The relation between upper extremity joint involvement and grip force in early rheumatoid arthritis: a retrospective study.

To investigate the relation between joint involvement in the upper extremities and grip force in patients with early rheumatoid arthritis (RA). An inception cohort of 225 patients with early RA was followed according to a structured protocol. The same rheumatologist assessed all patients for swollen joints and joint tenderness. Grip force was measured (Grippit; AB Detektor, Gothenburg, Sweden) at the same visit. Average grip force values for the dominant hand were expressed as % of expected, based on age- and sex-specific reference values from the literature. Associations between grip force and current synovitis or tenderness of individual joints, and other disease parameters measured at the same visit, were examined. Patients with current synovitis of the wrist joint or ≥ 1 metacarpophalangeal (MCP) joint of the dominant hand had a significantly lower grip force at inclusion, at 1 year and at 5 years. Proximal interphalangeal joint tenderness and MCP joint tenderness were consistently associated with reduced grip force. In multivariate analysis, extensive MCP joint synovitis was associated with lower grip force at inclusion (ß - 2.8% per joint; 95% CI - 5.3 to - 0.4), and also at the 1-year follow-up. Patient reported pain scores and erythrocyte sedimentation rates had independent negative associations with grip force at all time points. In patients with early RA, extensive synovitis of the MCP joints was associated with reduced grip force, independently of other upper extremity joint involvement. Pain and inflammation have effects on hand function beyond those mediated by local synovitis.

The revised Bristol Rheumatoid Arthritis Fatigue measures and the Rheumatoid Arthritis Impact of Disease scale: validation in six countries.

Objective: To evaluate the Bristol Rheumatoid Arthritis Fatigue Multidimensional Questionnaire (BRAF-MDQ), the revised Bristol Rheumatoid Arthritis Numerical Rating Scales (BRAF-NRS V2) and the Rheumatoid Arthritis Impact of Disease (RAID) scale in six countries. Methods: We surveyed RA patients in France, Germany, The Netherlands, Spain, Sweden and the UK, including the HAQ, 36-item Short Form Health Survey (SF-36) and potential revisions of the BRAF-NRS coping and Spanish RAID coping items. Factor structure and internal consistency were examined by factor analysis and Cronbach's α and construct validity by Spearman's correlation. Results: A total of 1276 patients participated (76% female, 25% with a disease duration <5 years, median HAQ 1.0). The original BRAF-MDQ four-factor structure and RAID single-factor structure were confirmed in every country with ⩾66% of variation in items explained by each factor and all item factor loadings of 0.71-0.98. Internal consistency for the BRAF-MDQ total and subscales was a Cronbach's α of 0.75-0.96 and for RAID, 0.93-0.96. Fatigue construct validity was shown for the BRAF-MDQ and BRAF-NRS severity and effect scales, correlated internally with SF-36 vitality and with RAID fatigue (r = 0.63-0.93). Broader construct validity for the BRAFs and RAID was shown by correlation with each other, HAQ and SF-36 domains (r = 0.46-0.82), with similar patterns in individual countries. The revised BRAF-NRS V2 Coping item had stronger validity than the original in all analyses. The revised Spanish RAID coping item performed as well as the original. Conclusion: Across six European countries, the BRAF-MDQ identifies the same four aspects of fatigue, and along with the RAID, shows strong factor structure and internal consistency and moderate-good construct validity. The revised BRAF-NRS V2 shows improved construct validity and replaces the original.

Translating patient reported outcome measures: methodological issues explored using cognitive interviewing with three rheumatoid arthritis measures in six European languages.

OBJECTIVE: Cross-cultural translation of patient-reported outcome measures (PROMs) is a lengthy process, often performed professionally. Cognitive interviewing assesses patient comprehension of PROMs. The objective was to evaluate the usefulness of cognitive interviewing to assess translations and compare professional (full) with non-professional (simplified) translation processes. METHODS: A full protocol used for the Bristol RA Fatigue Multi-dimensional Questionnaire and Numerical Rating Scale (BRAF-MDQ, BRAF-NRS) was compared with a simplified protocol used for the RA Impact of Disease scale (RAID). RA patients in the UK, France, the Netherlands, Germany, Spain and Sweden completed the PROMs during cognitive interviewing (BRAFs in the UK were omitted as these were performed during development). Transcripts were deductively analysed for understanding, information retrieval, judgement and response options. Usefulness of cognitive interviewing was assessed by the nature of problems identified, and translation processes by percentage of consistently problematic items (⩾40% patients per country with similar concerns). RESULTS: Sixty patients participated (72% women). For the BRAFs (full protocol) one problematic item was identified (of 23 items × 5 languages, 1/115 = 0.9%). For the RAID (simplified protocol) two problematic items were identified (of 7 items × 6 languages, 2/42 = 4.8%), of which one was revised (Dutch). Coping questions were problematic in both PROMs. CONCLUSION: Conceptual and cultural challenges though rare were important, as identified by formal evaluation, demonstrating that cognitive interviewing is crucial in PROM translations. Proportionately fewer problematic items were found for the full than for the simplified translation procedure, suggesting that while both are acceptable, professional PROM translation might be preferable. Coping may be a particularly challenging notion cross-culturally.

