Fears and Beliefs in Rheumatoid Arthritis and Spondyloarthritis: A Qualitative Study

Abstract

ObjectivesTo explore beliefs and apprehensions about disease and its treatment in patients with rheumatoid arthritis and spondyloarthritis.Methods25 patients with rheumatoid arthritis and 25 with spondyloarthritis participated in semi-structured interviews about their disease and its treatment. The interviews were performed by trained interviewers in participants' homes. The interviews were recorded and the main themes identified by content analysis.ResultsPatients differentiated between the underlying cause of the disease, which was most frequently identified as a hereditary or individual predisposition. In patients with rheumatoid arthritis, the most frequently cited triggering factor for disease onset was a psychological factor or life-event, whereas patients with spondyloarthritis tended to focus more on an intrinsic vulnerability to disease. Stress and overexertion were considered important triggering factors for exacerbations, and relaxation techniques were frequently cited strategies to manage exacerbations. The unpredictability of the disease course was a common source of anxiety. Beliefs about the disease and apprehensions about the future tended to evolve over the course of the disease, as did treatment expectations.ConclusionsPatients with rheumatoid arthritis and spondyloarthritis hold a core set of beliefs and apprehensions that reflect their level of information about their disease and are not necessarily appropriate. The physician can initiate discussion of these beliefs in order to dispel misconceptions, align treatment expectations, provide reassurance to the patient and readjust disease management. Such a dialogue would help improve standards of care in these chronic and incapacitating diseases.

Development and application of a questionnaire to assess patient beliefs in rheumatoid arthritis and axial spondyloarthritis

“…Use of a threshold lower than 7 would clearly generate higher percentages of “believers”. Finally, it is important to note that the items of the QuAD were derived from a qualitative survey of French patients [ 11 ]. It is possible that patients in other countries or cultures would have different concerns [ 27 , 28 ], which would be interesting to evaluate in future studies.…”

“…A previous qualitative study of disease perception in patients with RA or axSpA was performed in 50 patients (25 with RA and 25 with axSpA) [ 11 ]. Based on data from this study [ 11 ], all items reported by > 5% of patients were rephrased as assertions, with help from a partnering patient organization. This questionnaire covered the most widely held perceptions about disease and treatment.…”

Fears and beliefs of people living with rheumatoid arthritis: a systematic literature review

“…Further studies allowing comparison of fear and beliefs of patients in different stages of RA is necessary since it has been shown that beliefs about the consequences of disease and expectations of patients varied according to the stage of RA and familiarity with other people with the same clinical condition [13,18].…”

“…Fear of disease progression and disability was the second most described category (N = 9/32 articles reporting fears, 28.1%) ( Table 2); Fears related to pregnancy and parenting roles were reported in three articles (9.4% of the 32 articles reporting fears) ( Table 2). Patients who participated in these articles were recruited in Europe and reported the fear of drugs causing birth defects, fear of genetic transfer, fear of being unable to fulfill parenting roles, fear of not being able to prevent accidents and fear of dropping a small baby or toddler [17][18][19].…”

“…Although most patients with RA believed their synthetic and biological DMARDS were necessary to preserve joint structures, reduce pain and increase quality of life, levels of concern about side effects were high and related to non-adherence [3,5,15,16,[41][42][43][44]. Beliefs about cause of disease expressed by RA patients in 9 studies (12.1% of articles reporting beliefs) included: hereditarity, stress, unexpressed grief, diet, occupational factors/overwork, lack of exercise, God's will, weather conditions, biological reasons/immune system failure/autoimmunity, accident/chance and karmic explanation (disease caused by past "bad" actions) [18,36,43,[45][46][47][48][49][50].…”