Exciting update on the collection of Person Reported Outcomes (PROs)!
The PCH Diabetes Clinical team successfully rolled out collection of PROs in 2023, followed by establishment of an annual collection cycle in 2024. 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. The two PROs the PCH Diabetes Clinical team are currently collecting include:
- 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 caregivers.
- 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 caregivers, and caregivers of children under 8 years.
To date, these measures have primarily been collected on an iPad in the clinic waiting room. Behind the scenes the team has been working hard to ensure greater reach and collection of these measures and have created a secure way to collect these prior to your clinic visit. The team will now be sending a text message, to the listed primary caregiver, with a secure link to your child’s specific survey, so you are able to complete these questions from the comfort of your own home, at a time that suits you best. You will know it is from the clinic team as your child’s name will appear in the first line of the text, and the mobile number is registered as ‘PCH T1D Team’. The SMS survey uses the same secure database, REDCap, as the iPad system did. REDCap is a secure database used within PCH services and meets all guidelines to ensure patient information is stored securely and remains private.
Completion of the PRO surveys remain optional, but we believe the patient and caregiver experience is paramount and should be the focus of patient-centred care. Completion of the PROs prior to clinic for review by your clinic team before your appointment, allows us to direct your child’s appointment specifically to your and their needs maximising your time in clinic.
Thank you and we look forward to moving to this exciting new system for PRO collection within clinic.
We would love to hear your thoughts about the best time of day for you to receive this message from your diabetes team. If you would like to share your thoughts, please click on the following link: