The absence of a standardized disease activity index has been an important barrier in systemic sc... more The absence of a standardized disease activity index has been an important barrier in systemic sclerosis (SSc) research. We applied the newly derived Valentini Scleroderma Disease Activity Index (SDAI) among our cohort of patients with SSc to document changes in disease activity over time and to assess possible differences in activity between limited and diffuse disease. Cross-sectional study of a national cohort of patients enrolled in the Canadian Scleroderma Research Group Registry. Disease activity was measured using the SDAI. Depression scores were measured using the Centre for Epidemiologic Studies Depression Scale (CES-D). A total of 326 out of 639 patients had complete datasets at the time of this analysis; 87% were female, of mean age 55.6 years, with mean disease duration 14.1 years. SDAI declined steeply in the first 5 years after disease onset and patients with diffuse disease had 42% higher SDAI scores than patients with limited disease with the same disease duration and depression scores (standardized relative risk 1.42, 95% CI 1.21, 1.65). Patients with higher CES-D scores had higher SDAI scores relative to patients with the same disease duration and disease subset (standardized RR 1.22, 95% CI 1.14, 1.31). Among the 10 components that make up the SDAI, only skin score (standardized OR 0.59, 95% CI 0.43, 0.82) and patient-reported change in skin (standardized OR 0.64, 95% CI 0.45, 0.92) decreased with increasing disease duration. High skin scores (standardized OR 32.2, 95% CI 15.8, 72.0) were more likely and scleredema (standardized OR 0.58, 95% CI 0.37, 0.92) was less likely to be present in patients with diffuse disease. High depression scores were associated with positive responses for patient-reported changes in skin and cardiopulmonary function. Disease activity declined with time and patients with diffuse disease had consistently higher SDAI scores. Depression was found to be associated with higher patient activity scores and strongly associated with patient self-response questions. The role of depression should be carefully considered in future applications of the SDAI, particularly as several components of the score rely upon patient recall.
Systemic sclerosis (SSc) is a multisystem disease associated with significant morbidity and incre... more Systemic sclerosis (SSc) is a multisystem disease associated with significant morbidity and increased mortality. Little is known about work disability in SSc. We undertook this study to determine the prevalence and demographic and clinical correlates of work disability in a large cohort of patients with SSc. Cross-sectional, multicenter study of patients from the Canadian Scleroderma Research Group Registry. Patients were assessed with detailed clinical histories, medical examinations, and self-administered questionnaires. The primary outcome was self-reported work disability. Multiple logistic regression was used to assess the relationship between selected demographic and clinical variables and work disability. Of the 643 patients available for this study, 133 (21%) reported that they were work disabled. Work disability in SSc was common, even in people with short disease duration, and increased steadily with increasing disease duration: among those who were <or= 65 years and who reported being either disabled or working, 28.0% and 44.8% of patients with disease duration of < 2 and 10-15 years, respectively, reported that they were work-disabled. The significant correlates of work disability included co-morbidities, disease duration, diffuse disease, disease severity, pain, fatigue, and physical function. Work disability is prevalent, occurs early, and is associated with markers of disease severity and functional status. Further research is needed to identify other, potentially modifiable, risk factors for work disability in SSc.
