Differences in Disability Perception in Systemic Sclerosis: A Mirror Survey of Patients and Health Care Providers.

Differences in disability perception between patients and care providers may impact outcomes. We aimed to explore differences in disability perception between patients and care providers in systemic sclerosis (SSc). We conducted a cross-sectional internet-based mirror survey. SSc patients participating in the online SPIN Cohort and care providers affiliated with 15 scientific societies were surveyed using the Cochin Scleroderma International Classification of Functioning, Disability and Health (ICF)-65 questionnaire, including 65 items (from 0 to 10), representing 9 domains of disability. Mean differences between patients and care providers were calculated. Care providers' characteristics associated with a mean difference ≥ 2 of 10 points were assessed in multivariate analysis. Answers were analyzed for 109 patients and 105 care providers. The mean age of patients was 55.9 (14.7) years and the disease duration was 10.1 (7.5) years. For all domains of the ICF-65, care providers' rates were higher than those of patients. The mean difference was 2.4 (1.0) of 10 points. Care providers' characteristics associated with this difference were organ-based specialty (OR = 7.0 [2.3-21.2]), younger age (OR = 2.7 [1.0-7.1]) and following patients with disease duration ≥5 years (OR = 3.0 [1.1-8.7]). We found systematic differences in disability perception between patients and care providers in SSc.

Construction of an ICF core set and ICF-based questionnaire assessing activities and participation in patients with systemic sclerosis.

OBJECTIVES: To develop an International Classification of Functioning, Disability and Health (ICF) core set for SSc and to conceive a patient-centred ICF-based questionnaire assessing activities and participation in patients with SSc. METHODS: The construction of the ICF core set followed two steps. In the first step, meaningful concepts related to SSc were collected using data source triangulation from patients (n = 18), experts (n = 10) and literature (n = 174 articles). In the second step, concepts were linked to the best-matching ICF categories by one reviewer according to prespecified linking rules. Finally, patient-reported activities and participation categories of the ICF core set were translated into understandable questions. RESULTS: After linking concepts to ICF categories, 150 ICF categories were collected from focus groups, 22 from experts and 82 from literature. After fusion of the sources and removal of duplicates, the ICF core set included 164 categories: one at the first level, 157 at the second level and six at the third level, with 50 categories on body functions, 15 on body structures, 52 on activities and participation, and 47 on environmental factors. Patient-reported ICF categories on activities and participation were translated into a patient-centred ICF-based 65-item questionnaire. CONCLUSION: The present study proposes an ICF core set that offers a conceptual framework for SSc patients' care and health policy. Using a patient-centred approach, a patient-centred ICF-based questionnaire, the Cochin Scleroderma ICF-65 questionnaire, assessing activities and participation in patients with SSc, was conceived. TRIAL REGISTRATION: ClinicalTrials.gov, http://clinicaltrials.gov, NCT01848418.

The burden of musculoskeletal conditions.

OBJECTIVE: Despite the burden of rheumatic and musculoskeletal diseases (RMDs), these conditions probably deserve more attention from public health authorities in several countries including developed ones. We assessed their contribution to disability. METHODS: Data on disabilities associated with RMDs were extracted from the national 2008-2009 Disability-Health Survey of 29,931 subjects representative of the population in France. We used the core set of disability categories for RMDs of the World Health Organization's International Classification of Functioning, Disability and Health for analysis. Diagnosis and disabilities were self-reported. We assessed the risk of disability associated with RMDs using odds ratios (ORs) and the societal impact of RMDs using the average attributable fraction (AAF). RESULTS: Overall 27.7% (about 17.3 million people) (95% CI 26.9-28.4%) of the population reported having RMDs. The most prevalent RMDs were low back pain (12.5%, 12.1-13.1) and osteoarthritis (12.3%, 11.8-12.7). People reporting osteoarthritis were more disabled in walking (adjusted OR 1.9, 1.7-2.2) than those without. People reporting inflammatory arthritis were more limited in activities of daily living (from 1.4, 1.2-1.8 for walking to 2.1, 1.5-2.9 for moving around). From a societal perspective, osteoarthritis was the main contributor to activity limitations (AAF 22% for walking difficulties). Changing jobs was mainly attributed to neck pain (AAF 13%) and low back pain (11.5%). CONCLUSION: RMDs are highly prevalent and significantly affect activity limitations and participation restrictions. More effort is needed to improve care and research in this field.

