Patients' Attitudes and Experiences of Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis and Spondyloarthritis: A Qualitative Synthesis

Objective.Nonadherence to disease-modifying antirheumatic drugs (DMARDS) in rheumatoid arthritis (RA) and spondy-loarthritis (SpA) results in increased disease activity and symptoms and poorer quality of life. We aimed to describepatients’ attitudes and experiences of DMARDs in RA and SpA to inform strategies to improve medication adherence.Methods.Databases (MEDLINE, Embase, PsycINFO, and CINAHL) were searched to January 2016. Thematic synthesiswas used to analyze the findings.Results.From 56 studies involving 1,383 adult patients (RA [n=1,149], SpA [n=191], not specified [n=43]), we identified 6themes (with subthemes): intensifying disease identity (severity of sudden pharmacotherapy, signifying deteriorating health,daunting lifelong therapy), distressing uncertainties and consequences (poisoning the body, doubting efficacy, conflictingand confusing advice, prognostic uncertainty with changingtreatment regimens), powerful social influences (swayed byothers’ experiences, partnering with physicians, maintaining roles, confidence in comprehensive and ongoing care, valuingpeer support), privilege and right of access to biologic agents (expensive medications must be better, right to receive a biologicagent, fearing dispossession), maintaining control (complete ownership of decision, taking extreme risks, minimizing life-style intrusion), and negotiating treatment expectations (miraculous recovery, mediocre benefit, reaching the end of the line).Conclusion.Patients perceive DMARDs as strong medications with alarming side effects that intensify their disease iden-tity. Trust and confidence in medical care, positive experiences with DMARDS among other patients, and an expectationthat medications will help maintain participation in life can motivate patients to use DMARDs. Creating a supportive envi-ronment for patients to voice their concerns may improve treatment satisfaction, adherence, and health outcomes

Patient and caregiver priorities for medication adherence in gout, osteoporosis and rheumatoid arthritis: nominal group technique

Objectives: This study aimed to identify and prioritize factors important to patients and caregivers with regard to medication adherence in gout, osteoporosis (OP) and rheumatoid arthritis (RA), and to describe the reasons for their decisions. Methods: Patients with gout, OP and RA, and their caregivers purposively sampled from five rheumatology clinics in Australia, identified and ranked factors considered important for medication adherence using nominal group technique and discussed their decisions. An importance score (scale 0-1) was calculated, and qualitative data were analysed thematically. Results: From 14 focus groups, 82 participants (67 patients, 15 caregivers) identified 49 factors. The top five factors based on the ranking of all participants were trust in doctor (importance score 0.46), medication effectiveness (0.31), doctor's knowledge (0.25), side effects (0.23), medication taking routine (0.13). The order of the ranking varied by participant groupings with patients ranking trust in doctor the highest whilst caregivers ranked side effects the highest. Five themes reflecting the reasons for factors influencing adherence were: motivation and certainty in supportive individualised care; living well and restoring function; fear of toxicity and cumulative harm; seeking control and involvement; and unnecessarily difficult and inaccessible. Conclusions: Factors related to the doctor, medication properties and patients' medication knowledge and routine were important for adherence. Strengthening doctor-patient trust and partnership, managing side effects, and empowering patients with knowledge and skills for medicine-taking could enhance medication adherence in patients with rheumatic conditions

Outcome Measures in Rheumatology - Interventions for medication Adherence (OMERACT-Adherence) Core Domain Set for Trials of Interventions for Medication Adherence in Rheumatology: 5 Phase Study Protocol

Background: Over the last 20 years, there have been marked improvements in the availability of effective medications for rheumatic conditions such as gout, osteoporosis and rheumatoid arthritis (RA), which have led to a reduction in disease flares and the risk of re-fracture in osteoporosis, and the slowing of disease progression in RA. However, medication adherence remains suboptimal, as treatment regimens can be complex and difficult to continue long term. Many trials have been conducted to improve adherence to medication. Core domains, which are the outcomes of most relevance to patients and clinicians, are a pivotal component of any trial. These core domains should be measured consistently, so that all relevant trials can be combined in systematic reviews and meta-analyses to reach conclusions that are more valid. Failure to do this severely limits the potential for trial-based evidence to inform decisions on how to support medication adherence. The Outcome Measures in Rheumatology (OMERACT) – Interventions for Medication Adherence study by the OMERACT-Adherence Group aims to develop a core domain set for interventions that aim to support medication adherence in rheumatology. Methods/design: This OMERACT-Adherence study has five phases: (1) a systematic review to identify outcome domains that have been reported in interventions focused on supporting medication adherence in rheumatology; (2) semi-structured stakeholder interviews with patients and caregivers to determine their views on the core domains; (3) focus groups using the nominal group technique with patients and caregivers to identify and rank domains that are relevant to them, including the reasons for their choices; (4) an international three-round modified Delphi survey involving patients with diverse rheumatic conditions, caregivers, health professionals, researchers and other stakeholders to develop a preliminary core domain set; and (5) a stakeholder workshop with OMERACT members to review, vote on and reach a consensus on the core domain set for interventions to support medication adherence in rheumatology. Discussion: Establishing a core domain set to be reported in all intervention studies undertaken to support patients with medication adherence will enhance the relevance and the impact of these results and improve the lives of people with rheumatic conditions.Pharmaceutical Sciences, Faculty ofNon UBCReviewedFacult