Monika Bullinger's research while affiliated with University Medical Center Hamburg - Eppendorf and other places

Publications (536)

Article
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Background Despite existing guidelines for managing mild traumatic brain injury (mTBI), evidence-based treatments are still scarce and large-scale studies on the provision and impact of specific rehabilitation services are needed. This study aimed to describe the provision of rehabilitation to patients after complicated and uncomplicated mTBI and i...
Article
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Background In individuals suffering from a rare disease the diagnostic process and the confirmation of a final diagnosis often extends over many years. Factors contributing to delayed diagnosis include health care professionals' limited knowledge of rare diseases and frequent (co-)occurrence of mental disorders that may complicate and delay the dia...
Article
Full-text available
Background: After repair of esophageal atresia (EA), childhood survivors commonly present with digestive and respiratory morbidity, and around 55% have associated anomalies. Although it is known that these problems can reduce health-related quality of life in children with EA, less is understood about the impact on the family. We aimed to identify...
Article
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Traumatic brain injury (TBI) is frequently associated with neuropsychiatric impairments such as symptoms of post-traumatic stress disorder (PTSD), which can be screened using self-report instruments such as the Post-Traumatic Stress Disorder Checklist for DSM-5 (PCL-5). The current study aims to inspect the factorial validity and cross-linguistic e...
Article
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This study explored the evidence of validity of internal structure of the 12-item Functional Assessment of Chronic Illness Therapy—Spiritual Wellbeing Scale (FACIT-Sp-12) in Brazilian adolescents with chronic health conditions. The study involved 301 Brazilian adolescents with cancer, type 1 diabetes mellitus, or cystic fibrosis. Exploratory Factor...
Article
Objective: Patients suspected of having a rare (chronic) health condition have often gone a long way within the healthcare system. To date, little is known about the health-related quality of life of this group of patients. The study aims to describe the health-related quality of life and the perceived distress of patients suspected of having a ra...
Article
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Purpose: The hemophilia-specific health-related quality of life (HRQOL) questionnaire (Haemo-QOL-A) is validated for detecting QOL changes following standard therapy for hemophilia A, but has not been rigorously evaluated after gene therapy. This post hoc analysis evaluated the psychometric properties of Haemo-QOL-A in adult people with severe hem...
Article
Computed tomography (CT) brain imaging is routinely used to support clinical decision-making in patients with traumatic brain injury (TBI). Only 7% of scans, however, demonstrate evidence of TBI. The other 93% of scans contribute a significant cost to the healthcare system and a radiation risk to patients. There may be better strategies to identify...
Article
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This study aimed to examine the health-related quality of life (HrQoL), coping, height-related beliefs, and social support of children/adolescents with short stature, the sociodemographic, clinical, and psychosocial variables associated with HrQoL, and the moderating role of sociodemographic and clinical variables on the associations between psycho...
Article
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Complex metabolic disruption is a crucial aspect of the pathophysiology of traumatic brain injury (TBI). Associations between this and systemic metabolism and their potential prognostic value are poorly understood. Here, we aimed to describe the serum metabolome (including lipidome) associated with acute TBI within 24 h post-injury, and its relatio...
Article
Background Despite being well established, acute surgery in traumatic acute subdural haematoma is based on low-grade evidence. We aimed to compare the effectiveness of a strategy preferring acute surgical evacuation with one preferring initial conservative treatment in acute subdural haematoma. Methods We did a prospective, observational, comparat...
Article
Introduction The incidence of traumatic brain injury (TBI) is increasingly common in older adults aged ≥65 years, forming a growing public health problem. However, older adults are underrepresented in TBI research. Therefore, we aimed to provide an overview of health-care utilization, and of six-month outcomes after TBI and their determinants in ol...
Article
Background Frailty is known to be associated with poorer outcomes in individuals admitted to hospital for medical conditions requiring intensive care. However, little evidence is available for the effect of frailty on patients’ outcomes after traumatic brain injury. Many frailty indices have been validated for clinical practice and show good perfor...
Preprint
Full-text available
Background: After repair of esophageal atresia (EA), childhood survivors commonly present with digestive and respiratory morbidity, and around 55% have associated anomalies. Although it is known that these problems can reduce health-related quality of life in children with EA, less is understood about the impact on the family. We aimed to identify...
