Psoriatic Arthritis’ Impact Not Always Visible or Understood, Patients Say
— Unseen Symptoms Frustrating to Explain to Others —
October 12, 2017
Explaining the “invisible” aspects of psoriatic arthritis often presents a challenge, according to “Psoriatic Arthritis In America,” a newly released Health Union survey of patients diagnosed with the condition.
Survey respondents said they often experience difficulty in making others understand that despite a lack of outwardly visible symptoms, they have a chronic condition that can cause fatigue and affects their entire body.
Psoriatic arthritis (PsA) is an inflammatory disease closely related to and most often co-occurring with psoriasis. The most commonly reported symptom among respondents was fatigue (94 percent), but other symptoms include pain, swelling and stiffness of the joints, and inflammation and pain of ligaments and tendons at attachment points.
Seventy-three percent of patients said they had experienced flares at least monthly, with flares lasting several weeks. Those experiencing frequent (i.e., daily or weekly) flares described the condition as “painful,” “frustrating,” and “debilitating.”
The survey found 68 percent reporting PsA had an impact on their overall quality of life, with 75 percent of respondents indicating it had negatively affected their ability to exercise or participate in physical activity, while 56 percent reported a negative effect on their ability to work.
Survey data also shows many respondents saw several healthcare providers (HCPs) before receiving an official PsA diagnosis, with one in four seeing two and nearly the same amount (24 percent) requiring three. Seven percent said they needed to visit 10 or more HCPs before receiving a diagnosis.
Of those respondents diagnosed with PsA, 64 percent were also diagnosed with psoriasis, with most (73 percent) receiving the psoriasis diagnosis first. Additionally, 52 percent of those with psoriasis reported living with the autoimmune skin condition for more than a decade before receiving a PsA diagnosis.
A desire for more information was a common theme among those surveyed, with 78 percent saying they wished they had known more at the time of their PsA diagnosis about all the symptoms psoriatic arthritis can cause, how psoriatic arthritis would affect their lifestyle (77 percent), or the impact psoriatic arthritis would have on mental, as well as physical health (75 percent).
“We see a recurring theme – a desire for people with PsA to have more information about the condition and its impact – in our ‘Psoriatic Arthritis In America’ surveys,” said Health Union CEO and Co-founder Olivier Chateau, “which is why it is important to have an online community like Psoriatic-Arthritis.com where people can share their experiences, learn from one another, and find information on the latest treatments.”
“Psoriatic Arthritis In America” surveyed 1,033 U.S. patients and was conducted May 22 through July 9, 2017.
See the newest data from patient-reported survey, Psoriatic Arthritis In America 2019 here.