To adapt the self-administered comorbidity questionnaire (SCQ) into the Early Inflammatory Arthri... more To adapt the self-administered comorbidity questionnaire (SCQ) into the Early Inflammatory Arthritis-SCQ (EIA-SCQ) and assess its clinimetric properties in EIA. The EIA-SCQ and indices of disease activity, function, pain, health-related quality of life (HRQoL) and health resource utilization were administered to 320 patients with EIA. Twenty patients completed the EIA-SCQ a second time 1 week later. Construct validity was evaluated by testing the hypotheses that a valid comorbidity index would correlate well with age, weakly with HRQoL and recent resource utilization and poorly with indices of disease activity, function and pain. The intra-class correlation coefficient between repeat scores was 0.93 (95% CI 0.83-0.97). Kappa values for individual items ranged from 0.64 to 1.0. EIA-SCQ scores correlated moderately with age (Tau B = 0.29, P < 0.001) and weakly with function (HAQ-DI Tau B = 0.09, P = 0.03), pain (McGill Pain Questionnaire Tau B = 0.09, P = 0.05), some measures of HRQoL [the SF-36 mental component score (MCS) Tau B = - 0.08, P < 0.05; World Health Organization Disease Assessment Schedule II score Tau B = 0.09, P = 0.03] and a measure of resource utilization (number of tests in the last 4 months Tau B = 0.10, P = 0.04). The EIA-SCQ did not correlate with other measures of disease activity, another HRQoL measure [SF-36 physical component score (PCS)] or other measures of resource utilization. The EIA-SCQ is reliable and valid for use in EIA. It has the potential to become a useful measure of comorbidity in outcome studies of EIA when the resources for a full medical chart review are unavailable.
This study tested the efficacy of a brief intervention (Cues program) with mothers of very low bi... more This study tested the efficacy of a brief intervention (Cues program) with mothers of very low birth weight (VLBW <1500 g) infants. The primary hypothesis was that mothers in the Cues program would report lower levels of anxiety compared with mothers in the control group. Secondary hypotheses examined whether Cues mothers would report less stress, depression, and role restriction, and exhibit more sensitive interactive behavior, than control group mothers. A total of 121 mothers of VLBW infants were randomly assigned to either the experimental (Cues) intervention or an attention control (Care) condition. The Cues program combined training to reduce anxiety and enhance sensitivity. The control group received general information about infant care. Both programs were initiated during the neonatal intensive care unit stay. Maternal anxiety, stress, depression, and demographic variables were evaluated at baseline, prior to randomization. Postintervention outcomes were assessed during a home visit when the infant was ∼6 to 8 weeks of corrected age. Although mothers in the Cues group demonstrated greater knowledge of the content of the experimental intervention than mothers in the Care group, the groups did not differ in levels of anxiety, depression, and symptoms of posttraumatic stress. They were similar in their reports of parental role restrictions and stress related to the infant's appearance and behavior. Cues and Care group mothers were equally sensitive in interaction with their infants. Nonspecific attention was as effective as an early skill-based intervention in reducing maternal anxiety and enhancing sensitive behavior in mothers of VLBW infants.
Computing integrated likelihoods (ILs) to perform Bayesian model selection is a challenging task,... more Computing integrated likelihoods (ILs) to perform Bayesian model selection is a challenging task, particularly when the models considered involve a large number of parameters. In this article, we propose the use of an adaptive quadrature algorithm to automate the selection ...
Systemic sclerosis (SSc) is a multisystem disease associated with impaired health-related quality... more Systemic sclerosis (SSc) is a multisystem disease associated with impaired health-related quality of life (HRQOL). Our objective was to identify the clinical characteristics that correlate with the physical health status of patients with SSc, as assessed by the Medical Outcomes Trust Short Form-36 (SF-36). Cross-sectional, multicenter study of 416 patients from the Canadian Scleroderma Research Group Registry. Patients were assessed with detailed clinical histories, medical examinations, and self-administered SF-36. Multiple linear regression was used to assess the relationship between selected demographic and clinical variables and the SF-36 Physical Component Summary (PCS) score. The greatest impairments in the SF-36 were in the domains measuring physical health, and the mean SF-36 PCS score was 37.5 (+/-11.2). In multivariate analysis, significant clinical predictors of the SF-36 PCS were shortness of breath, number of gastrointestinal problems, skin score, swollen joint count, and age. The final model explained 47% of the variance in the SF-36 PCS. Clinical characteristics identified as significant correlates of the self-reported physical health status in SSc should each be targets of intervention in order to improve the HRQOL of patients with this disease.
