramer, Sharon F., Catanzariti, Gabriella, Kaffenberger, Tina, Cumming, Toby and Bernhardt, Julie. (2020). Safety of performing a graded exercise test early after stroke and transient ischemic attack. Physical Medicine and Rehabilitation. 12(5), pp. 445-453. https://doi.org/10.1002/pmrj.12259
An Innovative STRoke Interactive Virtual thErapy (STRIVE) online platform for community-dwelling stroke survivors : A randomized controlled trial
Johnson, Liam, Bird, Marie-Louise, Muthalib, Makii and Teo, Wei-Peng. (2020). An Innovative STRoke Interactive Virtual thErapy (STRIVE) online platform for community-dwelling stroke survivors : A randomized controlled trial. Archives of Physical Medicine and Rehabilitation. 101, pp. 1131-1137. https://doi.org/10.1016/j.apmr.2020.03.011
Acute hospital admission for stroke is characterised by inactivity
Sheedy, R., Kramer, S. F., Johnson, L., Shields, N., Churilov, L., Cadilhac, D. A. and Bernhardt, J.. (2020). Acute hospital admission for stroke is characterised by inactivity. Stroke Research and Treatment. 2020, p. 5879295. https://doi.org/10.1155/2020/5879295
Telehealth intervention programs for seniors: An observational study of a community-embedded health monitoring initiative
Hamilton, Taya, Johnson, Liam, Quinn, Brian T., Coppola, Jean, Sachs, David, Migliaccio, John, Phipps, Colette, Schwartz, Jennifer, Capasso, Marikay, Carpenter, Mae and Putrino, David. (2020). Telehealth intervention programs for seniors: An observational study of a community-embedded health monitoring initiative. Telemedicine and e-health. 26(4), pp. 438-445. https://doi.org/10.1089/tmj.2018.0248
An automated, electronic assessment tool can accurately classify older adult postural stability
Johnson, Liam, Fry, Adam, Dehbandi, Behdad, Rubin, Lawrence, Halem, Michael, Barachant, Alexandre, Smeragliuolo, Anna H. and Putrino, David. (2019). An automated, electronic assessment tool can accurately classify older adult postural stability. Journal of Biomechanics. 93, pp. 6-10. https://doi.org/10.1016/j.jbiomech.2019.06.001
Possible hormone predictors of physical performance in adolescent team sport athletes
Martin, Alanna C., Heazlewood, Ian, Kitic, Cecilia M., Lys, Isabelle and Johnson, Liam. (2019). Possible hormone predictors of physical performance in adolescent team sport athletes. Journal of Strength and Conditioning Research. 33(2), pp. 417 - 425. https://doi.org/10.1519/JSC.0000000000002014
The post ischaemic stroke cardiovascular exercise study : Protocol for a randomised controlled trial of fitness training for brain health
Johnson, Liam, Werden, Emilio, Shirbin, Chris, Bird, Laura, Landau, Elizabeth, Cumming, Toby, Churilov, Leonid, Bernhardt, Julie A., Thijs, Vincent and Brodtmann, Amy. (2018). The post ischaemic stroke cardiovascular exercise study : Protocol for a randomised controlled trial of fitness training for brain health. European Stroke Journal. 3(4), pp. 379-386. https://doi.org/10.1177/2396987318785845
Concurrent exergaming and transcranial direct current stimulation to improve balance in people with Parkinson's disease: study protocol for a randomised controlled trial
Dale M. Harris, Timo Rantalainen, Makii Muthalib, Liam Johnson, Rachel L. Duckham and Stuart T. Smith. (2018). Concurrent exergaming and transcranial direct current stimulation to improve balance in people with Parkinson's disease: study protocol for a randomised controlled trial. Trials. 19(387), pp. 1-13. https://doi.org/10.1186/s13063-018-2773-6
Activity monitors for increasing physical activity in adult stroke survivor
Elizabeth A. Lynch, Karen Borschmann, Michele Callisaya, N. Fini, Heidi Janssen, Liam Johnson, Taryn M. Jones, Sharon Kramer, Suzanne Kuys, Niruthikha Mahendran, Dawn B. Simpson and Carolie English. (2018). Activity monitors for increasing physical activity in adult stroke survivor. Cochrane Database of Systematic Reviews. (7). https://doi.org/10.1002/14651858.CD012543.pub2
Innovative STRoke Interactive Virtual thErapy (STRIVE) online platform for community-dwelling stroke survivors: A randomised controlled trial protocol
