Publications by authors named "David Zybarth"

Uncertainties, defined as metacognitive awareness of ignorance, are an essential part of medicine. Consequently, healthcare professionals (HCPs) as well as informal caregivers face them inevitably. Depending on the interpretation of uncertainties and the existence of available resources to cope with them, uncertainties might have serious consequences.

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Background: Rare diseases are often complex, chronic and many of them life-shortening. In Germany, healthcare for rare diseases is organized in expert centers for rare diseases. Most patients additionally have regional general practicioners and specialists for basic medical care.

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Background: Rare diseases are often characterized by complex symptoms and usually require coordination of multiprofessional treatment during the diagnostic and healthcare processes. In the wake of the COVID-19 pandemic, the healthcare situation and daily life of people with rare diseases and the caregivers of children with rare diseases changed drastically. The aim of the research project RESILIENT-SE-PAN was to assess the situation of people with rare diseases and caregivers during COVID-19 and to develop recommendations based on the findings.

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Background: During the COVID-19 pandemic people affected by rare diseases (RD) or caregiver of affected children have faced additional challenges. The pandemic has affected physical and mental health, social life and has led to financial consequences. Our objectives were to identify the impact of COVID-19 (1) on health care and (2) on daily life and participation of patients with RDs or caregivers from the perspective of representatives of patient organizations.

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Background: Rare diseases often present complex symptoms and usually require intersectoral collaboration during diagnostic and therapeutic processes involving inpatient and outpatient care. Hence, smooth interfaces with little loss of information and cooperation are essential to provide appropriate care. Our study, the project ESE-Best, aims at developing recommendations for the design and implementation of intersectoral care for patients with rare diseases using various survey instruments.

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Introduction: Patients and families affected by a rare disease are burdened in multiple ways. Functional interface management can unburden patients or relatives from the need to be solely accountable for the navigation through the healthcare system. This study aims at (1) providing an assessment of approaches and interface management concepts in the care of rare diseases, (2) evaluating selected existing approaches and concepts and (3) developing best practice recommendations for interface management.

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