Q: What is patient follow-up?
A: Registrants entered into the Australian Stroke Clinical Registry (AuSCR) are followed up with a questionnaire after their hospital admission for stroke or transient ischaemic attack (TIA) to gather data on survival rates, health indicators and level of disability. Data variables collected in the follow-up questionnaire include:
- survivor status
- place of residence and living alone status
- subsequent stroke or other readmission to hospital since discharge
- modified Rankin Scale
- self-reported quality of life indicators
- age-appropriate questions for paediatric patients
Q: When is patient follow-up performed by AuSCR Office staff?
A: All patients whose hospital admission is recorded in the AuSCR within the follow-up timeframe will be contacted between 90 and 180 days after their registered hospital admission for stroke or TIA, unless they have requested to opt out, have refused follow-up, or we have been informed that they are deceased.
Follow-up involves the registrant receiving a postal questionnaire, ideally three months after their hospital admission. If this questionnaire is not completed and returned to the AuSCR office, a second postal questionnaire is sent to the registrant, and to their emergency contact (if their address is not the same as the registrant’s) six weeks later. If the postal questionnaire is not returned within six weeks of the second attempt, AuSCR staff will attempt to contact the registrant by telephone to complete the questionnaire.
To maximise the chances of receiving follow-up information, it is important that patient details (including address and phone details for patients and emergency contacts) are entered into the AuSCR as soon as possible after discharge. Patients whose AuSCR records are created more than six months after admission cannot be followed up.
Q: How does the AuSCR track deaths after the follow-up period ends?
A: Annual data linkage with the National Death Index provides dates of death for registrants who pass away after the 90 to 180 day follow-up.
Q: Can we get access to follow-up data?
A: There are two ways that hospital staff can see their patients’ follow-up data. 1) All hospital users can generate de-identified live reports of follow-up data on the AuDaT system, using the menu options Reporting » Follow up. 2) Hospital Coordinators can view individual patient follow-up records, or export a range of follow-up records. For further details, see the Hospital User Manual.