PATIENT REPORTED MEASURES
The Australian & New Zealand Thyroid Cancer Registry (ANZTCR) is piloting the collection of patient reported measures (PRMs) as we are interested in knowing about the health and well-being of people diagnosed with thyroid cancer. The ANZTCR would like to understand what factors are important to their quality of life so they can help improve the care they receive from their surgeons and hospitals.
The responses they receive from people diagnosed with thyroid cancer will contribute to benchmark reports provided to surgeons and hospitals, to help them improve the quality of care they provide to people with thyroid cancer in a way that is meaningful to patients. Please note, no individual patients will be identified in these reports.
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Process of Collecting PRMs
Participants may be contacted by the ANZTCR Coordinating Centre and invited to participate in patient-reported outcome and experience questionnaires (patient-reported measures – PRMs). If the participant consents to participate, an invitation to complete a PRM questionnaire will be sent at predetermined intervals. If the participant does not consent to participate, they will remain in the registry and will not be contacted again about PRMs.
Some surgeons may wish to provide the patient with the ‘PRM Postcard’ at their pre- or postoperative consultation, once a thyroid cancer diagnosis has been confirmed. The provision of the postcard is at the surgeon’s discretion. The ‘PRM Postcard’ contains a QR code that directs the patient to the ANZTCR patient-reported questionnaire. Informed consent is implied if the patient completes the questionnaire. The postcard is provided at their pre- or postoperative consultation (as close to surgery as practicable) in order to obtain a baseline measure of the patients’ quality of life. Due to the nature of thyroid cancer, with the majority being diagnosed postoperatively this can be a very stressful time for patients and assessing their quality of life at this time point is of extreme importance. The first page of the questionnaire will include demographic details in order to link the patient to their registry record.
A questionnaire will be offered to patients at baseline by their treating surgeon via the ‘PRM postcard’, either pre- or postoperatively, once a thyroid cancer diagnosis has been confirmed.
If an eligible registry participant has not completed the baseline PRM using the QR code provided on the ‘PRM postcard’, they will be contacted by the ANZTCR Coordinating Centre at the next administration time point (i.e., 3-months following diagnosis) to confirm their contact details (email address and/or mobile number) at which time the participant can opt-out of patient-reported data collection. If a registry participant is willing to participate in registry patient-reported data collection, they will be sent a link to the electronic questionnaire.
An invitation to complete the questionnaire will be sent at pre-determined intervals following diagnosis, 3-, 6-, 12-months and then annually for 5-years, or until the participant opts-out or passes away.
PRMs Questionnaire Content
Patient-reported data that measures patient outcomes, including quality of life, and patient experiences will be collected by providing the validated European Organisation for Research and Treatment of Cancer (EORTC) general quality of life questionnaire (QLQ-C30) and the thyroid cancer-specific module (THY34) to eligible registry participants.
In addition to measuring patient outcomes and experiences, participants may be asked if they wish to provide feedback on the process of collecting patient-reported data and the content of the questionnaires. The reason for this will be to periodically gather feedback from participants about registry processes and content to ensure participant acceptability and feasibility. The instructions for this patient evaluation will clearly indicate that it is optional and will state how many additional questions are included and the expected length of time required to complete it.
PRMS Reporting & Feedback
Upon completion of the questionnaire participants will receive links to patient advocacy and support websites, such as the Australian Thyroid Foundation, Cancer Australia and Cancer Council Australia. A ‘Thank you Postcard’ will be sent to all registry participants who are completing patient-reported data collection annually. This postcard will also contain the contact details for the Australia Thyroid Foundation, a consumer advocacy group.
Clinician & Hospital Reports
Patient-reported data collected from participants may be shared as aggregate data with ANZTCR participating clinicians and sites involved in their care. At this stage, no individual level, or identifiable data will be shared with patients or any ANZTCR participating clinicians and sites. Participants will be notified of this at the time of completing the questionnaire and can request that this does not occur. Following the pilot, the ANZTCR will explore options for reporting these results to clinicians both in real-time and via site benchmarked reports.
Pilot Study of PRMs Data Collection
In 2021, the ANZTCR will pilot the collection of patient-reported measures (PRMs) by distributing the PRMs questionnaire electronically to a sample of randomly selected registry participants at 3-, 6- and 12-months post-diagnosis.
As part of the pilot, the ANZTCR will not be providing any feedback or reports to clinicians on their patients PRMs.