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1.
BMC Med Inform Decis Mak ; 24(1): 136, 2024 May 27.
Article in English | MEDLINE | ID: mdl-38802886

ABSTRACT

BACKGROUND: The selection of data elements is a decisive task within the development of a health registry. Having the right metadata is crucial for answering the particular research questions. Furthermore, the set of data elements determines the registries' readiness of interoperability and data reusability to a major extent. Six health registries shared and published their metadata within a German funding initiative. As one step in the direction of a common set of data elements, a selection of those metadata was evaluated with regard to their appropriateness for a broader usage. METHODS: Each registry was asked to contribute a 10%-selection of their data elements to an evaluation sample. The survey was set up with the online survey tool "LimeSurvey Cloud". The registries and an accompanying project participated in the survey with one vote for each project. The data elements were offered in content groups along with the question of whether the data element is appropriate for health registries on a broader scale. The question could be answered using a Likert scale with five options. Furthermore, "no answer" was allowed. The level of agreement was assessed using weighted Cohen's kappa and Kendall's coefficient of concordance. RESULTS: The evaluation sample consisted of 269 data elements. With a grade of "perhaps recommendable" or higher in the mean, 169 data elements were selected. These data elements belong preferably to groups' demography, education/occupation, medication, and nutrition. Half of the registries lost significance compared with their percentage of data elements in the evaluation sample, one remained stable. The level of concordance was adequate. CONCLUSIONS: The survey revealed a set of 169 data elements recommended for health registries. When developing a registry, this set could be valuable help in selecting the metadata appropriate to answer the registry's research questions. However, due to the high specificity of research questions, data elements beyond this set will be needed to cover the whole range of interests of a register. A broader discussion and subsequent surveys are needed to establish a common set of data elements on an international scale.


Subject(s)
Registries , Registries/standards , Germany , Humans , Surveys and Questionnaires , Metadata
2.
J Pediatr Surg ; 2024 May 09.
Article in English | MEDLINE | ID: mdl-38811258

ABSTRACT

BACKGROUND: Hirschsprung's disease (HD) is a rare and complex malformation. The corrective operation is challenging and schedulable. The complete care situation for the corrective surgery for HD in Germany is uninvestigated. METHODS: For the years 2016-2022, the microdata of the diagnosis-related groups (DRG) -statistics provided by the Research Data Center of the German Federal Statistical Office were accessed. All hospital stays for corrective surgery of HD in patients aged 0-17 were analyzed for patient's comorbidities, treatment characteristics and hospital structures. The occurrence of severe early postoperative complications during the hospital stay were documented. RESULTS: The care structure for HD in Germany is decentralized with 109 hospitals performing 1199 corrective surgeries in 7 years. 75% of the participating hospitals performed three or less cases per year and 55 participating hospitals did not perform corrective surgery for HD each year. Early postoperative complications were common with at least one severe early complication in 18.6% of the cases. With an overall low case load per hospital, a volume outcome relationship cannot be established within Germany. Compared to international high volume centers the quality of outcomes for some of the investigated parameters was reduced. Despite the establishing of centers of expertise by the European reference network ERNICA for the treatment of HD no trend towards centralization occurred in Germany. CONCLUSIONS: The corrective surgery for HD in Germany is decentralized and results in an overall high rate of early complications. The comparison with international studies from high-volume centers indicates potential for improvement for the corrective surgery of HD. Centralization remains essential for the improvement of care for patients with HD.

3.
J CME ; 13(1): 2352940, 2024.
Article in English | MEDLINE | ID: mdl-38766491

ABSTRACT

Policymakers and practitioners are increasingly focused on achieving health equity and meeting the specific health needs of diverse populations, including vulnerable groups such as children. To address these challenges, the Fever App for Parents has emerged as a solution to guide parents through the complexities of managing fever in their children by improving fever management in children through real-time data collection and comprehensive educational support. This systematic approach aims to reduce unnecessary medical interventions and overuse of antibiotics, thereby improving the overall quality of pediatric care and reducing parental anxiety. In Germany, almost every second child aged 0-10 is a child with migration status and/or migration experience. This means that the parents of these children also need to be targeted in fever management and informed about the correct behavior in case of fever. This information will also be monitored anonymously to provide a feedback loop on the parent's experience with the menu navigation and information design. The FeverApp provides parents with a structured, step-by-step guide to accurately track their child's temperature and medication intake to encourage adherence to established fever management protocols. This study examines how the FeverApp embodies the principles of social responsibility through its multilingualism and digital development stages that incorporate user feedback. It shows why this app can be a resource to promote health equity through social responsibility in medical education and practice for parents, but also what barriers need to be considered at different stages of app development for parents from different cultural backgrounds to enable informal medical learning through apps.

