Using Optimal Test Assembly Methods for Shortening Patientâ Reported Outcome Measures: Development and Validation of the Cochin Hand Function Scaleâ 6: A Scleroderma Patientâ Centered Intervention Network Cohort Study

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/134498/1/acr22893_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/134498/2/acr22893.pd

How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?

OBJECTIVES: To gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators. METHODS: An online questionnaire about healthcare setting, perceived quality of care (CQ index) and quality indicators, was sent to 2093 patients from 13 Dutch hospitals. RESULTS: Six hundred and fifty patients (mean age 59 years, 75% women, 32% limited cutaneous SSc, 20% diffuse cutaneous SSc) completed the questionnaire. Mean time to diagnosis was 4.3 years (s.d. 6.9) and was longer in women compared with men (4.8 (s.d. 7.3) vs 2.5 (s.d. 5.0) years). Treatment took place in a SSc expert centre for 58%, regional centre for 29% or in both for 39% of patients. Thirteen percent of patients was not aware of whether their hospital was specialized in SSc. The perceived quality of care was rated with a mean score of 3.2 (s.d. 0.5) (range 1.0-4.0). There were no relevant differences between expert and regional centres. The three prioritized process indicators were: good patient-physician interaction (80%), structural multidisciplinary collaboration (46%) and receiving treatment according to SSc guidelines (44%). Absence of disease progression (66%), organ involvement (33%) and digital ulcers (27%) were the three highest rated outcome indicators. CONCLUSION: The perceived quality of care evaluated in our study was fair to good. No differences between expert and regional centres were observed. Our prioritized process and outcome indicators can be added to indicators suggested by SSc experts in earlier studies and can be used to evaluate the quality of care in SSc

EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus and systemic sclerosis

Objective To develop evidence-based recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc). Methods A task force comprising 7 rheumatologists, 15 other healthcare professionals and 3 patients was established. Following a systematic literature review performed to inform the recommendations, statements were formulated, discussed during online meetings and graded based on risk of bias assessment, level of evidence (LoE) and strength of recommendation (SoR; scale AD , A comprising consistent LoE 1 studies, D comprising LoE 4 or inconsistent studies), following the European Alliance of Associations for Rheumatology standard operating procedure. Level of agreement (LoA; scale 0-10, 0 denoting complete disagreement, 10 denoting complete agreement) was determined for each statement through online voting. Results Four overarching principles and 12 recommendations were developed. These concerned common and disease-specific aspects of non-pharmacological management. SoR ranged from A to D. The mean LoA with the overarching principles and recommendations ranged from 8.4 to 9.7. Briefly, non-pharmacological management of SLE and SSc should be tailored, person-centred and participatory. It is not intended to preclude but rather complement pharmacotherapy. Patients should be offered education and support for physical exercise, smoking cessation and avoidance of cold exposure. Photoprotection and psychosocial interventions are important for SLE patients, while mouth and hand exercises are important in SSc. Conclusions The recommendations will guide healthcare professionals and patients towards a holistic and personalised management of SLE and SSc. Research and educational agendas were developed to address needs towards a higher evidence level, enhancement of clinician-patient communication and improved outcomes

Therapeutic Validity and Effectiveness of Preoperative Exercise on Functional Recovery after Joint Replacement: A Systematic Review and Meta-Analysis

Background: Our aim was to develop a rating scale to assess the therapeutic validity of therapeutic exercise programmes. By use of this rating scale we investigated the therapeutic validity of therapeutic exercise in patients awaiting primary total joint replacement (TJR). Finally, we studied the association between therapeutic validity of preoperative therapeutic exercise and its effectiveness in terms of postoperative functional recovery. Methods: (Quasi) randomised clinical trials on preoperative therapeutic exercise in adults awaiting TJR on postoperative recovery of functioning within three months after surgery were identified through database and reference screening. Two reviewers extracted data and assessed the risk of bias and therapeutic validity. Therapeutic validity of the interventions was assessed with a nine-itemed, expert-based rating scale (scores range from 0 to 9; score ≥6 reflecting therapeutic validity), developed in a four-round Delphi study. Effects were pooled using a random-effects model and meta-regression was used to study the influence of therapeutic validity. Results: Of the 7,492 articles retrieved, 12 studies (737 patients) were included. None of the included studies demonstrated therapeutic validity and two demonstrated low risk of bias. Therapeutic exercise was not associated with 1) observed functional recovery during the hospital stay (Standardised Mean Difference [SMD]: −1.19; 95%-confidence interval [CI], −2.46 to 0.08); 2) observed recovery within three months of surgery (SMD: −0.15; 95%-CI, −0.42 to 0.12); and 3) self-reported recovery within three months of surgery (SMD −0.07; 95%-CI, −0.35 to 0.21) compared with control participants. Meta-regression showed no statistically significant relationship between therapeutic validity and pooled-effects. Conclusion: Preoperative therapeutic exercise for TJR did not demonstrate beneficial effects on postoperative functional recovery. However, poor therapeutic validity of the therapeutic exercise programmes may have hampered potentially beneficial effects, since none of the studies met the predetermined quality criteria. Future review studies on therapeutic exercise should address therapeutic validity. (aut.ref.