Content validity of global measures for at-work productivity in patients with rheumatic diseases: an international qualitative study.

OBJECTIVES: To identify from a patient's perspective, difficulties and differences in the comprehension of five global presenteeism measures in patients with inflammatory arthritis and OA across seven countries. METHODS: Seventy patients with a diagnosis of inflammatory arthritis or OA in paid employment were recruited from seven countries across Europe and Canada. Patients were randomly allocated to be cognitively debriefed on 3/5 global measures [Work Productivity Scale - Rheumatoid Arthritis, Work Productivity and Activity Impairment Questionnaire (WPAI), Work Ability Index, Quality and Quantity questionnaire, and WHO Health and Work Performance Questionnaire (HPQ)], with the WPAI debriefed in all patients as a standard measure of comparison between countries and patients. NVivo was used to code the data into four themes: construct and anchor, time recall, reference frame, and attribution. RESULTS: Discrepancies were found in the interpretation of the word performance (HPQ) between countries, with Romania and Sweden relating performance to sports rather than work. Seventy percent of patients considered that a 7-day recall (WPAI) can accurately represent how their disease affects work productivity. The compared to normal reference (Quality and Quantity questionnaire) was reportedly too ambiguous, and the comparison with colleagues (HPQ), made many feel uncomfortable. Overall, 29% of patients said the WPAI was the most relevant to them, making it the most favoured measure. CONCLUSION: Overall, patients across countries agree that the construct of work productivity in the last 7 days can accurately reflect the impact of disease while at work. Some current constructs to assess at-work productivity are not interchangeable between languages.

Challenged by the jaw - an interview study on patients' experiences of temporomandibular disorders in rheumatic inflammatory diseases.

PURPOSE: Rheumatic inflammatory diseases affecting the temporomandibular joint and the masticatory system (TMD) have been described as painful and limiting. However, the condition is often overlooked in primary care. The objective of this qualitative study was to explore and describe TMD-related experiences and perceptions of persons with rheumatic inflammatory disease, and to put this into a rehabilitation perspective. MATERIALS AND METHODS: Seven participants with rheumatic inflammatory disease and concomitant TMD were interviewed using a semi-structured interview guide. Giorgi's phenomenological method was used for analysis of the material. RESULTS: The general structure of the results after phenomenological reduction indicated that the phenomenon could be described as the process of being challenged by the jaw. Five themes emerged from the analysis; 1. Physical challenges of the jaw and the struggle to retain control, 2. Shame and social challenges, 3. Worrying about the future, frustration, grief, and loss of freedom, 4. Defiance, endurance, and efforts to maintain self-esteem, and 5. Health-care experiences. CONCLUSIONS: TMD in rheumatic inflammatory diseases are complex problems associated with various challenges to the sufferer. An increased awareness of the condition and earlier interventions could reduce both suffering and worsening of the condition.

The connection between the jaw and the rest of the body tends to be neglected.Questions about the jaw should be asked to detect eventual temporomandibular disorder (TMD) at an early stage to prevent worsening of the condition.Patient's experiences of TMD must be considered in the rehabilitation process.Health care providers are important for an earlier, more consistent, and more accessible diagnosis and treatment for this group of people.

Trends in the first decade of 21st century healthcare utilisation in a rheumatoid arthritis cohort compared with the general population.