Large descriptive studies of pain in systemic sclerosis (SSc) are lacking. The present study esti... more Large descriptive studies of pain in systemic sclerosis (SSc) are lacking. The present study estimated prevalence, severity, and associations between SSc clinical variables and pain in all patients with SSc and in limited cutaneous (lcSSc) and diffuse cutaneous (dcSSc) subsets. Patients enrolled in a multicenter SSc registry (n = 585) completed a standardized clinical assessment and questionnaires about their physical and psychosocial health, including a pain severity numerical rating scale (NRS; range 0-10). Pain prevalence and severity were estimated with descriptive statistics. Crude and adjusted associations between specific SSc clinical variables and pain were estimated with linear regression for the entire group and by SSc subtype. Of the patients, 484 (83%) reported pain (268 [46%] mild pain [NRS 1-4], 155 [27%] moderate pain [NRS 5-7], and 61 [10%] severe pain [NRS 8-10]). More frequent episodes of Raynaud's phenomenon, active ulcers, worse synovitis, and gastrointestinal (GI) symptoms were associated with pain in multivariate analysis adjusting for demographic variables, depressive symptoms, and comorbid conditions. Patients with dcSSc reported only slightly higher mean +/- SD pain than those with lcSSc (dcSSc 3.9 +/- 2.8 versus lcSSc 3.4 +/- 2.7; Hedges's g = 0.18, P = 0.05). Regression estimates did not differ significantly between SSc subsets. Pain symptoms were common in the present study of patients with SSc and were independently associated with more frequent episodes of Raynaud's phenomenon, active ulcers, worse synovitis, and GI symptoms. Subsetting by extent of skin involvement was only minimally related to pain severity and did not affect associations with clinical variables. More attention to pain and how to best manage it is needed in SSc.
Systemic sclerosis (SSc) affects multiple physical, psychological, and social domains and is asso... more Systemic sclerosis (SSc) affects multiple physical, psychological, and social domains and is associated with impaired health-related quality of life (HRQOL).We compared the HRQOL of SSc patients with individuals in the general population and patients with other common chronic diseases. HRQOL of SSc patients in the Canadian Scleroderma Research Group registry was measured using version 2 of the Medical Outcomes Trust Short Form-36 (SF-36). Results were compared to US general population norms and scores reported for patients with other common chronic diseases, namely heart disease, lung disease, hypertension, diabetes, and depression. SF-36 scores were available for 504 SSc patients (86% women, mean age 56 yrs, mean disease duration since onset of first non-Raynaud's manifestation of SSc 11 yrs). The greatest impairment in SF-36 subscale scores appeared to be in the physical functioning, general health, and role physical domains. SF-36 subscale and summary scores in SSc were significantly worse compared to US general population norms for women of similar ages, except for mental health and mental component summary score, which were not significantly different, and were generally comparable to or worse than the scores of patients with other common chronic conditions. HRQOL of patients with SSc is significantly impaired compared to that of the general population and is comparable to or worse than that of patients with other common chronic conditions.
Systemic sclerosis (SSc) is a multisystem disease associated with significant morbidity and incre... more Systemic sclerosis (SSc) is a multisystem disease associated with significant morbidity and increased mortality. Little is known about nutritional status in SSc. We investigated the prevalence and demographic and clinical correlates of nutritional status in a large cohort of patients with SSc. This was a cross-sectional multicenter study of patients (n = 586) from the Canadian Scleroderma Research Group Registry. Patients were assessed with detailed clinical histories, medical examinations, and self-administered questionnaires. The primary outcome was risk for malnutrition using the "malnutrition universal screening tool" (MUST). Multiple logistic regression was used to assess the relationship between selected demographic and clinical variables and MUST categories. Of the 586 patients in the study, MUST scores revealed that almost 18% were at high risk for malnutrition. The significant correlates of high malnutrition risk included the number of gastrointestinal (GI) complaints, disease duration, diffuse disease, physician global assessment of disease severity, hemoglobin, oral aperture, abdominal distension on physical examination, and physician-assessed possible malabsorption. Among 14 GI symptoms, only poor appetite and lack of a history of abdominal swelling and bloating predict MUST. These factors accounted for 24% of the variance in MUST scores. The risk for malnutrition in SSc is moderate and is associated with shorter disease duration, markers of GI involvement, and disease severity. Patients with SSc should be screened for malnutrition, and potential underlying causes assessed and treated when possible.
