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Patient-Reported Outcomes Reveal Hidden Challenges in Antiphospholipid Syndrome

January 5, 2023

People with antiphospholipid syndrome (APS), an autoimmune disease causing abnormal blood clots, often experience challenges beyond what lab reports reveal. A research article called Predictors and Interrelationship of Patient-Reported Outcomes in Antiphospholipid Syndrome: A Cross-Sectional Study, presented in part at the American College of Rheumatology Convergence 2020, explores a new way to understand their experience: patient-reported outcomes (PROs).

What is living with APS like?

Previously, doctors relied on lab tests and their observations to learn about APS. This study adds another crucial piece: how patients themselves feel. 139 people with APS shared their experiences through surveys, revealing important insights:

  • Nearly half (47%) reported mild limitations in daily activities, pain intensity, and thinking abilities.
  • People experiencing difficulties in one area were likelier to face issues in another.
  • Age, smoking, pain medication use, and some antidepressants were linked to reported limitations in physical daily activities and thinking abilities.

How can patient experiences influence care?

This research offers a unique perspective – the patient’s own story. By understanding their experiences, healthcare providers can:

  • Better address individual needs and tailor care to each patient’s specific challenges.
  • Gain deeper insights by tracking disease progression and tailoring treatment plans accordingly.
  • Choose more effective therapies that consider the impact of treatment on patients’ daily lives.

How else can research improve understanding of APS?

Future research will explore how combining patient reports with objective data can create a more complete picture. Such research can involve comparing patients’ reports of cognitive difficulties with formal cognitive testing, for example.

What’s next?

This study is a step towards a more comprehensive understanding of APS. By including the patient’s perspective alongside traditional medical data, healthcare professionals can provide better, more personalized care for individuals with this condition.

Citation for report:

Weiner, J. K., Smith, T., Hoy, C. K., Sarosh, C., Madison, J. A., Ambati, A., Tambralli, A., Peters, N., Packel, C., Gockman, K., Zuo, Y., Briceño, E. M., Nagaraja, V., & Knight, J. S. (2023). Predictors and Interrelationship of Patient-Reported Outcomes in Antiphospholipid Syndrome: A Cross-Sectional Study. ACR open rheumatology, 5(1), 28–37. https://doi.org/10.1002/acr2.11512