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ABSTRACT: Contractures and deformities of the hand are major factors in disability and reduced health-related quality of life in systemic sclerosis (SSc). Physical (PT) and occupational therapy (OT) have been emphasised to address impaired hand function, but little is known about the extent they are employed. The objective of this study was to determine the proportion of Canadian SSc patients with hand involvement who are referred to and use PT or OT services and factors associated with referral.
Participants were respondents to the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities who rated ≥1 of 5 hand problems (hand stiffness, difficulty making fist, difficulty holding objects, difficulty opening hand, difficulty with faucet) as occurring at least sometimes with moderate or higher impact. Patients indicated if their physicians recommended PT or OT and if they used these services. Multivariate logistic regression assessed independent predictors of PT or OT referral.
Of 317 patients with hand involvement, 90 (28%) reported PT or OT referral, but only 39 (12%) reported using these services. PT or OT referral was associated with more hand problems (odds ratio [OR]=1.24, 95% confidence interval [CI] 1.02-1.51, p=0.031) younger age (OR=0.96, 95% CI 0.94-0.99, p=0.004) and not being employed (OR=0.50, 95% CI 0.26-0.97, p=.0041).
Few SSc patients with hand involvement are referred to PT or OT, and even fewer use these services. High-quality randomised controlled trials of PT and OT interventions to improve hand function in SSc are needed.
Clinical and experimental rheumatology 05/2012; 30(4):574-7. · 2.15 Impact Factor
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Brett D Thombs,
Lisa R Jewett,
Shervin Assassi,
Murray Baron,
Susan J Bartlett,
Angela Costa Maia,
Ghassan El-Baalbaki,
Daniel E Furst,
Karen Gottesman,
Jennifer A Haythornthwaite, [......],
Maria E Suarez-Almazor,
Suzanne Taillefer,
Cornelia H van den Ende,
Erin Arthurs, Marielle Bassel,
Vanessa Delisle,
Katherine Milette,
Allison Leavens,
Ilya Razykov,
Dinesh Khanna
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ABSTRACT: Systemic sclerosis (SSc), or scleroderma, is a chronic multisystem autoimmune disorder characterised by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, kidneys, gastrointestinal tract, and heart. Because there is no cure, feasibly-implemented and easily accessible evidence-based interventions to improve health-related quality of life (HRQoL) are needed. Due to a lack of evidence, however, specific recommendations have not been made regarding non-pharmacological interventions (e.g. behavioural/psychological, educational, physical/occupational therapy) to improve HRQoL in SSc. The Scleroderma Patient-centred Intervention Network (SPIN) was recently organised to address this gap. SPIN is comprised of patient representatives, clinicians, and researchers from Canada, the USA, and Europe. The goal of SPIN, as described in this article, is to develop, test, and disseminate a set of accessible interventions designed to complement standard care in order to improve HRQoL outcomes in SSc.
Clinical and experimental rheumatology 12/2011; 30(2 Suppl 71):S23-9. · 2.15 Impact Factor
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ABSTRACT: Knowledge about the range of symptoms experienced by patients with SSc, and their impact on daily functioning is limited. The objective of the present study was to identify symptoms of SSc that patients rated as frequent and that highly impacted their ability to carry out daily activities.
A total of 464 persons with SSc responded to the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities, including questions regarding the frequency and impact of 69 SSc symptoms. Descriptive analyses were performed dichotomizing symptom frequencies as never or rarely vs sometimes, most of the time or always and symptom impact on daily activities as no or minimal impact vs moderate to severe impact.
The five highest rated symptoms in terms of frequency and moderate to severe impact on daily activities, respectively, were: fatigue (89 and 72%), RP (86 and 67%), hand stiffness (81 and 59%), joint pain (81 and 64%) and difficulty sleeping (76 and 59%). In addition to these symptoms, items related to decreased hand function (difficulty making a fist and difficulty holding objects) and pain (muscle pain and joint tenderness) were frequently endorsed and commonly associated with moderate to severe impact on daily activities.
This study confirmed the importance for quality of life of core symptoms of SSc, such as pain, fatigue and limitations in hand function. It also identified areas with very little research, such as sleep problems, that appear to play important roles in daily functioning, and that merit more focused study.
Rheumatology (Oxford, England) 12/2010; 50(4):762-7. · 4.24 Impact Factor
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ABSTRACT: To our knowledge, no studies have investigated the association of pruritus, which is present in almost half of patients with systemic sclerosis (SSc; scleroderma), with quality of life (QOL) and disability. The objective of this study was to investigate the association of pruritus with QOL and disability in SSc.
