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"Living a normal life": a qualitative study of patients' views of medication withdrawal in rheumatoid arthritis.

ABSTRACT: Background:Withdrawal of disease-modifying anti-rheumatic drugs (DMARDs) once disease remission is achieved is endorsed by current international rheumatoid arthritis (RA) management guidelines. However, very little data exists concerning patients' views of this practice. In this qualitative study, we aimed to explore patients' perspectives on DMARD withdrawal in the setting of established RA. Methods:In this qualitative interview study, patients with stable established RA were recruited from rheumatology outpatient clinics at a large UK teaching hospital. The perceived advantages and disadvantages of DMARDs and views on DMARD withdrawal were explored in semi-structured interviews. Interview transcripts were analysed using standard qualitative techniques to construct an analytical framework. Results:Thirteen participants (8 female, median [IQR] age 65 [61-73]) expressed their views of DMARD treatment in the context of their "normal lives". For some patients, disadvantages such as medication side-effects and the inconvenience of safety monitoring were sufficient hindrances to their lifestyle to justify DMARD withdrawal. However, patients who were vulnerable to loss of physical function, or who had prior experience of severe rheumatoid arthritis, expressed a strong preference against DMARD withdrawal, viewing the potential for increased pain and future disability as unacceptable risks. Conclusions:Patients view DMARD withdrawal in the context of either restoring or threatening their "normal lives". In this model, social and personal factors play a crucial role in influencing patients' opinions of DMARD therapy beyond a simple consideration of medication side-effects alone. A formulaic approach to DMARD withdrawal determined and imposed by clinicians would not be successful. Instead, the discussion of DMARD withdrawal should take place with the identification of patients' priorities and in the context of their personal disease experiences. Trial registration:clinicaltrials.gov (NCT02064400), retrospectively registered 17 February 2014.

SUBMITTER: Baker KF

PROVIDER: S-EPMC6567658 | biostudies-other | 2019

REPOSITORIES: biostudies-other

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"Living a normal life": a qualitative study of patients' views of medication withdrawal in rheumatoid arthritis.

Baker Kenneth F KF Isaacs John D JD Thompson Ben B

BMC rheumatology 20190613

<h4>Background</h4>Withdrawal of disease-modifying anti-rheumatic drugs (DMARDs) once disease remission is achieved is endorsed by current international rheumatoid arthritis (RA) management guidelines. However, very little data exists concerning patients' views of this practice. In this qualitative study, we aimed to explore patients' perspectives on DMARD withdrawal in the setting of established RA.<h4>Methods</h4>In this qualitative interview study, patients with stable established RA were rec ...[more]

PMID: 31225429

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Project description:Background:The TITRATE trial seeks to test whether intensive management is valuable in achieving disease remission in moderately active rheumatoid arthritis. Intensive management is a complex intervention consisting of: 1) 12 x monthly appointments, 2) tailored 'treatment support' based on motivational interviewing techniques, 3) optimised medication (including the opportunity for biologics), 4) provision of a Patient Handbook, and 5) shared treatment planning. This study aims to understand: a) patients' and practitioners' views on the feasibility and acceptability of intensive management, and b) patients' and practitioners' experience of receiving/providing intensive management. Methods:A qualitative study, nested within a randomised controlled trial. Participants were patients (n =?15) in the intensive management arm of the trial and rheumatology practitioners (n =?16) providing the intensive management intervention, from 18/42 clinics across England. Data were collected via semi-structured interviews and analysed using thematic analysis and iterative categorization. Results:Monthly appointments were largely acceptable to both groups who cited several treatment benefits (e.g. regular review of medication, practitioners built close relationships with patients). Practitioners were 'fairly confident' using the motivational interviewing techniques. Learning to pace was the most commonly reported self-management technique that patients and healthcare professionals worked on together, followed by gaining control over pain and fatigue. Practitioners liked having the option to offer biologics to patients with moderate RA. Most patients found the optimised medication (following monthly joint assessment) helpful and side-effects experienced were resolved. Variation existed in the extent to which patients engaged with the Patient Handbook and shared treatment planning, with those who did engage doing so in the early stages. Conclusions:Feedback from patient participants about the intensive management intervention was positive. They found increased medication helpful. Continuity of care with the same healthcare professional at regular intensive management sessions, and the treatment support provided, were highly rated. Feedback from practitioners indicated that intensive management training is feasible. Evidence from the interviews showed that some practitioners applied motivational interviewing techniques during standard care appointments and they would like the opportunity to address lifestyle issues with patients.

Project description:Background:Rheumatoid arthritis is an autoimmune disease that causes joint inflammation. It affects around 400,000 people in the UK and 1 million adults in the USA. Given the appropriate treatment, many can have relatively few symptoms. It is therefore important to understand what it is like to live with rheumatoid arthritis and gain insight into peoples' decisions about utilising healthcare. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients' experience of living with rheumatoid arthritis and (2) develop a conceptual understanding of what it is like to live with rheumatoid arthritis. Methods:We used the methods of mega-ethnography. The innovation of mega-ethnography is to use conceptual findings from qualitative evidence syntheses as primary data. We searched four bibliographic databases from inception until September 2018 to identify qualitative evidence syntheses that explored patients' experience of rheumatoid arthritis. Results:We identified 373 qualitative evidence syntheses, removed 179 duplicates and screened 194 full text studies. We identified 42 qualitative evidence syntheses that explored the experience of pain or arthritis and 9 of these explored the experience of rheumatoid arthritis. We abstracted ideas into 10 conceptual categories: (1) rheumatoid arthritis is in control of my body (2) rheumatoid arthritis alters reciprocity; (3) rheumatoid arthritis is an emotional challenge; (4) rheumatoid arthritis disrupts my present and future self; (5) the challenge of balancing personal and work life; (6) I am trying to make sense of what is happening; (7) rheumatoid arthritis is variable and unpredictable; (8) rheumatoid arthritis is invisible; (9) I need a positive experience of healthcare, and (10) I need to reframe the situation. We developed a conceptual model underpinned by living life precariously with rheumatoid arthritis. Conclusions:This is the second mega-ethnography, or synthesis of qualitative evidence syntheses using the methods of meta-ethnography. Future research should consider the proliferation of qualitative evidence synthesis in order to avoid duplication of research effort. Our model for rheumatoid arthritis has some important clinical implications that might be transferable to other musculoskeletal conditions.

