Background: Patient-relevant health outcomes for persons with hemophilia should be identified and prioritized to optimize and individualize care for persons with hemophilia. Therefore, an... Show moreBackground: Patient-relevant health outcomes for persons with hemophilia should be identified and prioritized to optimize and individualize care for persons with hemophilia. Therefore, an international group of persons with hemophilia and multidisciplinary health care providers set out to identify a globally applicable standard set of health outcomes relevant to all individuals with hemophilia.Methods: A systematic literature search was performed to identify possible health outcomes and risk adjustment variables. Persons with hemophilia and multidisciplinary health care providers were involved in an iterative nominal consensus process to select the most important health outcomes and risk adjustment variables for persons with hemophilia. Recommendations were made for outcome measurement instruments.Results: Persons with hemophilia were defined as all men and women with an X-linked inherited bleeding disorder caused by a deficiency of coagulation factor VIII or IX with plasma activity levels <40 IU/dL. We recommend collecting the following 10 health outcomes at least annually, if applicable: (i) cure, (ii) impact of disease on life expectancy, (iii) ability to engage in normal daily activities, (iv) severe bleeding episodes, (v) number of days lost from school or work, (vi) chronic pain, (vii) disease and treatment complications, (viii) sustainability of physical functioning, (ix) social functioning, and (x) mental health. Validated clinical as well as patient-reported outcome measurement instruments were endorsed. Demographic factors, baseline clinical factors, and treatment factors were identified as risk-adjustment variables.Conclusion: A consensus-based international set of health outcomes relevant to all persons with hemophilia, and corresponding measurement instruments, was identified for use in clinical care to facilitate harmonized longitudinal monitoring and comparison of outcomes. Show less
Boom, V.E.A.; Kamp, L.T. van der; Zuilen, A.D. van; Ranitz, W.L. de; Bos, W.J.; Jellema, W.T.; ... ; Kaasjager, K. 2020
Introduction eConsultation in nephrology is an innovative way for general practitioners (GPs) to consult a nephrologist. Studies have shown that questions from GPs can be answered and intended... Show moreIntroduction eConsultation in nephrology is an innovative way for general practitioners (GPs) to consult a nephrologist. Studies have shown that questions from GPs can be answered and intended referrals can be avoided by eConsultation. However, follow-up data are lacking. The primary aim of this study was therefore to assess whether patients for whom a referral to the outpatient clinic of a medical specialist was avoided in the short term were not then referred for the same problem within one year after the eConsultation. Methods All eConsultations sent between June 2017 and April 2018 to seven nephrologists in three different hospitals in The Netherlands were included. Exclusion criteria were duplications and missing data on follow-up. Data were obtained from the eConsultation application forms and from GP medical records. Results A total of 173 eConsultations were included. Of the 32 patients for whom a referral was initially prevented, 91% (95% confidence interval 75-98) had not been referred to a specialist for the same problem within one year after the eConsultation. Discussion eConsultation in the field of nephrology can prevent referrals in the long term. It can therefore contribute to a more modern and efficient health-care system in which chronic care is provided by GPs in close proximity to patients, while specialist support is easily available and accessible through eConsultation when necessary. Show less
Background: Until the approval of dabigatran etexilate, treatment choices for stroke prevention in patients with atrial fibrillation (AF) were vitamin K antagonists (VKAs) or antiplatelet drugs.... Show moreBackground: Until the approval of dabigatran etexilate, treatment choices for stroke prevention in patients with atrial fibrillation (AF) were vitamin K antagonists (VKAs) or antiplatelet drugs. This analysis explored whether availability of non-vitamin K antagonist oral anticoagulants post-dabigatran approval was associated with changing treatment patterns in China.Methods: Global Registry on Long-Term Oral Antithrombotic Treatment in Patients with Atrial Fibrillation (GLORIA-AF) collected data on antithrombotic therapy choices for patients with newly diagnosed nonvalvular AF at risk for stroke. In China, enrollment in phase 1 (before dabigatran approval) and phase 2 (after dabigatran approval) occurred from 2011 to 2013 and 2013 to 2014, respectively. Analyses were restricted to sites within China that contributed patients to both phases. The weighted average of the site-specific results was estimated for standardization. Sensitivity analyses used multiple regression.Results: Thirteen sites participated in both phase 1 (419 patients) and phase 2 (276 patients), 76.1% and 16.0% were known to be at high risk for stroke (CHA(2)DS(2)-VASc >= 2) and bleeding (HAS-BLED >= 3); 55.5% were male. In phase 1, 16.7%, 61.6%, and 21.7% of patients were prescribed oral anticoagulants (OACs), antiplatelet agents, and no treatment, respectively. Respective proportions were 26.4%, 40.6%, and 33.0% in phase 2. The absolute increase in the site-standardized proportion of patients prescribed OACs after dabigatran availability was 9.9% (95% confidence interval [CI]: 3.7%-16.0%). There was a standardized 17.3% (95% CI: -24.3% to -10.4%) absolute decrease in antiplatelet agent use.Conclusions: There was an increase in OAC and decrease in antiplatelet agent prescription since dabigatran availability in China. However, a large proportion of AF patients at risk for stroke remained untreated. Show less
