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Carla M Bastemeijer,1 Hileen Boosman,2 Linda Zandbelt,3 Reinier Timman,4 Dolf de Boer,5 Jan A Hazelzet1 1Department of Public Health, Erasmus University Medical Center, Rotterdam, the Netherlands; 2Department of Quality & Patient Safety, Leiden University Medical Center, Leiden, the Netherlands; 3Department of Clinical and Executive Support, Amsterdam University Medical Centers, Amsterdam, the Netherlands; 4Department of Psychiatry, Unit of Medical Psychology & Psychotherapy, Erasmus University Medical Center, Rotterdam, the Netherlands; 5Care from the Patient Perspective, Nivel, Utrecht, the NetherlandsCorrespondence: Carla M BastemeijerDepartment of Public Health, Erasmus University Medical Center, P.O. Box 2040, Rotterdam, CA 3000, the NetherlandsTel +31 612601805Email c.bastemeijer@erasmusmc.nlPurpose: Several patient-reported experience measures (PREMs) were developed through the years. These questionnaires are frequently found to be inappropriate for people with lower literacy levels. This paper describes the development of patient experience questionnaires for hospital patients with a wide range of literacy levels, while enabling the potential for quality improvement.Methods: Mixed methods were used to adapt Picker Institute patient experience questionnaires: selection of items and adaptation towards language level B1 (the language level of which patients can express their own opinion and describe experiences, events and expectations) by expert panels, usability tests with patients, analysis of psychometric properties and member checking. A theory-driven approach was followed for definitive enrolment of items, meaning that the items eligible for exclusion had been carefully reviewed by the expert team and representatives of a patient council before definitive exclusion.Results: A pilot study was performed in an University Medical Centre in the Netherlands among in- and outpatients after discharge. Two provisional questionnaires of 22 items, designed by an expert panel, were reduced towards a final selection of 14– 15 items. This led to two short-form questionnaires, called Patient Experience Monitor (PEM) Adult Inpatient and PEM Adult Outpatient. To illustrate, the results of the PEM Adult Outpatient questionnaire are presented.Conclusion: PEMs are short and valid questionnaires specifically developed to measure patient experiences of hospital patients with a wide range of literacy levels. Acceptance of the questionnaires for both lower and higher educated patients are confirmed by usability tests. The respondents of the pilot study represent both groups. The developed questionnaires should be seen as a dynamic entity and part of a continuous effort to evaluate and improve patient experiences. Future studies are needed to examine the usability of these new questionnaires for quality improvement.Keywords: patient experiences, quality in healthcare, patient centered care, PREM

Carla M Bastemeijer,1 Hileen Boosman,2 Hans van Ewijk,3 Lisanne M Verweij,4 Lennard Voogt,5 Jan A Hazelzet41MMT, Department of Public Health, Erasmus University Medical Center, Rotterdam, the Netherlands; 2Department of Quality & Patient Safety, Leiden University Medical Center, Leiden, the Netherlands; 3Department of Normative Professionalization, University of Humanistic Studies, Utrecht, the Netherlands; 4Department of Public Health, Erasmus University Medical Center, Rotterdam, the Netherlands; 5Department of Physical Therapy Studies, Rotterdam University of Applied Sciences, Rotterdam, the NetherlandsPurpose: 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.Keywords: PREM, value based healthcare, outcomes, quality indicators

OBJECTIVES: To assess the occurrence of a wide range of behavioural, emotional, and post-traumatic stress problems in children and adolescents, long term after septic shock caused by Neisseria meningitidis (MSS). DESIGN: This study included 6- to 17-year-old patients who survived MSS and were admitted to the PICU of the Medical Centre between 1988 and 2001. To assess behavioural, emotional, and post-traumatic stress problems, the Child Behaviour Checklist (CBCL), the Teacher's Report Form (TRF), and the Youth Self-Report (YSR) were used. METHODS: Parents of 89 MSS children, aged 6-17 years, completed the CBCL. Teachers of 65 same-aged MSS children completed the TRF, and 45 11- to 17-year-old MSS children completed the YSR. These data were compared with those from the normative reference groups. RESULTS: Overall, the proportions of MSS children scoring in the deviant range for problem behaviour were comparable to the proportions in the reference groups, according to parents', teachers', and self-reports. As to the level of emotional and behavioural problems, mothers of the MSS children reported more somatic complaints regarding their children in comparison with the reference groups. Severity of illness was not a significant predictor of behavioural, emotional, and post-traumatic stress problems. Age at the time of illness was a significant predictor of behavioural, emotional, and post-traumatic stress problems in MSS children, indicating that the younger the child at the time of illness, the more problems were reported by parents at follow-up. CONCLUSION: Overall, the results showed long-term behavioural, emotional, and post-traumatic stress outcomes for MSS children, which were comparable to those in the general population. [ABSTRACT FROM AUTHOR]