Johnson, Liam, Bird, Marie-Louise, Muthalib, Makii and Teo, Wei-Peng. (2018). Innovative STRoke Interactive Virtual thErapy (STRIVE) online platform for community-dwelling stroke survivors: A randomised controlled trial protocol. BMJ Open. 8(1), pp. 1 - 8. https://doi.org/10.1136/bmjopen-2017-018388
Activity monitors for increasing physical activity in adult stroke survivors
Lynch, Elizabeth A., Jones, Taryn M., Simpson, Dawn B., Fini, Natalie A., Kuys, Suzanne S., Borschmann, Karen, Kramer, Sharon, Johnson, Liam, Callisaya, Michele L., Mahendran, Niruthikha, Janssen, Heidi and English, Carolie. (2018). Activity monitors for increasing physical activity in adult stroke survivors. Cochrane Database of Systematic Reviews. 2018(7), pp. 1 - 63. https://doi.org/10.1002/14651858.CD012543.pub2
Validity of multi-sensory array to measure energy expenditure of an activity bout in early stroke survivors
Kramer, Sharon Flora, Johnson, Liam, Bernhardt, Julie and Cumming, Toby. (2018). Validity of multi-sensory array to measure energy expenditure of an activity bout in early stroke survivors. Stroke Research and Treatment. 2018, pp. 1 - 8. https://doi.org/10.1155/2018/9134547
The energy cost of steady-state physical activity in acute stroke
Kramer, Sharon, Cumming, Toby, Bernhardt, Julie and Johnson, Liam. (2018). The energy cost of steady-state physical activity in acute stroke. Journal of Stroke and Cerebrovascular Diseases. 27(4), pp. 1047 - 1054. https://doi.org/10.1016/j.jstrokecerebrovasdis.2017.11.010
Using non-invasive transcranial stimulation to improve motor and cognitive function in parkinson’s disease: a systematic review and meta-analysis scientific reports
Goodwill, Alicia, Lum, Jarrad, Hendy, Ashlee, Muthalib, Makii, Johnson, Liam, Albein-Urios, Natalia and Teo, Wei-Peng. (2017). Using non-invasive transcranial stimulation to improve motor and cognitive function in parkinson’s disease: a systematic review and meta-analysis scientific reports. Scientific Reports. 7, pp. 1 - 11. https://doi.org/10.1038/s41598-017-13260-z
Early rehabilitation after stroke
Bernhardt, Julie, Godecke, Erin, Johnson, Liam and Langhorne, Peter. (2017). Early rehabilitation after stroke. Current Opinion in Neurology. 30(1), pp. 48 - 54. https://doi.org/10.1097/WCO.0000000000000404
Overexpression and knock-down studies highlight that a disintegrin and metalloproteinase 28 controls proliferation and migration in human prostate cancer
Caroline Rudnicka, Satsuki Mochizuki, Yasunori Okada, Claire McLaughlin, Peter J. Leedman, Lisa Stuart, Michael Epis, Gerard Hoyne, Sherif Boulos, Liam Johnson, Markus Schlaich and Vance Matthews. (2016). Overexpression and knock-down studies highlight that a disintegrin and metalloproteinase 28 controls proliferation and migration in human prostate cancer. Medicine. 95(40), pp. 1-8. https://doi.org/10.1097/MD.0000000000005085
Progesterone and estradiol levels are predictors of performance in a test of anaerobic capacity in young female netball athletes
Heazlewood, Ian, Martin, Alanna, Johnson, Liam, Lys, Isabelle and Kitic, Cecilia M.. (2016). Progesterone and estradiol levels are predictors of performance in a test of anaerobic capacity in young female netball athletes. Australia: Exercise & Sports Science Australia. pp. 167 - 167
Accelerometer use in young people with Down syndrome: A preliminary cross-validation and reliability study
Peiris, Casey L., Cumming, Toby B., Kramer, Sharon, Johnson, Liam, Taylor, Nicholas and Shields, Nora. (2016). Accelerometer use in young people with Down syndrome: A preliminary cross-validation and reliability study. Journal of Intellectual and Developmental Disability. 42(4), pp. 339-350. https://doi.org/10.3109/13668250.2016.1260100
Testosterone levels are predictors of multistage fitness test performance in young male and female hockey athletes
Heazlewood, Ian, Martin, Alanna, Johnson, Liam, Lys, Isabelle Yoke Yien and Kitic, Cecilia M.. (2016). Testosterone levels are predictors of multistage fitness test performance in young male and female hockey athletes. 7th Exercise and Sports Science Australia (ESSA) Research to Practice Conference, Melbourne, Australia, 14th - 16th April, 2016. Australia: Exercise & Sports Science Australia.
