Papers by Ekkehart Jenetzky
Digital health, 2023
Objectives Mobile health applications could be means of educating and changing behaviours of thei... more Objectives Mobile health applications could be means of educating and changing behaviours of their users. Their features and qualities determine the sustainability of use. The FeverApp with two main features of information and documentation is a research-based app. In this observational cohort study, to evaluate the influential predictors of use, users’ feedback on the FeverApp, were analyzed. Methods Feedback is given using a structured questionnaire, four Likert items and two open questions regarding positive and negative impressions, available via app menu. Conventional content analysis (inductive approach) on the two open questions was performed. Comments were grouped into 12 codes. These codes were grouped hierarchically in an iterative process into nine subcategories and lastly into two main categories ‘format’ and ‘content’. Descriptive and quantitative analysis were performed. Results Out of 8243 users, 1804 of them answered the feedback questionnaire. The features of the app ( N = 344), followed by the information aspect ( N = 330) were most frequently mentioned. Documentation process ( N = 226), request for new features or improvement of the current ones ( N = 193), and functioning ( N = 132) were also highlighted in users’ feedback. App's ease of use, design and being informative were important for the users. The first impression of the app seems important as the majority of feedback were given during the first month of using the app. Conclusion In-app feedback function could highlight shortcomings and strengths of mobile health apps. Taking users’ feedback into consideration could increase the chance of sustained use. Besides ease of use and clear, likeable designs, users want apps that serve their needs while saving time.
International Journal of Environmental Research and Public Health, Nov 4, 2022
This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY
Pilot and Feasibility Studies, Aug 16, 2022
Research Square (Research Square), Apr 28, 2021
Background: Narratives about complaints in children and adolescents caused by wearing a mask are ... more Background: Narratives about complaints in children and adolescents caused by wearing a mask are accumulating. There is, to date, no registry for side effects of masks. Methods: At the University of Witten/Herdecke an online registry has been set up where parents, doctors, pedagogues and others can enter their observations. On 20.10.2020, 363 doctors were asked to make entries and to make parents and teachers aware of the registry. Results: By 26.10.2020 the registry had been used by 20,353 people. In this publication we report the results from the parents, who entered data on a total of 25,930 children. The average wearing time of the mask was 270 minutes per day. Impairments caused by wearing the mask were reported by 68% of the parents. These included irritability (60%), headache (53%), di culty concentrating (50%), less happiness (49%), reluctance to go to school/kindergarten (44%), malaise (42%) impaired learning (38%) and drowsiness or fatigue (37%). Discussion: This world's rst registry for recording the effects of wearing masks in children is dedicated to a new research question. Bias with respect to preferential documentation of children who are particularly severely affected or who are fundamentally critical of protective measures cannot be dismissed. The frequency of the registry's use and the spectrum of symptoms registryed indicate the importance of the topic and call for representative surveys, randomized controlled trials with various masks and a renewed risk-bene t assessment for the vulnerable group of children: adults need to collecticely re ect the circumstances under which they would be willing to take a residual risk upon themselves in favor of enabling children to have a higher quality of life without having to wear a mask.
JMIR Pediatrics and Parenting
Background The FeverApp registry uses ecological momentary assessment (EMA) to collect parental d... more Background The FeverApp registry uses ecological momentary assessment (EMA) to collect parental data on pediatric fever for scientific research. The mobile app FeverApp educates parents on safe fever management and serves as a fever diary. Objective The focus of this study was to evaluate the completeness and concordance of the EMA-based FeverApp registry with regard to its data quality from a multilevel perspective. Methods Structured descriptions of fever episodes by health care professionals from an office were used as reference. The number of children, their sociodemographic data, and agreement of fever episodes, with maximum temperature, intake of antipyretics and antibiotics, and physician visits, were compared with the entries in the corresponding physician’s reference records. The data quality indicators for completeness, meaning the extent to which the necessary data for the registry has actually been submitted, and concordance, which is the correspondence of the value of a...
Klinische Pädiatrie
Zusammenfassung Hintergrund Fieber gilt als wichtige Abwehrreaktion des Körpers bei Infekten und ... more Zusammenfassung Hintergrund Fieber gilt als wichtige Abwehrreaktion des Körpers bei Infekten und spielt im Kindesalter eine große Rolle. Unter Eltern sind immer noch Angst und Unsicherheit im Umgang mit Fieber weit verbreitet. Als Aufklärungsinstrument für Eltern können Informationsbroschüren zum Wissen und Umgang mit Fieber im Kindesalter dienen. Es wurde bisher noch nicht untersucht, ob diese Art der Informationsvermittlung ein geeignetes Werkzeug zur Aufklärung von Eltern darstellt. Methode 16 Krippen und Kindergärten im Saarland wurden aufgesucht. 481 Elternteile von mindestens einem Kind zwischen 1 und 7 Jahren beantworteten einen Fragebogen zu Wissen, Umgang und Vorgehen bei Fieber im Rahmen von Infekten. Im Anschluss wurde eine Informationsbroschüre zu Fieber ausgehändigt. Am Folgetag wurde der Fragebogen erneut von denjenigen 190 Eltern beantwortet, welche die Informationsbroschüre gelesen hatten. Die Änderung durch Lektüre der Informationsbroschüre wurde analysiert. Ergebni...
