EULAR/eumusc.net standards of care for rheumatoid arthritis: cross-sectional analyses of importance, level of implementation and care gaps experienced by patients and rheumatologists across 35 European countries.

OBJECTIVE: As part of European League against Rheumatism (EULAR)/European Musculoskeletal Conditions Surveillance and Information Network, 20 user-focused standards of care (SoCs) for rheumatoid arthritis (RA) addressing 16 domains of care were developed. This study aimed to explore gaps in implementation of these SoCs across Europe. METHODS: Two cross-sectional surveys on the importance, level of and barriers (patients only) to implementation of each SoC (0-10, 10 highest) were designed to be conducted among patients and rheumatologists in 50 European countries. Care gaps were calculated as the difference between the actual and maximum possible score for implementation (ie, 10) multiplied by the care importance score, resulting in care gaps (0-100, maximal gap). Factors associated with the problematic care gaps (ie, gap≥30 and importance≥6 and implementation<6) and strong barriers (≥6) were further analysed in multilevel logistic regression models. RESULTS: Overall, 26 and 31 countries provided data from 1873 patients and 1131 rheumatologists, respectively. 19 out of 20 SoCs were problematic from the perspectives of more than 20% of patients, while this was true for only 10 SoCs for rheumatologists. Rheumatologists in countries with lower gross domestic product and non-European Union countries were more likely to report problematic gaps in 15 of 20 SoCs, while virtually no differences were observed among patients. Lack of relevance of some SoCs (71%) and limited time of professionals (66%) were the most frequent implementation barriers identified by patients. CONCLUSIONS: Many problematic gaps were reported across several essential aspects of RA care. More efforts need to be devoted to implementation of EULAR SoCs.

The eumusc.net standards of care for rheumatoid arthritis: importance and current implementation according to patients and healthcare providers in the Netherlands.

OBJECTIVES: The eumusc.net standards of care (SOCs) for rheumatoid arthritis (RA) aimed to improve quality of care across Europe. This study investigated importance and implementation of each standard according to patients and health care professionals (HCPs) in the Netherlands and identified barriers towards implementation. METHODS: Dutch patients, rheumatologists and rheumatology nurses rated importance and implementation (0-10 numeric rating scale (NRS); 10=most important/best implemented) for each of the 20 SOCs. A care gap, adjusted for importance, was calculated: (100=highest gap). Statistical differences between a) patients and HCPs and b) subgroups of patients (demographics, health) were tested. Additionally, patients indicated agreement (0-10) with 6 implementation barriers. RESULTS: 386 patients and 91 HCPs were included. Both ranked adequate disease modifying anti-rheumatic drug treatment (9.3(SD1.2), 9.2(SD0.8)), access to care in emergencies (9.2(SD1.2), 9.2(SD1.0)) and regular re-appraisal when treatment fails (9.2(SD1.3), 9.0(SD1.0)) the most important SOCs, and these were among the best implemented (NRS≥8.5) SOCs. After accounting for applicability, patients and HCP identified care gaps for early diagnosis (25.5(SD32.0), 22.3(SD16.3)), availability of a treatment plan (25.1(SD22.7), 25.7(SD18.5)) and patients also for a regular schedule of assessment of disease (28.6(SD25.5)).Patients with poorer health or higher education scored systematically lower on care received while sharing similar priorities. Patients and HCPs considered limited reimbursement of specific health services a main barrier for implementation and patients additionally identified limited time of physicians. CONCLUSIONS: Dutch patients and HCPs overall agreed on priorities in care and found relevant SOCs well implemented. However, suggestions for improvement were raised especially by patients with poorer health and/or higher education.

Equivalence in the Health Assessment Questionnaire (HAQ) across socio-demographic determinants: Analyses within QUEST-RA.