We performed a cross-sectional, multicenter study of 578 SSc patients ≥1 year post-enrollment in the Canadian Scleroderma Research Group Registry. Patients reported whether they experienced pruritus during the past month on most days and underwent clinical histories and medical examinations. QOL was measured using the mental and physical component summary scores of the Short Form 36, and disability was measured with the Health Assessment Questionnaire disability index. The association of pruritus with QOL and disability was estimated using linear regression, controlling for sociodemographic and disease variables.
A total of 248 patients (43%) reported pruritus on most days. Patients with pruritus had significantly worse mental (Hedges's g = -0.43; 95% confidence interval [95% CI] -0.59, -0.26) and physical function (Hedges's g = -0.51; 95% CI -0.68, -0.34) and greater disability (Hedges's g = 0.46; 95% CI 0.29, 0.63) than patients without pruritus. In multivariate analyses, controlling for age, sex, marital status, education, disease duration, skin score, number of tender joints, gastrointestinal symptoms, breathing problems, Raynaud's phenomenon, and finger ulcers, pruritus was independently associated with mental (P = 0.017) and physical function (P = 0.003), but not disability (P = 0.112).
Pruritus is common and associated with QOL in SSc. More attention to pruritus in SSc is needed, including its measurement, etiology, trajectory, and potential methods for intervention.
Arthritis care & research. 10/2010; 62(10):1489-95.
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ABSTRACT: Objective
To our knowledge, no studies have investigated the association of pruritus, which is present in almost half of patients with systemic sclerosis (SSc; scleroderma), with quality of life (QOL) and disability. The objective of this study was to investigate the association of pruritus with QOL and disability in SSc.Methods
We performed a cross-sectional, multicenter study of 578 SSc patients ≥1 year post–enrollment in the Canadian Scleroderma Research Group Registry. Patients reported whether they experienced pruritus during the past month on most days and underwent clinical histories and medical examinations. QOL was measured using the mental and physical component summary scores of the Short Form 36, and disability was measured with the Health Assessment Questionnaire disability index. The association of pruritus with QOL and disability was estimated using linear regression, controlling for sociodemographic and disease variables.ResultsA total of 248 patients (43%) reported pruritus on most days. Patients with pruritus had significantly worse mental (Hedges's g = −0.43; 95% confidence interval [95% CI] −0.59, −0.26) and physical function (Hedges's g = −0.51; 95% CI −0.68, −0.34) and greater disability (Hedges's g = 0.46; 95% CI 0.29, 0.63) than patients without pruritus. In multivariate analyses, controlling for age, sex, marital status, education, disease duration, skin score, number of tender joints, gastrointestinal symptoms, breathing problems, Raynaud's phenomenon, and finger ulcers, pruritus was independently associated with mental (P = 0.017) and physical function (P = 0.003), but not disability (P = 0.112).Conclusion
Pruritus is common and associated with QOL in SSc. More attention to pruritus in SSc is needed, including its measurement, etiology, trajectory, and potential methods for intervention.
Arthritis Care & Research. 09/2010; 62(10):1489 - 1495.
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ABSTRACT: In 2008, Leichsenring and Rabung performed a meta-analysis of 8 studies of longer-term psychodynamic psychotherapy (LTPP). The work was published in the Journal of the American Medical Association (vol. 300, pp 1551-1565), and they concluded that LTPP was more effective than shorter-term therapies.
Given that such claims have the potential to influence treatment decisions and policies, we re-examined the meta-analysis and the 8 studies.
We found a miscalculation of the effect sizes used to make key comparisons. Claims for the effectiveness of LTPP depended on a set of small, underpowered studies that were highly heterogeneous in terms of patients treated, interventions, comparison-control groups, and outcomes. LTPP was compared to 12 types of comparison-controls, including control groups that did not involve any psychotherapy, short-term psychodynamic psychotherapy, and unvalidated treatments. Additionally, the studies failed to protect against threats to bias, and had poor internal validity.
Overall, we found no evidence to support claims of superiority of LTPP over shorter-term methods of psychotherapy.
Psychotherapy and Psychosomatics 06/2010; 79(4):208-16. · 6.28 Impact Factor
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Arthritis care & research. 03/2010; 62(8):1200; author reply 1200-1.
