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BMJ Paediatr Open ; 5(1): e001152, 2021.
Article in English | MEDLINE | ID: mdl-34466665

ABSTRACT

Introduction: Coeliac disease (CD) occurs in 1% of the population, develops early in life and is severely underdiagnosed. Undiagnosed and untreated disease is associated with short-term and long-term complications. The current healthcare approach is unable to solve the underdiagnosis of CD and timely diagnosis and treatment is only achieved by active case finding. Aim: to perform a case finding project to detect CD children who visit the Youth Health Care Centres (YHCCs) in a well-described region in the Netherlands to evaluate whether it is feasible, cost-effective and well accepted by the population. Methods/analysis: Prospective intervention cohort study. Parents of all children aged 12 months and 4 years attending the YHCCs for a regular visit are asked whether their child has one or more CD-related symptoms from a standardised list. If so, they will be invited to participate in the case finding study. After informed consent, a point of care test (POCT) to assess CD-specific antibodies against tissue transglutaminase (TG2A) is performed onsite the YHCCs. If the POCT is positive, CD is highly suspected and the child will be referred to hospital for definitive diagnosis according to the Guideline Coeliac Disease of the European Society for Pediatric Gastroenterology, Hepatology and Nutrition guideline. Main outcomes: Incidence rate of new CD diagnoses in the study region in comparison to the one in the same age diagnosed by standard of care in the rest of the Netherlands.Feasibility and cost-effectiveness of active CD case finding at the YHCCs. All costs of active case finding, diagnostics and treatment of CD and the potential short-term and long-term consequences of the disease will be calculated for the setting with and without case finding.Ethical acceptability: by questionnaires on parental and healthcare professionals' satisfaction.A statistical analysis plan was prepared and is published on the GLUTENSCREEN website (Statistical-Analysis-Plan-11-5-2021_def.pdf (glutenscreen.nl) and added as annex 1). Ethics and dissemination: The Medical Ethics Committee Leiden approved this study. If we prove that case finding at the YHCC is feasible, cost-effective and well accepted by the population, implementation is recommended. Trial registration number: NL63291.058.17.


Subject(s)
Celiac Disease , Adolescent , Celiac Disease/diagnosis , Child , Cohort Studies , Delivery of Health Care , Early Diagnosis , Humans , Infant , Netherlands/epidemiology , Prospective Studies
3.
Arch Dis Child Fetal Neonatal Ed ; 105(3): 310-315, 2020 May.
Article in English | MEDLINE | ID: mdl-31427459

ABSTRACT

OBJECTIVE: To gain insight into neonatal care providers' perceptions of deferred consent for delivery room (DR) studies in actual scenarios. METHODS: We conducted semistructured interviews with 46 neonatal intensive care unit (NICU) staff members of the Leiden University Medical Center (the Netherlands) and the Hospital of the University of Pennsylvania (USA). At the time interviews were conducted, both NICUs conducted the same DR studies, but differed in their consent approaches. Interviews were audio-recorded, transcribed and analysed using the qualitative data analysis software Atlas.ti V.7.0. RESULTS: Although providers reported to regard the prospective consent approach as the most preferable consent approach, they acknowledged that a deferred consent approach is needed for high-quality DR management. However, providers reported concerns about parental autonomy, approaching parents for consent and ethical review of study protocols that include a deferred consent approach. Providers furthermore differed in perceived appropriateness of a deferred consent approach for the studies that were being conducted at their NICUs. Providers with first-hand experience with deferred consent reported positive experiences that they attributed to appropriate communication and timing of approaching parents for consent. CONCLUSION: Insight into providers' perceptions of deferred consent for DR studies in actual scenarios suggests that a deferred consent approach is considered acceptable, but that actual usage of the approach for DR studies can be improved on.


Subject(s)
Attitude of Health Personnel , Clinical Studies as Topic/ethics , Delivery Rooms/ethics , Informed Consent/ethics , Intensive Care Units, Neonatal/ethics , Adult , Aged , Clinical Studies as Topic/methods , Clinical Studies as Topic/psychology , Delivery Rooms/standards , Female , Humans , Informed Consent/psychology , Informed Consent/standards , Intensive Care Units, Neonatal/standards , Male , Middle Aged , Netherlands , Parents , Prospective Studies , Qualitative Research
4.
Eur J Pediatr ; 178(5): 681-693, 2019 May.
Article in English | MEDLINE | ID: mdl-30783762

ABSTRACT

The objective of this study was to study mental health, coping, and support after work-related adverse events among pediatricians. Physicians are frequently exposed to adverse events. It makes them at risk for posttraumatic stress disorder (PTSD), depression, and anxiety disorders. Besides the personal impact, physicians could pose a threat towards patients, as mental health problems are associated with medical errors. A questionnaire was sent to all members of the Pediatric Association of The Netherlands in October 2016. The questionnaire focused on adverse events, coping, and support. The Hospital Anxiety and Depression Scale and the Trauma Screening Questionnaire were included for evaluation of anxiety, depression, and posttraumatic stress. Four hundred ten questionnaires (18.9%) were eligible for analysis. Seventy-nine % (n = 325) of the respondents experienced adverse events, with "missing a diagnosis" having the most emotional impact and "aggressive behavior" as the most common adverse event. Nine (2.2%) pediatricians scored above the cut-off value on the Trauma Screening Questionnaire, indicative of PTSD. In total, 7.3% (n = 30) and 14.1% (n = 58) scored above the cut-off values in the Hospital Anxiety and Depression Scale, indicative of depression and anxiety. Only 26.3% reported to have a peer support protocol available for emotional support following adverse events.Conclusion: Pediatricians experience a considerable amount of adverse and potentially traumatizing events associated with significantly higher mental health problems compared to the general high-income population. Aggression towards pediatricians seems to be a common problem. Protocolled (peer) support should be implemented. What is known: • Physicians are frequently exposed to adverse events. It makes physicians at risk for depression, anxiety, and posttraumatic stress. • Physicians who are affected by these events pose a threat towards patients, as mental health problems are associated with medical errors. What is new: • Pediatricians experience a considerable amount of adverse and potentially traumatizing events associated with significantly higher mental health problems. • It is advised that (peer) support after adverse events is protocolled and education on coping strategies is implemented, to improve mental well-being of pediatricians.


Subject(s)
Anxiety/epidemiology , Depression/epidemiology , Occupational Stress/epidemiology , Pediatricians/psychology , Stress Disorders, Post-Traumatic/epidemiology , Adaptation, Psychological , Adult , Aged , Anxiety/etiology , Cross-Sectional Studies , Depression/etiology , Female , Health Surveys , Humans , Male , Middle Aged , Netherlands/epidemiology , Occupational Stress/psychology , Risk Factors , Social Support , Stress Disorders, Post-Traumatic/etiology , Workplace Violence/psychology
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