4.
Eur J Pediatr Surg ; 2024 Feb 29.
Article in English | MEDLINE | ID: mdl-38307106

ABSTRACT

BACKGROUND: Anorectal malformations (ARMs) are complex congenital anomalies. The corrective operation is demanding and schedulable. Based on complete national data, patterns of care have not been analyzed in Germany yet. METHODS: All cases with ARM were analyzed (1) at the time of birth and (2) during the hospital stay for the corrective operation, based on the national hospital discharge data (DRG statistics). Patient's comorbidities, treatment characteristics, hospital structures, and the outcome of corrective operations were analyzed with respect to the hospitals' caseload. RESULTS: From 2016 to 2021, 1,726 newborns with ARM were treated at the time of birth in 388 hospitals. Of these hospitals, 19% had neither a pediatric nor a pediatric surgical department. At least one additional congenital anomaly was present in 49% of cases and 7% of the newborns had a birthweight below 1,500 g.In all, 2,060 corrective operations for ARM were performed in 113 hospitals in the same time period. In 24.5% of cases, at least one major complication was documented. One-third of the operations were performed in 56 hospitals, one-third in 20 hospitals, and one-third in 10 hospitals with median annual case numbers of 2, 5, and 10, respectively.Hospitals with the highest caseload operated cloacal defects more often than hospitals with the lowest caseload (7 vs. 2%) and had more early complications than hospitals with the lowest caseload (30 vs. 21%). This difference was not statistically significant after risk adjustment. CONCLUSIONS: Children with ARM are multimorbid. Early complications after corrective surgery are common. Considering the large number of hospitals with a very low caseload, centralization of care for the complex and elective corrective surgery for ARM remains a key issue for quality of care.

6.
Biomolecules ; 13(7)2023 07 13.
Article in English | MEDLINE | ID: mdl-37509153

ABSTRACT

BACKGROUND: The bladder exstrophy-epispadias complex (BEEC) is a spectrum of congenital abnormalities that involves the abdominal wall, the bony pelvis, the urinary tract, the external genitalia, and, in severe cases, the gastrointestinal tract as well. METHODS: Herein, we performed an exome analysis of case-parent trios with cloacal exstrophy (CE), the most severe form of the BEEC. Furthermore, we surveyed the exome of a sib-pair presenting with classic bladder exstrophy (CBE) and epispadias (E) only. Moreover, we performed large-scale re-sequencing of CBE individuals for novel candidate genes that were derived from the current exome analysis, as well as for previously reported candidate genes within the CBE phenocritical region, 22q11.2. RESULTS: The exome survey in the CE case-parent trios identified two candidate genes harboring de novo variants (NR1H2, GKAP1), four candidate genes with autosomal-recessive biallelic variants (AKR1B10, CLSTN3, NDST4, PLEKHB1) and one candidate gene with suggestive uniparental disomy (SVEP1). However, re-sequencing did not identify any additional variant carriers in these candidate genes. Analysis of the affected sib-pair revealed no candidate gene. Re-sequencing of the genes within the 22q11.2 CBE phenocritical region identified two highly conserved frameshift variants that led to early termination in two independent CBE males, in LZTR1 (c.978_985del, p.Ser327fster6) and in SLC7A4 (c.1087delC, p.Arg363fster68). CONCLUSIONS: According to previous studies, our study further implicates LZTR1 in CBE formation. Exome analysis-derived candidate genes from CE individuals may not represent a frequent indicator for other BEEC phenotypes and warrant molecular analysis before their involvement in disease formation can be assumed.