To determine the validity of the World Health Organization Disability Assessment Schedule II (WHO... more To determine the validity of the World Health Organization Disability Assessment Schedule II (WHODAS II) in systemic sclerosis (SSc). Patients enrolled in the Canadian Scleroderma Research Group registry participated in a standardized evaluation and completed the WHODAS II. Criterion validity was assessed by comparing the WHODAS II with the Medical Outcomes Study Short Form 36 (SF-36), construct validity was assessed by examining how it relates to common measures of outcome in SSc, and discriminative validity was assessed by examining how it distinguishes patients with more severe disease from those with less severe disease. A total of 402 patients with SSc were included (mean +/- SD age 55 +/- 13 years, 87% women, mean +/- SD disease duration 11 +/- 9 years). The mean +/- SD WHODAS II score was 24.6 +/- 17.4, and the greatest impairments were in life activities and mobility. There were moderate to good correlations between the WHODAS II and the SF-36 Physical Component Summary score (r = -0.44), the SF-36 Mental Component Summary score (r = -0.41), and measures of function (r = 0.54), depression (r = 0.44), pain (r = 0.40), and fatigue (r = -0.49, P < 0.0001 for all). The WHODAS II was able to consistently distinguish patients with milder disease from those with more severe disease. The WHODAS II had good psychometric properties in patients with SSc and should be considered a valid measure of health-related quality of life in SSc.
To identify the clinical characteristics of systemic sclerosis (SSc) that best correlate with the... more To identify the clinical characteristics of systemic sclerosis (SSc) that best correlate with the health-related quality of life (HRQOL) of patients with SSc, using the World Health Organization Disability Assessment Schedule II (WHODAS II) as the measure of HRQOL. A cross-sectional, multicenter study of 337 patients from the Canadian Scleroderma Research Group Registry was conducted. Patients were assessed through detailed clinical histories, medical examination, and the WHODAS II. Hierarchical multiple linear regression was used to assess the relationship between selected clinical variables and HRQOL. The mean WHODAS II score was 23.7 (range 0-100), with the greatest impairments seen in the subscales measuring life activities, mobility, and participation in society. In multivariate analysis, significant predictors of the WHODAS II were skin scores, shortness of breath, number of gastrointestinal problems, fatigue, pain, and depression. The final model explained 61% of the variance in the WHODAS II scores. The clinical characteristics identified in this study as significant correlates of HRQOL in SSc should each be targets of intervention in order to improve the HRQOL of patients with this disease.
Clinical Orthopaedics and Related Research, Jan 1, 2007
We created the McGill Range of Motion Index (McROMI) to allow us to ascribe a score to global lim... more We created the McGill Range of Motion Index (McROMI) to allow us to ascribe a score to global limited range of motion (ROM) in patients with polyarthritis. Our goal was to have an easy-to-use index that required only visual estimation of ROM and could be performed by allied health professionals with limited training. The index was created with a range of motion ranking technique involving rheumatologists at McGill University and its validity was tested in patients with early inflammatory arthritis in the McGill Early Arthritis Registry. We hypothesized a valid index would correlate with various process and outcome measures. We found correlations between the McROMI and function (Health Assessment Questionnaire), Health Related Quality of Life (SF-36), pain, a global assessment of inflammatory disease activity (DAS28), and the number of tender and swollen joints. The McROMI demonstrates good validity as a measure of ROM in early inflammatory arthritis. It will prove useful in future research as a means of controlling for ROM as a confounder of various outcomes and in studies of therapeutic maneuvers to improve ROM.