Objective: To investigate the effect of one single bolus of etomidate used for intubation on adrenal function in children with meningococcal sepsis.Design: Retrospective study conducted between 1997 and 2004.Setting: University-affiliated paediatric intensive care unit (PICU).Patients and Participants: Sixty children admitted to the PICU with meningococcal sepsis, not treated with steroids.Interventions: Adrenal hormone concentrations were determined as soon as possible after PICU admission, and after 12h and 24h. To assess disease severity, PRISM score and selected laboratory parameters were determined.Measurements and Main Results: On admission, before blood was drawn, 23 children had been intubated with etomidate, 8 without etomidate and 29 were not intubated. Children who were intubated had significantly higher disease severity parameters than those not intubated, whereas none of these parameters significantly differed between children intubated with or without etomidate. Children who received etomidate had significantly lower cortisol, higher ACTH and higher 11-deoxycortisol levels than those who did not receive etomidate. Arterial glucose levels were significantly lower in children who were intubated with etomidate than in non-intubated children. When children were intubated with etomidate, cortisol levels were 3.2 times lower for comparable 11-deoxycortisol levels. Eight children died, seven of whom had received etomidate. Within 24h cortisol/ACTH and cortisol/11-deoxycortisol ratios increased significantly in children who received etomidate, but not in children who did not, resulting in comparable cortisol/ACTH ratios with still significantly lowered cortisol/11-deoxycortisol ratios 24h after admission.Conclusions: Our data imply that even one single bolus of etomidate negatively influences adrenal function for at least 24h. It might therefore increase risk of death. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the inventory for initial treatment of critically ill children.Design: Prospective study.Setting: Paediatric emergency settings in 15 major district general hospitals.Methods: Using an "expert opinion" created by paediatric intensivists, all hospitals were visited twice to check the inventory. Firstly, to examine the initial site of emergency care for children coming from outside the hospital. Secondly, to visit other emergency sites. A total score below 75% of the optimum was considered as not optimally equipped.Main Results: Equipment to meet "respiratory problems" was considered by the experts as most essential. Seventy five per cent of all emergency sites scored below 75% (4 of 11 paediatric departments, 1 of 15 emergency rooms. The emergency room was in all aspects significantly better equipped than the paediatric department. Major differences and variations in the inventory were identified between all hospitals.Conclusions: Emergency rooms are better equipped to meet the needs of critically ill paediatric patients coming from outside the hospital than the paediatric departments. Paediatricians involved in the treatment of children who become critically ill during their stay in the hospital (the "indoor" patients), have less equipment and medication on the paediatric department at their disposal than on their emergency room. Obviously, emergency care on the paediatric wards should be equipped at the same level as in the emergency room because for both locations the "golden hour" is critically important in final outcome. [ABSTRACT FROM AUTHOR]

Objective: In 2003, critical care and infectious disease experts representing 11 international organizations developed management guidelines for other supportive therapies in sepsis that would be of practical use for the bedside clinician, under the auspices of the Surviving Sepsis Campaign, an international effort to increase awareness and to improve outcome in severe sepsis.Design and Methods: The process included a modified Delphi method, a consensus conference, several subsequent smaller meetings of subgroups and key individuals, teleconferences, and electronic-based discussion among subgroups and among the entire committee. Pediatric representatives attended the various section meetings and workshops to contrast adult and pediatric management. These are published here as pediatric considerations.Conclusion: Pediatric considerations included a more likely need for intubation due to low functional residual capacity, more difficult intravenous access, fluid resuscitation based on weight with 40-60 mL kg or higher needed, decreased cardiac output and increased systemic vascular resistance as the most common hemodynamic profile, greater use of physical examination therapeutic endpoints, the unsettled issue of high-dose steroids for therapy of septic shock, and greater risk of hypoglycemia with aggressive glucose control. [ABSTRACT FROM AUTHOR]

Background: Data on variation in outcomes and costs of the treatment of inflammatory bowel disease (IBD) can be used to identify areas for cost and quality improvement. It can also help healthcare providers learn from each other and strive for equity in care. We aimed to assess the variation in outcomes and costs of IBD care between hospitals., Methods: We conducted a 12-month cohort study in 8 hospitals in the Netherlands. Patients with IBD who were treated with biologics and new small molecules were included. The percentage of variation in outcomes (following the International Consortium for Health Outcomes Measurement standard set) and costs attributable to the treating hospital were analyzed with intraclass correlation coefficients (ICCs) from case mix-adjusted (generalized) linear mixed models., Results: We included 1010 patients (median age 45 years, 55% female). Clinicians reported high remission rates (83%), while patient-reported rates were lower (40%). During the 12-month follow-up, 5.2% of patients used prednisolone for more than 3 months. Hospital costs (outpatient, inpatient, and medication costs) were substantial (median: €8323 per 6 months), mainly attributed to advanced therapies (€6611). Most of the variation in outcomes and costs among patients could not be attributed to the treating hospitals, with ICCs typically between 0% and 2%. Instead, patient-level characteristics, often with ICCs above 50%, accounted for these variations., Conclusions: Variation in outcomes and costs cannot be used to differentiate between hospitals for quality of care. Future quality improvement initiatives should look at differences in structure and process measures of care and implement patient-level interventions to improve quality of IBD care., Trial Registration Number: NL8276., (© 2024 Crohn’s & Colitis Foundation. Published by Oxford University Press on behalf of Crohn’s & Colitis Foundation.)