PURPOSE: To study 21st century trends in healthcare utilisation by patients with rheumatoid arthritis (RA) compared with the general population. METHODS: Observational cohort study. Using Swedish healthcare register data, we identified 3977 Region Skåne residents (mean age in 2001, 62.7 years; 73% women) presenting with RA (International Classification of Diseases-10 codes M05 or M06) in 1998-2001. We randomly sampled two referents from the general population per RA patient matched for age, sex and area of residence. We calculated the year 2001-2010 trends for the annual ratio (RA cohort/referents) of the mean number of hospitalisations and outpatient clinic visits. RESULTS: By the end of the 10-year period, 62% of patients and 74% of referents were still alive and resident in the region. From 2001 to 2010, the ratio (RA cohort/referents) of the mean number of hospitalisations for men and women decreased by 27% (p=0.01) and 28% (p=0.004), respectively. The corresponding decrease was 29% (p=0.005) and 16% (p=0.004) for outpatient physician care, 34% (p=0.009) and 18% (p=0.01) for nurse visits, and 34% (p=0.01) and 28% (p=0.004) for physiotherapy. The absolute reduction in number of hospitalisations was from an annual mean of 0.79 to 0.69 in male patients and from 0.71 to 0.59 in female patients. The corresponding annual mean number of consultations in outpatient physician care by male and female RA patients changed from 9.2 to 7.7 and from 9.9 to 8.7, respectively. CONCLUSIONS: During the first decade of the 21st century, coinciding with increasing use of earlier and more active RA treatment including biological treatment, overall inpatient and outpatient healthcare utilisation by a cohort of patients with RA decreased relative to the general population.

The Relation Between Disease Activity, Patient-Reported Outcomes, and Grip Force Over Time in Early Rheumatoid Arthritis.

OBJECTIVE: The objective of this study is to identify early predictors of future reduced grip force in patients with rheumatoid arthritis (RA) and to identify early predictors of grip force over time. METHODS: In a structured follow-up of an inception cohort of patients with early RA, average grip force values of the dominant hand were evaluated and compared with the expected based on age- and sex-specific reference values. Potential predictors of reduced grip force (less than 50% of expected) at 5 years were examined using logistic regression. Differences in percentage of expected grip force values over the study period and differences in change over time, by baseline disease parameters, were estimated using mixed linear-effects models. RESULTS: Among 200 patients with early RA, 44% had reduced grip force 5 years after diagnosis. Baseline characteristics that predicted reduced grip force at 5 years included high scores for the Health Assessment Questionnaire Disability Index (odds ratio 1.54 per SD; 95% confidence interval 1.13-2.11), high scores for pain and patient global assessment, and low grip force. C-reactive protein levels, the erythrocyte sedimentation rate, the 28-joint Disease Activity Score (DAS28), rheumatoid factor, anti-cyclic citrullinated peptide antibodies, joint counts, and synovitis of individual joints in the dominant upper extremity did not predict reduced grip force. Patients with baseline synovitis of the wrist or metacarpophalangeal joints or patients with a high DAS28 had lower estimated grip force at inclusion but also greater improvement of grip force over time. CONCLUSION: Patient-reported outcomes predicted reduced grip strength 5 years after diagnosis. This underlines the prognostic importance of disability in early RA. Joint counts and synovitis in individual joints may change rapidly in early RA and appear to be less predictive of long-term hand function.

Test-retest Reliability and Correlations of 5 Global Measures Addressing At-work Productivity Loss in Patients with Rheumatic Diseases.

OBJECTIVE: Several global measures to assess at-work productivity loss or presenteeism in patients with rheumatic diseases have been proposed, but the comparative validity is hampered by the lack of data on test-retest reliability and comparative concurrent and construct validity. Our objective was to test-retest 5 global measures of presenteeism and to compare the association between these scales and health-related well-being. METHODS: Sixty-five participants with inflammatory arthritis or osteoarthritis in paid employment were recruited from 7 countries (UK, Canada, Netherlands, France, Sweden, Romania, and Italy). At baseline and 2 weeks later, 5 global measures of presenteeism were evaluated: the Work Productivity Scale-Rheumatoid Arthritis (WPS-RA), Work Productivity and Activity Impairment Questionnaire (WPAI), Work Ability Index (WAI), Quality and Quantity questionnaire (QQ), and the WHO Health and Performance Questionnaire (HPQ). Agreement between the 2 timepoints was assessed using single-measure intraclass correlations (ICC) and correlated between each other and with visual analog scale general well-being scores at followup by Spearman correlation. RESULTS: ICC between measures ranged from fair (HPQ 0.59) to excellent (WPS-RA 0.78). Spearman correlations between measures were moderate (Qquality vs WAI, r = 0.51) to strong (WPS-RA vs WPAI, r = 0.88). Correlations between measures and general well-being were low to moderate, ranging from -0.44 ≤ r ≤ 0.66. CONCLUSION: Test-retest results of 4 out of 5 global measures were good, and the correlations between these were moderate. The latter probably reflect differences in the concepts, recall periods, and references used in the measures, which implies that some measures are probably not interchangeable.

Which patients improve the most after arthritis rehabilitation? A study of predictors in patients with inflammatory arthritis in Northern Europe, the STAR-ETIC collaboration.

