Australian Stroke Clinical Registry - LIfe after Stroke Tailored Support (A-LISTS) study

Pre-hospital component (all participants before randomisation): Baseline assessments are completed by trained data collectors for the Australian Stroke Clinical Registry (AuSCR) by phone. For the baseline assessment, consented participants are asked questions about their current health conditions and residence, quality of life (EuroQoL-5-3L dimension, EQ-5D), disability (modified Rankin Scale, mRS) and complete the longer-term unmet needs (LUNS) questionnaire. This interview will take approximately 30 minutes to complete. All participants are informed that a stroke service coordinator from the hospital that they were discharged from that participates in AuSCR may contact them via phone. Randomisation: For those allocated to the intervention group, an electronic report about the participants health and unmet needs status is generated (A-LISTS patient report), and then securely forwarded electronically to the participating hospital's nominated service coordinator. The report includes a summary of the baseline measurements ascertained by the AuSCR team member for the participant. Hospital component (post randomisation): The nominated stroke service coordinator will receive an ~4 hour training program via videoconference with relevant project team members and with online modules with self-assessments prior to commencement of the trial. The stroke service coordinator will contact the participant via telephone to ask them questions about their health status and unmet needs, clarifying with them about current management and also their past medical history related to their baseline responses. They will seek to understand the potential contributing factors for the responses. The stroke service coordinator will determine which healthcare providers are currently managing their care and if they need further support from the hospital or a broader range of healthcare providers. They will determine if the participant's General Practitioner (GP) should be contacted/involved and ask permission to forward the A-LISTS patient report. The stroke service coordinator will then outline what additional support or case management might be offered and seeks approval to set up consultations, as required. This consultation may take up to 60-90 minutes. The outcomes of this assessment are documented in the participant's medical file and the relevant data entered into the electronic case report form (eCRF). One of three options then occurs. Option 1 is if no further action is required by the hospital, the service coordinator will send the A-LISTS patient report to the nominated GP, if the participant consents to this, with a cover letter outlining the initial review and its outcomes and any further steps discussed with the patient. Option 2 is if further action is required by the hospital, the service coordinator can then arrange telehealth or in person consultations with relevant members of the interdisciplinary team and/ GP or other health care providers in the community as advised by the patient. Additionally, referrals and any additional appointments with the stroke team can be scheduled, as required. Option 3 is if the participant is uncontactable or refuses to engage with the hospital. A cover letter and a copy of the A-LISTS patient report will be sent to the GP with the patient's permission. If uncontactable, or permission is not granted then details will be documented in the medical record. All relevant data will be entered into the eCRF. The criteria for determining whether the participant falls into option 1 or 2 is dependent on the stroke service coordinators judgement. If the coordinator identifies suitable follow-up services and the participant agrees, then a referral will be made. If the participant reports that they feel they do not need a follow-up service then no referral will be made. During the 12 week intervention period, participants are asked to complete a paper diary by writing down any time they have contact with a healthcare or community services provider, including medical specialist visits or attend an allied health therapy session (such as a physiotherapist, etc). The stroke service coordinator has a maximum of 4 hours per week for 12 weeks to make follow-up calls. Subsequent calls to participants may be via telephone, face-to-face or video-conference depending on the participants preference. End week 12: A follow-up survey repeating the baseline assessments is conducted over the phone around week 12-14 post randomisation whereby a blinded research assistant from the AuSCR office collects the follow-up data. This will take approximately 30 minutes to complete. Participants will be asked questions about their current residence, quality of life (EQ-5D), disability (mRS), longer-term unmet needs (LUNS), the number of unplanned hospital visits since discharge and the number of current health or community services used, new medication use and any costs incurred since randomisation.