Patient-reported outcome measures (PROMs) are patient-completed instruments that capture patient-perceived health status and well-being. PROMs measure disease impact and outcomes of care as... Show morePatient-reported outcome measures (PROMs) are patient-completed instruments that capture patient-perceived health status and well-being. PROMs measure disease impact and outcomes of care as reported by those who experience the disease. After pulmonary embolism or deep vein thrombosis, patients may face a broad spectrum of complications and long-term sequelae beyond the usual quality-of-care indicators of recurrent venous thromboembolism (VTE), bleeding complications, and survival. The full impact of VTE on individual patients can only be captured by assessing all relevant health outcomes from the patient’s perspective in addition to the traditionally recognized complications. Defining and measuring all important outcomes will help facilitate treatment tailored to the needs and preferences of patients and may improve health outcomes. The International Society on Thrombosis and Haemostasis Scientific and Standardization Committee Subcommittee on Predictive and Diagnostic Variables in Thrombotic Disease endorsed the International Consortium for Health Outcomes Measurement (ICHOM) VTE project on development of a standardized set of patient-centered outcome measures for patients with VTE. In this communication, the course and result of the project are summarized, and based on these findings, we propose recommendations for the use of PROMs during clinical follow-up of patients with VTE. We describe challenges to implementation of PROMs and explore barriers and enablers. Show less
Objective: Our aim was to study the importance of baseline BMI, smoking, and alcohol consumption (AC) for disease activity (DA) over 1 year in early axial spondyloarthritis (axSpA), stratified by... Show moreObjective: Our aim was to study the importance of baseline BMI, smoking, and alcohol consumption (AC) for disease activity (DA) over 1 year in early axial spondyloarthritis (axSpA), stratified by sex. Methods: In the SPondyloArthritis Caught Early cohort ( patients with chronic back pain onset at age < 45 yrs, with pain for >= 3 months and >= 2 yrs), the Ankylosing Spondylitis Disease Activity Score (ASDAS) was recorded at inclusion, 3, and 12 months. All patients included in the analysis had axSpA based on a high physician's level of confidence at baseline. Differences in ASDAS over 1 year by BMI (normal < 25 kg/m(2), overweight 25-29.9 kg/m(2), and obese >= 30 kg/m(2)), smoking history (never/previous/current), and AC (none, 0.1-2 units/week, 3-5 units/week, and >= 6 units/week) at baseline were estimated using mixed linear regression models. Results: There were 344 subjects (mean age of 30.3 yrs; 49.4% men). In women, obesity was associated with 0.60 (95% CI 0.28-0.91) higher ASDAS compared to normal BMI. In both sexes, AC tended to be associated with lower DA over 1 year, with a significant association only in women with the highest AC (mean difference of -0.55, 95% CI -1.05 to -0.04). Smoking was associated with higher ASDAS over 1 year compared to never smoking in both sexes, although the difference reached statistical significance only in female former smokers. Results were similar in multivariable analysis, adjusted for all lifestyle factors and other confounders. Conclusion: In early axSpA, BMI and smoking are associated with higher DA over 1 year, and AC with lower DA. The magnitude of the modest associations may differ between men and women. Show less
