Background While multiple studies have examined the cost of health care for one aspect of sickle cell disease care, few have focussed on the overall cost of comprehensive care for sickle cell... Show moreBackground While multiple studies have examined the cost of health care for one aspect of sickle cell disease care, few have focussed on the overall cost of comprehensive care for sickle cell disease. Methods We conducted a retrospective cohort study of children with sickle cell disease treated in a comprehensive care centre from 1 January 2015 to 31 December 2016. Health care utilisation of included patients was based upon data from two main sources. The clinical practice guideline was used to determine the expected resource use of routine comprehensive care (planned elective care), and the financial claims database was used to estimate real-world resource use associated with acute and inpatient care (additional care). Results A total of 125 children with sickle cell disease were analysed. Expenditures for these patients averaged euro5049 [standard deviation (SD) euro1634] per child per year. Total yearly costs per patient varied considerably, ranging from euro669 to euro84 010, and less than 15% of patients were responsible for 50% of the health care costs. The majority (37%) of costs was associated with inpatient hospital care, which increased by age group, 27% with diagnostics, 19% with treatment, 11% with outpatients' visits and 6% with emergency care. Conclusion We have described real-world resource use and expenditures for children with sickle cell disease in a European comprehensive care centre. It seems that costs of a comprehensive approach with effective management in the outpatient setting is favourable when compared to episodic health care. Show less
Laureij, L.T.; Been, J.V.; Lugtenberg, M.; Ernst-Smelt, H.E.; Franx, A.; Hazelzet, J.A.; ... ; PCB Outcome Set Study Grp Collabor 2020
Objective: The International Consortium for Health Outcomes Measurement developed the Pregnancy and Childbirth (PCB) outcome set to improve value-based perinatal care. This set contains clinician... Show moreObjective: The International Consortium for Health Outcomes Measurement developed the Pregnancy and Childbirth (PCB) outcome set to improve value-based perinatal care. This set contains clinician-reported outcomes and patient-reported outcomes. We validated the set for use in the Netherlands by exploring its applicability among all end-users prior to implementation.Methods: A mixed-methods design was applied. A survey was performed to assess patients (n = 142), professionals (n = 134) and administrators (n = 35) views on the PCB set. To further explore applicability, separate focus groups were held with representatives of each of these groups.Results: The majority of survey participants agreed that the PCB set contains the most important outcomes. Patient-reported experience measures were considered relevant by the majority of participants. Perceived relevance of patient-reported outcome measures varied. Main themes from the focus groups were content of the set, data collection timing, implementation (also IT and transparency), and quality-based governance.Conclusion: This study supports suitability of the PCB outcome set for implementation, evaluation of quality of care and shared decision making in perinatal care.Practice Implications: Implementation of the PCB set may change existing care pathways of perinatal care. Focus on transparency of outcomes is required in order to achieve quality-based governance with proper IT solutions. (C) 2019 The Authors. Published by Elsevier B.V. Show less
Rauwerdink, A.; Kasteleyn, M.J.; Haafkens, J.A.; Chavannes, N.H.; Schijven, M.P.; Venema-Taat, N.; ... ; Citrien Fund Program eHlth 2020
Purpose: In the era of value-based healthcare, one strives for the most optimal outcomes and experiences from the perspective of the patient. So, patient experiences have become a key quality... Show morePurpose: In the era of value-based healthcare, one strives for the most optimal outcomes and experiences from the perspective of the patient. So, patient experiences have become a key quality indicator for healthcare. While these are supposed to drive quality improvement (QI), their use and effectiveness for this purpose has been questioned. The aim of this systematic review was to provide insight into QI interventions used in a hospital setting and their effects on improving patient experiences, and possible barriers and promoters for QI work.Methods: Prisma guidelines were used to design this review. International academic literature was searched in Embase, Medline OvidSP, Web of Science, Cochrane Central, PubMed Publisher, Scopus, PsycInfo, and Google Scholar. In total, 3,289 studies were retrieved and independently screened by the first two authors for eligibility and methodological quality. Data was extracted on the study purpose, setting, design, targeted patient experience domains, QI strategies, results of QI, barriers, and promotors for QI.Results: Twenty-one pre-post intervention studies were included for review. The methodological quality of the included studies was assessed using a Critical Appraisal Skills Program (CASP) Tool. QI strategies used were staff education, patient education, audit and feedback, clinician reminders, organizational change, and policy change. Twenty studies reported improvement in patient experience, 14 studies of the 21 included studies reported statistical significance. Most studies (n=17) reported data-related barriers (eg, questionnaire quality), professional, and/or organizational barriers (eg, skepticism among staff), and 14 studies mentioned specific promoters (eg, engaging staff and patients) for QI.Conclusions: Several patient experience domains are targeted for QI using diverse strategies and methodological approaches. Most studies reported at least one improvement and also barriers and promoters that may influence QI work. Future research should address these barriers and promoters in order to enhance methodological quality and improve patient experiences. Show less
The pathogenesis of meningococcal infections involves activation of the complement system, proinflammatory and anti-inflammatory mediators, antimicrobial peptides, and apoptosis. We hypothesized... Show moreThe pathogenesis of meningococcal infections involves activation of the complement system, proinflammatory and anti-inflammatory mediators, antimicrobial peptides, and apoptosis. We hypothesized that variations in genes encoding these products are involved in the susceptibility to and severity of pediatric meningococcal infections. Polymorphisms in poly (adenosine diphosphate-ribose) polymerase (PARP), serine protease C1 inhibitor (C1INH), IL4, IL10 and IL1B, alpha-defensin 4, and beta-defensin 1 (DEFB1) were analyzed in two independent Caucasian case control cohorts from the United Kingdom and the Netherlands and in a family-based transmission disequilibrium test cohort from the UK. In the UK case control cohort, the DEFB1 -44 G/G homozygous genotype was overrepresented in patients with meningococcal disease compared with the G/C and C/C genotypes when combined (odds ratio, 1.57; 95% confidence interval, 1.12-2.20). The transmission disequilibrium test analysis did not confirm this, but did find an association and linkage of the IL4-524 and the C1INH 480 polymorphisms with susceptibility to meningococcal infection. Hematological failure was present more often in UK patients with the DEFB1 -44 G/G genotype compared with the C allele carriers (odds ratio, 2.17; 95% confidence interval, 1.22-3.85). Additional studies are necessary to elucidate the conflicting results obtained for the DEFB1, IL4, and C1INH polymorphisms and their role in susceptibility to and severity of meningococcal disease. Show less