The absence of a standardized disease activity index has been an important barrier in systemic sc... more The absence of a standardized disease activity index has been an important barrier in systemic sclerosis (SSc) research. We applied the newly derived Valentini Scleroderma Disease Activity Index (SDAI) among our cohort of patients with SSc to document changes in disease activity over time and to assess possible differences in activity between limited and diffuse disease. Cross-sectional study of a national cohort of patients enrolled in the Canadian Scleroderma Research Group Registry. Disease activity was measured using the SDAI. Depression scores were measured using the Centre for Epidemiologic Studies Depression Scale (CES-D). A total of 326 out of 639 patients had complete datasets at the time of this analysis; 87% were female, of mean age 55.6 years, with mean disease duration 14.1 years. SDAI declined steeply in the first 5 years after disease onset and patients with diffuse disease had 42% higher SDAI scores than patients with limited disease with the same disease duration and depression scores (standardized relative risk 1.42, 95% CI 1.21, 1.65). Patients with higher CES-D scores had higher SDAI scores relative to patients with the same disease duration and disease subset (standardized RR 1.22, 95% CI 1.14, 1.31). Among the 10 components that make up the SDAI, only skin score (standardized OR 0.59, 95% CI 0.43, 0.82) and patient-reported change in skin (standardized OR 0.64, 95% CI 0.45, 0.92) decreased with increasing disease duration. High skin scores (standardized OR 32.2, 95% CI 15.8, 72.0) were more likely and scleredema (standardized OR 0.58, 95% CI 0.37, 0.92) was less likely to be present in patients with diffuse disease. High depression scores were associated with positive responses for patient-reported changes in skin and cardiopulmonary function. Disease activity declined with time and patients with diffuse disease had consistently higher SDAI scores. Depression was found to be associated with higher patient activity scores and strongly associated with patient self-response questions. The role of depression should be carefully considered in future applications of the SDAI, particularly as several components of the score rely upon patient recall.
Systemic sclerosis (SSc) is a multisystem disease associated with significant morbidity and incre... more Systemic sclerosis (SSc) is a multisystem disease associated with significant morbidity and increased mortality. Little is known about work disability in SSc. We undertook this study to determine the prevalence and demographic and clinical correlates of work disability in a large cohort of patients with SSc. Cross-sectional, multicenter study of patients from the Canadian Scleroderma Research Group Registry. Patients were assessed with detailed clinical histories, medical examinations, and self-administered questionnaires. The primary outcome was self-reported work disability. Multiple logistic regression was used to assess the relationship between selected demographic and clinical variables and work disability. Of the 643 patients available for this study, 133 (21%) reported that they were work disabled. Work disability in SSc was common, even in people with short disease duration, and increased steadily with increasing disease duration: among those who were <or= 65 years and who reported being either disabled or working, 28.0% and 44.8% of patients with disease duration of < 2 and 10-15 years, respectively, reported that they were work-disabled. The significant correlates of work disability included co-morbidities, disease duration, diffuse disease, disease severity, pain, fatigue, and physical function. Work disability is prevalent, occurs early, and is associated with markers of disease severity and functional status. Further research is needed to identify other, potentially modifiable, risk factors for work disability in SSc.
