A majority of patients said they found it difficult to explain the “invisible” aspects to others.
More than 8 in 10 patients with a diagnosis of rheumatoid arthritis said they found it difficult to explain the “invisible” aspects of the condition to others, according to Health Union’s latest “Rheumatoid Arthritis In America” survey.
“Pain and fatigue are not always obvious,” said RheumatoidArthritis.net patient advocate Kat Elton, who also took part in the survey. “That's one of the biggest challenges people have around explaining their disease. So many people will hear you and say 'You look good' but not understand how you actually feel.”
RheumatoidArthritis.net is Health Union’s online community dedicated to persons who live with rheumatoid arthritis.
The survey tallied rheumatoid arthritis symptoms that respondents experienced during the past month. Fatigue, the most common symptom, was reported by 89% of respondents. Painful joints was reported by 88%; stiff joints by 84%; and general stiffness, soreness, or aching throughout the body by 79%.
Respondents also reported many symptoms that go beyond painful joints and stiffness, saying they had experienced reduced grip strength (70%), difficulty sleeping (67%), cognitive impairment (54%), and anxiety or depression (53%).
Survey participants said that rheumatoid arthritis affected their lives in a variety of ways, including the ability to exercise or participate in physical activity (70%) and fulfill family or household duties (64%). Other areas negatively affected by rheumatoid arthritis were social life and activities (59%) and their ability to work (55%).
Recent discussions with healthcare providers focused on quality of life with current medications (62%), managing flares (59%), and disease progression (57%), survey participants said.
Seven in 10 respondents indicated they were treating their rheumatoid arthritis with a disease-modifying antirheumatic drug, and 54% of patients surveyed reported discussing an additional medication with their healthcare provider within the past 6 months.
“Being part of this survey helps you see where you're struggling and gets you to ask questions like ‘Am I really satisfied with my treatment plan?’” added Elton, who had a diagnosis of juvenile rheumatoid arthritis at age 2 years.
“Changing healthcare providers was a common theme among respondents,” explained Health Union President and Co-Founder Tim Armand. “Our data shows that more than half of respondents had seen more than one rheumatologist over the course of their journey with RA. In some cases, patients didn’t find their doctor to be helpful (31%) or felt their questions or concerns were not being addressed (30%).”
The online survey of 3607 qualified individuals was conducted June 1-28, 2017 and was released through RheumatoidArthritis.net.