Subject(s)
Bladder Exstrophy , Epispadias , Male , Humans , Bladder Exstrophy/genetics , Epispadias/genetics , Exome/genetics , Urinary Bladder/metabolism , Calcium-Binding Proteins/genetics , Membrane Proteins/genetics , Transcription Factors/genetics , Transcription Factors/metabolism
7.
BMJ Open ; 13(6): e072722, 2023 06 23.
Article in English | MEDLINE | ID: mdl-37355269

ABSTRACT

INTRODUCTION: Vaccinations are considered to have a large impact on disease control, hence a multitude of vaccines in infancy is recommended. Retrospective studies suggest a possible relation between timing, kind or number of vaccines given in the first year of life and the subsequent incidence of allergic diseases. It must be clarified whether a causal relationship exists to ensure safety and reduce vaccine hesitancy. METHODS AND ANALYSIS: Due to the high recommendation rate of vaccines, a long-term randomised controlled trial is not considered as ethically acceptable. Therefore, this study aims to observe prospectively the allergic incidence at the age of 5 years after various vaccine interventions in the early months of life.Parents of infants up to the age of 4-6 weeks will be recruited before the first recommended vaccination. Relevant prognostic factors for allergies, status of immunisation and general health will be evaluated up to the age of 5.Allergic symptoms will be assessed by the International Study of Asthma and Allergies in Childhood-questionnaire and a medical confirmation of the allergy is mandatory.The main objective is to compare the incidence of asthma, atopic dermatitis, rhinoconjunctivitis, food allergy or any of these atopies at the age of 5 between infants who were not vaccinated or were vaccinated according to recommendations in the first year of life.The sample size calculation with about 4000 participants can prove a 5% difference to the basic prevalence with about 80% power and global 5% alpha error for the five primary endpoints adjusting according to Bonferroni-Holm and assuming a rate of 10% not early vaccinated infants. ETHICS AND DISSEMINATION: The study was registered (DRKS00029677) and has received approval by the ethics committee of Universität Witten/Herdecke (no. 113/2022). The results will be published.


Subject(s)
Asthma , Dermatitis, Atopic , Food Hypersensitivity , Vaccines , Infant , Humans , Infant, Newborn , Prospective Studies , Retrospective Studies , Food Hypersensitivity/epidemiology , Dermatitis, Atopic/epidemiology , Dermatitis, Atopic/prevention & control , Asthma/etiology , Immunization/adverse effects , Vaccines/adverse effects , Randomized Controlled Trials as Topic , Observational Studies as Topic
8.
Digit Health ; 9: 20552076231180418, 2023.
Article in English | MEDLINE | ID: mdl-37312942

ABSTRACT

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.

9.
Stud Health Technol Inform ; 302: 167-171, 2023 May 18.
Article in English | MEDLINE | ID: mdl-37203640

ABSTRACT

Feedback of data quality measures to study sites is an established procedure in the management of registries. Comparisons of data quality between registries as a whole are missing. We implemented a cross-registry benchmarking of data quality within the field of health services research for six projects. Five (2020) and six (2021) quality indicators were selected from a national recommendation. The calculation of the indicators was adjusted to the registries' specific settings. Nineteen (2020) and 29 results (2021) could be included in the yearly quality report. Seventy-four per cent (2020) and 79% (2021) of the results did not include the threshold in their 95%-confidence-limits. The benchmarking revealed several starting points for a weak-point analysis through a comparison of results with a predefined threshold as well as through comparisons among each other. In the future, a cross-registry benchmarking might be part of services provided through a health services research infrastructure.


Subject(s)
Benchmarking , Quality Indicators, Health Care , Benchmarking/methods , Registries , Data Collection , Data Accuracy
10.
J Pediatr Surg ; 58(10): 1921-1928, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37045715