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Brett D Thombs,
Wim van Lankveld, Marielle Bassel,
Murray Baron,
Robert Buzza,
Shirley Haslam,
Jennifer A Haythornthwaite,
Marie Hudson,
Lisa R Jewett,
Ruby Knafo, [......],
Vanessa L Malcarne,
Katherine Milette,
Sarosh J Motivala,
Evan G Newton,
Warren R Nielson,
Marion Pacy,
Ilya Razykov,
Orit Schieir,
Suzanne Taillefer,
Maureen Worron-Sauve
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ABSTRACT: OBJECTIVE:: There is relatively little research on important patient-reported outcomes that affect quality of life in systemic sclerosis (SSc) and even less research on psychological, behavioral, and educational intervention strategies. The objective was to review existing evidence and to develop a consensus research agenda for behavioral health and psychological research in SSc. METHODS:: An international panel of recognized experts in behavioral and psychological health in SSc, rheumatologists, patients, and patient advocates was convened to identify areas of concern for patients with SSc and to develop a research agenda. As part of this process, the PubMed and PsychInfo databases were searched from inception for the keywords "scleroderma" in conjunction with keywords related to each identified topic area. All relevant original and review articles were examined. RESULTS:: Key areas where behavioral health and psychological approaches may be useful to assess and improve quality of life in SSc include depression, fatigue, pain, pruritus, body image distress, and sexual function. Less researched areas that warrant attention include sleep, fear of disease progression and dependency, family and couples relationships, and healthcare factors. CONCLUSION:: Qualitative and quantitative studies are needed to (1) develop and evaluate assessment tools for SSc patient-reported outcomes; (2) assess potential causal and maintaining factors, as well as trajectories, of important problems faced by patients; and (3) develop and test psychological, behavioral, and educational interventions to reduce distress and increase overall well-being. Collaborative approaches that include multiple centers and that actively involve patients and patient advocates in the research process are needed.
Arthritis care & research. 03/2010; 62(8):1181-9.
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ABSTRACT: Objective
There are no studies of pruritus prevalence or clinical correlates in systemic sclerosis (SSc). The objectives of this study were to document the proportion of SSc patients with pruritus on most days, to determine when in the course of the disease pruritus is most prevalent, and to identify clinical correlates.Methods
We performed a cross-sectional, multicenter study of 400 SSc patients from the Canadian Scleroderma Research Group Registry ≥1 year after Registry enrollment. Patients indicated whether they experienced pruritus during the past month on most days and underwent clinical histories and medical examinations. Multiple logistic regression was used to assess the association between sociodemographic and clinical variables and pruritus.ResultsA total of 179 patients (45%) reported pruritus on most days, including 69% (11 of 16) among patients 1.0–1.9 years from onset of non-Raynaud's symptoms, 41% (38 of 93) for 2.0–4.9 years, 47% (44 of 94) for 5.0–9.9 years, 43% (60 of 140) for 10.0–19.9 years, and 46% (26 of 57) for ≥20 years. In post hoc analysis, patients 1.0–1.9 years from disease onset were significantly more likely to report pruritus (P = 0.049). Patients with pruritus had significantly more skin involvement (P = 0.029), more gastrointestinal (GI) symptoms (P < 0.001), worse breathing problems (P = 0.001), worse Raynaud's symptoms (P = 0.002), and more severe finger ulcers (P = 0.009). Only the number of GI symptoms predicted pruritus in multiple logistic regression analysis (odds ratio 1.25, 95% confidence interval 1.13–1.37; P < 0.001).Conclusion
Pruritus is common in SSc and is independently associated with GI symptoms. Focused research on sources of pruritus and its management in SSc is needed.
Arthritis & Rheumatism 11/2009; 61(12):1765 - 1770. · 7.87 Impact Factor
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ABSTRACT: There are no studies of pruritus prevalence or clinical correlates in systemic sclerosis (SSc). The objectives of this study were to document the proportion of SSc patients with pruritus on most days, to determine when in the course of the disease pruritus is most prevalent, and to identify clinical correlates.
We performed a cross-sectional, multicenter study of 400 SSc patients from the Canadian Scleroderma Research Group Registry > or =1 year after Registry enrollment. Patients indicated whether they experienced pruritus during the past month on most days and underwent clinical histories and medical examinations. Multiple logistic regression was used to assess the association between sociodemographic and clinical variables and pruritus.
