Experiences and attitudes of Dutch rheumatologists and oncologists with regard to their patients’ health-related Internet use

The objective of this study is to explore the experiences and attitudes of rheumatologists and oncologists with regard to their patients’ health-related Internet use. In addition, we explored how often physicians referred their patients to health-related Internet sites. We sent a questionnaire to all the rheumatologists and oncologists in the Netherlands. The questionnaire included questions concerning demographics, experiences with patients’ health-related Internet use, referral behavior, and attitudes to the consequences of patients’ health-related Internet use (for patients themselves, the physician-patient relationship and the health care). The response rate was 46% (N = 238). Of these respondents, 134 practiced as a rheumatologist and 104 as an oncologist. Almost all physicians encountered their patients raising information from the Internet during a consultation. They were not, however, confronted with their patients’ health-related Internet use on a daily basis. Physicians had a moderately positive attitude towards the consequences of patients’ health-related Internet use, the physician-patient relationship and the health care. Oncologists were significantly less positive than rheumatologists about the consequences of health-related Internet use. Most of the physicians had never (32%) or only sometimes (42%) referred a patient to a health-related Internet site. Most physicians (53%) found it difficult to stay up-to-date with reliable Internet sites for patients. Physicians are moderately positive about their patients’ health-related Internet use but only seldom refer them to relevant sites. Offering an up-to-date site with accredited websites for patients might help physicians refer their patients

Evaluation of a website providing information on regional health care services for patients with rheumatoid arthritis: an observational study

Studies on the effectiveness of information provision for patients with arthritis through the Internet are scarce. This study aimed to describe rheumatoid arthritis (RA) patients’ knowledge and information needs before and after launching a website providing information on regional health care services for patients with rheumatic conditions. The intervention consisted of a weekly updated website comprising practical information on regional health care services for patients with arthritis. In addition, patients were offered information leaflets and an information meeting. Before (T1) and 24 months after (T2) the website was launched, a random sample of 400 RA patients filled in a questionnaire regarding knowledge and information need (scores 0–18) about accessibility and contents of 18 regional health care services. Two hundred and fifty-one patients returned the questionnaire (response rate 63%) at T1 and 200 patients (50%) at T2, respectively, with 160 paired observations (112 females (70%), mean age 60.4 years (SD 9.9)). The total score for insufficient knowledge about contents decreased from 9.3 (SD 4.9) to 8.5 (SD 4.8; p = 0.03) and for accessibility from 8.6 (SD 4.7) to 8.4 (SD 4.9; p = 0.59). Total score for information need about contents decreased from 4.2 (SD 4.5) to 1.9 (SD 2.9; p < 0.01) and for accessibility from 3.6 (SD 4.5) to 1.4 (SD 2.4; p < 0.01) (paired t-tests)

Validation of a new test that assesses functional performance of the upper extremity and neck (FIT-HaNSA) in patients with shoulder pathology

<p>Abstract</p> <p>Background</p> <p>There is a lack of standardized tests that assess functional performance for sustained upper extremity activity. This study describes development of a new test for measuring functional performance of the upper extremity and neck and assesses reliability and concurrent validity in patients with shoulder pathology.</p> <p>Methods</p> <p>A series of developmental tests were conducted to develop a protocol for assessing upper extremity tasks that required multi-level movement and sustained elevation. Kinematics of movement were investigated to inform subtask structure. Tasks and test composition were refined to fit clinical applicability criteria and pilot tested on 5 patients awaiting surgery for shoulder impingement and age-sex matched controls. Test-retest reliability was assessed on 10 subjects. Then a cohort of patients with mild to moderate (n = 17) shoulder pathology and 19 controls (17 were age-sex matched to patients) were tested to further validate the Functional Impairment Test-Hand, and Neck/Shoulder/Arm (FIT-HaNSA) by comparing it to self-reported function and measured strength. The FIT-HaNSA, DASH and SPADI were tested on a single occasion. Impairments in isometric strength were measured using hand-held dynamometry. Discriminative validity was determined by comparing scores to those of age-sex matched controls (n = 34), using ANOVA. Pearson correlations between outcome measures (n = 41) were examined to establish criterion and convergent validity.</p> <p>Results</p> <p>A test protocol based on three five-minute subtasks, each either comprised of moving objects to waist-height shelves, eye-level shelves, or sustained manipulation of overhead nuts/bolts, was developed. Test scores for the latter 2 subtasks (or total scores) were different between controls as compared to either surgical-list patients with shoulder impingement or a variety of milder shoulder pathologies (p < 0.01). Test 1 correlated the highest with the DASH (r = -0.83), whereas Test 2 correlated highest with the SPADI (r = -0.76).</p> <p>Conclusion</p> <p>Initial data suggest the FIT-HaNSA provides valid assessment of impaired functional performance in patients with shoulder pathology. It discriminates between patients and controls, is related to self-reported function, and yet provides distinct information. Longitudinal testing is warranted.</p

