A systematic literature review on initiatives to involve children and adolescents in evaluating their hospitalization experience.

Background: Despite patient experience being an important topic in healthcare management, most research does not concentrate on initiatives targeted to patients experiencing vulnerabilities, for whom it is challenging to contribute to the processes of feedback collection. In healthcare, children and adolescents can be considered a group of patients experiencing vulnerability, particularly during a sensitive time such as hospitalization. The aim is to provide an overview of the research on patient experience collection initiatives used by healthcare service providers to facilitate children and adolescents' involvement in the evaluation of their hospitalisation experience.

Prevalence, incidence, and mortality of inflammatory bowel disease in the Netherlands: development and external validation of machine learning models.

Background And Aims: Large registries are promising tools to study the epidemiology of inflammatory bowel disease (IBD). We aimed to develop and validate machine learning models to identify IBD cases in administrative data, aiming to determine the prevalence, incidence, and mortality of IBD in the Netherlands.

Methods: We developed machine learning models for administrative data to identify IBD cases and classify them on subtype and incidence year.

Value-based healthcare from a military health system perspective: a systematic review.

Objectives: The aim of this systematic review was to provide an overview of value-based healthcare (VBHC) strategies and/or components within military medicine. For this purpose, the extent to which VBHC has been applied within a military health system (MHS), with emphasis on military trauma care was assessed.

Design: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Validity of the self-administered comorbidity questionnaire in patients with inflammatory bowel disease.

Background: The International Consortium for Health Outcomes Measurement has selected the self-administered comorbidity questionnaire (SCQ) to adjust case-mix when comparing outcomes of inflammatory bowel disease (IBD) treatment between healthcare providers. However, the SCQ has not been validated for use in IBD patients.

Objectives: We assessed the validity of the SCQ for measuring comorbidities in IBD patients.

Physical therapists' perspectives of patient values and their place in clinical practice: a qualitative study.

Background: In physical therapy practice patients and therapists exchange their perspectives on musculoskeletal health problems and their meaning for both of them. However, literature indicates that physical therapists find it difficult to enquire about the patients' values during clinical encounters.

Objectives: The aim of this study was to gain deeper insight into the perspectives of physical therapists about patient values.

Factors Influencing the Introduction of Value-Based Payment in Integrated Stroke Care: .

Background: To address issues related to suboptimal insight in outcomes, fragmentation, and increasing costs, stakeholders are experimenting with value-based payment (VBP) models, aiming to facilitate high-value integrated care. However, insight in how, why and under what circumstances such models can be successful is limited. Drawing upon realist evaluation principles, this study identifies context factors and associated mechanisms influencing the introduction of VBP in stroke care.

Value of Including the Children's Experience for Improving Their Rights During Hospitalization: Protocol for the VoiCEs Project.

Background: Users' feedback is a key asset for organizations that want to improve their services. Studying how organizations are enabling their users to participate in evaluation activities is particularly important, especially when there are vulnerable or disadvantaged people, and the services to be evaluated can be life-changing. This is the case in the coassessment by pediatric patients experiencing hospital stay.

Women's experiences with using patient-reported outcome and experience measures in routine perinatal care in the Netherlands: a mixed-methods study.

Objectives: To gain insight into the experiences of women with completing and discussing patient-reported outcome measures (PROM) and patient-reported experience measures (PREM), and tailoring their care based on their outcomes.

Design: A mixed-methods prospective cohort study.

Setting: Seven obstetric care networks in the Netherlands that implemented a set of patient-centred outcome measures for pregnancy and childbirth (PCB set), published by the International Consortium for Health Outcomes Measurement.

Improving Outcome-Driven Care in Multiple Myeloma Using Patient-Reported Outcomes: A Qualitative Evaluation Study.

Background And Objective: Multiple myeloma is an incurable disease with a considerable illness and treatment burden, which negatively impacts patients' quality of life. This study aimed to evaluate the implementation of multiple myeloma care in five Dutch hospitals, related to the three objectives of outcome-driven care, which are defined as (1) providing information for shared decision making in individual patient care, (2) supporting the learning capacity of healthcare professionals and healthcare institutions through benchmarking and (3) developing outcome-driven and patient-centred contracting by health insurers.

Methods: In this qualitative study, semi-structured interviews about experiences with patient-reported outcomes were conducted with patients, healthcare professionals and other stakeholders 2 years after implementation.

Development of a standard set of PROs and generic PROMs for Dutch medical specialist care : Recommendations from the Outcome-Based Healthcare Program Working Group Generic PROMs.

Purpose: The added value of measuring patient-reported outcomes (PROs) for delivering patient-centered care and assessment of healthcare quality is increasingly evident. However, healthcare system wide data collection initiatives are hampered by the proliferation of patient-reported outcome measures (PROMs) and conflicting data collection standards. As part of a national initiative of the Dutch Ministry of Health, Welfare and Sport we developed a consensus-based standard set of generic PROs and PROMs to be implemented across Dutch medical specialist care.

Adverse Events in Pediatric Critical Care Nonsurvivors With a Low Predicted Mortality Risk: A Multicenter Case Control Study.