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., Data Sources: Medline, Embase, Web of Science CC and the Cochrane CRCT databases were searched from 1946 to present for VBHC strategies and/or components and military settings, including associated keywords., Eligibility Criteria for Selecting Studies: We included observational and trial studies focused on the presence of VBHC components and/or system, and the presence of acute/trauma operational care or definitive postoperational care regarding combat injured service members. The included articles were classified into injury-related and system-level studies., Data Extraction and Synthesis: Two independent reviewers used standardised methods to search, screen and code included studies. For quality assessment, the Mixed Methods Appraisal Tool version 2018 was used., Results: A total of 3241 publications were screened, and 18 were included for data extraction. 15 studies focused on (military) medical trauma-related conditions (injury groups), and 3 studies focused on an MHS approach. Four articles contained the two VBHC components ('creating an integrated practice unit' and 'measuring outcomes and costs for every patient') considered the basis for successful implementation. The 'outcomes and costs' and 'patient-centred care' components were most prevalent as respectively mentioned in 17 and 8 included studies., Conclusion: The systematic review showed the application of VBHC components in military medicine, although use of standard VBHC terminology is not consistently applied. This study suggests that implementing VBHC as a concept in military healthcare, could enhance benchmarking to provide insight in health outcomes (both clinically and patient-reported), and overall quality of care., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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., Design: Cohort study., Methods: We assessed the criterion validity of the SCQ for IBD patients by comparing patient-reported and clinician-reported comorbidities (as noted in the electronic health record) of the 13 diseases of the SCQ using Cohen's kappa. Construct validity was assessed using the Spearman correlation coefficient between the SCQ and the Charlson Comorbidity Index (CCI), clinician-reported SCQ, quality of life, IBD-related healthcare and productivity costs, prevalence of disability, and IBD disease activity. We assessed responsiveness by correlating changes in the SCQ with changes in healthcare costs, productivity costs, quality of life, and disease activity after 15 months., Results: We included 613 patients. At least fair agreement (κ > 0.20) was found for most comorbidities, but the agreement was slight (κ < 0.20) for stomach disease [κ = 0.19, 95% CI (-0.03; 0.41)], blood disease [κ = 0.02, 95% CI (-0.06; 0.11)], and back pain [κ = 0.18, 95% CI (0.11; 0.25)]. Correlations were found between the SCQ and the clinician-reported SCQ [ρ = 0.60, 95% CI (0.55; 0.66)], CCI [ρ = 0.39, 95% CI (0.31; 0.45)], the prevalence of disability [ρ = 0.23, 95% CI (0.15; 0.32)], and quality of life [ρ = -0.30, 95% CI (-0.37; -0.22)], but not between the SCQ and healthcare or productivity costs or disease activity (|ρ| ⩽ 0.2). A change in the SCQ after 15 months was not correlated with a change in any of the outcomes., Conclusion: The SCQ is a valid tool for measuring comorbidity in IBD patients, but face and content validity should be improved before being used to correct case-mix differences., Competing Interests: RCAvL has nothing to disclose. ASH has nothing to disclose. NvL has nothing to disclose. JAH has nothing to disclose. CJvdW has received research grants from ZonMW, Falk, and Pfizer; has received consulting fees from Janssen, Galapagos, and Pfizer; and has received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from Ferring and AbbVie, all outside the submitted work. RLW reports personal fees from Ferring, Pfizer, Galapagos, AbbVie, and Janssen outside the submitted work. DvN reports personal fees from Janssen, Takeda, AbbVie, and Galapagos outside the submitted work., (© The Author(s), 2023.)

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., Design: Explorative qualitative focus group study., Method: Twenty-three physical therapists were interviewed in the Netherlands from March to May 2021. Two researchers analyzed the interviews and derived relevant codes. After an iterative process of comparing, analyzing, conceptualizing and discussing the codes, themes were identified through a thematic framework, illustrated with meaningful quotes., Results: Three major themes were identified: Humane, Tacit, and Responsive. It appeared that patient values play unconsciously a major role in daily practice and are associated with humanity, not technical or procedural aspects of the encounter. Responsive denotes that all values require interaction in which aligning with the individual patient forms the basis of treatment. Barriers for being responsive are identified as subthemes: Choices, Trust, Diverseness, and Boundaries., Conclusion: The concept of patient values appeared to be implicit. The professional intuitively attunes as a fellow human being to values and expectations of the individual patient. This study contributes to finding a balance and mutual reinforcement of implicit and explicit knowledge. With all found experiences and insights the concept of patient values became more explicit in physical therapy to create a framework for education and research in the future., Competing Interests: Conflicts of interest The authors declare no conflicts of interest., (Copyright © 2023 The Author(s). Publicado por Elsevier España, S.L.U. All rights reserved.)

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., Methods: Existing knowledge on context-mechanism relations impacting the introduction of VBP programs (in real-world settings) was summarized from literature. These relations were then tested, refined, and expanded based on a case study comprising interviews with representatives from organizations involved in the introduction of a VBP model for integrated stroke care in Rotterdam, the Netherlands., Results: Facilitating factors were pre-existing trust-based relations, shared dissatisfaction with the status quo, regulatory compatibility and simplicity of the payment contract, gradual introduction of down-side risk for providers, and involvement of a trusted third party for data management. Yet to be addressed barriers included friction between short- and long-term goals within and among organizations, unwillingness to forgo professional and organizational autonomy, discontinuity in resources, and limited access to real-time data for improving care delivery processes., Conclusions: Successful payment and delivery system reform require long-term commitment from all stakeholders stretching beyond the mere introduction of new models. Careful consideration of creating the 'right' contextual circumstances remains crucially important, which includes willingness among all involved providers to bear shared financial and clinical responsibility for the entire care chain, regardless of where care is provided., Competing Interests: The authors have no competing interests to declare., (Copyright: © 2023 The Author(s).)