Multi-ancestry GWAS of the electrocardiographic PR interval identifies 202 loci underlying cardiac conduction

The electrocardiographic PR interval reflects atrioventricular conduction, and is associated with conduction abnormalities, pacemaker implantation, atrial fibrillation (AF), and cardiovascular mortality. Here we report a multi-ancestry (N=293,051) genome-wide association meta-analysis for the PR interval, discovering 202 loci of which 141 have not previously been reported. Variants at identified loci increase the percentage of heritability explained, from 33.5% to 62.6%. We observe enrichment for cardiac muscle developmental/contractile and cytoskeletal genes, highlighting key regulation processes for atrioventricular conduction. Additionally, 8 loci not previously reported harbor genes underlying inherited arrhythmic syndromes and/or cardiomyopathies suggesting a role for these genes in cardiovascular pathology in the general population. We show that polygenic predisposition to PR interval duration is an endophenotype for cardiovascular disease, including distal conduction disease, AF, and atrioventricular pre-excitation. These findings advance our understanding of the polygenic basis of cardiac conduction, and the genetic relationship between PR interval duration and cardiovascular disease. On the electrocardiogram, the PR interval reflects conduction from the atria to ventricles and also serves as risk indicator of cardiovascular morbidity and mortality. Here, the authors perform genome-wide meta-analyses for PR interval in multiple ancestries and identify 141 previously unreported genetic loci.Peer reviewe

Genetic insights into resting heart rate and its role in cardiovascular disease

Resting heart rate is associated with cardiovascular diseases and mortality in observational and Mendelian randomization studies. The aims of this study are to extend the number of resting heart rate associated genetic variants and to obtain further insights in resting heart rate biology and its clinical consequences. A genome-wide meta-analysis of 100 studies in up to 835,465 individuals reveals 493 independent genetic variants in 352 loci, including 68 genetic variants outside previously identified resting heart rate associated loci. We prioritize 670 genes and in silico annotations point to their enrichment in cardiomyocytes and provide insights in their ECG signature. Two-sample Mendelian randomization analyses indicate that higher genetically predicted resting heart rate increases risk of dilated cardiomyopathy, but decreases risk of developing atrial fibrillation, ischemic stroke, and cardio-embolic stroke. We do not find evidence for a linear or non-linear genetic association between resting heart rate and all-cause mortality in contrast to our previous Mendelian randomization study. Systematic alteration of key differences between the current and previous Mendelian randomization study indicates that the most likely cause of the discrepancy between these studies arises from false positive findings in previous one-sample MR analyses caused by weak-instrument bias at lower P-value thresholds. The results extend our understanding of resting heart rate biology and give additional insights in its role in cardiovascular disease development

Longitudinal impact of joint pain comorbidity on quality of life and activity levels in knee osteoarthritis: data from the Osteoarthritis Initiative

Objectives. Joint pain comorbidity (JPC) is common in individuals with knee OA. This study investigates the longitudinal association between JPC and health-related quality of life (HRQoL) and physical activity levels in individuals with knee OA. Methods. Data from the progression cohort of the Osteoarthritis Initiative (n = 1233; age 61 years and 58% females) were analysed. JPC was considered present if individuals reported pain in three or more joint groups, including the knee joints. HRQoL was assessed using the Knee Injury and Osteoarthritis Outcome Score (KOOS) Quality of Life subscale, and self-reported physical activity was determined using the Physical Activity Scale for the Elderly (PASE). Generalized estimating equation (GEE) analyses were performed, adjusted for age, sex, duration of complaints, medical comorbidity, and physical and mental functioning. Results. Over the 4-year period, 32% of participants never reported JPC, whereas 12% always reported JPC. GEE modelling demonstrated that having JPC was negatively associated with HRQoL [regression coefficient β (95% CI) −3.57 (−4.69, −2.44)] and not associated with physical activity [−1.32 (−6.61, 3.98)]. Conclusion. Considering the impact of JPC on the HRQoL of individuals with knee OA, the assessment of JPC in individuals with knee OA might be a daily routine

