Room for improvement in non-pharmacological systemic sclerosis care?-a cross-sectional online survey of 650 patients

Background/ objective: To gain insight in the use of current systemic sclerosis (SSc) care provided by health professionals from the patient perspective. We focused on referral reasons, treatment goals, the alignment with unmet care needs, and outcome satisfaction. Methods: Dutch SSc patients from 13 participating rheumatology departments were invited to complete an online survey. Descriptive statistics were used to describe current use of non-pharmacological care and outcome satisfaction. Reasons for referral and treatment goals were encoded in International Classification of Function and Disability (ICF) terms. Results: We included 650 patients (mean (standard deviation [SD]) age, 59.4 (11.4) years. 50% had contact with a health professional in the past year; 76.3% since disease onset. Physiotherapists were the most frequently visited in the past year (40.0%), followed by dental hygienists (11.4%) and podiatrists (9.2%). The three most common referral reasons were pain, joint mobility and cardiovascular functions. Fatigue, Raynaud's phenomenon, physical limitations, reduced hand function and joint problems were mentioned by more than 25% of all respondents as unmet needs. The proportion of patients treated in the past year by a health professional who were satisfied with knowledge and expertise of their health professionals was 74.4%; 73% reported improved daily activities and better coping with complaints. However, 48.9% perceived that the collaboration between rheumatologist and health professional was never or only sometimes sufficient. Conclusion: Despite the high outcome satisfaction and good accessibility of health professionals, there are obstacles in the access to non-pharmacological care and communication barriers between health professionals and rheumatologists

Dutch Oncology COVID-19 consortium:Outcome of COVID-19 in patients with cancer in a nationwide cohort study

Aim of the study: Patients with cancer might have an increased risk for severe outcome of coronavirus disease 2019 (COVID-19). To identify risk factors associated with a worse outcome of COVID-19, a nationwide registry was developed for patients with cancer and COVID-19. Methods: This observational cohort study has been designed as a quality of care registry and is executed by the Dutch Oncology COVID-19 Consortium (DOCC), a nationwide collaboration of oncology physicians in the Netherlands. A questionnaire has been developed to collect pseudonymised patient data on patients' characteristics, cancer diagnosis and treatment. All patients with COVID-19 and a cancer diagnosis or treatment in the past 5 years are eligible. Results: Between March 27th and May 4th, 442 patients were registered. For this first analysis, 351 patients were included of whom 114 patients died. In multivariable analyses, age ≥65 years (p < 0.001), male gender (p = 0.035), prior or other malignancy (p = 0.045) and active diagnosis of haematological malignancy (p = 0.046) or lung cancer (p = 0.003) were independent risk factors for a fatal outcome of COVID-19. In a subgroup analysis of patients with active malignancy, the risk for a fatal outcome was mainly determined by tumour type (haematological malignancy or lung cancer) and age (≥65 years). Conclusion: The findings in this registry indicate that patients with a haematological malignancy or lung cancer have an increased risk of a worse outcome of COVID-19. During the ongoing COVID-19 pandemic, these vulnerable patients should avoid exposure to severe acute respiratory syndrome coronavirus 2, whereas treatment adjustments and prioritising vaccination, when available, should also be considered

Exercise-based cardiac rehabilitation in patients with chronic heart failure: a Dutch practice guideline

Contains fulltext : 155228.pdf (publisher's version ) (Open Access)RATIONALE: To improve the quality of exercise-based cardiac rehabilitation (CR) in patients with chronic heart failure (CHF) a practice guideline from the Dutch Royal Society for Physiotherapy (KNGF) has been developed. GUIDELINE DEVELOPMENT: A systematic literature search was performed to formulate conclusions on the efficacy of exercise-based intervention during all CR phases in patients with CHF. Evidence was graded (1-4) according the Dutch evidence-based guideline development criteria. CLINICAL AND RESEARCH RECOMMENDATIONS: Recommendations for exercise-based CR were formulated covering the following topics: mobilisation and treatment of pulmonary symptoms (if necessary) during the clinical phase, aerobic exercise, strength training (inspiratory muscle training and peripheral muscle training) and relaxation therapy during the outpatient CR phase, and adoption and monitoring training after outpatient CR. APPLICABILITY AND IMPLEMENTATION ISSUES: This guideline provides the physiotherapist with an evidence-based instrument to assist in clinical decision-making regarding patients with CHF. The implementation of the guideline in clinical practice needs further evaluation. CONCLUSION: This guideline outlines best practice standards for physiotherapists concerning exercise-based CR in CHF patients. Research is needed on strategies to improve monitoring and follow-up of the maintenance of a physical active lifestyle after supervised CR

The neurobiology of repetitive behavior: ...and men.