OBJECTIVES: To investigate potential bias in scores of the Health Assessment Questionnaire (HAQ) related to socio-demographic (SD) background of patients with rheumatoid arthritis (RA). METHODS: Data from the Quantitative Standard Monitoring of Rheumatoid Arthritis study (QUEST-RA), comprising 9022 patients were analysed. Physical function was assessed through 30 items of four HAQ versions: the HAQ-Disability scale, HAQ-II, modified HAQ and multi-dimensional HAQ (MD-HAQ). DIF was investigated using item response theory models implemented in a latent variable modelling framework. Models were equivalent to ordinal logistic regression models with HAQ score (item level) as outcome, the latent trait 'physical function' and individual SD factors (age, gender, education, and employment status) as predictors. Next, scores of composite HAQs were adjusted for DIF. To assess the impact of DIF on associations between SD factors and HAQs, multilevel mixed-effect linear regression models with individuals nested in country were estimated with DIF-adjusted or unadjusted HAQ as outcome. RESULTS: Relevant DIF (OR > 1.1 or <0.90) was found in several HAQ items primarily for age, gender and work status. Adjustment of composite HAQs for DIF resulted in small increases (Δ0.02-0.07); MD-HAQ best compensated for bias related to SD factors (Δ0.02). In regressions, all SD factors remained significantly related to DIF-adjusted HAQs, with differences in coefficients largest for gender (Δ0.02-0.07) but overall negligible. CONCLUSIONS: SD factors produce response bias in individual HAQ items but have little impact on composite HAQs. When interpreting HAQ across SD factors, MD-HAQ is preferred, but caution remains when comparing function across gender.

Influence of disease activity on RA treatment choices in countries with restricted access to expensive, innovative drugs: a discrete choice experiment among rheumatologists.

OBJECTIVE: To assess the influence of disease activity of patients with rheumatoid arthritis on treatment choices of rheumatologists in countries with restricted access to expensive, innovative drugs. METHODS: Rheumatologists from Hungary, Romania and UK were invited to complete two consecutive discrete choice experiments with hypothetical drug treatments for two different patient profiles: high and moderate disease activity. Rheumatologists were asked to choose repeatedly between two unlabelled treatment options that differed in five attributes: efficacy (expected improvement and achieved disease activity state), safety (probability of serious adverse events), patient's preference (level of agreement), total medication costs and cost-effectiveness. A heteroscedastic discrete choice model using interaction terms between attribute levels and patient profiles (binary variable) was used to assess the preferences of rheumatologists towards each attribute and the influence of the patient profile. RESULTS: Overall, 148 rheumatologists completed the survey (46% females, mean age 49 years, 49% academic). For both patient profiles, efficacy dominated the treatment choice over patient's preference, safety and economic aspects. However, for patients with high compared with moderate disease activity, the importance of drug efficacy significantly increased (from 48% for moderate to 57% for high disease activity), whereas the importance of patient's preference significantly decreased (from 15% to 11%). No significant differences were observed for economic and safety considerations. CONCLUSION: Rheumatologists were willing to give up some efficacy to account for patient's preference when choosing treatments for patients with moderate compared to high disease activity. Disease activity however did not influence importance of economic aspects in treatment choices.

Patients' preferences and economic considerations play an important role in treatment decisions: a discrete choice experiment among rheumatologists.

OBJECTIVE: To evaluate to what extent rheumatologists consider economic aspects and patients' preferences when choosing drug treatments in patients with active RA. METHODS: In a discrete choice experiment, rheumatologists were asked to choose between two unlabelled drug treatment options for a hypothetical RA patient with moderate disease activity who failed two synthetic DMARDs. Attributes and levels of drug treatments were selected based on existing literature, rheumatologists' opinion and expert consensus. This resulted in five attributes each described by three levels: efficacy (level of improvement and achieved state on DAS28), safety (probability of a serious adverse event), patients' preference (level of agreement), annual medication costs and cost-effectiveness (incremental cost-effectiveness ratio). An efficient experimental design generated 14 treatment choices and a random parameter logit model estimated the relative importance of attributes. RESULTS: Sixty-three rheumatologists from the Netherlands contributed to the analysis; 44% were female and mean (sd) age was 49 (8) years. Drug efficacy had the strongest relative contribution to the drug choice (44%) followed by medication costs (24%), patients' preference (17%) and cost-effectiveness (14%). Patients' preferences were most relevant when patients disliked a proposed treatment. The risk of serious but uncommon or rare side effects only played a minor role in the treatment choice (1%). CONCLUSION: In addition to drug efficacy, rheumatologists account for economic aspects and for patients' preferences when deciding on drugs. Decisions are more influenced by absolute costs than relative cost-effectiveness and by patients' disliking as opposed to favouring the treatment.