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. The international literature reports a few attempts and several challenges in systematically collecting and using the pediatric patient experience with respect to hospitalization, to undertake quality improvement actions., Objective: This paper describes the research protocol of a European project intended to develop and implement a systematic pediatric patient-reported experience measures (PREMs) observatory that will be shared by 4 European children's hospitals in Finland, Italy, Latvia, and the Netherlands., Methods: The VoiCEs (Value of including the Children's Experience for improving their rightS during hospitalization) project uses a participatory action research approach, based on a mixture of qualitative and quantitative methods. It consists of 6 different phases, including a literature review, an analysis of the previous experiences of pediatric PREMs reported by project partners, a Delphi process, a cycle of focus groups or in-depth interviews with children and their caregivers, a series of workshops with interactive working groups, and a cross-sectional observational survey. The project guarantees the direct participation of children and adolescents in the development and implementation phases of the project., Results: The expected results are (1) a deeper knowledge of published methodologies and tools on collecting and reporting pediatric patients' voice; (2) lessons learnt from the analysis of previous experiences of pediatric PREMs; a consensus reached through a participatory process (3) among experts, (4) pediatric patients and caregivers about a standard set of measures for the evaluation of hospitalization by patients; (5) the implementation of a European observatory on pediatric PREMs; and (6) the collection and comparative reporting of the pediatric patients' voice. In addition, the project is aimed at studying and proposing innovative methodologies and tools for capturing the pediatric patients' feedback directly, avoiding the intermediation of parents/guardians., Conclusions: Over the last decade, the collection and use of PREMs have gained importance as a research field. Children and adolescents' perspectives have also been increasingly taken into consideration. However, to date, there are limited experiences regarding the continuous and systematic collection and use of pediatric PREMs data for implementing timely improvement actions. In this perspective, the VoiCEs project provides room for innovation, by contributing to the creation of an international, continuous, and systematic pediatric PREMs observatory that can be joined by other children's hospitals or hospitals with pediatric patients, and foresees the return of usable and actionable data in benchmarking., International Registered Report Identifier (irrid): DERR1-10.2196/42804., (©Sabina De Rosis, Manila Bonciani, Veronica Spataro, Ilaria Corazza, Elisa Conti, Barbara Sibbles, Jan A Hazelzet, Pekka Lahdenne, Katariina Gehrmann, Francesca Menegazzo, Michela Sica, Vita Šteina, Guna Esenberga, Elise M Chapin, Stefania Solare, Milena Vainieri. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 03.04.2023.)

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., Participants: All women, receiving the PROM and PREM questionnaires as part of their routine perinatal care, received an invitation for a survey (n=460) and an interview (n=16). The results of the survey were analysed using descriptive statistics; thematic inductive content analysis was applied on the data from open text answers and the interviews., Results: More than half of the survey participants (n=255) felt the need to discuss the outcomes of PROM and PREM with their care professionals. The time spent on completing questionnaires and the comprehensiveness of the questions was scored 'good' by most of the survey participants. From the interviews, four main themes were identified: content of the PROM and PREM questionnaires, application of these outcomes in perinatal care, discussing PREM and data capture tool. Important facilitators included awareness of health status, receiving personalised care based on their outcomes and the relevance of discussing PREM 6 months post partum. Barriers were found in insufficient information about the goal of PROM and PREM for individual care, technical problems in data capture tools and discrepancy between the questionnaire topics and the care pathway., Conclusions: This study showed that women found the PCB set an acceptable and useful instrument for symptom detection and personalised care up until 6 months post partum. This patient evaluation of the PCB set has several implications for practice regarding the questionnaire content, role of care professionals and congruity with care pathways., Competing Interests: Competing interests: AF and ML-dR were chair and member respectively of the ICHOM working group that developed the PCB standard outcome set. The other authors have nothing to declare., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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., Design: Case control study. Admissions were selected from the national Dutch PICU registry, containing 53,789 PICU admissions between 2006 and 2017, in seven PICUs. PICU admissions were stratified into four groups, based on mortality risk (low/high) and outcome (death/survival). Random samples were selected from the four groups. Cases were "LN." Control groups were as follows: "LS," "high-risk nonsurvivors" (HN), and "high-risk survivors" (HS). Adverse events were identified using the validated trigger tool method., Setting: Patient chart review study., Patients: Children admitted to the PICU with either a low predicted mortality risk (< 1%) or high predicted mortality risk (≥ 30%)., Interventions: None., Measurements and Main Results: In total, 419 patients were included (102 LN, 107 LS, 104 HN, and 106 HS). LN had more complex chronic conditions (93.1%) than LS (72.9%; p < 0.01), HN (49.0%; p < 0.001), and HS (48.1%; p < 0.001). The occurrence of adverse events in LN (76.5%) was higher than in LS (13.1%) and HN (47.1%) ( p < 0.001). The most frequent adverse events in LN were hospital-acquired infections and drug/fluid-related adverse events. LN suffered from more severe adverse events compared with LS and HS ( p < 0.001). In 30.4% of LN, an adverse event contributed to death. In 8.8%, this adverse event was considered preventable., Conclusions: Significant and preventable adverse events were found in low-risk PICU nonsurvivors. 76.5% of LN had one or more adverse events. In 30.4% of LN, an adverse event contributed to mortality., Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2022 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