The Dutch Lower Extremity Functional Scale was highly reliable, valid and responsive in individuals with hip/knee osteoarthritis: a validation study

BACKGROUND: The WOMAC is the most widely used self-report measure to evaluate physical functioning in hip or knee osteoarthritis, however its ability to discriminate pain and physical functioning (i.e. discriminate validity) has repeatedly been questioned. Little to no data is available on the discriminant validity of alternative questionnaires that measure the same construct, for instance the Hip and Knee Osteoarthritis Outcome Score (HOOS and KOOS, respectively) and the Lower Extremity Function Scale (LEFS). Therefore, we translated the LEFS to Dutch and studied its psychometric properties (i.e. validity, reliability and responsiveness). In addition, we assessed the discriminate validity of the LEFS, HOOS and KOOS. METHODS: After translation with a forward/backward protocol, 401 individuals with hip or knee osteoarthritis completed the LEFS, HOOS/KOOS, SF-36, Hospital Anxiety and Depression Scale and Checklist Individual Strength questionnaires. To assess reliability and responsiveness, a sample of 106 and 108 patients completed a comparable set of questionnaires within 3 weeks and 3 months, respectively. Feasibility, validity, reliability and responsiveness were evaluated. Discriminant validity of the LEFS, HOOS and KOOS was examined by contrasting the scales’ correlations with the physical functioning subscale of the SF-36 with the scales’ correlations with the bodily pain subscale of the SF-36. RESULTS: The Dutch version of the LEFS was feasible, had good internal consistency (0.96), good reliability (ICC = 0.86), good construct and discriminant validity, and showed no floor or ceiling effects. The minimal detectable change (MDC(90)) was ten points. Area under the receiver operating characteristic curve (AUC) analyses revealed good (AUC = 0.76) and fair (AUC = 0.63) responsiveness for the LEFS in improved and worsened patients, respectively. Discriminant validity for pain was apparent for the LEFS (p < 0.01), but not for the HOOS and KOOS (p = 0.21 and p = 0.20, respectively). CONCLUSIONS: Considering the LEFS’ good psychometric qualities and ability to discriminate between pain and functioning, we recommend the LEFS as the outcome measure of choice to assess self-reported physical functioning in individuals with hip or knee osteoarthritis

Ultrasonographic predictors for clinical and radiological progression in knee osteoarthritis after 2 years of follow-up

Objective. The aim of this study was to investigate the association between a set of US features and radiographic and clinical progression of knee OA after 2 years of follow-up.Methods. A total of 125 patients fulfilling ACR clinical criteria for knee OA underwent US examination of the most symptomatic knee. The US protocol included assessment of synovial hypertrophy, joint effusion, infrapatellar bursitis, Baker's cyst, medial meniscus protrusion and cartilage thickness. Clinical progression was defined using the inverse Osteoarthritis Research Society International responder criteria or progression to total knee replacement. Radiological progression was defined as a ≥2 point increase in Altman score or progression to total knee replacement. Regression analyses were performed with baseline ultrasonographic features as independent variables and progression (two separate models for clinical progression and radiographic progression) as the dependent variable.Results. A total of 31 (25%) patients fulfilled the criteria of clinical progression and 60 (48%) patients fulfilled the criteria of radiological progression. The presence of Baker's cyst showed a statistically significant association with clinical [odds ratio (OR) 3.07 (95% CI 1.21, 7.78)] as well as radiological [OR 2.84 (95% CI 1.17, 6.90)] progression. Synovial hypertrophy showed a weaker but consistent association with clinical as well as radiological progression [OR 2.11 (95% CI 0.80, 5.57)].Conclusion. We demonstrated a longitudinal association between Baker's cyst (and to a lesser extent synovial hypertrophy) at baseline and radiological and clinical progression after 2 years