Perspectives of patients, first-degree relatives and rheumatologists on preventive treatments for rheumatoid arthritis: a qualitative analysis

Katherine Milbers,Luke Spooner,Marie Hudson,Mark Harrison,Cheryl Koehn,Sarah Munro

doi:10.1186/s41927-018-0026-7

Abstract

BackgroundThere is growing evidence that it may be possible to identify people at high risk of developing rheumatoid arthritis (RA). Assuming that effective interventions were available, this could mean that treatments introduced in the pre-symptomatic phase could prevent or delay the onset of the disease. Our study aimed to identify the potential attributes involved in decision-making around whether or not to take preventive treatment for RA, in order to inform the development of a discrete choice experiment (DCE) to ascertain consumer preferences for a preventive treatment program for RA.MethodsWe conducted a focus group study to develop conceptual attributes, refine their meaning, and develop levels. Participants included RA patients, first-degree relatives of RA patients, and rheumatologists who were 18 years of age and over, could read and speak English, and could provide informed consent. Candidate attributes were refined through iterative rounds of data collection and analysis. All focus groups were audio-recorded and transcribed, and then analyzed using the Framework Method to identify, compare, and contrast key conceptual attributes.ResultsAttributes identified from analysis included: accuracy of the test, certainty in estimates, method of administration, risk of RA and risk of reduction with treatment, risk and seriousness of side effects, person recommending the test, and opinion of the health care professional. Patients with RA, first-degree relatives of patients, and rheumatologists all valued the accuracy of testing due to concerns about false positives, and valued certainty in estimates of the test and preventive treatment. Patients and first-degree relatives desired this evidence from a range of sources, including discussions with people with the disease and health care professionals, and their preferences were modified by the strength of recommendation from their health care professional.ConclusionsThe role of the person who recommends a test and the opinion of a health care professional are novel potential attributes involved in decisions around whether or not to take preventive treatment for RA, that have not been included in previous DCEs.

Highlights

There is growing evidence that it may be possible to identify people at high risk of developing rheumatoid arthritis (RA)
Our study aimed to identify the potential attributes involved in decisions around whether or not to take preventive treatment for RA, to inform the development of a discrete choice experiment (DCE) that would subsequently be used to ascertain the preferences of people at risk of developing RA for development of a preventive treatment program for RA
Summary of qualitative analysis and key themes In total, 5 focus groups were conducted with 25 participants (13 patients [7 in first round, 6 in second round], 5 first degree relatives [3 in first round, 2 in second round], and 7 rheumatologists [second round])

Summary

Introduction

There is growing evidence that it may be possible to identify people at high risk of developing rheumatoid arthritis (RA). Multiple studies have shown that RA has a prolonged and identifiable asymptomatic pre-clinical development phase, during which characteristic biomarkers appear, in particular antibodies against cyclic citrullinated peptide (CCP) [7,8,9,10]. These autoantibodies have been shown to precede the onset of RA symptoms by many years and are highly specific to RA [7, 11, 12]. To the best of our knowledge, there are currently two qualitative studies involving first-degree relatives from the UK, Germany, and Austria [18, 19] and one exploratory binary choice experiment, which was not developed using qualitative methods [15], that explores or describes which attributes of a potential preventive treatment program for RA are valued by those who might be asked to recommend, consider, and provide or accept preventive treatment [17]

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