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. BREAST-Q domain scores were log transformed to normalize the distribution. Univariable regression analyses were used to assess (nonlinear) associations between age and BREAST-Q domain scores., Results: Overall, 9059 questionnaire responses were analyzed. Median (±SD) BREAST-Q domain scores were 64.0 ± 18.0 (satisfaction with breasts), 69.0 ± 21.0 (psychosocial well-being), 92.0 ± 20 (physical well-being), and 59.0 ± 15.0 (sexual well-being). Age as a linear term was associated with log-transformed satisfaction with breasts, psychosocial well-being, and physical well-being; sexual well-being was a quadratic function of age. Previous breast surgery unrelated to breast cancer was a significant predictor for higher log-transformed satisfaction with breasts (β = 0.04, p < 0.001) and higher sexual well-being score (β = -0.05, p < 0.001). Compared with previously published normative data, small differences were found in mean BREAST-Q domain scores (mean differences ranging between 2.45 and 6.24)., Conclusions: Normative Dutch BREAST-Q scores follow similar patterns across domains in comparison with previously published normative data. Normative Dutch BREAST-Q data enable future comparisons in breast-related satisfaction and quality of life issues of Dutch patients with breast cancer compared with their age-matched peers., (Copyright © 2022 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of the American Society of Plastic Surgeons. All rights reserved.)

Background: Older people receive care from multiple providers which often results in a lack of coordination. The Information and Communication Technology (ICT) enabled value-based methodology for integrated care (ValueCare) project aims to develop and implement efficient outcome-based, integrated health and social care for older people with multimorbidity, and/or frailty, and/or mild to moderate cognitive impairment in seven sites (Athens, Greece; Coimbra, Portugal; Cork/Kerry, Ireland; Rijeka, Croatia; Rotterdam, the Netherlands; Treviso, Italy; and Valencia, Spain). We will evaluate the implementation and the outcomes of the ValueCare approach. This paper presents the study protocol of the ValueCare project; a protocol for a pre-post controlled study in seven large-scale sites in Europe over the period between 2021 and 2023., Methods: A pre-post controlled study design including three time points (baseline, post-intervention after 12 months, and follow-up after 18 months) and two groups (intervention and control group) will be utilised. In each site, (net) 240 older people (120 in the intervention group and 120 in the control group), 50-70 informal caregivers (e.g. relatives, friends), and 30-40 health and social care practitioners will be invited to participate and provide informed consent. Self-reported outcomes will be measured in multiple domains; for older people: health, wellbeing, quality of life, lifestyle behaviour, and health and social care use; for informal caregivers and health and social care practitioners: wellbeing, perceived burden and (job) satisfaction. In addition, implementation outcomes will be measured in terms of acceptability, appropriateness, feasibility, fidelity, and costs. To evaluate differences in outcomes between the intervention and control group (multilevel) logistic and linear regression analyses will be used. Qualitative analysis will be performed on the focus group data., Discussion: This study will provide new insights into the feasibility and effectiveness of a value-based methodology for integrated care supported by ICT for older people, their informal caregivers, and health and social care practitioners in seven different European settings., Trial Registration: ISRCTN registry number is 25089186 . Date of trial registration is 16/11/2021., (© 2022. The Author(s).)

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., Methods: In total, 7 obstetric care networks across the Netherlands, each consisting of 1 or 2 hospitals and multiple community midwifery practices (ranging in number from 2 to 18), implemented the PROM and PREM domains of the PCB set as part of clinical routine. This observational study included all women participating in the clinical project. PROMs and PREMs were assessed with questionnaires at 5 time points: 2 during pregnancy and 3 post partum. Clinical threshold values (alerts) supported care professionals interpreting the answers, indicating possibly alarming outcomes per domain. Data collection took place from February 2020 to September 2021. Data analysis included missing (pattern) analysis, sum scores, alert rates, and sensitivity analysis., Results: In total, 1923 questionnaires were collected across the 5 time points: 816 (42.43%) at T1 (first trimester), 793 (41.23%) at T2 (early third trimester), 125 (6.5%) at T3 (maternity week), 170 (8.84%) at T4 (6 weeks post partum), and 19 (1%) at T5 (6 months post partum). Of these, 84% (1615/1923) were filled out completely. Missing items per domain ranged from 0% to 13%, with the highest missing rates for depression, pain with intercourse, and experience with pain relief at birth. No notable missing patterns were found. For the PROM domains, relatively high alert rates were found both in pregnancy and post partum for incontinence (469/1798, 26.08%), pain with intercourse (229/1005, 22.79%), breastfeeding self-efficacy (175/765, 22.88%), and mother-child bonding (122/288, 42.36%). Regarding the PREM domains, the highest alert rates were found for birth experience (37/170, 21.76%), shared decision-making (101/982, 10.29%), and discussing pain relief ante partum (310/793, 39.09%). Some domains showed very little clinical variation; for example, role of the mother and satisfaction with care., Conclusions: The PCB set is a useful tool to assess patient-reported outcomes and experiences that need to be addressed over the whole course of pregnancy and childbirth. Our results provide opportunities to improve and personalize perinatal care. Furthermore, we could propose several recommendations regarding methods and timeline of measurements based on our findings. This study supports the implementation of the PCB set in clinical practice, thereby advancing the transformation toward patient-centered, value-based health care for pregnancy and childbirth., (©Anne Louise Depla, Marije Lamain-de Ruiter, Lyzette T Laureij, Hiske E Ernst-Smelt, Jan A Hazelzet, Arie Franx, Mireille N Bekker, BUZZ Project Team. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 05.07.2022.)