Clinical, functional and health-related quality of life correlates of clinically significant symptoms of anxiety and depression in patients with systemic sclerosis: a cross-sectional survey.

OBJECTIVES: To identify clinical, functional and health-related quality of life (HRQoL) correlates of clinically significant symptoms of anxiety and depression in patients with systemic sclerosis (SSc). METHODS: Three-hundred-and-eighty-one patients fulfilling the American College of Rheumatology and/or the Leroy and Medsger criteria for SSc were assessed for visceral involvement, disability and HRQoL (assessed by SF-36). Clinically significant symptoms of anxiety and depression were evaluated with the Hospital Anxiety Depression Scale (HAD) (defined cut-off≥8). RESULTS: 9.2% the patients had limited SSc, 50.5% limited cutaneous SSc (lcSSc), and 40.3% diffuse cutaneous SSc (dcSSc). Overall, 40.4% and 58.8% of the patients had clinically significant symptoms of depression and anxiety, respectively. Compared to patients without clinically significant symptoms of depression, patients with clinically significant symptoms of depression had poorer health status, HRQoL mental and physical component, and greater global disability, hand disability and aesthetic impairment. Compared to patients without clinically significant symptoms of anxiety, patients with clinically significant symptoms of anxiety had poorer SF-36 mental and physical component scores. On multivariable analysis, excluding mental component score of SF-36, variables independently associated with clinically significant symptoms of depression and anxiety were global disability and physical component of SF-36, plus female gender for clinically significant symptoms of anxiety only. Remarkably, patients with and without clinically significant psychiatric symptoms were comparable for all disease-related clinical features assessed. CONCLUSION: High levels of clinically significant symptoms of anxiety and depression are observed among SSc patients. Clinically significant psychiatric symptoms are rather associated with increased disability and altered HRQoL, than with disease-specific organ manifestations.

McMaster-Toronto Arthritis Patient Preference Disability Questionnaire sensitivity to change in low back pain: influence of shifts in priorities.

OBJECTIVE: To assess the sensitivity to change of the McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) in chronic low back pain (CLBP) and shifts in patients' priorities of disabling activities over time. METHODS: A prospective longitudinal survey of 100 patients (38 males) with CLBP in a tertiary care teaching hospital. Evaluation at baseline and 6 months by the MACTAR, Quebec Back Pain Disability Questionnaire (QUEBEC), Hospital Anxiety and Depression scale (HAD), Fear-Avoidance Beliefs Questionnaire (FABQ), Coping Strategies Questionnaire (CSQ), and pain and handicap visual analogue scales (VASs). Patients' perceived improvement or worsening of condition was assessed at 6 months. Effect size (ES) and Standardized response mean (SRM) and effect size (ES) were used to evaluate sensitivity to change of the MACTAR. RESULTS: The MACTAR SRM and ES values (SRM = 0.25; ES = 0.37) were among the highest for the instruments evaluated. For patients considering their condition as improved, the SRM was 0.66 and the ES 1. The 3 disability domains, classified by the International Classification of Functioning, Disability and Health (ICF), most often cited as priorities at baseline remained the most cited at follow-up: mobility (40.9% of patients); community, social and civic life (22.7%); and domestic life (22.4%). At 6 months, 48 patients shifted their priorities, for a decrease in MACTAR SRM and ES values for patients considering their condition improved and an increase in these values for those considering their condition deteriorated. CONCLUSIONS: Although the MACTAR has similar sensitivity to change as other outcome measures widely used in CLBP, shifts in patient priorities over time are common and influence scores and sensitivity to change.

Association of gender with clinical expression, quality of life, disability, and depression and anxiety in patients with systemic sclerosis.