OBJECTIVE: To study health-related quality of life (HRQoL) in arthritis rehabilitation performed by multidisciplinary teams in patients with chronic inflammatory arthritis. Predictors of change in health-related quality of life and the proportion of patients with clinical improvement were investigated. DESIGN: Multicentre prospective observational study in 4 European countries. METHODS: HRQoL was measured with the European Quality 5 Dimensions (EQ-5D) and the Short Form 36 Health Survey (SF-36) in 731 patients who underwent multidisciplinary rehabilitation. Potential predictors were physical functioning (Health Assessment Questionnaire (HAQ)), self-efficacy (Arthritis Self Efficacy Scale (ASES)), psychological health (Hopkins Symptom Check List (HSCL-25)), pain/fatigue (numeric rating scales (NRS)), age, sex, diagnosis, comorbidity, education, clinical setting and change of medication during rehabilitation. Analysis of covariance (ANCOVA) was used to assess for potential predictors and interactions. The minimal important differences for HRQoL were analysed. RESULTS: Reporting worse function (b 0.05, p = 0.01), less psychological well-being (b 0.09, p = 0.000), and experiencing more pain (b 0.03, p = 0.000) or fatigue (b 0.02, p = 0.000) at admission predicted improved HRQoL. Change in medication during rehabilitation (b 0.08, p = 0.013) was associated with greater improvement in HRQoL. These EQ-5D findings were supported by SF-36 findings. Positive minimal important differences were noted in 46% (EQ-5D) and 23-47% (SF-36 subscales) of the patients. CONCLUSION: Patients with more severe symptoms experienced the largest gain in HRQoL post-intervention. The results of this study are of value for selecting the right patients for rheumatological team rehabilitation.

What's in the black box of arthritis rehabilitation? A comparison of rehabilitation practice for patients with inflammatory arthritis in northern Europe.

BACKGROUND: In evaluating complex interventions, it is a challenge for researchers to provide transparent reporting of the intervention content with sufficient detail and clarity such that effects can be compared across studies or countries. OBJECTIVE: To describe and compare the content of current rehabilitation for patients with inflammatory arthritis across 4 northern European countries. PATIENTS AND METHODS: A total of 731 patients with inflammatory rheumatic diseases participated in a multicentre, longitudinal observational study carried out in Sweden, The Netherlands, Denmark and Norway. Data on context, structure and process were reported by patients and teams at the different participating study sites according to the Scandinavian Team Arthritis Register-European Team Intiative for Care Research (STAR-ETIC) framework. RESULTS: Although large similarities were found in the context, there were important differences between the Netherlands and the Scandinavian countries. Regarding structure, there were considerable differences in the length of the rehabilitation period across settings and countries. The most evident differences concerned process variables, especially the type and dosage of individual treatment modalities. CONCLUSION: The variation in important aspects of arthritis rehabilitation found in the present study underline the need for transparent and standardized description of these variables when comparing effects across settings and countries. A standardized description of current practice can be achieved by the STAR-ETIC framework.

Goal-setting in multidisciplinary team care for patients with rheumatoid arthritis: an international multi-center evaluation of the contents using the International Classification of Functioning, Disability and Health as a reference.

OBJECTIVE: To make a cross-cultural comparison of the contents of rehabilitation goals of patients admitted for rehabilitation and to compare the contents with the comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis, by linking their contents to the ICF. PATIENTS: A random sample of 80 patients with rheumatoid arthritis was retrieved from rehabilitation clinics in 4 countries. METHODS: Rehabilitation goals were extracted from the medical records and linked to the ICF using standardized linking rules. RESULTS: A total of 495 rehabilitation goals were identified and linked to 952 ICF codes, resulting in 151 unique ICF codes. Two-hundred and seventy-five (29%) of the 952 ICF codes were related to "Body Functions" (b-codes), 80 (8%) to "Body Structures" (s-codes), 419 (44%) to "Activities and Participation" (d-codes) and 178 (19%) to "Environmental Factors" (e-codes). Thirty-five of the 151 unique ICF codes (23%) were not in the comprehensive ICF Core Set for RA, whereas 23 of the ICF codes in this Core Set (24%) were not in the rehabilitation goals. CONCLUSION: The goals set in a team rehabilitation setting for patients with rheumatoid arthritis are related to all ICF components, with "Activities and Participation" being the most frequently addressed. The contents of the goals are, to a considerable extent, covered by the comprehensive ICF Core Set for RA, but additional evaluation is required before the ICF Core Set is used as a rehabilitation tool in rheumatoid arthritis.