Objectives: Some patients with a low predicted mortality risk in the PICU die. The contribution of adverse events to mortality in this group is unknown. The aim of this study was to estimate the occurrence of adverse events in low-risk nonsurvivors (LN), compared with low-risk survivors (LS) and high-risk PICU survivors and nonsurvivors, and the contribution of adverse events to mortality.

Group A streptococcal disease in paediatric inpatients: a European perspective.

Unlabelled: Group A streptococcal (GAS) disease shows increasing incidence worldwide. We characterised children admitted with GAS infection to European hospitals and studied risk factors for severity and disability. This is a prospective, multicentre, cohort study (embedded in EUCLIDS and the Swiss Pediatric Sepsis Study) including 320 children, aged 1 month to 18 years, admitted with GAS infection to 41 hospitals in 6 European countries from 2012 to 2016.

Hemostasis Proteins in Invasive Meningococcal and Nonmeningococcal Infections: A Prospective Multicenter Study.

Objectives: We aimed to describe the variation of hemostasis proteins in children with bacterial infections due to different pathogens ( Neisseria meningitidis, Streptococcus pneumoniae, Staphylococcus aureus , and group A streptococcus [GAS]) and to study hemostasis proteins in relation to mortality.

Design: Preplanned analysis in prospective cohort study.

Setting: Hospitals in five European countries (Austria, The Netherlands, Spain, Switzerland, and the United Kingdom).

Variation in CFHR3 determines susceptibility to meningococcal disease by controlling factor H concentrations.

Neisseria meningitidis protects itself from complement-mediated killing by binding complement factor H (FH). Previous studies associated susceptibility to meningococcal disease (MD) with variation in CFH, but the causal variants and underlying mechanism remained unknown. Here we attempted to define the association more accurately by sequencing the CFH-CFHR locus and imputing missing genotypes in previously obtained GWAS datasets of MD-affected individuals of European ancestry and matched controls.

BREAST-Q Breast-Conserving Therapy Module: Normative Data from a Dutch Sample of 9059 Women.

Background: BREAST-Q, a patient-reported outcome measure for cosmetic and reconstructive breast surgery, is widely used in both clinical research and practice. The aim of this study was to acquire normative data of BREAST-Q's Breast-Conserving Therapy Module from a Dutch population sample and to compare it with existing normative BREAST-Q values.

Methods: Flyers with QR codes, WhatsApp, and one academic center's Facebook and LinkedIn platforms were used to direct participants to self-complete an online version of four domains of the preoperative BREAST-Q Breast-Conserving Therapy Module.

Patient-Reported Outcome and Experience Measures in Perinatal Care to Guide Clinical Practice: Prospective Observational Study.

Background: The International Consortium for Health Outcomes Measurement has published a set of patient-centered outcome measures for pregnancy and childbirth (PCB set), including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). To establish value-based pregnancy and childbirth care, the PCB set was implemented in the Netherlands, using the outcomes on the patient level for shared decision-making and on an aggregated level for quality improvement.

Objective: This study aims to report first outcomes, experiences, and practice insights of implementing the PCB set in clinical practice.

The Roadmap for Implementing Value-Based Healthcare in European University Hospitals-Consensus Report and Recommendations.

Objectives: Value-based healthcare (VBHC) aims at improving patient outcomes while optimizing the use of hospitals' resources among medical personnel, administrations, and support services through an evidence-based, collaborative approach. In this article, we present a blueprint for the implementation of VBHC in hospitals, based on our experience as members of the European University Hospital Alliance.

Methods: The European University Hospital Alliance is a consortium of 9 large hospitals in Europe and aims at increasing the quality and efficiency of care to ultimately drive better outcomes for patients.

Patient-reported outcomes in autosomal inherited bleeding disorders: A systematic literature review.

Aim: Currently, it is unknown which patient-reported outcomes are important for patients with autosomal inherited bleeding disorders. Therefore, the purpose of this study is to systematically review the available literature assessing patient-reported outcomes and their measurement methods in autosomal inherited bleeding disorders.

Methods: The Embase, Medline ALL, Web of Science Core Collection, Cochrane Central Register of Controlled Trails and Google Scholar databases were searched from inception until 14 August 2020.

Detectable A Disintegrin and Metalloproteinase With Thrombospondin Motifs-1 in Serum Is Associated With Adverse Outcome in Pediatric Sepsis.

Importance: A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 is hypothesized to play a role in the pathogenesis of invasive infection, but studies in sepsis are lacking.

Objectives: To study A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 protein level in pediatric sepsis and to study the association with outcome.

Design: Data from two prospective cohort studies.

A Standard Set of Value-Based Patient-Centered Outcomes and Measures of Overall Health in Adults.

Background: The definition of population-specific outcomes is an essential precondition for the implementation of value-based health care. We developed a minimum standard outcome set for overall adult health (OAH) to facilitate the implementation of value-based health care in tracking, comparing, and improving overall health care outcomes of adults across multiple conditions, which would be of particular relevance for primary care and public health populations.

Methods: The International Consortium for Health Outcomes Measurement (ICHOM) convened an international panel (patients, clinicians, and topic experts).