Article
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Background Trauma-induced coagulopathy in traumatic brain injury (TBI) remains associated with high rates of complications, unfavorable outcomes, and mortality. The underlying mechanisms are largely unknown. Embedded in the prospective multinational Collaborative European Neurotrauma Effectiveness Research in Traumatic Brain Injury (CENTER-TBI) stu...
Article
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Background In traumatic brain injury (TBI), large between-center differences in treatment and outcome for patients managed in the intensive care unit (ICU) have been shown. The aim of this study is to explore if European neurotrauma centers can be clustered, based on their treatment preference in different domains of TBI care in the ICU. Methods P...
Article
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Background Rare diseases occur in early childhood and have a major impact on the quality of life of the affected children and their families. Their need for psychosocial support is considerable, but psychosocial care in Germany is still far from being part of routine care. We interviewed experts to explore how they describe the current pathways to...
Article
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Background Prehospital care for patients with traumatic brain injury (TBI) varies with some emergency medical systems recommending direct transport of patients with moderate to severe TBI to hospitals with specialist neurotrauma care (SNCs). The aim of this study is to assess variation in levels of early secondary referral within European SNCs and...
Article
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Introduction Neurocognitive problems associated with posttraumatic stress disorder (PTSD) can interact with impairment resulting from traumatic brain injury (TBI). Research question We aimed to identify neurocognitive problems associated with probable PTSD following TBI in a civilian sample. Material and methods The study is part of the CENTER-TB...
Article
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Importance An interview is considered the gold standard method of assessing global functional outcomes in clinical trials among patients with acute traumatic brain injury (TBI). However, several multicenter clinical trials have used questionnaires completed by a patient or caregiver to assess the primary end point. Objective To examine agreement b...
Article
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Background The COVID-19 pandemic has disrupted the lives of children and adolescents worldwide. The German COPSY study is among the first population-based longitudinal studies to examine the mental health impact of the pandemic. The objective of the study was to assess changes in health-related quality of life (HRQoL) and mental health in children...
Article
Background In patients with severe brain injury, withdrawal of life-sustaining measures (WLSM) is common in intensive care units (ICU). WLSM constitutes a dilemma: instituting WLSM too early could result in death despite the possibility of an acceptable functional outcome, whereas delaying WLSM could unnecessarily burden patients, families, clinici...
Preprint
Full-text available
Background In individuals suffering from a rare disease the diagnostic process and the confirmation of a final diagnosis often extends over many years. Factors contributing to delayed diagnosis include health care professionals' limited knowledge of rare diseases and frequent (co-)occurrence of mental disorders that may complicate and delay the dia...
Article
Full-text available
Background In patients with severe brain injury, withdrawal of life-sustaining measures (WLSM) is common in intensive care units (ICU). WLSM constitutes a dilemma: instituting WLSM too early could result in death despite the possibility of an acceptable functional outcome, whereas delaying WLSM could unnecessarily burden patients, families, clinici...
Article
Full-text available
Background Prehospital care for patients with traumatic brain injury (TBI) varies with some emergency medical systems recommending direct transport of patients with moderate to severe TBI to hospitals with specialist neurotrauma care (SNCs). The aim of this study is to assess variation in levels of early secondary referral within European SNCs and...
Article
Background Fluid therapy—the administration of fluids to maintain adequate organ tissue perfusion and oxygenation—is essential in patients admitted to the intensive care unit (ICU) with traumatic brain injury. We aimed to quantify the variability in fluid management policies in patients with traumatic brain injury and to study the effect of this va...
Article
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Introduction Haemophilia is an inherited bleeding disorder characterised by spontaneous bleeding, often leading to impaired health-related quality of life (HRQoL). Commonly used treatments include episodic and prophylactic treatment regimens. Gene therapies could soon become available, potentially creating a paradigm shift in patient management. A...
Article
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Background The aim was to compare parent and child-reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and determine factors that affect the level of parent–child agreement. Methods We included 63 parent–child dyads of children born with EA aged 8–18 from Germany and Sweden. The generic PedsQL 4.0™ questio...
