Patient-Reported Outcomes
Patient-Reported Outcomes (PROs) are health-related data provided directly by patients through questionnaires that capture how diseases and treatments impact their daily lives based on their personal experiences. Integrating PROs into research and care can create more patient-centred solutions that complement clinical features and enhance treatment effectiveness and quality of life.
- Why Patient-Reported Outcomes MatterMedical assessments typically focus on clinical data to evaluate the success of disease management and treatment. While these measures are essential for understanding the biological and physiological aspects of health, they often fall short of capturing the full scope of a patient’s experience, particularly in terms of symptom severity, mental health and overall well-being. This is where Patient-Reported Outcomes (PROs) add value by offering direct insight into the patient’s perspective.
- Patient-Reported Outcomes in 3TR
A key challenge in utilising PROs is the lack of standardised tools for measuring patient outcomes, making it difficult to compare research results. 3TR has made strides in helping to address this issue for example in the field of severe asthma by developing core outcome measure sets for children and adults with severe asthma (COMSA). By incorporating Patient-Reported Outcome Measures (PROMs), such as quality-of-life questionnaires in the COMSA set, 3TR takes the patient’s perspective into account and ensures consistency across clinical trials, enabling more accurate comparisons and better treatment decisions that enhance patient outcomes.
Due to the challenges in comparing PROs across diseases with distinct symptoms, treatment responses, and patient experiences, they are typically addressed individually. 3TR’s integrative approach across autoimmune, inflammatory, and allergic diseases plays a crucial role in uncovering shared patterns, offering the potential to improve PRO measurement and patient outcomes across a wide range of conditions.
Voices on Patient-Reported Outcomes
3TR invited patient representatives and researchers from the consortium to share their perspectives on the importance of PROs. During the 5th Annual Project Meeting at AstraZeneca in Gothenburg, Sweden, they discussed their personal, clinical, and research experiences as well as the significance of PROs across diseases, potential challenges and opportunities.
“PROs are really important in helping us to develop better asthma therapies. I’m a doctor. I don’t have asthma. I’ve talked to thousands of patients over the years who have asthma. But actually, patients tell me very different things so it’s very difficult for me to know and really understand what it’s like to have asthma. So, we need that patient perspective.”
Graham Roberts
Professor for Paediatric Allergy and Respiratory Medicine
University of Southampton
“When we look at the 3TR project – in the COMSA study, for example, which focused on severe asthma – patients, together with the researchers, defined the outcomes: quality of life and treatment responses. I think when you do that in the context of a study, you have much more impact on the results, and you can analyse the results far better."
Theo Schilpzand
Patient Representative
European Lung Foundation
“Patient reported outcomes can be a way to obtain different opinions and thoughts of patients about treatments, medication and consultations. And if you ask the same questions to many patients, you can evaluate and measure the results, and then improve the situation or make improvements for future patients.”
Blanca Rubio
Patient Representative
Lupus Europe