Human Genetics and Genomics Advances, 2022
Summary Esophageal atresia with or without tracheoesophageal fistula (EA/TEF) is the most common ... more Summary Esophageal atresia with or without tracheoesophageal fistula (EA/TEF) is the most common congenital malformation of the upper digestive tract. This study represents the first genome-wide association study (GWAS) to identify risk loci for EA/TEF. We used a European case-control sample comprising 764 EA/TEF patients and 5,778 controls and observed genome-wide significant associations at three loci. On chromosome 10q21 within the gene CTNNA3 (p = 2.11 × 10−8; odds ratio [OR] = 3.94; 95% confidence interval [CI], 3.10–5.00), on chromosome 16q24 next to the FOX gene cluster (p = 2.25 × 10−10; OR = 1.47; 95% CI, 1.38–1.55) and on chromosome 17q12 next to the gene HNF1B (p = 3.35 × 10−16; OR = 1.75; 95% CI, 1.64–1.87). We next carried out an esophageal/tracheal transcriptome profiling in rat embryos at four selected embryonic time points. Based on these data and on already published data, the implicated genes at all three GWAS loci are promising candidates for EA/TEF development. We also analyzed the genetic EA/TEF architecture beyond the single marker level, which revealed an estimated single-nucleotide polymorphism (SNP)-based heritability of around 37% ± 14% standard deviation. In addition, we examined the polygenicity of EA/TEF and found that EA/TEF is less polygenic than other complex genetic diseases. In conclusion, the results of our study contribute to a better understanding on the underlying genetic architecture of ET/TEF with the identification of three risk loci and candidate genes.
BMJ Open, 2021
ObjectivesFever is a common symptom among children. Parental lack of knowledge about fever could ... more ObjectivesFever is a common symptom among children. Parental lack of knowledge about fever could cause anxiety and lead to unnecessary measures to subside fever. There is little evidence about German parents’ knowledge and their fever management.DesignA cross-sectional study using a paper-based questionnaire.Setting16 kindergartens in Saarbrücken and Saarlouis regional association accepted to participate in the study. Parents from these kindergartens were requested during the pickup time to answer the questionnaire.Participants481 German parents participated in the study, 394 of them were women. Inclusion criteria were good understanding of German and being a parent of at least one child below the age of 7 years.Primary and secondary outcome measuresKnowledge and behaviour of parents on paediatric fever management and the factors influencing fever anxiety.ResultsThe older the parents were, the more anxiety they reported. Their definition of fever had a wide range of 30°C–41°C (mean ...
Monatsschrift Kinderheilkunde, 2020
Zusammenfassung Hintergrund In Deutschland werden über 80 % der Kinder und Jugendlichen von niede... more Zusammenfassung Hintergrund In Deutschland werden über 80 % der Kinder und Jugendlichen von niedergelassenen Kinder- und Jugendärztinnen und -ärzten (KJÄ) betreut. Diese haben eine spezifische Perspektive auf die COVID-19-Pandemie. Methode Zentrale Onlineerfassung von Fallzahlen, individuellen Fallbeschreibungen und Beobachtungen zu Infektion und Erkrankung mit SARS-CoV‑2 (www.co-ki.de). Ergebnisse An der Fallzahlerfassung beteiligten sich bisher 557 KJÄ. Diese betreuen ca. 670.000 Kinder. Sie meldeten 9803 Kinder, die als Verdachtsfälle vorgestellt wurden. Die KJÄ selber hatten einen klinischen Verdacht auf SARS-CoV-2-Infektion bei 3654 Kindern. Bei 7707 Kindern wurden PCR-Testungen mittels Nasen‑/Rachenabstrich durchgeführt, von denen 198 Abstriche (2,6 %) positiv ausfielen. Zudem wurden 731 Kinder auf SARS-CoV-2-Antikörper getestet, mit einem Nachweis in 82 Fällen (11,2 %). Trotz initial positivem PCR-Test hatten 47 Kinder mindestens 2 Wochen danach einen negativen Antikörpertest...
