Patients with chronic rheumatoid arthritis (RA) and axial spondyloarthritis (axSpA) express common fears and beliefs, according to the results of a novel questionnaire presented at the recent meeting of the European League Against Rheumatism.1,2 Understanding the patient’s perception of his/her disease can facilitate improved communication.
In general, little is known about patients’ fears and beliefs, and most questionnaires on this topic center on medications. Existing studies typically focus on specific fears or beliefs in a selected group of patients, and many were conducted before biologics were commonly used. The present study had 2 parts: first, developing a valid questionnaire to identify the most frequently reported patient fears and beliefs about RA and axSpA; and second, validating that questionnaire in 226 patients with RA and axSpA.
“This effort should improve disease-specific counseling and education programs,” said lead author Laure Gossec, MD, PhD, Hôpital Pitié-Salpêtrière, Universite Pierre et Marie Curie, Paris, France.
The investigators developed a questionnaire based on qualitative research on selected fears and beliefs quoted in more than 10% of interviews with 25 patients with RA and 25 with axSpA.
The initial questionnaire had 44 items: 19 related to beliefs and 25 related to fears. Each item was scored from 0 to 10 (10 being the most strongly held). The items were categorized around 5 different themes: origin of disease (9 items), flares (12 items), treatments (6 items), disease progression (9 items), and consequences of the disease (8 items).
A cross-sectional survey of 226 patients from 51 rheumatology practices in France was conducted to validate the questionnaire. Participants had a mean age of 55.5 years and 64.4% were female. About 70% had RA and 30% had axSpA. Median duration of disease was 11.9 years for patients with RA and 13.8 years for those with axSpA.
Of the 25 fear-related items on the questionnaire, the 6 most frequently reported were “afraid of suffering again” (66.7%), “afraid of losing my autonomy” (61.4%), “afraid of being a burden to my relatives” (59.6%), “afraid of losing all joint mobility” (58.9%), “afraid of my disease spreading to other joints” (58.6%), and “afraid of the consequences of my disease on my professional life” (58.6%).
Of the 19 items related to beliefs, the 5 most frequently reported beliefs were “flares are triggered by fatigue” (41.7%), “physical activity reduces flares” (38.7%), “flares are triggered by changes in the weather” (37.3%), “flares are triggered by physical effort” (37.1%), and “the disease is linked to a genetic cause” (36.9%).
Gossec said that fears were more frequent and more strongly held than beliefs. “Fears were shared by the majority of patients, whereas beliefs were more individual and varied, depending on the cultural and historical background of the patient,” she noted.
The most frequently reported fears were related to 2 different aspects: the clinical manifestations of the disease encountered on a daily basis, and the consequences of the disease and its uncertain evolution, she continued.
Of the 19 belief items, those most frequently mentioned were linked to factors explaining the occurrence of flares, whereas beliefs about the disease origins had lower scores.
“Some of these perceptions about the disease may not be accurate and can provide a basis for the discussion between physician and patient. By dividing the results according to domain, physicians can improve the dialogue and help patients understand their disease better, thus improving adherence,” she said.
The questionnaire is now being administered to a larger sample of patients with RA and axSpA. Thus far, the questionnaire has been validated only in the French language; it has yet to be studied in an English translation.
The study was funded by the Arthritis Fondation Courtin and UCB France.
- Gossec L, Saraux A, Hudry C, et al. Development and validation of a questionnaire assessing the fears and beliefs of patients suffering from rheumatoid arthritis and axial spondyloarthritis. Presented at: 16th Annual European Congress of Rheumatology; June 10-13, 2015; Rome, Italy. Abstract THU0353.
- Gossec L, Chauvin P, Hudry C, et al. The most frequent fears and beliefs of 226 patients with rheumatoid arthritis or spondyloarthritis, using a novel questionnaire. Presented at: 16th Annual European Congress of Rheumatology; June 10-13, 2015; Rome, Italy. Abstract THU0575.