A5024400724- Genomics and Rare Diseases
- Cystic Fibrosis Research Advances
- Health Literacy and Information Accessibility
- BRCA gene mutations in cancer
- Health Systems, Economic Evaluations, Quality of Life
- Social Media in Health Education
- Multi-Criteria Decision Making
- Chronic Disease Management Strategies
- Health, psychology, and well-being
- Corporate Governance and Management
- Immunodeficiency and Autoimmune Disorders
- Web and Library Services
- Cancer Genomics and Diagnostics
- Economic and Environmental Valuation
- Health and Medical Studies
- Patient-Provider Communication in Healthcare
- Pharmaceutical studies and practices
- Linguistic research and analysis
- Family Caregiving in Mental Illness
- Misinformation and Its Impacts
- Healthcare Systems and Public Health
- Dementia and Cognitive Impairment Research
AOK
2021
Leibniz University Hannover
2016-2020
The Analytic Hierarchy Process (AHP) is increasingly used to measure patient priorities. Studies have shown that there are several different approaches data acquisition and aggregation. aim of this study was the information needs patients having a rare disease analyze effects these AHP approaches. ranking then display categories on web-based portal about diseases according patient's suffering from were identified by an Internet research preliminary qualitative study. Hence, we designed...
Many European countries have recently implemented national rare disease plans. Although the network is strengthening, especially on macro and meso levels, patients still go a long way through healthcare systems, with many health professionals involved scarce evidence to gather. Specifically, patient involvement in form of shared decision-making can offer further potential increase systems' efficiency micro level. Therefore, we examine implementation concept thus far, explore whether...
Finding reliable information on one of more than 7000 rare diseases is a major challenge for those affected. Since are defined only by the prevalence criterion, multitude heterogeneous included. Common to all, however, difficulties regarding access. Even though various quantitative studies have analyzed use different sources specific diseases, little known about how users rate these based their experiences, and importance change over time.Fifty-five patients with variety 13 close relatives...
Identifying patient priorities and preference measurements have gained importance as patients claim a more active role in health care decision making. Due to the variety of existing methods, it is challenging define an appropriate method for each problem. This study demonstrates impact non-standardized Analytic Hierarchy Process (AHP) on priorities, compares with Best-Worst-Scaling (BWS) ranking card methods. We investigated AHP results different Consistency Ratio (CR) thresholds,...
The European Union considers diseases to be rare when they affect less than 5 in 10,000 people. It is estimated that there are between 5000 and 8000 different diseases. Consistent with this diversity, the quality of information available on Web varies considerably. Thus, criteria for websites about needed.The objective study was generate a catalog suitable diseases.First, relevant certificates recommendations health were identified through comprehensive search. Second, all considered each...
Rare diseases are, by definition, very serious and chronic with a high negative impact on quality of life. Approximately 350 million people worldwide live rare diseases. The resulting disease burden triggers health information search, but helpful, high-quality, up-to-date is often hard to find. Therefore, the improvement provision has been integrated in many national plans for diseases, discussing telephone as one access option. In this context, study examines need service offering affected...
Despite diverging definitions on rare conditions, people suffering from diseases share similar difficulties. A lack of experience by health professionals, a long wait first symptoms to diagnosis, scarce medical and scientific knowledge, unsatisfactory treatment options all trigger the search for information patients, family members, physicians. Examining systematically integrating stakeholder needs can help design platforms that effectively support this search.The aim study was innovate...
Providing care for someone with a disease or chronic condition can have negative psychological, physical, social, and economic impact upon informal caregivers. Despite the socio-economic relevance more than three decades of caregiver intervention research only very few translational efforts successful interventions are reported. Still less these been implemented into routine services. The aim ReDiCare study (German acronym BerTA) is to evaluate effectiveness stepped counselling approach...
Recently, public and political interest has focused on people living with rare diseases their health concerns. Due to the large number of different types sizable patients, taking action improve life those affected is gaining importance. In 2013, federal government Germany adopted a national plan for diseases, including call establish central information portal (Zentrales Informationsportal über seltene Erkrankungen, ZIPSE).
<sec> <title>BACKGROUND</title> Recently, public and political interest has focused on people living with rare diseases their health concerns. Due to the large number of different types sizable patients, taking action improve life those affected is gaining importance. In 2013, federal government Germany adopted a national plan for diseases, including call establish central information portal (Zentrales Informationsportal über seltene Erkrankungen, ZIPSE). </sec> <title>OBJECTIVE</title> The...
Abstract Background: Finding reliable information on one of more than 7,000 rare diseases is a major challenge for those affected. Since are defined only by the prevalence criterion, multitude heterogeneous included. Common to all, however, difficulties regarding access. Even though various quantitative studies have analyzed use different sources about diseases, still little known how users rate these and their importance changes over time. Methods: Fifty-five patients with variety 13 close...