ABSTRACT

BACKGROUND: Registries are important in rare disease research. The Anorectal Malformation Network (ARM-Net) registry is a well-established European patient registry collecting demographic, clinical, and functional outcome data. We assessed the quality of this registry through review of the structure, data elements, collected data, and user experience. MATERIAL AND METHODS: Design and data elements were assessed for completeness, consistency, usefulness, accuracy, validity, and comparability. An intra- and inter-user variability study was conducted through monitoring and re-registration of patients. User experience was assessed via a questionnaire on registration, design of registry, and satisfaction. RESULTS: We evaluated 119 data elements, of which 107 were utilized and comprised 42 string and 65 numeric elements. A minority (37.0%) of the 2278 included records had complete data, though this improved to 83.5% when follow-up elements were excluded. Intra-observer variability demonstrated 11.7% incongruence, while inter-observer variability was 14.7%. Users were predominantly pediatric surgeons and typically registered patients within 11-30 min. Users did not experience any significant difficulties with data entry and were generally satisfied with the registry, but preferred more longitudinal data and patient-reported outcomes. CONCLUSIONS: The ARM-Net registry presents one of the largest ARM cohorts. Although its collected data are valuable, they are susceptible to error and user variability. Continuous evaluations are required to maintain relevant and high-quality data and to achieve long-term sustainability. With the recommendations resulting from this study, we call for rare disease patient registries to take example and aim to continuously improve their data quality to enhance the small, but impactful, field of rare disease research. LEVEL OF EVIDENCE: V.


Subject(s)
Anorectal Malformations , Rare Diseases , Child , Humans , Registries , Data Accuracy , Surveys and Questionnaires , Data Collection
11.
Children (Basel) ; 10(3)2023 Feb 22.
Article in English | MEDLINE | ID: mdl-36979977

ABSTRACT

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 positive or negative Corona test, but symptoms are present on both sides. The omicron variant seems to be more infectious than the alpha or delta variants in children, but the symptoms remain mild and do not differ much from other febrile infections.

12.
Children (Basel) ; 10(2)2023 Feb 15.
Article in English | MEDLINE | ID: mdl-36832514

ABSTRACT

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 as an additional benefit and 87.3% would like to use it further. Email surveys are a possible approach to evaluate EMA based registry data. The possible observation units (children and fever episodes) show an adequate reliability. With this approach, surveys of further samples and variables could help to improve the quality of EMA based registries.

13.
Klin Padiatr ; 235(5): 284-289, 2023 Sep.
Article in German | MEDLINE | ID: mdl-36603824

ABSTRACT

BACKGROUND: Fever is an important immune reaction of the body in infections and plays a major role in childhood. Fear and uncertainty in dealing with fever are still widespread among parents. Information leaflets on the knowledge and handling of fever in childhood can serve as an educational tool for parents. It has not yet been investigated whether this type of information transfer is a suitable tool for educating parents. METHODS: 16 kindergartens in Saarland were visited. 481 parents of at least one child between the ages of 1 and 7 years answered a questionnaire on knowledge, approach and handling of fever in infections. Subsequently, an information leaflet on fever was handed out. On the following day, the questionnaire was answered again by the 190 parents who had read the information leaflet. The change due to reading the information leaflet was analyzed. RESULTS: 40% of the participants read the information leaflet. 87% mothers and 13% fathers participated in the follow-up survey. 10% of the post-survey respondents had a secondary school diploma and 34% had a university degree. After reading, fever was considered useful significantly more often and febrile convulsions and consequential damage were mentioned significantly less often as a reason for fever reduction. CONCLUSION: Information leaflets on fever can be a complementary tool for education, the short-term effect is confirmed, the sustainability needs to be further evaluated. There is also a need to reach the majority.


Subject(s)
Fever , Health Knowledge, Attitudes, Practice , Child , Female , Humans , Infant , Child, Preschool , Parents/education , Mothers , Fear , Surveys and Questionnaires
14.
Neurol Res Pract ; 5(1): 3, 2023 Jan 19.
Article in English | MEDLINE | ID: mdl-36653887

ABSTRACT

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), mediated by departments with cSCs (p = 0.008 for cSCs vs p = 0.230 for pSCs). TTE rates were far more inhomogeneously distributed than TEE rates and higher in pSCs (p = 0.011). Overall, 12.9% of centers did not perform any echocardiographic examination in at least 50% of all stroke patients. CONCLUSION: More detailed recommendations regarding echocardiography should be included in future guidelines. Moreover, evaluating the impact of echocardiographic examinations on long-term prognosis in stroke patients should be focus of further evaluations.