Hand disease in scleroderma: a clinical correlate for chronic hand transplant rejection

Chronic rejection remains a potential long-term consequence of hand composite tissue allotransplantation (CTA). Scleroderma has already been proposed as a model for chronic facial allograft rejection based on potential parallels of observed progression of disease and pathophysiology course. This study proposes a similar model for how chronic rejection may manifest itself in the context of hand CTA through the functional and psychological assessment of patients with scleroderma, should it occur

Factors associated with quality of life in systemic sclerosis: a cross-sectional study

© 2019, The Author(s). Introduction: Systemic sclerosis (SSc) is a connective tissue disease characterized by progressive fibrosis of the skin and internal organs, leading to their failure and disturbances in the morphology and function of blood vessels. The disease affects people in different ways, and identifying how the difficulties and limitations are related to quality of life may contribute to designing helpful interventions. The aim of this study was to identify factors associated with quality of life in people with SSc. Methods: This was a cross-sectional study conducted in 11 rheumatic centres in Poland. Patients diagnosed with SSc were included. Quality of life was measured using the SSc Quality of Life Questionnaire (SScQoL). The following candidate factors were entered in preliminary multivariable analysis: age, place of residence, marital status, occupational status, disease type, disease duration, pain, fatigue, intestinal problems, breathing problems, Raynaud’s symptoms, finger ulcerations, disease severity, functional disability, anxiety and depression. Factors that achieved statistical significance at the 10% level were then entered into a final multivariable model. Factors achieving statistical significance at the 5% level in the final model were considered to be associated with quality of life in SSc. Results: In total, 231 participants were included. Mean age (SD) was 55.82 (12.55) years, disease duration 8.39 (8.18) years and 198 (85.7%) were women. Factors associated with quality of life in SSc were functional disability (β = 2.854, p < 0.001) and anxiety (β = 0.404, p < 0.001). This model with two factors (functional disability and anxiety) explained 56.7% of the variance in patients with diffuse SSc and 73.2% in those with localized SSc. Conclusions: Functional disability and anxiety are significantly associated with quality of life in SSc. Interventions aimed at improving either of these factors may contribute towards improving the quality of life of people with SSc

Stress and resilience in rheumatic diseases: a review and glimpse into the future

Item does not contain fulltextStress resilience factors, and interventions to ease stress and enhance resilience, are gaining increasing attention for the treatment of rheumatic conditions. This Review presents a digest of empirical work on the factors that determine the risk of adapting poorly to a rheumatic condition, and on the resilience factors that counteract such risks. We consider the types of stress-management and resilience treatments that are most effective in promoting the physical and psychological functioning of patients at risk of long-term adjustment problems. Prospective research shows that cognitive-behavioral and social risk and resilience factors predict the long-term physical and psychological functioning of patients with rheumatic conditions. Furthermore, validated screening instruments are becoming increasingly useful in clinical practice to identify and select patients at risk. Stress-management and resilience interventions offer promising ways to improve the long-term functioning of patients. These treatment methods might be especially useful when they are tailored to the specific risk and resilience factors of patients, and when they incorporate innovative approaches to the delivery of services, including internet applications such as eHealth, to increase efficiency and availability of treatments, and to optimize patient empowerment in rheumatic conditions