Article
Background Fatigue is one of the most commonly reported subjective symptoms following traumatic brain injury (TBI). The aims were to assess frequency of fatigue over the first 6 months after TBI, and examine whether fatigue changes could be predicted by demographic characteristics, injury severity and comorbidities. Methods Patients with acute TBI...
Article
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Background Families of children with rare diseases (i.e., not more than 5 out of 10,000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and its siblings. Although families caring for children with rare diseases are known to be at risk for mental disorders, the evaluation of special p...
Article
Purpose The Quality of Life after Brain Injury overall scale (QOLIBRI-OS) measures health-related quality of life (HRQoL) after traumatic brain injury (TBI). The aim of this study was to derive value sets for the QOLIBRI-OS in three European countries, which will allow calculation of utility scores for TBI health states. Methods A QOLIBRI-OS value...
Preprint
Full-text available
Background The aim was to compare parent and child reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and to determine factors that affect the level of parent-child agreement. Methods We included 63 parent-child dyads of children born with EA aged 8-18 from Germany and Sweden. The generic PedsQL questionna...
Preprint
Full-text available
Background The aim was to compare parent and child-reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and determine factors that affect the level of parent-child agreement. Methods We included 63 parent-child dyads of children born with EA aged 8-18 from Germany and Sweden. The generic PedsQL 4.0TM questio...
Article
Background Although rehabilitation is beneficial for individuals with traumatic brain injury (TBI), a significant proportion of them do not receive adequate rehabilitation after acute care. Objective Therefore, the goal of this prospective and multicenter study was to investigate predictors of access to rehabilitation in the year following injury i...
Article
Depression is one of the most common comorbidities of many chronic medical diseases including cancer and cardiovascular, metabolic, inflammatory and neurological disorders. Indeed, the prevalence of depression in these patient groups is often substantially higher than in the general population, and depression accounts for a substantial part of the...
Article
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Background We aimed to study the associations between pre- and in-hospital tracheal intubation and outcomes in traumatic brain injury (TBI), and whether the association varied according to injury severity. Methods Data from the international prospective pan-European cohort study, Collaborative European NeuroTrauma Effectiveness Research for TBI (C...
Article
With the growing amount of chronic and rare diseases in childhood that often require lifelong treatment, improvement of health-related quality of life is a major goal in therapy. Therefore, the assessment of health-related quality of life from the patient's perspective as a relevant outcome parameter in clinical practice gained increased recognitio...
Article
Introduction The diagnosis of a rare congenital malformation with necessary surgical treatment is an emotionally stressful event in a parent's life and may impact parental health-related quality of life (HrQoL). We aimed to review the literature on HrQoL in parents and caregivers of pediatric surgical patients with rare congenital malformations and...
Article
Background The European Union (EU) aims to optimize patient protection and efficiency of health-care research by harmonizing procedures across Member States. Nonetheless, further improvements are required to increase multicenter research efficiency. We investigated IRB procedures in a large prospective European multicenter study on traumatic brain...
Article
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Objective: to map the Brazilian scientific production related to the stages of the methodological process for the use of DISABKIDS® instruments and/or forms adapted to Brazil. Method: scoping review, with searches conducted on10 electronic databases, plus Google Scholar and contacts with researchers, without restriction of period or language. Res...
Article
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Objective We aimed to explore the added value of common machine learning (ML) algorithms for prediction of outcome for moderate and severe traumatic brain injury. Study Design and Setting We performed logistic (LR), lasso, and ridge regression with key baseline predictors in the IMPACT-II database (15 studies, n=11,022). ML algorithms included sup...
Article
This paper assesses the structural links between Cognitive Social Capital (CSC), Structural Social Capital (SSC), and Quality of Life (QoL) among Sub-Saharan African (SSA) migrants in Germany. Data from 518 SSA migrants in Germany were analysed. QoL as measured by EUROHIS-QOL 8-item Index, CSC, and SSC were included in a Structural Equation Model p...
Article
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Background: Achondroplasia is the most common form of disproportionate short stature and might affect not only the quality of life of the affected child but also that of the parents. Objectives: We aimed to investigate the quality of life of children with achondroplasia from child- and parent perspective as well as the parental quality of life....