OBJECTIVES: To assess the association of gender with clinical expression, health-related quality of life (HRQoL), disability, and self-reported symptoms of depression and anxiety in patients with systemic sclerosis (SSc). METHODS: SSc patients fulfilling the American College of Rheumatology and/or the Leroy and Medsger criteria were assessed for clinical symptoms, disability, HRQoL, self-reported symptoms of depression and anxiety by specific measurement scales. RESULTS: Overall, 381 SSc patients (62 males) were included. Mean age and disease duration at the time of evaluation were 55.9 (13.3) and 9.5 (7.8) years, respectively. One-hundred-and-forty-nine (40.4%) patients had diffuse cutaneous SSc (dcSSc). On bivariate analysis, differences were observed between males and females for clinical symptoms and self-reported symptoms of depression and anxiety, however without reaching statistical significance. Indeed, a trend was found for higher body mass index (BMI) (25.0 [4.1] vs 23.0 [4.5], p = 0.013), more frequent dcSSc, echocardiography systolic pulmonary artery pressure >35 mmHg and interstitial lung disease in males than females (54.8% vs 37.2%, p = 0.010; 24.2% vs 10.5%, p = 0.003; and 54.8% vs 41.2%, p = 0.048, respectively), whereas calcinosis and self-reported anxiety symptoms tended to be more frequent in females than males (36.0% vs 21.4%, p = 0.036, and 62.3% vs 43.5%, p = 0.006, respectively). On multivariate analysis, BMI, echocardiography PAP>35 mmHg, and anxiety were the variables most closely associated with gender. CONCLUSIONS: In SSc patients, male gender tends to be associated with diffuse disease and female gender with calcinosis and self-reported symptoms of anxiety. Disease-associated disability and HRQoL were similar in both groups.

Assessment of ankylosing spondylitis criteria in patients with chronic low back pain and vertebral endplate Modic I signal changes.

OBJECTIVE: Patients with chronic low back pain (cLBP) and vertebral endplate Modic I signal changes on lumbar magnetic resonance imaging (MRI) have clinical features that could mimic inflammatory back pain related to spondyloarthritis (SpA) and/or ankylosing spondylitis (AS). We aimed to assess whether such patients fulfilled criteria for SpA and/or AS. METHODS: For 5 months in 2008, all patients (n = 314) referred to a tertiary care physical medicine and rehabilitation facility in France were consecutively screened. A total of 185 hospitalized for non-specific cLBP were prospectively assessed. Forty patients fulfilling inclusion criteria were consecutively enrolled and included in 2 groups according to MRI findings: Modic I (n = 15) and non-Modic I (n = 25). MRI findings were assessed independently by 2 spine specialists and a radiologist. HLA-B27 status was determined. Data were collected on clinical measurements and fulfillment of Amor criteria (AC) and modified New York criteria (mNYC). All assessors were blinded to HLA-B27 status. RESULTS: Whatever the Modic group, no patient fulfilled AC or mNYC, and mean total scores were comparable [3 ± 2 (range 0-22; p = 0.977), 1 ± 1 (range 0-3; p = 1.000), and 0 ± 0 (range 0-1; p = 1.000) for AC and clinical and radiological mNYC, respectively]. HLA-B27 status was similar in both groups [n = 2 (13%) vs n = 0 (0%); p = 0.135]. CONCLUSION: Patients with cLBP and Modic I vertebral endplate signal changes on lumbar MRI do not fulfill widely used and validated criteria for SpA and/or AS. Such cases are clinically distinct from SpA and AS.

Employment status and socio-economic burden in systemic sclerosis: a cross-sectional survey.

OBJECTIVE: To assess employment status and socio-economic burden in SSc patients. METHODS: Eighty-seven SSc patients (72 females), fulfilling the ACR or the Leroy and Medsger criteria, or both, were evaluated for employment status, socio-economic burden and handicap. Statistical analysis involved Mann-Whitney U-test and Fisher's exact test and backward stepwise regression analysis. RESULTS: In total, 60.9% of the SSc patients were on full-time sick leave and 35.6% were receiving a disability pension. On univariate analysis, myalgia was the only clinical manifestation more frequently encountered in sick-leave patients than others (73.6 vs 47.1%; P = 0.012). Karnofsky performance status (KPS) was lower in SSc patients who were on sick leave or were receiving a disability pension than others [78.5 (10.6) vs 85.8 (9.0); P = 0.004 and 78.1 (8.7) vs 83.1 (11.2); P = 0.016, respectively]. In addition, greater global, hand and mouth handicaps and depression were observed in patients on sick leave [HAQ 0.9 (0.7) vs 0.6 (0.5); P = 0.021; Cochin Hand Function Scale 21.7 (18.9) vs 10.7 (12.1); P = 0.003; mouth handicap scale 20.2 (10.8) vs 14.6 (10.0); P = 0.014; and depression dimension of the hospital anxiety and depression scale 7.1 (3.9) vs 4.8 (3.4); P = 0.003]. On multivariate analysis, factors associated with sick leave were KPS [odds ratio (OR) 0.92; 95%CI 0.88, 0.98] and myalgias (OR 3.19; 95% CI 1.19, 8.58), and the factor associated with receiving a disability pension was decreased income (OR 8.19; 95% CI 2.67, 25.12). CONCLUSIONS: SSc patients commonly have to take full-time sick leave from work. Despite such patients receiving disability pensions, the socio-economic burden is considerable.