To adapt the self-administered comorbidity questionnaire (SCQ) into the Early Inflammatory Arthri... more To adapt the self-administered comorbidity questionnaire (SCQ) into the Early Inflammatory Arthritis-SCQ (EIA-SCQ) and assess its clinimetric properties in EIA. The EIA-SCQ and indices of disease activity, function, pain, health-related quality of life (HRQoL) and health resource utilization were administered to 320 patients with EIA. Twenty patients completed the EIA-SCQ a second time 1 week later. Construct validity was evaluated by testing the hypotheses that a valid comorbidity index would correlate well with age, weakly with HRQoL and recent resource utilization and poorly with indices of disease activity, function and pain. The intra-class correlation coefficient between repeat scores was 0.93 (95% CI 0.83-0.97). Kappa values for individual items ranged from 0.64 to 1.0. EIA-SCQ scores correlated moderately with age (Tau B = 0.29, P < 0.001) and weakly with function (HAQ-DI Tau B = 0.09, P = 0.03), pain (McGill Pain Questionnaire Tau B = 0.09, P = 0.05), some measures of HRQoL [the SF-36 mental component score (MCS) Tau B = - 0.08, P < 0.05; World Health Organization Disease Assessment Schedule II score Tau B = 0.09, P = 0.03] and a measure of resource utilization (number of tests in the last 4 months Tau B = 0.10, P = 0.04). The EIA-SCQ did not correlate with other measures of disease activity, another HRQoL measure [SF-36 physical component score (PCS)] or other measures of resource utilization. The EIA-SCQ is reliable and valid for use in EIA. It has the potential to become a useful measure of comorbidity in outcome studies of EIA when the resources for a full medical chart review are unavailable.
This study tested the efficacy of a brief intervention (Cues program) with mothers of very low bi... more This study tested the efficacy of a brief intervention (Cues program) with mothers of very low birth weight (VLBW <1500 g) infants. The primary hypothesis was that mothers in the Cues program would report lower levels of anxiety compared with mothers in the control group. Secondary hypotheses examined whether Cues mothers would report less stress, depression, and role restriction, and exhibit more sensitive interactive behavior, than control group mothers. A total of 121 mothers of VLBW infants were randomly assigned to either the experimental (Cues) intervention or an attention control (Care) condition. The Cues program combined training to reduce anxiety and enhance sensitivity. The control group received general information about infant care. Both programs were initiated during the neonatal intensive care unit stay. Maternal anxiety, stress, depression, and demographic variables were evaluated at baseline, prior to randomization. Postintervention outcomes were assessed during a home visit when the infant was ∼6 to 8 weeks of corrected age. Although mothers in the Cues group demonstrated greater knowledge of the content of the experimental intervention than mothers in the Care group, the groups did not differ in levels of anxiety, depression, and symptoms of posttraumatic stress. They were similar in their reports of parental role restrictions and stress related to the infant's appearance and behavior. Cues and Care group mothers were equally sensitive in interaction with their infants. Nonspecific attention was as effective as an early skill-based intervention in reducing maternal anxiety and enhancing sensitive behavior in mothers of VLBW infants.
Computing integrated likelihoods (ILs) to perform Bayesian model selection is a challenging task,... more Computing integrated likelihoods (ILs) to perform Bayesian model selection is a challenging task, particularly when the models considered involve a large number of parameters. In this article, we propose the use of an adaptive quadrature algorithm to automate the selection ...
Systemic sclerosis (SSc) is a multisystem disease associated with impaired health-related quality... more Systemic sclerosis (SSc) is a multisystem disease associated with impaired health-related quality of life (HRQOL). Our objective was to identify the clinical characteristics that correlate with the physical health status of patients with SSc, as assessed by the Medical Outcomes Trust Short Form-36 (SF-36). Cross-sectional, multicenter study of 416 patients from the Canadian Scleroderma Research Group Registry. Patients were assessed with detailed clinical histories, medical examinations, and self-administered SF-36. Multiple linear regression was used to assess the relationship between selected demographic and clinical variables and the SF-36 Physical Component Summary (PCS) score. The greatest impairments in the SF-36 were in the domains measuring physical health, and the mean SF-36 PCS score was 37.5 (+/-11.2). In multivariate analysis, significant clinical predictors of the SF-36 PCS were shortness of breath, number of gastrointestinal problems, skin score, swollen joint count, and age. The final model explained 47% of the variance in the SF-36 PCS. Clinical characteristics identified as significant correlates of the self-reported physical health status in SSc should each be targets of intervention in order to improve the HRQOL of patients with this disease.
