Let’s change the narrative

Editor's note: This post was written in collaboration with Pfizer.

Sometimes stories get lost in the competing demands of day-to-day life. The stories of people living with psoriatic arthritis (PsA) often go unheard.

PsA is a serious and debilitating chronic illness that should be diagnosed and treated early. Approximately 500,000 people in the United States alone live with it every day. Living with a chronic illness like PsA, an autoimmune and inflammatory condition, can have a meaningful impact on many aspects of a person’s daily life.

What is it like to live with PsA? And how can people with PsA make themselves heard? As part of its ongoing commitment to people living with PsA, Pfizer developed a global initiative called the PsA Narrative to help us understand the challenges faced by those with PsA, help improve the lives of people living with this disease, and give people with PsA a voice. The PsA Narrative reveals the complexities of living with PsA and the potential challenges patients must overcome in obtaining a timely diagnosis and treatment.

This initiative is led by Pfizer with input from the Global PsA Narrative Advisory Committee, a panel of rheumatologists, dermatologists, and patient advocacy group leaders from eight countries, including NPF. Committee members were selected based on their experiences as health care providers and advocates who support people with PsA, as well as people living with PsA who could provide insight based on their personal experience.  

Initial results of the PsA Narrative patient survey demonstrate impact on patients and the need for improved communication

To better understand the challenges of psoriatic arthritis, the PsA Narrative surveyed adults living with psoriatic arthritis from around the world, including 301 individuals from the U.S. The initial U.S. findings are illuminating and suggest patients may not be telling their doctors the complete story on how they feel.

The initial U.S. results demonstrate the following:

  • Patients are suffering from a high degree of disease impact on physical, emotional, social, and career aspects:
    • About half of all PsA patients describe their overall health as fair or poor, and nearly all patients (more than nine in 10) say that their disease has impacted their level of physical activity and their emotional well-being.
    • Three out of four PsA patients surveyed say their disease has negatively impacted relationships with friends and family and with their romantic partners. A similar percentage of surveyed adults stated that PsA has hindered them in their careers, decreasing their productivity and forcing them to take medical leave or go on disability. Because of their PsA, approximately 13 percent of all surveyed patients had to quit – or were let go. 
  • Patients are not communicating how they truly feel and the impact of PsA on their life:
    • The vast majority of PsA patients reported being satisfied with their communication with their rheumatologists.
    • However, 41 percent worry that if they ask too many questions, they’ll be seen as a “difficult patient” impacting their quality of care.
    • Almost half (46 percent) of patients surveyed tell their rheumatologist they’re fine, even though they’re still experiencing symptoms.
  • Patients are still experiencing symptoms despite treatment:  
    • Although 89 percent of the PsA patients taking prescription medications express satisfaction with their treatment regimen and 87 percent say that their current treatment has their PsA under control, 96 percent of this group have experienced symptoms in the last 12 months, despite treatment, and 89 percent described their symptoms of PsA today as moderate to severe.

Get the full story

The U.S. findings from the PsA Narrative patient survey results are available at Pfizer.com/psanarrative. Check back and follow the progress of this initiative as companion findings from the survey of rheumatologists and dermatologists are released.

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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