A5021383163- Health Systems, Economic Evaluations, Quality of Life
- Chronic Disease Management Strategies
- Genomics and Rare Diseases
- Cystic Fibrosis Research Advances
- Economic and Environmental Valuation
- SARS-CoV-2 and COVID-19 Research
- COVID-19 Clinical Research Studies
- Adolescent and Pediatric Healthcare
- COVID-19 Impact on Reproduction
- Healthcare innovation and challenges
- Genetic Syndromes and Imprinting
- BRCA gene mutations in cancer
Birmingham Women’s and Children’s NHS Foundation Trust
2021-2024
University Hospitals Birmingham NHS Foundation Trust
2024
Women’s Health Care
2023
University College London
2023
University of Cambridge
2023
Great Ormond Street Hospital for Children NHS Foundation Trust
2023
Oxford Brookes University
2023
Great Ormond Street Hospital
2023
University of Nottingham
2023
Improving care coordination for people with rare conditions may help to reduce burden on patients and carers improve the that receive. We recently developed a taxonomy of different ways coordinating conditions. It is not yet known which models are appropriate in situations. This study aimed to: (1) explore what types be situations, (2) use these findings develop hypothetical
Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their care, across different providers and settings). To develop evaluate strategies to potentially improve coordination, it necessary a method organising ways of coordinating conditions. Developing taxonomy would help describe in turn facilitate development evaluation pre-existing new models the authors' knowledge, no studies have previously developed...
Background A condition is defined as rare if it affects fewer than 1 in 2000 people the general population. Limited evidence suggests that care poorly co-ordinated for affected by conditions. Objectives To investigate and how of with conditions UK, would like to be co-ordinated. Design mixed-methods study comprising (1) a scoping review develop definition identify components ( n = 154 studies); (2) an exploratory qualitative interview understand impact lack 15 participants); (3) national...
Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health, psychosocial financial consequences. This study aimed to understand how is for diseases in the United Kingdom.We undertook a national survey UK involving 760 adults diseases, 446 parents/carers of people 251 healthcare professionals who diseases.Findings suggested that wide range patients, parents carers do not care. For example, few participants reported having...
<title>Abstract</title> Background Evidence suggests that coordination of care for people affected by rare diseases is poor. In order to improve the way coordinated it necessary understand preferences these conditions, and providers. The aim this study was examine patient, parent carer, health professional different attributes diseases. We conducted a discrete choice experiment using online surveys. There were no restrictions on participants in terms demographic factors other than age, or...
Abstract Background Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their care, across different providers and settings). To develop evaluate strategies to potentially improve coordination, it necessary a method organising ways of coordinating conditions. Developing taxonomy would help describe in turn facilitate development evaluation pre-existing new models the authors’ knowledge, no studies have previously...
Abstract Introduction Improving care coordination for people with rare conditions may help to reduce burden on patients and carers improve the that receive. We recently developed a taxonomy of different ways coordinating conditions. It is not yet known which models are appropriate in situations. This study aimed to: i) explore what types be situations, ii) use these findings develop hypothetical Methods To appropriateness coordination, we conducted interviews (n=30), four focus groups (n=22)...