In wealthier countries, patients perceive worse impact of the disease although they have lower objectively assessed disease activity: results from the cross-sectional COMORA study.

OBJECTIVES: To investigate patterns in patient-reported and physician-reported disease outcomes in patients with rheumatoid arthritis (RA) from countries with different level of socioeconomic development. METHODS: Data from a cross-sectional multinational study (COMOrbidities in RA) were used. Contribution of socioeconomic welfare (gross domestic product (GDP); low vs high) of country of residence to physician-reported (tender joint count, swollen joint count (SJC), erythrocyte sedimentation rate, disease activity score based on 28 joints assessment (DAS28)-3v based on these three components and physician global assessment) and patient-reported (modified Health Assessment Questionnaire (mHAQ), patient global assessment and fatigue) disease outcomes was explored in linear regressions, adjusting for relevant confounders. RESULTS: In total, 3920 patients with RA from 17 countries (30 to 411 patients per country) were included, with mean age of 56 years (SD13) and 82% women. Mean SJC varied between 6.7 (Morocco) and 0.9 (The Netherlands), mean mHAQ ranged between 0.7 (Taiwan) and 1.5 (The Netherlands). Venezuela had the lowest (1.7) and the Netherlands the highest score on fatigue (5.0). In fully adjusted models, lower GDP was associated with worse physician-reported outcomes (1.85 and 2.84 more swollen and tender joints, respectively, and 1.0 point higher DAS28-3v), but only slightly worse performance-based patient-reported outcome (0.15 higher mHAQ), and with better evaluation-based patient-reported outcomes (0.43 and 0.97 points lower on patient global assessment and fatigue, respectively). CONCLUSIONS: In patients with RA, important differences in physician-reported and patient-reported outcomes across countries were seen, with overall a paradox of worse physician-reported outcomes but better patient-reported outcomes in low-income countries, while results indicate that these outcomes in multinational studies should be interpreted with caution. Research on explanatory factors of this paradox should include non-disease driven cultural factors influencing health.

In rheumatoid arthritis, country of residence has an important influence on fatigue: results from the multinational COMORA study.

OBJECTIVES: To investigate the relationship between country of residence and fatigue in RA, and to explore which country characteristics are related to fatigue. METHODS: Data from the multinational COMORA study were analysed. Contribution of country of residence to level of fatigue [0-10 on visual analogue scale (VAS)] and presence of severe fatigue (VAS ⩾ 5) was explored in multivariable linear or logistic regression models including first socio-demographics and objective disease outcomes (M1), and then also subjective outcomes (M2). Next, country of residence was replaced by country characteristics: gross domestic product (GDP), human development index (HDI), latitude (as indicator of climate), language and income inequality index (gini-index). Model fit (R(2)) for linear models was compared. RESULTS: A total of 3920 patients from 17 countries were included, mean age 56 years (s.d. 13), 82% females. Mean fatigue across countries ranged from 1.86 (s.d. 2.46) to 4.99 (s.d. 2.64) and proportion of severe fatigue from 14% (Venezuela) to 65% (Egypt). Objective disease outcomes did not explain much of the variation in fatigue ([Formula: see text] = 0.12), while subjective outcomes had a strong negative impact and partly explained the variation in fatigue ([Formula: see text]= 0.27). Country of residence had a significant additional effect (increasing model fit to [Formula: see text] = 0.20 and [Formula: see text] = 0.36, respectively). Remarkably, higher GDP and better HDI were associated with higher fatigue, and explained a large part of the country effect. Logistic regression confirmed the limited contribution of objective outcomes and the relevant contribution of country of residence. CONCLUSION: Country of residence has an important influence on fatigue. Paradoxically, patients from wealthier countries had higher fatigue.