Large descriptive studies of pain in systemic sclerosis (SSc) are lacking. The present study esti... more Large descriptive studies of pain in systemic sclerosis (SSc) are lacking. The present study estimated prevalence, severity, and associations between SSc clinical variables and pain in all patients with SSc and in limited cutaneous (lcSSc) and diffuse cutaneous (dcSSc) subsets. Patients enrolled in a multicenter SSc registry (n = 585) completed a standardized clinical assessment and questionnaires about their physical and psychosocial health, including a pain severity numerical rating scale (NRS; range 0-10). Pain prevalence and severity were estimated with descriptive statistics. Crude and adjusted associations between specific SSc clinical variables and pain were estimated with linear regression for the entire group and by SSc subtype. Of the patients, 484 (83%) reported pain (268 [46%] mild pain [NRS 1-4], 155 [27%] moderate pain [NRS 5-7], and 61 [10%] severe pain [NRS 8-10]). More frequent episodes of Raynaud's phenomenon, active ulcers, worse synovitis, and gastrointestinal (GI) symptoms were associated with pain in multivariate analysis adjusting for demographic variables, depressive symptoms, and comorbid conditions. Patients with dcSSc reported only slightly higher mean +/- SD pain than those with lcSSc (dcSSc 3.9 +/- 2.8 versus lcSSc 3.4 +/- 2.7; Hedges's g = 0.18, P = 0.05). Regression estimates did not differ significantly between SSc subsets. Pain symptoms were common in the present study of patients with SSc and were independently associated with more frequent episodes of Raynaud's phenomenon, active ulcers, worse synovitis, and GI symptoms. Subsetting by extent of skin involvement was only minimally related to pain severity and did not affect associations with clinical variables. More attention to pain and how to best manage it is needed in SSc.
Systemic sclerosis (SSc) affects multiple physical, psychological, and social domains and is asso... more Systemic sclerosis (SSc) affects multiple physical, psychological, and social domains and is associated with impaired health-related quality of life (HRQOL).We compared the HRQOL of SSc patients with individuals in the general population and patients with other common chronic diseases. HRQOL of SSc patients in the Canadian Scleroderma Research Group registry was measured using version 2 of the Medical Outcomes Trust Short Form-36 (SF-36). Results were compared to US general population norms and scores reported for patients with other common chronic diseases, namely heart disease, lung disease, hypertension, diabetes, and depression. SF-36 scores were available for 504 SSc patients (86% women, mean age 56 yrs, mean disease duration since onset of first non-Raynaud's manifestation of SSc 11 yrs). The greatest impairment in SF-36 subscale scores appeared to be in the physical functioning, general health, and role physical domains. SF-36 subscale and summary scores in SSc were significantly worse compared to US general population norms for women of similar ages, except for mental health and mental component summary score, which were not significantly different, and were generally comparable to or worse than the scores of patients with other common chronic conditions. HRQOL of patients with SSc is significantly impaired compared to that of the general population and is comparable to or worse than that of patients with other common chronic conditions.
Systemic sclerosis (SSc) is a multisystem disease associated with significant morbidity and incre... more Systemic sclerosis (SSc) is a multisystem disease associated with significant morbidity and increased mortality. Little is known about nutritional status in SSc. We investigated the prevalence and demographic and clinical correlates of nutritional status in a large cohort of patients with SSc. This was a cross-sectional multicenter study of patients (n = 586) from the Canadian Scleroderma Research Group Registry. Patients were assessed with detailed clinical histories, medical examinations, and self-administered questionnaires. The primary outcome was risk for malnutrition using the "malnutrition universal screening tool" (MUST). Multiple logistic regression was used to assess the relationship between selected demographic and clinical variables and MUST categories. Of the 586 patients in the study, MUST scores revealed that almost 18% were at high risk for malnutrition. The significant correlates of high malnutrition risk included the number of gastrointestinal (GI) complaints, disease duration, diffuse disease, physician global assessment of disease severity, hemoglobin, oral aperture, abdominal distension on physical examination, and physician-assessed possible malabsorption. Among 14 GI symptoms, only poor appetite and lack of a history of abdominal swelling and bloating predict MUST. These factors accounted for 24% of the variance in MUST scores. The risk for malnutrition in SSc is moderate and is associated with shorter disease duration, markers of GI involvement, and disease severity. Patients with SSc should be screened for malnutrition, and potential underlying causes assessed and treated when possible.