Project description:ObjectivePatients with rheumatoid arthritis (RA) in whom remission is achieved following combination therapy with methotrexate plus etanercept face an ongoing medication burden. This study was undertaken to investigate whether sustained remission achieved on combination therapy can be maintained with either methotrexate or etanercept monotherapy, as assessed following discontinuation of one or the other medication from the combination.MethodsOf the 371 adult patients with RA who received combination therapy with methotrexate plus etanercept, remission (defined as a Simplified Disease Activity Index [SDAI] score of ≤3.3) was sustained in 253 patients through a 24-week open-label period. These 253 patients then entered a 48-week, double-blind period and were randomized to receive either 1) methotrexate monotherapy (n = 101), 2) etanercept monotherapy (n = 101), or 3) methotrexate plus etanercept combination therapy (n = 51). Patients who subsequently experienced disease-worsening received rescue therapy with the combination regimen at the same dosages as used in the initial run-in period. The primary end point was the proportion of patients in whom SDAI-defined remission was maintained without disease-worsening at week 48 in the etanercept monotherapy group as compared to the methotrexate monotherapy group. Secondary end points included time to disease-worsening, and the proportion of patients in whom SDAI-defined remission was recaptured after initiation of rescue therapy.ResultsBaseline demographic and clinical characteristics of the RA patients were similar across the treatment groups. At week 48, SDAI-defined remission was maintained in significantly more patients in the etanercept monotherapy group than in the methotrexate monotherapy group (49.5% versus 28.7%; P = 0.004). Moreover, as a secondary end point, sustained SDAI-defined remission was achieved in significantly more patients who received combination therapy than in those who received methotrexate monotherapy (52.9% versus 28.7%; P = 0.006). Time to disease-worsening was shorter in those who received methotrexate monotherapy than in those who received etanercept monotherapy or those who received combination therapy (each P < 0.001 versus methotrexate monotherapy). Among the patients who received rescue therapy, SDAI-defined remission was recaptured in 70-80% in each treatment group. No new safety signals were reported.ConclusionThe efficacy of etanercept monotherapy was superior to that of methotrexate monotherapy and similar to that of combination therapy in maintaining remission in patients with RA. SDAI-defined remission was recaptured in most of the patients who were given rescue therapy. These data could inform decision-making when withdrawal of therapy is being considered to reduce treatment burden in patients with well-controlled RA.

Project description:BackgroundRheumatoid arthritis (RA) is a chronic systemic autoimmune disease that primarily affects joints with some extraarticular involvement. If inappropriately treated, it usually results in persistent joint pain, irreversible deformities, and functional disability, leading to poor quality of life. Our objective was to evaluate health-related quality of life (HRQoL) and related factors in patients with RA.MethodsFour hundred sixty-four patients from the Rheumatoid Arthritis registries of Siriraj and Phramongkutklao teaching hospitals were enrolled. Sociodemographic, clinical and laboratory data related to disease activity, and functional status were collected. HRQoL was assessed using the Thai version of EuroQol five dimensional questionnaire (EQ-5D) and EQ global health visual analogue scale (EQ VAS). Univariate and multivariate analyses were employed to identify factors related to HRQoL.ResultsEighty-five percent were female with a mean age ± SD of 59.15 ± 11.43 years and a mean disease duration ± SD of 11.53 ± 8.3 years. The mean educational level ± SD was 9.42 ± 5.21 years. Almost half were unemployed or retired (47%). They had moderate disease activity (mean cumulative DAS28 ± SD, 3.5 ± 0.8) and mild functional impairment (mean HAQ ± SD, 0.70 ± 0.68). The mean EQ-5D ± SD (0-1) was 0.87 ± 0.13 and mean EQ VAS ± SD (0-10) was 7.94 ± 1.7. Based on the EQ-5D domain, 49% reported that they had no problem with mobility, 83% had no difficulties with self-care, 65% had no difficulties with usual activity, 30% had no pain or discomfort, and 61% had no depression or anxiety. The relationship between problems of each dimension in EQ-5D significantly increased according to severity of RA assessed by the Disease Activity Score (DAS) 28 and Health Assessment Questionnaire (HAQ) (p < 0.01). In multivariate analyses, high cumulative disease activity, functional disability, depression, and anxiety were negatively associated with EQ-5D (adjusted R 2 0.38, p < 0.001) and EQ VAS (adjusted R 2 0.19, p < 0.001).ConclusionDisease severity and psychological disturbance have a negative impact on quality of life in patients with RA. These factors should be considered in management of RA patients to improve the standard of care.

Dataset Information

"Living a normal life": a qualitative study of patients' views of medication withdrawal in rheumatoid arthritis.

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"Living a normal life": a qualitative study of patients' views of medication withdrawal in rheumatoid arthritis.

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