Sensitivity to change in systemic sclerosis of the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR): shift in patient priorities over time.

OBJECTIVE: To assess the sensitivity to change of the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) in systemic sclerosis (SSc) and a shift in patient priorities over time. METHODS: We assessed 49 patients with SSc (8 men) using the MACTAR in a prospective longitudinal study twice or more during annual meetings of the French patient association from 2004 to 2007. Patient-perceived improvement or worsening regarding health status was recorded. Sensitivity to change was assessed by the effect size (ES) and the standardized response mean (SRM) of the MACTAR. RESULTS: The MACTAR global score was significantly increased at followup in the whole group of patients, and the ES and SRM values were -0.37 and -0.34, respectively. These values were similar to those observed for widely used outcome measures for SSc such as the Health Assessment Questionnaire. As defined by the International Classification of Functioning, Disability and Health, the 3 disability domains most often cited at baseline were mobility (7 activities, cited 17 times; 33.3% of patients), domestic life (4 activities, cited 17 times; 33.3% of patients), and community, social and civic life (3 activities, cited 10 times; 19.6% of patients). At followup, 40 patients had changed their first priority and 34 changed 3 priorities. CONCLUSION: The evolution in MACTAR global score over time for patients with SSc reflects longterm general feelings of deterioration. However, shifts in patient priorities are common and may influence the sensitivity to change of the instrument.

Patient-preference disability assessment for disabling chronic low back pain: a cross-sectional survey.

STUDY DESIGN: A cross sectional survey. OBJECTIVE.: To assess patient priorities in disability and restriction in participation with disabling chronic low back pain (CLBP) by use of the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) and to compare this questionnaire with other outcome measures widely used in this situation. SUMMARY OF BACKGROUND DATA: Disability and participation restriction are widely assessed in CLBP but do not account for patient priorities. Knowing what is important to patients could be useful to help form treatment goals and plans. METHODS: A total of 150 patients hospitalized in a tertiary care teaching hospital for the management of CLBP were enrolled in the study. Evaluation was by the MACTAR, the Quebec Back Pain Disability Questionnaire (QUEBEC), the Hospital Anxiety and Depression scale, the Fear-Avoidance Beliefs Questionnaire, the Coping Strategies Questionnaire, and pain and handicap visual analog scales. Correlations between the MACTAR score and scores for other scales were analyzed by the Spearman coefficient. RESULTS: On the MACTAR, patients with CLBP cited as most important 3 disability domains classified by the International Classification of Functioning, Disability, and Health: mobility (n = 23 activities, 165 times, 33% of the patients); community, social, and civic life (n = 7 activities, 138 times, 27.6% of the patients); and domestic life (n = 10 activities, 123 times, 24.6% of the patients). Patients ranked first in importance 37 different activities, especially sport (n = 29 times; 19.3% of the patients), shopping (n = 14; 9.3% of the patients), and walking (n = 13; 8.7% of the patients). The MACTAR score was correlated moderately with visual analog scale handicap (r = 0.51), weakly with the QUEBEC score (r = 0.40), and not at all with Hospital Anxiety and Depression scale, Fear-Avoidance Beliefs Questionnaire, and Coping Strategies Questionnaire scores. CONCLUSION: For assessing priorities in disability and participation restriction among patients with CLBP, the MACTAR has acceptable construct validity. The weak correlation between QUEBEC and MACTAR scores suggests that the latter scale adds useful information for assessing the health priorities of disabled CLBP patients.