A total of 179 patients (45%) reported pruritus on most days, including 69% (11 of 16) among patients 1.0-1.9 years from onset of non-Raynaud's symptoms, 41% (38 of 93) for 2.0-4.9 years, 47% (44 of 94) for 5.0-9.9 years, 43% (60 of 140) for 10.0-19.9 years, and 46% (26 of 57) for > or =20 years. In post hoc analysis, patients 1.0-1.9 years from disease onset were significantly more likely to report pruritus (P = 0.049). Patients with pruritus had significantly more skin involvement (P = 0.029), more gastrointestinal (GI) symptoms (P < 0.001), worse breathing problems (P = 0.001), worse Raynaud's symptoms (P = 0.002), and more severe finger ulcers (P = 0.009). Only the number of GI symptoms predicted pruritus in multiple logistic regression analysis (odds ratio 1.25, 95% confidence interval 1.13-1.37; P < 0.001).
Pruritus is common in SSc and is independently associated with GI symptoms. Focused research on sources of pruritus and its management in SSc is needed.
Arthritis & Rheumatism 11/2009; 61(12):1765-70. · 7.87 Impact Factor
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ABSTRACT: To assess fatigue levels and demographic, socioeconomic, disease, and psychosocial correlates of fatigue in patients with systemic sclerosis (SSc).
We conducted a cross-sectional, multicenter study of 659 patients with SSc from the Canadian Scleroderma Research Group Registry. Fatigue was assessed during annual Registry visits with the Short Form 36 (SF-36) health survey vitality subscale. Patients completed measures of depressive symptoms and pain and underwent clinical histories and medical examinations. Kendall's tau was used to assess bivariate association of sociodemographic, medical, and psychosocial variables with fatigue. Multivariable associations of demographic (step 1), socioeconomic (step 2), global disease (step 3), specific disease and lifestyle (step 4), and psychosocial (step 5) factors with fatigue were assessed using hierarchical multiple linear regression.
The mean +/- SD score of the patients on the SF-36 vitality subscale was 45.6 +/- 10.8, substantially lower (indicating more fatigue) than the mean +/- SD score for the Canadian general population (65.8 +/- 18.0). In multivariate analysis, higher fatigue was significantly associated with the number of medical comorbidities (standardized beta = -0.11, P = 0.004), breathing problems (standardized beta = -0.23, P < 0.001), the number of gastrointestinal (GI) symptoms (standardized beta = -0.27, P < 0.001), and current smoking (standardized beta = -0.08, P = 0.018). As a group, specific symptom and lifestyle variables predicted the most incremental variance in fatigue (R(2) = 21.6%, P < 0.001), despite being added to the model after demographic, socioeconomic, and global disease duration/severity indicators. Symptoms of depression (beta = -0.42) and pain (beta = -0.21) were also independently associated with fatigue (P < 0.001).
High levels of fatigue are common in patients with SSc and are independently associated with clinical variables, including number of comorbidities, breathing problems, GI symptoms, and smoking.
Arthritis & Rheumatism 07/2009; 61(7):966-73. · 7.87 Impact Factor
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JAMA The Journal of the American Medical Association 04/2009; 301(9):930; author reply 932-933. · 30.03 Impact Factor
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ABSTRACT: Comments on the original article, "The efficacy of psychodynamic psychotherapy," by J. Shedler (see record 2010-02208-012). Shedler declared unequivocally that "empirical evidence supports the efficacy of psychodynamic therapy" (p. 98). He did not mention any specific criticisms that have been made of evidence on psychodynamic psychotherapies or address possible distinctions between evidence for short-term versus long-term psychodynamic psychotherapies. Instead, he attributed dissenting views to biases in evidence dissemination and review, which he suggested are rooted in a "lingering distaste in the mental health professions professions for past psychoanalytic arrogance and authority" related to a "hierarchical medical establishment that denied training to non-MDs and adopted a dismissive stance toward research" (Shedler, 2010, p. 98). Shedler (2010) justified his blanket dismissal of criticisms of evidence supporting psychodynamic psychotherapy on the basis of several published meta-analyses. The validity of conclusions from metaanalyses depends on the quality of the evidence synthesized, the nature of the studies included, and the rigor of the statistical analyses employed. Many meta-analyses, however, are not performed rigorously, which can result in treatment efficacy estimates that obscure important intertrial differences and that are unlikely to be replicated in clinical practice.
American Psychologist 66(2):148-9; discussion 152-4. · 6.87 Impact Factor