Article
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Spiritual well-being is a major issue in health care, but instruments for measuring this construct in adolescents are lacking. This study adapted the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp-12) for use with Brazilian adolescents with chronic diseases and developed a parental observer-rated versi...
Conference Paper
Aims: This paper adresses the impact of perceived social conditions in terms of cognitive (CSC) and structural (SSC) social capital on self-reported quality of life (QoL) of Sub-Saharan African (SSA) migrants in Germany. Methods: In 518 SSA migrants’ in Germany QoL was measured by EUROHIS-QOL 8-item Index. CSC and SSC were included in a Structural...
Poster
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Intro: Based on 15 years of work related to development, testing and publication of the DISABKIDS measurement system for health-related quality of life (HrQoL) assessment in children and adolescents with chronic health conditions and disabilities, it is time to examine the performance and impact of the instrument in pediatric research. The DISABKID...
Conference Paper
Aims: Based on 15 years of work related to development, testing and publication of the DISABKIDS measurement system for health-related quality of life (HrQoL) assessment in children and adolescents with chronic health conditions and disabilities, it is time to examine the performance and impact of the instrument in pediatric research. The DISABKIDS...
Article
Background The burden of traumatic brain injury (TBI) poses a large public health and societal problem, but the characteristics of patients and their care pathways in Europe are poorly understood. We aimed to characterise patient case-mix, care pathways, and outcomes of TBI. Methods CENTER-TBI is a Europe-based, observational cohort study, consisti...
Article
Background In addition to increasing linear growth, improvement in health-related quality of life (HRQOL) is an important endpoint in the treatment of short statured youth. Hence, condition-specific psychometric valid instruments that adequately assess HRQOL are needed. We aimed to confirmatorily examine the psychometric performance of the Quality...
Presentation
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Background: The KIDSCREEN questionnaires were designed for screening in healthy and pediatric populations and are cross-culturally validated in 33 languages/44 countries. The long versions (KIDSCREEN-52; KIDSCREEN-27) provide quality of life (QoL) profiles based on five core domains: Physical Well-being, Psychological Well-being, Autonomy and Paren...
Article
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Background: Esophageal atresia (EA) is a rare congenital malformation, which is characterized by the discontinuity of the esophagus. We investigated the agreement between mothers', fathers', and children's' ratings on health-related quality of life (HRQOL) in children born with EA. We aimed to broaden the understanding of subjective experiences of...
Article
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Purpose Achondroplasia, as the most common form of disproportionate short stature, potentially impacts the health-related quality of life (HRQOL) and functioning of people with this condition. Because there are no psychometrically validated patient-reported outcome (PRO) condition-specific instruments for achondroplasia, this study selected and tes...
Article
This article presents empirical evidence on the quality of life of migrants’ from SSA in Germany, exploring its association with subjective integration and the influence of some socioeconomic and demographic characteristics. A cross-sectional study design using quantitative data from 518 SSA migrants’ collected across the 16 Germany federal state...
Article
Introduction: We aimed to identify clinical factors affecting condition-specific health related quality of life (HRQOL) domains in children born with esophageal atresia (EA). This can facilitate preventive care to risk groups of HRQOL impairments. Materials and methods: A total of 124 Swedish and German families of EA children answered the valid...
Article
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Purpose This meta-analytic review aimed to estimate the magnitude of health-related quality of life (HrQoL) impairments, as assessed by the KIDSCREEN questionnaires, both self- and parent-reported, in 8- to 18-years-old children/adolescents with chronic health conditions. Methods To identify studies using the KIDSCREEN questionnaires, three electr...
Article
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Background Value assessment of vaccination programs against serogroup B invasive meningococcal disease (IMD) is on the agenda of public health authorities. Current evidence on the burden due to IMD is unfit for pinning down the nature and magnitude of the full social and economic costs of IMD for two reasons. First, the concepts and components that...
Article
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Aside from clinical endpoints like height gain, health-related quality of life has also become an important outcome indicator in the medical field. However, the data on short stature and health-related quality of life is inconsistent. Therefore, we examined changes in health-related quality of life in German children with idiopathic growth hormone...