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. Studies on patient-reported outcomes in patients with von Willebrand disease, inherited platelet function disorders and coagulation factor deficiencies were included., Results: Twenty-one articles met the inclusion criteria. Three studies were assessed as having poor quality, and therefore a high risk of bias. Nineteen studies had fair quality rating. Different measurements methods were used, ranging from predefined to self-developed questionnaires. The majority of included studies focused on von Willebrand disease. Patients with von Willebrand disease reported lower health-related quality of life compared to the general population. Overall, this trend was especially visible in the following domains: vitality, physical and social functioning and pain. Women with inherited bleeding disorders scored lower on health-related quality of life compared to men, especially women with heavy menstrual bleeding. Patients with joint bleeds or heavy menstrual bleeding reported an increased level of pain., Conclusion: Patients with autosomal inherited bleeding disorders report lower health related quality of life, especially those with joint bleeds or heavy menstrual bleeding. Numerous measurement methods are used in patients with autosomal inherited bleeding disorders, highlighting the need for studies using established, standardized measurement methods., (© 2022 The Authors. Haemophilia published by John Wiley & Sons Ltd.)

Introduction: Biologics are effective for the treatment of inflammatory bowel disease (IBD). However, unwarranted variation in processes and outcomes has been reported in the treatment of IBD. A care pathway for the treatment of IBD has the potential to reduce practice variation and improve outcomes. This study aims to compare the effect of a uniform care pathway for the treatment of patients with IBD with biologics to the current situation., Methods and Analysis: IBD Value is a longitudinal multicentre non-randomised parallel cluster trial with a baseline period. The study takes place in eight centres in the Netherlands. The baseline period will run for 12 months, after which the care pathway will be implemented in 6 of the 8 participating hospitals during the implementation phase of 3 months. Hereafter, the effect of the care pathway will be assessed for 12 months. Total study period is 27 months. The primary outcome is the effect of the care pathway on disease control (IBD-Control questionnaire). Secondary outcomes are the effect of the care pathway on the other outcomes of the International Consortium of Health Outcomes Measurement IBD standard set, health-related generic quality of life, patient experiences and degree of variation; cost effectiveness of the care pathway; and the variation between hospitals in the aforementioned outcomes in the baseline period. Outcomes will be measured every 6 months. The study started on 1 December 2020 and a minimum of 200 patients will be included., Ethics and Dissemination: The study was deemed not to be subject to Dutch law (WMO; Medical Research Involving Human Subjects Act) by the Medical Ethics Committee of the Erasmus MC, the Netherlands (registration number: MEC-2020-075) and a waiver was provided. Results will be disseminated through peer-reviewed journals and presented at (inter)national conferences., Trial Registration Number: NL8276., Competing Interests: Competing interests: RCAvL, NvL, DN, EB, MS, VdJ, KEV and JAH has nothing to disclose. CJvdW reports grants from Pfizer and Janssen and personal fees from AbbVie and Celltrion outside the submitted work. DvN reports personal fees from Janssen and Takeda outside the submitted work. RLW reports personal fees from AbbVie, Janssen and Pfizer outside the submitted work., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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., Setting and Participants: Cohort 1 is from a single-center study involving children admitted to PICU with meningococcal sepsis (samples obtained at three time points). Cohort 2 includes patients from a multicenter study involving children admitted to the hospital with invasive bacterial infections of differing etiologies (samples obtained within 48 hr after hospital admission)., Main Outcomes and Measures: Primary outcome measure was mortality. Secondary outcome measures were PICU-free days at day 28 and hospital length of stay., Results: In cohort 1 ( n = 59), nonsurvivors more frequently had A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 levels above the detection limit than survivors at admission to PICU (8/11 [73%] and 6/23 [26%], respectively; p = 0.02) and at t = 24 hours (2/3 [67%] and 3/37 [8%], respectively; p = 0.04). In cohort 2 ( n = 240), A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 levels in patients within 48 hours after hospital admission were more frequently above the detection limit than in healthy controls (110/240 [46%] and 14/64 [22%], respectively; p = 0.001). Nonsurvivors more often had detectable A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 levels than survivors (16/21 [76%] and 94/219 [43%], respectively; p = 0.003), which was mostly attributable to patients with Neisseria meningitidis ., Conclusions and Relevance: In children with bacterial infection, detection of A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 within 48 hours after hospital admission is associated with death, particularly in meningococcal sepsis. Future studies should confirm the prognostic value of A Disintegrin and Metalloproteinase with Thrombospondin Motifs-1 and should study pathophysiologic mechanisms., Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2021 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine.)

