Platform Presentation The Joint Annual Meeting of the Stroke Society of Australasia (SSA) and Smartstrokes 2023

Co-design of a tailored follow-up intervention package for people living with stroke who report extreme unmet needs: a two stage, three-round modified Delphi study (#29)

Andrew G Ross 1 , Jannette Blennerhassett 2 , Karen Moss 1 , Tara Purvis 3 , Tanya Frost 4 , Dana Wong 5 , Susan Hillier 6 , Joosup Kim 1 3 , Jennifer Cranefield 7 , Katherine Jacques 8 , Mark Nelson 9 , Grant Russell 10 , Karen Grindon-Ekins 11 , Colin Scott 12 , Lisa Murphy 13 , Kathleen Bagot 1 3 , Monique Kilkenny 1 3 , Timothy Kleinig 7 , Rohan Grimley 3 14 , Sandy Middleton 15 , Vincent Thijs 1 16 17 , Dominique Cadilhac 1 3
  1. The Florey Institute of Neuroscience and Mental Health, Heidelberg, VIC, Australia
  2. Physiotherapy Department and Health Independence Program, Austin Health, Heidelberg, VIC, Australia
  3. Stroke and Ageing Research, Department of Medicine, School of Clinical Sciences at Monash Health, Monash University, Melbourne , VIC, Australia
  4. Department of Neuroscience, Eastern Health, Melbourne, Victoria, Australia
  5. School of Psychology and Public Health, La Trobe University, Bundoora, Melbourne, Victoria, Australia
  6. Sansom Institute for Health Research, University of South Australia (City East), Adelaide, SA, Australia
  7. Department of Neurology, Royal Adelaide Hospital, Adelaide, SA, Australia
  8. Wesley Mission Queensland, Brisbane, QLD, Australia
  9. Menzies Institute for Medical Research, University of Tasmania, Hobart, TAS, Australia
  10. Department of General Practice, Faculty of Medicine, Nursing and Health Sciences, School of Public Health and Preventative Medicine, Monash University, Melbourne, VIC, Australia
  11. Department of Neurology, Box Hill Hospital, Eastern Health, Melbourne, VIC, Australia
  12. Stroke Association of Victoria , Melbourne, VIC, Australia
  13. Stroke Foundation, Melbourne, VIC, Australia
  14. School of Medicine and Dentistry, Griffith University, Birtinya, QLD, Australia
  15. Nursing Research Institute, St Vincent’s Health Network Sydney and Australian Catholic University, Sydney, NSW, Australia
  16. Department of Neurology, Austin Health, Melbourne, VIC, Australia
  17. Melbourne Medical School, University of Melbourne, Melbourne, Victoria, Australia

Background: After stroke, people with ongoing health problems may be readmitted to hospital and have decreased quality-of-life. The Australian Stroke Clinical Registry collects patient-reported outcomes between 90-180 days after stroke. This provides an opportunity to identify people reporting health-related problems that could be addressed with additional support.

 

Aims: To co-design a registry-based, hospital-initiated follow-up intervention for people with stroke reporting health-related problems between 90-180 days after stroke.

 

Methods: A two-stage, sequential mixed methods design using a modified Delphi approach to establish eligibility and the intervention components (clinical protocol and training manual). Stage 1 comprised: i) online scoping survey distributed to a broad stakeholder group (clinicians, researchers and consumers i.e., those with lived experience); ii) two workshops involving an interdisciplinary working group (n=17) (Delphi round 1); and iii) survey-based evaluation by an independent review group (n=6) (Delphi round 2). Stage 2: draft intervention package piloted in one hospital (n=6 participants). Pilot feedback incorporated and final survey review by working group to approve final edits (Delphi round 3).

 

Results:  Stage 1: Eight consumers and 33 researchers/clinicians completed the online survey; 38% response rate. Overall, 13/17 (77%) working group members attended at least one workshop. In Delphi round 1, the survey generated 35 recommended intervention amendments (e.g., referral letter contents). The independent review group provided 11 additional recommendations with high content agreement (92%) (Delphi round 2). Stage 2:  Thirteen changes were made to the intervention package following the pilot testing phase (e.g. two new protocol pathways). The final survey (Delphi round 3) was completed by 16/17 (94%) working group members with high agreement (94%).

 

Conclusion: We have co-designed a novel, registry-based, follow-up service that can be tailored for people living with stroke in the community with ongoing health-related problems. The intervention is now ready for testing in a feasibility randomised controlled trial.