15.
Eur J Hum Genet ; 31(1): 105-111, 2023 01.
Article in English | MEDLINE | ID: mdl-36319675

ABSTRACT

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, del4p16.2, del7q31.33, del9p24.1, del16q12.1, del18q32, del22q11.21) and two microduplications (dup2p13.2, dup17q12) in 14 individuals (12 singletons and one affected sib-pair). Within these CNVs, based on their embryonic expression data and function, we suggest FOXK2, LPP, and SALL3 as putative candidate genes. Overall, our CNV analysis identified putative microscopic and submicroscopic chromosomal rearrangements in 3% of cases. Functional characterization and re-sequencing of suggested candidate genes is warranted.


Subject(s)
Anorectal Malformations , DNA Copy Number Variations , Humans , Anorectal Malformations/genetics , Chromosome Aberrations , Karyotyping
16.
Article in English | MEDLINE | ID: mdl-36361379

ABSTRACT

Parents' confidence regarding their children's fever is a key factor in its management and there is still unnecessary anxiety and associated antipyretic overuse. The FeverApp application collects naturalistic real-time data on febrile infections and educates parents on fever management. Logistic regression examined the associations between (1) parental confidence and (2) antipyretics use with fever relevant parameters. First entry data of 3721 children (mean age 21 months; SD 22.97) was assessed. A total of 58.0% of parents felt confident upon first fever documentation. Warning signs [OR = 0.49, 95% CI: 0.40-0.61], dehydration [OR = 0.65, 95% CI: 0.52-0.81], fever [OR = 0.67, 95% CI: 0.57-0.80] and having a female child [OR = 0.77, 95% CI: 0.66-0.90] had the highest negative association with parental confidence. Antipyretics were used initially in 14.7% of children. Fever had the highest positive [OR = 2.58, 95% CI: 1.89-3.50] and well-being the highest negative association with antipyretic use [OR = 0.37, 95% CI: 0.22-0.63). In the first entry data, parental confidence was related to children's health condition in a reasonable medical manner. The use of antipyretics was mostly associated with febrile temperature, but also low well-being. Thus, associations were partly in accordance with recent guidelines.


Subject(s)
Antipyretics , Mobile Applications , Child , Female , Humans , Infant , Antipyretics/therapeutic use , Health Knowledge, Attitudes, Practice , Fever/diagnosis , Fever/drug therapy , Registries
17.
JMIR Pediatr Parent ; 5(4): e35510, 2022 Nov 02.
Article in English | MEDLINE | ID: mdl-36322119

ABSTRACT

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 data element with a reference source, were chosen to analyze whether EMA may be a suitable method for this kind of registry. RESULTS: In both data sources, 1012 children were available for comparison over 16 months. The completeness of gender (1012/1012, 100%) and date of birth (1004/1012, 99.2%) information was high, and the mismatches were 0.69% (7/1012) and 1.19% (12/1012), respectively, between the sources. Of these 1012 children, 668 (66%) registered fever episodes in FeverApp. They relate to 534 families with 953 fever episodes in the reference records and 1452 episodes in the FeverApp registry. Of the 534 families, 183 (34.3%) refrained from visiting the office during fever episodes but nevertheless documented them in FeverApp. Largest part (766/1452, 52.75%) episodes were recorded exclusively in the FeverApp registry by 371 (371/534, 69.5%) families. The remaining 686 (47.2%) episodes of 391 (58.5%) children from 351 (65.7%) families were comparable with the reference data source in terms of physician visits, medication, and temperature. The completeness ranged, depending on the kind of variable, from 11.5% to 65% in the registry and from 7.6% to 42.6% in the office. The 953 fever episodes reported by the reference office consisted of 681 (71.5%) acute and 272 (28.5%) past episodes. In FeverApp, most past (262/272, 96.3%) but less acute (424/681, 62.3%) episodes have been entered. The concordance rates were varied: 90.2% for antibiotic use, 66.6% for antipyretic use, 61.7% for physician visits, and 16% for the highest temperature during the fever episode. CONCLUSIONS: Both sources delivered only partial data, and the rates of completeness and concordance depended on the kind of variable. However, the FeverApp registry showed higher documentation and precision rates than professional records for all considered variables. Therefore, EMA may play a unique supplement for research in ambulatory care. FeverApp could support pediatric offices, especially during the pandemic.

