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.

Abstract

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. Aim(s): 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. Method(s): 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). Result(s): 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(s): 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.