Cultural adaptation, validity, reliability and responsiveness of the Swedish version of the effective musculoskeletal consumer scale (EC-17).

BACKGROUND: Endorsed by the Outcome MEasures in Rheumatoid Arthritis in Clinical Trials (OMERACT) group, The Effective Consumer Scale (EC-17) was developed in English for patients with musculoskeletal diseases to assess the skills and perceptions important for participating in and managing health care. The objective of this study was culturally to adapt the questionnaire into Swedish and to study its psychometric properties. METHODS: After translation of the questionnaire into Swedish, two different groups of outpatients from two specialist rheumatology departments participated in the study. Face validity was assessed, together with internal consistency, test-retest and responsiveness of the questionnaire. Construct validity was assessed using the Arthritis Self-Efficacy Scale (ASES), and responsiveness to a five day educational intervention was analysed using the standardized response mean (SRM). RESULTS: Analyses were based on 124 patients with inflammatory rheumatic diseases, of whom 50 attended the intervention. Data quality met the requirements, with missing values <5%, and floor and ceiling effects <15%. Item total correlations were all >0.4, ranging from 0.49 to 0.88. Cronbach's alpha was 0.93 and 0.95 for the two groups. The test-retest correlation (ICC2.1) was 0.94, and there was a significant improvement as a result of the intervention, with an SRM of 0.43. However, the questionnaire had a higher construct validity with the ASES subscale 'other symptoms' than hypothesized a priori (r(s) 0.75). CONCLUSION: The Swedish version of the EC-17 met the required recommendations for face validity, internal consistency, test-retest reliability and responsiveness. Its construct validity needs to be further established, and the questionnaire needs further testing in different groups of patients and in different interventions.

Validation of outcome measurement instruments used in a multidisciplinary rehabilitation intervention for patients with chronic inflammatory arthritis: linking of the International Classification of Functioning, Disability and Health, construct validity and responsiveness to change.

OBJECTIVE: To determine the validity of 15 standardized instruments frequently used to measure the outcome of chronic arthritis treatment. METHODS: Analyses were performed on data collected at a rehabilitation programme (n=216). The outcome measures evaluated were health-related quality of life, global health, pain, physical function and aerobic capacity. The instrument items were linked to the International Classification of Functioning, Disability and Health (ICF) (content validity), construct validity was analysed based on predetermined hypothesis (Spearman's correlations, rs), and responsiveness (after 18 days and 12 months) by the standardized response mean. RESULTS: Most instruments covered the ICF component body function and/or activity-participation, only a few covered the environmental component. The short Euroqol-5 Dimensions performed as well as the longer health-related quality of life instruments in covering the ICF and in responsiveness. The health-related quality of life instruments did not measure similar constructs as hypothesized, neither did pain measures. The Bath Ankylosing Spondylitis indices covered several components of the ICF often exhibiting a large responsiveness. Aerobic capacity had the largest responsiveness of all measures. CONCLUSION: Many instruments are not highly correlated, although at face value they appear to measure the same construct, information also applying to content validity and responsiveness. Results from this study can assist in choosing outcome measures in the clinic and in research.

Team-based rehabilitation improves long-term aerobic capacity and health-related quality of life in patients with chronic inflammatory arthritis.

PURPOSE: To examine the effect of an interdisciplinary, out-patient rehabilitation programme for patients with chronic inflammatory arthritis on aerobic capacity and health-related quality of life (HRQOL). METHOD: One hundred and seventy-four patients, 115 with peripheral arthritis (PA) (91 women, mean age 53 years, disease duration 16 years) and 59 with spondylarthropathies (SpA), (27 women, mean age 46 years, disease duration 14 years) were consecutively enrolled in 18 days of interdisciplinary rehabilitation. We report data from evaluations at inclusion, at discharge, and at 4 and 12 months using a sub-maximal treadmill test of aerobic capacity and the Nottingham Health Profile (NHP) (t-test). RESULTS: At inclusion, less than 20% of all patients tested had aerobic capacity classified as 'average' or better. At discharge, 41% (PA) and 54% (SpA) reached the 'average' level or better with improvements maintained for 12 months. The total NHP scores improved in both groups (mean change -12 (99%CI -15, -9) for PA; mean change -13 (99%CI -19, -8) for SpA) and were maintained. CONCLUSION: Aerobic capacity and HRQOL improved significantly in this interdisciplinary out-patient rehabilitation study, and improvements were maintained for 12 months. The preserved level of aerobic capacity after 12 months indicated a change to a more physically active lifestyle among the participants.