18.
Pilot Feasibility Stud ; 8(1): 183, 2022 Aug 16.
Article in English | MEDLINE | ID: mdl-35974359

ABSTRACT

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 with the sole aim of reducing 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 pilot study over 6 months will be conducted in a pediatric oncology department in an academic hospital in Germany. This study is a preparation for a multicenter clinical trial with two parallel groups concerning the efficacy of heat application vs. treatment as usual. One of the inclusion criteria is body temperatures ≥ 38.0 °C in n = 24 cases of patients receiving chemotherapy aged 18 months to 17 years. The first intervention consists of gentle heat application with hot water bottles at any sign of illness and onset of fever. The aim is to achieve a warm periphery equilibrated to trunk temperature of less than 0.5 °C. The second intervention is the avoidance of antipyretics. The control group receives the standard antipyretic treatment from the participating hospital. The purposes of this pilot study are proof of principle of intervention, evaluation of safety, feasibility, definition of endpoints, and to receive basic data for sample size calculation and needed resources. DISCUSSION: The main goal is to improve the care of children with cancer by providing the best possible support for febrile episodes. If fever support by heat reduces discomfort, administration of antipyretics and maybe even antibiotics, this would be an advancement in oncological fever management. This pilot study is intended to provide a basis for a main, multicenter, randomized trial and demonstrate the practicability of heat application in febrile patients in pediatric oncology. TRIAL REGISTRATION: German Clinical Trials Register (DRKS), DRKS00028273 . Registered on 14 April 2022.

19.
GMS J Med Educ ; 39(2): Doc25, 2022.
Article in English | MEDLINE | ID: mdl-35692365

ABSTRACT

Background: Although infantile fever is harmless in most cases, many parents feel insecure when having to deal with it because important information is often missing. For educational purposes, an information video on fever in children was developed, which is also intended to serve as an onboarding element of a health app. The aim of the present work was to record the attitude of parents and adults on the topic of fever before and after the presentation of the information video, as well as its evaluation. Methods: Between May and November 2020, a total of 123 adults from three groups with different backgrounds (students, parents and educators) were interviewed using a questionnaire that was completed before and after the one-time presentation of an educational information video clip. Results: Several significant outcomes were recorded in attitude change toward managing fever, with no significant difference between groups. After viewing the informational video clip, 74% of participants would take body temperature rectally more often. In the after-questionnaire, 83% of participants agreed that they would now be more cautious about using fever-reducing medications. Before the video clip, 75% of the participants thought fever was "rather useful"; after, 93%. The level of temperature played a minor role as a reason for fever reduction. The information content and quality of the video were rated positively. Discussion: This study shows that a short information video is capable of bringing about a subjectively perceived intentional change in the attitude to dealing with fever, motivating a change in behavior, and reducing uncertainty in dealing with fever. Since the change in attitude was measured immediately after viewing the video clip, no statement can be made about the medium to long-term effect. Conclusion: The information video clip can be classified as a short-term fever education tool for which at least short-term effective is demonstrated. Long-term and possible synergistic effects when integrated into a health app with further information still needs to be investigated.


Subject(s)
Health Knowledge, Attitudes, Practice , Mobile Applications , Adult , Child , Fever/diagnosis , Humans , Parents , Surveys and Questionnaires
20.
Children (Basel) ; 9(6)2022 Jun 03.
Article in English | MEDLINE | ID: mdl-35740768

ABSTRACT

In the past, an anteriorly located anus was often misdiagnosed and treated as an anorectal malformation (ARM) with a perineal fistula (PF). The paper aims to define the criteria for a normal anus, an anterior anus (AA) as an anatomic variant, and milder types of ARM such as congenital anal stenosis (CAS) and PF. An extensive literature search was performed by a working group of the ARM-Net Consortium concerning the subject "Normal Anus, AA, and mild ARM". A consensus on definitions, clinical characteristics, diagnostic management, and treatment modalities was established, and a diagnostic algorithm was proposed. The algorithm enables pediatricians, midwives, gynecologists, and surgeons to make a timely correct diagnosis of any abnormally looking anus and initiate further management if needed. Thus, the routine physical inspection of a newborn should include the inspection of the anus and define its position, relation to the external sphincter, and caliber. A correct diagnosis and use of the presented terminology will avoid misclassifications and allow the initiation of correct management. This will provide a reliable comparison of different therapeutic management and outcomes of these patient cohorts in the future.

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