An acute bout of exercise improves the cognitive performance of older adults
Johnson, Liam, Addamo, Patricia K., Raj, Isaac Selva, Borkoles, Erika, Wyckelsma, Victoria, Cyarto, Elizabeth V. and Polman, Remco C.. (2016). An acute bout of exercise improves the cognitive performance of older adults. Journal of Aging and Physical Activity. 24(4), pp. 591-598. https://doi.org/10.1123/japa.2015-0097
Proposal for a candidate core set of fitness and strength tests for patients with childhood or adult idiopathic inflammatory myopathies
Van Der Stap, Djamilla K. D., Rider, Lisa G., Alexanderson, Helene, Huber, Adam M., Gualano, Bruno, Gordon, Patrick, Van Der Net, Janjaap, Mathiesen, Pernille, Johnson, Liam G., Ernste, Floranne C., Feldman, Brian M., Houghton, Kristin M., Singh-Grewal, Davinder, Kutzbach, Abraham Garcia, Munters, Li Alemo and Takken, Tim. (2016). Proposal for a candidate core set of fitness and strength tests for patients with childhood or adult idiopathic inflammatory myopathies. Journal of Rheumatology. 43(1), pp. 169 - 176. https://doi.org/10.3899/jrheum.150270
Concurrent transcranial direct current stimulation and progressive resistance training in Parkinson's disease: Study protocol for a randomised controlled trial
Hendy, Ashlee M., Tillman, Alex, Rantalainen, Timo, Muthalib, Makii, Johnson, Liam, Kidgell, Dawson J., Wundersitz, Daniel, Enticott, Peter G. and Teo, Wei-Peng. (2016). Concurrent transcranial direct current stimulation and progressive resistance training in Parkinson's disease: Study protocol for a randomised controlled trial. Trials. 17(1), pp. 1 - 13. https://doi.org/10.1186/s13063-016-1461-7
Energy Expenditure and Cost during Walking after Stroke: A Systematic Review
Kramer, Sharon, Johnson, Liam, Bernhardt, Julie and Cumming, Toby. (2016). Energy Expenditure and Cost during Walking after Stroke: A Systematic Review. Archives of Physical Medicine and Rehabilitation. 97(4), pp. 619-632. https://doi.org/10.1016/j.apmr.2015.11.007
An exploratory analysis of possible hormone predictors of physical performance in male and female adolescent basketball athletes
Martin, Alanna, Heazlewood, Ian, Kitic, Cecilia M., Lys, Isabelle Yoke Yien and Johnson, Liam. (2016). An exploratory analysis of possible hormone predictors of physical performance in male and female adolescent basketball athletes. Australia: Australian Strength and Conditioning Association. pp. 1 - 1
Light physical activity is positively associated with cognitive performance in older community dwelling adults
Johnson, Liam G., Butson, Michael L., Polman, Remco C., Raj, Isaac S., Borkoles, Erika, Scott, David, Aitken, Dawn and Jones, Graeme. (2016). Light physical activity is positively associated with cognitive performance in older community dwelling adults. Journal of Science and Medicine in Sport. 19(11), pp. 877-882. https://doi.org/10.1016/j.jsams.2016.02.002
Early mobilization after stroke: Early adoption but limited evidence
Bernhardt, Julie, English, Carolie, Johnson, Liam and Cumming, Toby B.. (2015). Early mobilization after stroke: Early adoption but limited evidence. Stroke. 46(4), pp. 1141 - 1146. https://doi.org/10.1161/STROKEAHA.114.007434
Lower limb progressive resistance training improves leg strength but not gait speed or balance in Parkinson's disease: A systematic review and meta-analysis
