Publications by authors named "Maria Kokocinska"
Article Synopsis
- The study aimed to understand preferences for care coordination among patients, parents, carers, and healthcare professionals affected by rare diseases in the UK, using online surveys to gather data.
- A total of 996 valid responses highlighted that all aspects of care coordination, such as cost, access to health records, and support from care coordinators, significantly impacted preferences, with no major differences between patients and carers.
- However, healthcare professionals showed differing preferences, favoring more autonomy for care coordinators, unlike patients and carers who preferred having greater control over their care coordination.
Background: Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health, psychosocial and financial consequences. This study aimed to understand how care is coordinated for rare diseases in the United Kingdom.
Methods: We undertook a national survey in the UK involving 760 adults affected by rare diseases, 446 parents/carers of people affected by rare diseases, and 251 healthcare professionals who care for people affected by rare diseases.
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 and evaluate strategies to potentially improve care coordination, it is necessary to develop a method for organising different ways of coordinating care for rare conditions. Developing a taxonomy would help to describe different ways of coordinating care and in turn facilitate development and evaluation of pre-existing and new models of care coordination for rare conditions.
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- Exploring effective care coordination for rare conditions can lead to better patient experiences and reduced burdens on families.
- Various interviews and workshops revealed that stakeholders prefer care models that balance national and local efforts, emphasize professional collaboration, and clarify roles within the care team.
- Ten hypothetical models of care coordination were created, highlighting the importance of considering patient complexity, healthcare resources, and societal factors in developing these models.
Aim: To establish if there is a correlation between burn incidence and social deprivation in order to formulate a more effective burns prevention strategy.
Methods: A quantitative retrospective review of International Burn Injury Database (IBID) was carried out over a period from 2006 to 2011 to obtain data for children referred to our burns centre in West Midlands. Social deprivation scores for geographical areas were obtained from Office of National Statistics (ONS).