Perceptions of first-degree relatives of patients with rheumatoid arthritis about lifestyle modifications and pharmacological interventions to reduce the risk of rheumatoid arthritis development: a qualitative interview study

Abstract

Background There is increasing interest in the identification of people at risk of rheumatoid arthritis (RA) to monitor the emergence of early symptoms (and thus allow early therapy), offer lifestyle advice to reduce the impact of environmental risk factors and potentially offer preventive pharmacological treatment for those at high risk. Close biological relatives of people with RA are at an increased risk of developing RA and are therefore potential candidates for research studies, screening initiatives and preventive interventions. To ensure the success of approaches of this kind, a greater understanding of the perceptions of this group relating to preventive measures is needed. Methods Twenty-four first-degree relatives of patients with an existing diagnosis of RA from the UK, three from Germany and seven from Austria (age: 21–67 years) took part in semi-structured interviews exploring their perceptions of RA risk, preventive medicine and lifestyle changes to reduce RA risk. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Results Many first-degree relatives indicated that they anticipated being happy to make lifestyle changes such as losing weight or changing their diet to modify their risk of developing RA. Participants further indicated that in order to make any lifestyle changes it would be useful to know their personal risk of developing RA. Others implied they would not contemplate making lifestyle changes, including stopping smoking, unless this would significantly reduce or eliminate their risk of developing RA. Many first-degree relatives had more negative perceptions about taking preventive medication to reduce their risk of RA, and listed concerns about potential side effects as one of the reasons for not wanting to take preventive medicines. Others would be more willing to consider drug interventions although some indicated that they would wish to wait until symptoms developed. Conclusions Information targeted at those considered to be at risk of RA should contain information about RA, the extent to which risk can be quantified at an individual level and how risk levels may differ depending on whether early symptoms are present. The benefits (and risks) of lifestyle changes and pharmacological interventions as potential preventive measures should be clearly described.

Patients’ and rheumatologists’ perceptions on preventive intervention in rheumatoid arthritis and axial spondyloarthritis

“…Disease risk perception, ethical views on cohort participation, and willingness to change lifestyle to decrease disease risk are similar between individuals at risk of RA or axSpA. The previously reported high willingness of FDRs of RA patients to change their lifestyle [13][14][15] is also observed in the present at-risk populations. The willingness to use preventive medication seems higher in symptomatic RA-risk individuals compared to asymptomatic FDRs.…”

“…However, information about perceptions of individuals at risk of RA regarding preventive treatment is still limited. Previous studies in first-degree relatives (FDRs) of RA patients showed that many were willing to make lifestyle changes such as weight loss or diet changes and that their willingness to start preventive medication was primarily influenced by perceived risk of RA development, medication effectiveness, and potential side effects [ 13 – 15 ]. Furthermore, the opinion of the health care professional might be an important attribute involved in the patient’s decision whether or not to take preventive treatment [ 16 , 17 ].…”

I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis

“…Although they had developed strategies to cope with this situation, they indicated that they would have preferred additional tailored information and support at the time when they were told that they had an elevated risk of developing RA. Clinicians should address the information and support needs identified in the current study by further developing effective, tailored education to support decision‐making about whether to take a predictive test and to provide guidance and support for understanding and coping with test results .…”

Preferences of Patients and At-risk Individuals for Preventive Approaches to Rheumatoid Arthritis

“…63 However, discussions in that study suggested that lifestyle change, for example smoking cessation, was of limited interest. 63 Fear of drug side effects was highlighted as a central theme, which has also been identified in qualitative studies in Europe 58,60 .…”

“…It is therefore important to understand patients' perspectives in this context to identify barriers and facilitators to approaches targeting first-degree relatives. This was the focus of a UK based qualitative study 52 Preferences for interventions to reduce risk of developing RA Several European qualitative studies have explored preferences relating to preventive interventions for RA of first-degree relatives [58][59][60] , RA patients 52,59 , and ACPA positive individuals without arthritis. 53 Lifestyle change was preferred over pharmacological interventions to reduce RA risk 52, 53, 58-60 , however positive viewpoints were associated with the perspective that any intervention would need to substantially reduce or completely remove their risk of RA.…”