Based on feedback from our community team and the critical importance of providing patient-centred care, the PCH Diabetes Clinical team successfully rolled out collection of “Person Reported Outcomes”, or PROs in 2023. PROs are based on the person’s experience living with, coping with and managing a health condition and provide unique information on the impact of a medical condition and its treatment from the patient and parent perspectives.
Two PRO surveys were rolled out in 2023:
- The PAID survey, which measures something we call ‘Diabetes Distress’. PAID addresses the common experience that diabetes can be tough to live with and may come with feelings of frustration or worry, might impact daily life such as school or relationships and may lead to burnout. There is a version of PAID for youth over 8 years of age and for their parents.
- The T1DAL survey which measures diabetes-specific ‘Health Related Quality of Life (HRQOL)’ assesses an individual’s well-being with respect to their physical health, including general health status (e.g., physical strength, fatigue), impact of their health condition on physical and emotional functioning, and satisfaction with their treatment plan. We know from the scientific literature that for people with type 1 diabetes (T1D), better diabetes-specific HRQOL is associated with more glucose levels in target range. There is a version for youth over 8 years, their parents, and parents of children under 8 years.
We have had great feedback from patients and families regarding collection of these measures which are primarily being collected on an iPad in the clinic waiting room, taking only a few minutes of your time. They create opportunities to talk to your diabetes team members and direct your care to what is most important to you.
The PCH Diabetes Clinical team will again be collecting T1DAL surveys between June and July 2024, followed by PAID between November 2024 and January 2025. The team is exploring ways these could be completed at home prior to clinic, to allow the team to prepare for and make the most of your clinic visits. Until then, collection in clinic will continue, and the PROs will be available to all families with type 1 diabetes in our PCH-based clinics as well as the outer metro and regional WA clinics. Completion of the PRO surveys remain optional, but we believe the patient and parent experience is paramount and should be the focus of patient-centred care.
We hope this will help us make your clinic visit more relevant and useful to you.