Research in Action: Measuring Patient-Reported Outcomes in FSGS
What are patient-reported outcome measures and why do they matter?
Patient-reported outcome measures (PROMs) are tools to help healthcare providers quantify outcomes that are important to the patient.
For example, your healthcare provider likely monitors your Focal Segmental Glomerulosclerosis (FSGS) by measuring biomarkers in your urine and blood. Certainly, these measures provide important information to your provider about disease activity. But they do not reflect the impact of FSGS on your general physical, mental, and social health (1). For example, missing work because of fatigue is far more meaningful to you than a lab value in your healthcare chart.
Patient-reported outcome measures provide a missing link. They help healthcare providers understand the impact of living with a disease on terms that matter to you.
Patient-reported outcome measures can be used to improve clinical care for patients, they may guide development of new treatments, and they can help clinical practices measure and improve the quality of care they provide (2).
PROMs and FSGS
When it comes to the personal experience of managing a health condition, patients or their caregivers are the experts. That’s why researchers perform Patient-Reported Outcome research based on lengthy interviews with a variety of patients. Researchers then analyze themes from these interviews to create disease-specific PRO measures for use in clinical care.
To date, there has been research to develop a Patient Reported Outcomes tool for FSGS.
In one such research study,
55% of interview time was spent on physical symptoms,
20% of interview time was spent on mental health,
20-25% of interview time was spent on social health.
You might also be surprised to learn that, while some PROs focus on the negatives of living with FSGS (ex: swelling or pain),; there were positive themes that came from interviews as well. One theme focused on the impact of a strong support community and another focused on appreciation for the times of good health.
FSGS-specific PRO tools are still being researched and are not yet used as standards of care for people with FSGS. But even without a standardized tool, you should feel comfortable discussing how FSGS impacts you in daily life with your provider.
Your voice matters in clinical research.
The development of tools such as PROMs are going to help deliver better care for people like you living with FSGS. There are other ways to get involved with research.
References:
(1) Carlozzi NE, Massengill SF, Trachtman Het al. Health-related quality of life in focal segmental glomerular sclerosis and minimal change disease: A qualitative study of children and adults to inform patient-reported outcomes. Kidney Medicine, 2021. P 1 / col 2 / para 1.
(2) Weldring T, and Smith, S. Patient-Reported Outcomes (Pros) and Patient-Reported Outcome Measures (Proms). Health Services Insights. P 63 / col 1 / para 4.
(3) Carlozzi NE, Massengill SF, Trachtman Het al. Health-related quality of life in focal segmental glomerular sclerosis and minimal change disease: A qualitative study of children and adults to inform patient-reported outcomes. Kidney Medicine, 2021. P 498 / poster presentation.