Tillman, Alex Tillman, Muthalib, Makii, Hendy, Ashlee M., Johnson, Liam G., Rantalainen, Timo, Kidgell, Dawson J., Enticott, Peter G. and Teo, Wei-Peng. (2015). Lower limb progressive resistance training improves leg strength but not gait speed or balance in Parkinson's disease: A systematic review and meta-analysis. Frontiers in Aging Neuroscience. 7, pp. 1 - 10. https://doi.org/10.3389/fnagi.2015.00040
Interactive effects of GPI stimulation and levodopa on postural control in Parkinson's disease
Johnson, Liam, Rodrigues, Julian, Teo, Wei-Peng, Walters, Susan, Stell, Rick, Thickbroom, Gary and Mastaglia, Frank. (2015). Interactive effects of GPI stimulation and levodopa on postural control in Parkinson's disease. Gait & Posture. 41(4), pp. 929 - 934. https://doi.org/10.1016/j.gaitpost.2015.03.346
Progesterone and estradiol levels predict planned agility, 10M and 20M sprint performance in young male Australian football athletes
Martin, Alanna C., Heazlewood, Ian T., Lys, Isabelle, Kitic, Cecilia M. and Johnson, Liam. (2015). Progesterone and estradiol levels predict planned agility, 10M and 20M sprint performance in young male Australian football athletes. Journal of Australian Strength and Conditioning. 23(6), pp. 43 - 46.
Exergaming as a viable therapeutic tool to improve static and dynamic balance among older adults and people with idiopathic Parkinson's disease: A systematic review and meta-analysis
Harris, Dale M., Rantalainen, Timo, Muthalib, Makii, Johnson, Liam G. and Teo, Wei-Peng. (2015). Exergaming as a viable therapeutic tool to improve static and dynamic balance among older adults and people with idiopathic Parkinson's disease: A systematic review and meta-analysis. Frontiers in Aging Neuroscience. 7, pp. 1 - 12. https://doi.org/10.3389/fnagi.2015.00167
The effects of a supervised Pilates training program on balance in Parkinson's disease
Johnson, Liam, Putrino, David, James, Ian, Rodrigues, Julian, Stell, Rick, Thickbroom, Gary and Mastaglia, Frank. (2013). The effects of a supervised Pilates training program on balance in Parkinson's disease. Advances in Parkinson's Disease. 2(2), pp. 58 - 61. https://doi.org/10.4236/apd.2013.22011
Clinical and posturographic correlates of falling in Parkinson's disease
Johnson, Liam, James, Ian, Rodrigues, Julian, Stell, Rick, Thickbroom, Gary and Mastaglia, Frank. (2013). Clinical and posturographic correlates of falling in Parkinson's disease. Movement Disorders. 28(9), pp. 1250 - 1256. https://doi.org/10.1002/mds.25449
Allied health professionals and cardiometabolic disease risk screening in the workplace: a study of two companies in Darwin, Australia
Semple, Stuart J. and Johnson, Liam. (2012). Allied health professionals and cardiometabolic disease risk screening in the workplace: a study of two companies in Darwin, Australia. 18(1), pp. 65 - 74.
A controlled trial of mindfulness training in schools : The importance of practice for an impact on well-being
Huppert, Felicia and Johnson, D. (2010). A controlled trial of mindfulness training in schools : The importance of practice for an impact on well-being. The Journal of Positive Psychology. 5(4), pp. 264 - 274. https://doi.org/10.1080/17439761003794148