International Journal of Eating Disorders, 2019
ObjectiveNocturnal enuresis (NE), daytime urinary incontinence (DUI), and fecal incontinence (FI)... more ObjectiveNocturnal enuresis (NE), daytime urinary incontinence (DUI), and fecal incontinence (FI) are common disorders in childhood and are frequently accompanied by comorbid psychiatric disorders. Despite a high association between urinary and fecal incontinence with psychiatric and neurodevelopmental disorders, research on comorbidity between incontinence and anorexia nervosa (AN) remains scarce. Yet, it is well known that somatic consequences of AN include metabolic and gastrointestinal disorders. The study sought to assess the prevalence of incontinence and constipation in children and adolescents with AN and to examine associations of these two symptoms with body weight at admission and with BMI changes during inpatient treatment.MethodsData collected between 2015 and 2017 by a multicenter German web‐based registry for AN were analyzed. Three hundred and forty‐eight patients with AN (96.3% female, mean age = 15.1 ± 1.8 years) were assessed regarding AN subtype, psychiatric como...
Uro-News, 2010
ZusammenfassungJedes 10.000. Neugeborene kommt in Deutschland mit einer schweren Fehlbildung der ... more ZusammenfassungJedes 10.000. Neugeborene kommt in Deutschland mit einer schweren Fehlbildung der Blase und des Genitale und jedes zweitausendste ohne normalen Darmausgang zur Welt. Die Ursachen dieser schweren Fehlbildungen sind noch weitgehend unbekannt. Das Bundesministerium für Bildung und Forschung fördert nun ein neues Netzwerk (CuRE-Net, Network für Congenital Uro-Rectal Malformations), das diese Forschungslücke schließen soll.
Children
Febrile infections are common in childhood. Children can be infected with SARS-CoV-2, but their c... more Febrile infections are common in childhood. Children can be infected with SARS-CoV-2, but their course is milder than in adults. So far, a comparison between febrile infections with a positive or negative Corona test with the Omicron variant is missing. The data used are from the FeverApp registry, which collects parent-reported data on febrile infections in children and informs about fever management. A comparison of symptomatic differences between episodes with a positive or negative Corona test was performed using Χ2-tests. During the Omicron wave, reported tests doubled and positive test results nearly 12-folded. In episodes with positive Corona saliva tests, more cough, fatigue, disturbed smell/taste, limb pain, sore throat, signs of serious sickness, and touch sensitivity were reported. Children with a negative Corona test show more tonsillitis, teething, any pain symptoms, earaches, and rashes. Thus, there are some significant differences between febrile infections with a pos...
Children
The FeverApp registry is an ambulant ecological momentary assessment (EMA) model registry focusin... more The FeverApp registry is an ambulant ecological momentary assessment (EMA) model registry focusing on research of fever in children. Verification of EMA reliability is a challenge, due to absence of other source data. To ensure the reliability of EMA data, 973 families were invited to reassess their documentation in a survey. The survey contained questions (a) regarding the number of children, (b) genuineness of entries, (c) completeness of submitted fever episodes, (d) medication, (e) usefulness and further usage of the app. Of those invited, 438 families (45% response rate) participated in the survey. Of these, 363 (83%) families have registered all their children, 208 families have one child. The majority (n = 325, 74.2%) of families stated that they only made genuine entries in the app. Agreement between survey and app for fever episodes is 90% (Cohen’s κ = 0.75 [0.66, 0.82]). Medication shows 73.7% agreement, κ = 0.49 [0.42; 0.54]. The majority (n = 245, 55.9%) consider the app...
Neurological Research and Practice
Background Echocardiography is highly relevant in patients with ischemic stroke or TIA. Utilizati... more Background Echocardiography is highly relevant in patients with ischemic stroke or TIA. Utilization of routine echocardiographic examinations [transthoracic (TTE) or transesophageal (TEE)] on stroke units remains however unknown. To representatively examine echocardiographic rates on stroke units in Germany and to evaluate structural factors that may influence the decision to conduct echocardiography. Methods A nationwide analysis was performed by using certification audit data of all primary and comprehensive stroke centers (pSC and cSC) in Germany. Results Structural and organizational requirements of 310 departments (cSCs: 42.6%) were extracted. Median TTE rate was 63.3% (IQR 39.3–80.8), median TEE rate 21.3% (IQR 16.4–29.5). A cardiological department on site was present in 74.2%, and they were associated with higher TEE rates. TTE rates decreased with increasing numbers of patients (p = 0.026). Likewise, TEE rates decreased with increasing numbers of patients (p = 0.006), media...