Objective: To develop an Overall Pediatric Health Standard Set (OPH-SS) of outcome measures that captures what matters to young people and their families and recognising the biopsychosocial aspects of health for all children and adolescents regardless of health condition., Design: A modified Delphi process., Setting: The International Consortium for Health Outcomes Measurement convened an international Working Group (WG) comprised of 23 international experts from 12 countries in the field of paediatrics, family medicine, psychometrics as well as patient advisors. The WG participated in 11 video-conferences, through a modified Delphi process and 9 surveys between March 2018 and January 2020 consensus was reached on a final recommended health outcome standard set. By a literature review conducted in March 2018, 1136 articles were screened for clinician and patient-reported or proxy-reported outcomes. Further, 4315 clinical trials and 12 paediatric health surveys were scanned. Between November 2019 and January 2020, the final standard set was endorsed by a patient validation (n=270) and a health professional (n=51) survey., Results: From a total of 63 identified outcomes, consensus was formed on a standard set of outcome measures that comprises 10 patient-reported outcomes, 5 clinician-reported measures, and 6 case-mix variables. The four developmental age-specific packages (ie, 0-5, 6-12, 13-17, 18-24 years) include either five or six measures with an average time for completion of 20 min., Conclusions: The OPH-SS is a starting point to drive value-based paediatric healthcare delivery from a global perspective for enhancing child and adolescent physical health and psychosocial well-being., Competing Interests: Competing interests: JEC is a Swedish national representative for the PROMIS Health Organisation and DISABKIDS Quality-of-Life measurement system., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives The aim of this study was to explore the perspectives of healthcare providers and researchers in a large academic hospital on facilitators and barriers for implementing patient-reported outcome measures (PROMs) in clinical care. Methods A customized web-based questionnaire was developed and disseminated to healthcare providers and researchers across multiple medical departments involved in a value-based health care initiative in the hospital. Questionnaire statements were rated using a 5-point Likert scale ranging from "strongly agree" to "strongly disagree". In addition, 8 open-ended questions were included allowing respondents to mention additional facilitators and barriers for implementing PROMs. Descriptive statistics were used to summarize the results. Results In total, 61 participants from both surgical and non-surgical departments completed the survey. Most respondents (51%) were medical specialists and the median employment duration was 14 years. Frequently reported facilitators were the presence of a PROM coordinator in the (outpatient) clinic (85%), the integration of PROMs in the electronic health record (81%), and the intrinsic motivation of members involved in the implementation (N=9 open responses). Commonly reported barriers were language barriers (76%), IT issues (N=17 open responses), and time constraints (N=14 open responses). Conclusions For the successful implementation of PROMs in clinical practice, it is imperative that healthcare organizations consider supporting motivated healthcare professionals, involving PROMs coordinators, and investing in an adequate IT infrastructure, and removal of language barriers., Competing Interests: Declaration of Competing Interest The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 The Author(s). Published by Elsevier B.V. All rights reserved.)

Background: Knowledge of the cost of illness of inflammatory bowel disease (IBD) is essential for health policy makers worldwide., Aim: To assess the cost of illness of IBD from the societal perspective taking into account time trends and geographical differences., Methods: A systematic review of all population-based studies on cost of illness of IBD published in Embase, Medline, Web of Science and Google Scholar. Methodology of included studies was assessed and costs were adjusted to 2018 US dollars., Results: Study methodologies differed considerably, with large differences in perspective, valuation method and population. For prevalent Crohn's disease (CD) cases in the last ten years annual healthcare costs were in Asia $4417 (range $1230-$31 161); Europe $12 439 ($7694-$15 807) and North America $17 495 ($14 454-$20 535). For ulcerative colitis (UC), these were $1606 ($309-$14 572), $7224 ($3228-$9779) and $13 559 ($13 559-$13 559). The main cost driver was medication, the cost of which increased considerably between 1985 and 2018, while outpatient and inpatient costs remained stable. IBD had a negative impact on work productivity. Annual costs of absenteeism for CD and UC were in Asia (with presenteeism) $5638 ($5638-$5638) and $4828 ($4828-$4828); Europe $2660 ($641-$5277) and $2394 ($651-$5992); North America $752 ($307-$1303) and $1443 ($85-$2350)., Conclusion: IBD societal cost of illness is increasing, driven by growing costs of medication, and varies considerably between continents. While biologic therapy was expected to decrease inpatient costs by reducing hospitalisations and surgery, these costs have not declined., (© 2021 The Authors. Alimentary Pharmacology & Therapeutics published by John Wiley & Sons Ltd.)