Article
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Background The Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth. This study evaluates the psychometric properties of the QoLISSY questionnaire within a German prospective trial of short statured children treated wi...
Article
Purpose Little attention has been directed towards examining the impact of predictors on change in health-related quality of life (HRQOL) within the course of growth hormone (GH) treatment in pediatric short stature. We aimed to assess changes in HRQOL and its sociodemographic, clinical and psychosocial predictors in children and adolescents diagno...
Article
Background: The combination of growth hormone (GH) and aromatase inhibitors (AI) improves linear growth in severely short adolescent boys; however, the effects of this intervention on quality of life (QoL) are unknown. This study assesses whether GH, AI, or their combination impacts the QoL of adolescent males with idiopathic short stature (ISS) f...
Article
Background The Quality of Life in Short Stature Youth (QoLISSY) questionnaire is a condition-specific instrument for measuring the health-related quality of life (HRQoL) in short statured children/adolescents from patients’ and parents’ perspectives. The aim of this study was to investigate the psychometric properties of the Greek version of the Qo...
Article
Zusammenfassung Die Berücksichtigung der Lebensqualität hat sich in den in den letzten 50 Jahren zu einem wichtigen Konzept einer patientenorientierten Medizin entwickelt. Mit ihm soll das subjektive Erleben der Patienten erfassbar und in seinen verschiedenen Dimensionen beschreibbar gemacht werden. Heute ist die Lebensqualität als patientenbericht...
Article
Purpose The aims of the study are 1) to gain knowledge of parents' and professionals' perceptions about cancer stricken children's resources, burdens, and ability to pretend play, and 2) to prepare the initiation of a pretend play intervention based on children's needs and included parents' and professionals' feedback. Design and Methods Qualitati...
Presentation
Full-text available
Aims. This meta-analytic review was conducted to estimate the magnitude of quality of life (QoL) impairments, both self- and parent-reported, in children/adolescents with chronic health conditions. The generic KIDSCREEN questionnaires were selected as outcome measures, since they are developmentally appropriate, were designed for screening in healt...
Poster
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Aims. The DISABKIDS Chronic-Generic Module (DCGM-37) is a multidimensional health-related quality of life (HrQoL) questionnaire for children/adolescents with chronic conditions, which was simultaneously developed in seven European countries (Austria, France, Germany, Greece, Sweden, the Netherlands, and UK), and sequentially translated in Portugal...
Article
Aim Despite advances of outcomes of esophageal atresia (EA), knowledge on patients' health-related quality of life (HRQoL) is sparse. Due to the heterogeneity of EA, larger cohorts need to be investigated to ensure reliability of data. Aim was to determine generic HRQoL after EA repair in a Swedish–German cohort. Methods Ethical approval was obtain...
Poster
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Background/aims. The DISABKIDS Asthma Module (DAsM) was originally developed within a simultaneous approach in seven European countries (Austria, France, Germany, Greece, the Netherlands, UK and Sweden) and sequentially translated into Portuguese language. This study was aimed at examining the cross-cultural validity of its correlated two-factor st...
Poster
Full-text available
Background/aims. The DISABKIDS Chronic-Generic Module (DCGM-37) is a multidimensional health-related quality of life (HrQoL) questionnaire for children/adolescents with chronic health conditions, which was simultaneously developed in seven European countries (Austria, France, Germany, Greece, the Netherlands, UK and Sweden), and sequentially transl...
Article
Background Esophageal atresia (EA) is a rare malformation of the esophagus, which needs surgical treatment. Survival rates have reached 95%, but esophageal and respiratory morbidity during childhood is frequent. Child and parent perspectives and cultural and age‐specific approaches are fundamental in understanding children's health‐related quality...
Article
Full-text available
Minor/subthreshold depression is associated with functional impairment, reduced quality of life, and the risk of developing into major depression. Therefore, it should be treated. Watchful waiting should be an option only for patients who, despite adequate information, are not interested in any kind of treatment. Psychotherapy has been found to be...
Article
Introduction For parents of chronically ill children, the experiences of caregiving are challenged by increased demands and restrictions imposed by their child's disease. Therefo