Background Fever in children is a major problem in pediatric oncology. Usual management leads to ... more Background Fever in children is a major problem in pediatric oncology. Usual management leads to immediate antibiotic and antipyretic therapy, although there is consensus that antipyretic therapy should not be utilized to reduce body temperature. Increased body temperature during fever appears to be an effective modifier in terms of viral replication and enhanced host defense mechanisms against pathogens. Therefore, it might be beneficial to support febrile patients by applying gentle heat during the onset of fever to help the body to reach its new thermoregulatory set point. Methods A randomized, controlled, feasibility study over six months will be conducted in a pediatric oncology department in an academic hospital in Germany, in preparation for a multicenter clinical trial with two parallel groups concerning the efficacy of heat application vs. treatment as usual. Inclusion criteria are body temperatures ≥ 38.5°C in n = 24 cases of patients receiving chemotherapy aged 3 to 17 ye...
Pediatric Surgery International, 2015
Pediatric surgeons and patient organisations agree that fewer centers for anorectal malformations... more Pediatric surgeons and patient organisations agree that fewer centers for anorectal malformations with larger patient numbers are essential to reach better treatment. The European Union transacts a political process which aims to realize such centers of expertise for a multitude of rare diseases. All the centers on a specific rare disease should constitute an ERN on that disease. ARM-Net members in different countries report on first experiences with the implementation of national directives, identifying opportunities and risks of this process. Relevant details from the official European legislation were analyzed. A survey among the pediatric surgeons of the multidisciplinary ARM-Net consortium about national implementation was conducted. European legislation calls for multidisciplinary centers treating children with rare diseases, and proposes a multitude of quality criteria. The member states are called to allocate sufficient funding and to execute robust governance and oversight, applying clear methods for evaluation. Participation of the patient organisations is mandatory. The national implementations all over Europe differ a lot in respect of extent and timeframe. Establishing Centers of Expertise and a ERN for anorectal malformations offers great opportunities for patient care and research. Pediatric surgeons should be actively engaged in this process.
Archives of gynecology and obstetrics, 2017
To analyze cumulative pregnancy rates of subfertile couples after fertility awareness training. A... more To analyze cumulative pregnancy rates of subfertile couples after fertility awareness training. A prospective observational cohort study followed 187 subfertile women, who had received training in self-observation of the fertile phase of the menstrual cycle with the Sensiplan method, for 8 months. The women, aged 21-47 years, had attempted to become pregnant for 3.5 years on average (range 1-8 years) before study entry. Amenorrhea, known tubal occlusion and severe male factor had been excluded. An additional seven women, who had initially been recruited, became pregnant during the cycle immediately prior to Sensiplan training: this is taken to be the spontaneous pregnancy rate per cycle in the cohort in the absence of fertility awareness training. The cumulative pregnancy rate of subfertile couples after fertility awareness training was 38% (95% CI 27-49%; 58 pregnancies) after eight observation months, which is significantly higher than the estimated basic pregnancy rate of 21.6% i...
European Journal of Human Genetics
Anorectal malformations (ARM) represent a spectrum of rare malformations originating from a pertu... more Anorectal malformations (ARM) represent a spectrum of rare malformations originating from a perturbated development of the embryonic hindgut. Approximately 60% occur as a part of a defined genetic syndrome or within the spectrum of additional congenital anomalies. Rare copy number variations (CNVs) have been associated with both syndromic and non-syndromic forms. The present study represents the largest study to date to explore the contribution of CNVs to the expression of ARMs. SNP-array-based molecular karyotyping was applied in 450 individuals with ARM and 4392 healthy controls. CNVs were identified from raw intensity data using PennCNV. Overlapping CNVs between cases and controls were discarded. Remaining CNVs were filtered using a stringent filter algorithm of nine filter steps. Prioritized CNVs were confirmed using qPCR. Filtering prioritized and qPCR confirmed four microscopic chromosomal anomalies and nine submicroscopic CNVs comprising seven microdeletions (del2p13.2, del4p...
Studies in Health Technology and Informatics
The FAIR Guiding Principles do not address the quality of data and metadata. Therefore, data coll... more The FAIR Guiding Principles do not address the quality of data and metadata. Therefore, data collections could be FAIR but useless. In a funding initiative of registries for health services research, trueness of data received special attention. Completeness in the definition of recall was selected to represent this dimension in a cross-registry benchmarking. The first analyses of completeness revealed a diversity of its implementation. No registry was able to present results exactly as requested in a guideline on data quality. Two registries switched to a source data verification as alternative, the three others downsized to the dimension integrity. The experiences underline that the achievement of appropriate data quality is a matter of costs and resources, whereas the current Guiding Principles quote for a transparent culture regarding data and metadata. We propose the extension to FAIR-Q, data collections should not only be findable, accessible, interoperable, and reusable, but a...
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Papers by Ekkehart Jenetzky