Background: In well-resourced countries, comprehensive care programs have increased life expectancy of patients with sickle cell disease, with almost all infants surviving into adulthood. However, families affected by sickle cell disease are more likely to be economically disenfranchised because of their racial or ethnic minority status. As every individual child has the right to the highest attainable standard of health under the United Nations Convention on the Rights of the Child, it is essential to identify both barriers and facilitators with regard to the delivery of adequate healthcare. Optimal healthcare accessibility will improve healthcare outcomes for children with sickle cell disease and their families. Healthcare professionals in the field of sickle cell care have first-hand experience of the barriers that patients encounter when it comes to effective care. We therefore hypothesised that these medical professionals have a clear picture of what is necessary to overcome these barriers and which facilitators will be most feasible. Therefore, this study aims to map best practises and lessons learnt in order to attain more optimal healthcare accessibility for paediatric patients with sickle cell disease and their families., Methods: Healthcare professionals working with young patients with sickle cell disease were recruited for semi-structured interviews. An interview guide was used to ensure the four healthcare accessibility dimensions were covered. The interviews were transcribed and coded. Based on field notes, initial codes were generated, to collate data (both barriers and solutions) to main themes (such as "transportation", or "telecommunication"). Through ongoing thematic analysis, definitive themes were formulated and best practices were reported as recommendations. Quotations were selected to highlight or illustrate the themes and link the reported results to the empirical data., Results: In 2019, 22 healthcare professionals from five different university hospitals in the Netherlands were interviewed. Participants included (paediatric) haematologists, nurses and allied health professionals. Six themes emerged, all associated with best practices on topics related to the improvement of healthcare accessibility for children with sickle cell disease and their families. Firstly, the full reimbursement of invisible costs made by caregivers. Secondly, clustering of healthcare appointments on the same day to help patients seeing all required specialists without having to visit the hospital frequently. Thirdly, organisation of care according to shared care principles to deliver specialised services as close as possible to the patient's home without compromising quality. Fourthly, optimising verbal and written communication methods with special consideration for families with language barriers, low literacy skills, or both. Fifthly, improving the use of eHealth services tailored to users' health literacy skills, including accessible mobile telephone contact between healthcare professionals and caregivers of children with sickle cell disease. Finally, increasing knowledge and interest in sickle cell disease among key stakeholders and the public to ensure that preventive and acute healthcare measures are understood and safeguarded in all settings., Conclusion: This qualitative study describes the views of healthcare professionals on overcoming barriers of healthcare accessibility that arise from the intersecting vulnerabilities faced by patients with sickle cell disease and their families. The recommendations gathered in this report provide high-income countries with a practical resource to meet their obligations towards individual children under the United Nations Convention on the Rights of the Child.

Objectives: Physiotherapy is, like all healthcare professions, relational and value-laden. Patient-centred care, evidence-based practice and value-based practices are concepts in which patient values lie at the heart of high-quality healthcare practices. Nevertheless, physiotherapists have limited awareness of what patient values are in the physiotherapy encounter. The purpose of this study is to explore these patient values., Methods: A qualitative study design using content analysis was used involving 17 adult participants with chronic or recurrent musculoskeletal pain. Data were collected during July 2015-July 2016 in three primary care physiotherapy facilities in Rotterdam, The Netherlands. Two researchers analysed the interviews and derived relevant codes from the data. After an iterative process of comparing, analysing, conceptualizing, and discussing the data, a pre-existing analytic framework was refined in which distinct values were delineated., Results: Emerging patient values were encompassed in three themes, each consisting of two to four elements: (1) values about oneself (uniqueness and autonomy), (2) values regarding actions of the professional (technically skilled professional, conscientious professional, compassionate professional, responsive professional) and (3) values regarding interactions between patients and the professionals (partnership and empowerment)., Conclusion: This study emphasizes the need for discussing patient values in the clinical encounter and helps physiotherapists to understand what deems to be important for patients with musculoskeletal pain in physiotherapy practice. The results of this study contribute to the existing body of knowledge of this important aspect of the quality of physiotherapy practice and may inspire clinicians and educators to actively implement patient values in clinical practice and the physiotherapy education., (© 2020 The Authors. Physiotherapy Research International published by John Wiley & Sons Ltd.)

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 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 €5049 [standard deviation (SD) €1634] per child per year. Total yearly costs per patient varied considerably, ranging from €669 to €84 010, 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., (© 2020 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals, Inc.)

Objectives: Although comorbidities play an essential role in risk adjustment and outcomes measurement, there is little consensus regarding the best source of this data. The aim of this study was to identify general patient-reported morbidity instruments and their measurement properties., Methods: A systematic review was conducted using multiple electronic databases (Embase, Medline, Cochrane Central, and Web of Science) from inception to March 2018. Articles focusing primarily on the development or subsequent validation of a patient-reported morbidity instrument were included. After including relevant articles, the measurement properties of each morbidity instrument were extracted by 2 investigators for narrative synthesis., Results: A total of 1005 articles were screened, of which 34 eligible articles were ultimately included. The most widely assessed instruments were the Self-Reported Charlson Comorbidity Index (n = 7), the Self-Administered Comorbidity Questionnaire (n = 3), and the Disease Burden Morbidity Assessment (n = 3). The most commonly included conditions were diabetes, hypertension, and myocardial infarction. Studies demonstrated substantial variability in item-level reliability versus the gold standard medical record review (κ range 0.66-0.86), meaning that the accuracy of the self-reported comorbidity data is dependent on the selected morbidity., Conclusions: The Self-Reported Charlson Comorbidity Index and the Self-Administered Comorbidity Questionnaire were the most frequently cited instruments. Significant variability was observed in reliability per comorbid condition of patient-reported morbidity questionnaires. Further research is needed to determine whether patient-reported morbidity data should be used to bolster medical records data or serve as a stand-alone entity when risk adjusting observational outcomes data., (Copyright © 2020. Published by Elsevier Inc.)