Co-Design of a Registry-Based Tailored Follow-up Service Intervention for People Living With Stroke: A Multiple...

Often people experience ongoing health challenges after stroke. The Australian Stroke Clinical Registry collects patient-reported outcomes after stroke. Many patients report challenges that are potentially addressable through additional support.

To co-design a registry-based, hospital-initiated, follow-up service for people who report major health-related challenges between 90 and 180 days after their stroke.

Iterative, consensus-based methods were used to co-design a follow-up service intervention including eligibility criteria, clinical protocol (consultation/communication forms and pathways) and implementation requirements (e.g., training manual) (May 2022-March 2023). Stakeholders, including Australian-based clinicians providing stroke care, researchers and people with lived experience of stroke, were involved in each stage.

Stage 1 (development), (i) scoping survey; (ii) two consensus meetings; (iii) interviews with key informants (n = 3); (iv) online modified Delphi survey; Stage 2 (testing and finalisation), (v) piloting of the follow-up service intervention at one hospital, with service coordinator/study team interview and participant satisfaction surveys and; (vi) final review (modified Delphi survey). Consensus was defined in the modified Delphi surveys as ≥ 80% 'agreement' or verbal consensus via open voting during meetings. Additional recommendations from each step were iteratively incorporated to refine the intervention.

Scoping survey results (n = 41/108 respondents, 38% response rate) highlighted the need for broad inclusion criteria and the involvement of carers/support person and general practitioners. During the consensus meetings (16/18, 89% stakeholders attended at least one), verbal consensus was achieved for the eligibility criteria, and additional recommendations were made for the referral report and components within the clinical protocol and training manual. After the final Stage 1 modified Delphi survey (n = 10, two cohorts), 70%-100% consensus was achieved for the referral report, clinical protocol components and training manual, which were then piloted with six eligible participants. Feedback from the pilot testing (n = 3 coordinator/staff interviews; n = 5 satisfaction surveys) led to further clinical protocol modifications. Agreement was reached for all additional recommendations during the final modified Delphi survey round (16/29 respondents, 55%).

We describe an iterative, consensus-based co-design process which resulted in a novel, registry-based follow-up service intervention for people living with stroke reporting major health challenges. A feasibility randomised controlled trial is the next stage.

People with lived experience of stroke, including their family/caregivers, actively participated throughout the co-design process to develop and test the follow-up service intervention. There was lived experience representation with scoping survey responses, as well as within the working group and independent review group who were involved with the consensus meetings and modified Delphi process. Survey feedback from people with stroke who piloted the developed service intervention was also integral to informing the final service intervention.