To determine the validity of the World Health Organization Disability Assessment Schedule II (WHO... more To determine the validity of the World Health Organization Disability Assessment Schedule II (WHODAS II) in systemic sclerosis (SSc). Patients enrolled in the Canadian Scleroderma Research Group registry participated in a standardized evaluation and completed the WHODAS II. Criterion validity was assessed by comparing the WHODAS II with the Medical Outcomes Study Short Form 36 (SF-36), construct validity was assessed by examining how it relates to common measures of outcome in SSc, and discriminative validity was assessed by examining how it distinguishes patients with more severe disease from those with less severe disease. A total of 402 patients with SSc were included (mean +/- SD age 55 +/- 13 years, 87% women, mean +/- SD disease duration 11 +/- 9 years). The mean +/- SD WHODAS II score was 24.6 +/- 17.4, and the greatest impairments were in life activities and mobility. There were moderate to good correlations between the WHODAS II and the SF-36 Physical Component Summary score (r = -0.44), the SF-36 Mental Component Summary score (r = -0.41), and measures of function (r = 0.54), depression (r = 0.44), pain (r = 0.40), and fatigue (r = -0.49, P < 0.0001 for all). The WHODAS II was able to consistently distinguish patients with milder disease from those with more severe disease. The WHODAS II had good psychometric properties in patients with SSc and should be considered a valid measure of health-related quality of life in SSc.
To identify the clinical characteristics of systemic sclerosis (SSc) that best correlate with the... more To identify the clinical characteristics of systemic sclerosis (SSc) that best correlate with the health-related quality of life (HRQOL) of patients with SSc, using the World Health Organization Disability Assessment Schedule II (WHODAS II) as the measure of HRQOL. A cross-sectional, multicenter study of 337 patients from the Canadian Scleroderma Research Group Registry was conducted. Patients were assessed through detailed clinical histories, medical examination, and the WHODAS II. Hierarchical multiple linear regression was used to assess the relationship between selected clinical variables and HRQOL. The mean WHODAS II score was 23.7 (range 0-100), with the greatest impairments seen in the subscales measuring life activities, mobility, and participation in society. In multivariate analysis, significant predictors of the WHODAS II were skin scores, shortness of breath, number of gastrointestinal problems, fatigue, pain, and depression. The final model explained 61% of the variance in the WHODAS II scores. The clinical characteristics identified in this study as significant correlates of HRQOL in SSc should each be targets of intervention in order to improve the HRQOL of patients with this disease.
Clinical Orthopaedics and Related Research, Jan 1, 2007
We created the McGill Range of Motion Index (McROMI) to allow us to ascribe a score to global lim... more We created the McGill Range of Motion Index (McROMI) to allow us to ascribe a score to global limited range of motion (ROM) in patients with polyarthritis. Our goal was to have an easy-to-use index that required only visual estimation of ROM and could be performed by allied health professionals with limited training. The index was created with a range of motion ranking technique involving rheumatologists at McGill University and its validity was tested in patients with early inflammatory arthritis in the McGill Early Arthritis Registry. We hypothesized a valid index would correlate with various process and outcome measures. We found correlations between the McROMI and function (Health Assessment Questionnaire), Health Related Quality of Life (SF-36), pain, a global assessment of inflammatory disease activity (DAS28), and the number of tender and swollen joints. The McROMI demonstrates good validity as a measure of ROM in early inflammatory arthritis. It will prove useful in future research as a means of controlling for ROM as a confounder of various outcomes and in studies of therapeutic maneuvers to improve ROM.
Uploads