Based on feedback from our community team and the critical importance of providing patient-centred care, the PCH Diabetes Clinical team will be rolling out some new measures for people with type 1 diabetes in our clinics in 2023 to help us understand your experiences living with diabetes. These will help provide a framework to support discussing these experiences with your clinical team, and to assist us in improving the care we provide to all families. The measures that we will be collecting are called “Patient Reported Outcomes”, or PROs. They generally take the form of a survey.
What exactly is a PRO? A PRO is based on a patient's (or parent’s) experience living with, coping with and managing a health condition and provides unique information on the impact of a medical condition and its treatment from the patient's perspective.
We are all familiar with measuring things like glucose levels (e.g. HbA1c, time in range from your CGM), blood pressure, cholesterol and growth in children and adolescents with diabetes. However, we also recognize that it is increasingly important and valuable to families (and therefore to clinicians) to understand the lived experience of people with diabetes in a more holistic and patient-centred sense. In fact, many clinical trials in type 1 diabetes (e.g. trials of new artificial pancreas systems) are now including PROs to help understand the impact of a new technology on a person’s quality of life alongside the benefits to glucose control. Other examples of PROs include treatment satisfaction and general wellbeing.
The PCH Diabetes Clinic will be rolling out two PRO surveys in 2023 to begin with:
One is called PAID, and this measures something we call ‘Diabetes Distress’ which 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 and for parents.
The other survey we will be rolling out is called T1DAL and this measures diabetes-specific ‘Health Related Quality of Life (HRQOL)’ which is 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.
Over time we may include more PROs for specific components of the patient journey; for example the newly diagnosed period.
These PRO surveys are optional, but we believe the patient and parent experience is paramount and should be the focus of patient-centred care. They will be offered on an iPad in clinic, take only a few minutes of your time, and 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. There are some age criteria for these surveys because they are generally validated for certain ages, but most of our patients will be eligible.
We hope this will help us make your clinic visit more relevant and useful to you.