Item does not contain fulltextIn young, typically developing children, repetitive behavior similar to that in certain neuropsychiatric syndromes is common. Whereas this behavior is adaptive in typical development, in many disorders it forms a core component of symptoms and causes prominent impairment in the daily life of affected individuals. Understanding the neurobiological mechanisms involved repetitive behavior will improve our understanding of the pathogenesis of developmental neuropsychiatric disorders, stimulating novel approaches to these conditions. However, studies on the neurobiology of human repetitive behavior have often been limited to distinct conditions and generalization has been hindered by inconsistent terminology. In this paper, we synthesize the 'disorder-driven' literature, building on findings from fundamental animal research and translational models. These findings suggest a model for classifying repetitive behavior by its neuroanatomical correlates.1 januari 201

The neurobiology of repetitive behavior: of mice....

Item does not contain fulltextRepetitive and stereotyped behavior is a prominent element of both animal and human behavior. Similar behavior is seen across species, in diverse neuropsychiatric disorders and in key phases of typical development. This raises the question whether these similar classes of behavior are caused by similar neurobiological mechanisms or whether they are neurobiologically unique? In this paper we discuss fundamental animal research and translational models. Imbalances in corticostriatal function often result in repetitive behavior, where different classes of behavior appear to be supported by similar neural mechanisms. Although the exact nature of these imbalances are not yet fully understood, synthesizing the literature in this area provides a framework for studying the neurobiological systems involved in repetitive behavior.1 januari 201

Nutritional indicators for gastrointestinal symptoms in female runners: the 'Marikenloop study'

Contains fulltext : 136417.pdf (publisher's version ) (Open Access)OBJECTIVES: Among runners the reported prevalence of exercise-induced gastrointestinal (GI) symptoms is high (25%-83%). We aimed to investigate the prevalence of GI symptoms in women during a 5-10 km run in general and to explore the association between nutritional intakes and GI symptoms. SETTING: As part of the Marikenloop-study (a cohort study to identify predictor variables of running injuries), a cross-sectional questionnaire was distributed in interested runners of the '2013 Marikenloop'. PARTICIPANTS: 433 female runners filled in the questionnaire. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome measure was the frequency of running-related GI symptoms during running in general and during the last (training) run. Furthermore, dietary intake was determined before and during this run. Secondary outcome measures were several demographic and anthropometric variables. RESULTS: During running in general, 40% of the participants suffered from GI symptoms and during their last run, 49%. The GI symptoms side ache, flatulence, urge to defecate and regurgitation and/or belching were most commonly reported. Lower age (OR=0.98, 95% CI 0.96 to 1.00), minor running experience (OR=3.1, 95% CI 1.7 to 5.7), higher body mass index (OR=1.1, 95% CI 1.0 to 1.2), consuming carbohydrate-containing drinks during running (OR=10.5, 95% CI 1.4 to 80.3) and experiencing GI symptoms during running in general OR=5.0, 95% CI 3.2 to 7.8) significantly contributed to GI symptoms during the last run in the logistic regression analysis. In contrast, time of eating and carbohydrate-containing drinks consumed prior to the run were not related to GI symptoms. CONCLUSIONS: In conclusion, the current study confirms the high prevalence of GI symptoms in female runners. Several predictor variables contributed to the GI symptoms but more research is needed to specify the effects of prerunning eating and carbohydrate-containing drinks on GI symptoms during running. TRIAL REGISTRATION NUMBER: Marikenloop study 2013: 50-50310-98-156 (ZonMw)