Development of models of care coordination for rare conditions: A qualitative study

Walton, Holly; Simpson, Amy; Ramsay, Angus I.G.; Hunter, Amy; Jones, Jennifer; Ng, Pei Li; Leeson-Beevers, Kerry; Bloom, Lara; Kai, Joe; Kokocinska, Maria; Sutcliffe, Alastair G; Morris, Stephen; Fulop, Naomi J.

doi:10.1101/2021.11.16.21266395

All Outputs (8)

Cardiovascular outcomes and mortality after incident ischaemic stroke in patients with a recent cancer history (2022)
Journal Article
Akyea, R. K., Iyen, B., Georgiopoulos, G., Kai, J., Qureshi, N., & Ntaios, G. (2023). Cardiovascular outcomes and mortality after incident ischaemic stroke in patients with a recent cancer history. European Journal of Internal Medicine, 109, 50-57. https://doi.org/10.1016/j.ejim.2022.12.006

Background: Up to 10% of patients with ischaemic stroke have comorbid cancer and stroke in these patients is thought to have a poor short-term prognosis. There is little known about the long-term cardiovascular morbidity and mortality outcomes after... Read More about Cardiovascular outcomes and mortality after incident ischaemic stroke in patients with a recent cancer history.

Medical treatment for heavy menstrual bleeding in primary care: 10-year data from the ECLIPSE trial (2022)
Journal Article
Kai, J., Dutton, B., Vinogradova, Y., Hilken, N., Gupta, J., & Daniels, J. (2022). Medical treatment for heavy menstrual bleeding in primary care: 10-year data from the ECLIPSE trial. British Journal of General Practice, 72(725), e857-e864. https://doi.org/10.3399/bjgp.2022.0260

Background Heavy menstrual bleeding (HMB) is a common problem that can significantly affect women's lives. There is a lack of evidence on long-term outcomes after seeking treatment. Aim To assess continuation rates of medical treatments and rates of... Read More about Medical treatment for heavy menstrual bleeding in primary care: 10-year data from the ECLIPSE trial.

Identifying Patients with Bicuspid Aortic Valve Disease in UK Primary Care: A Case–Control Study and Prediction Model (2022)
Journal Article
Evans, W., Akyea, R. K., Weng, S., Kai, J., & Qureshi, N. (2022). Identifying Patients with Bicuspid Aortic Valve Disease in UK Primary Care: A Case–Control Study and Prediction Model. Journal of Personalized Medicine, 12(8), Article 1290. https://doi.org/10.3390/jpm12081290

Bicuspid aortic valve disease (BAV) is the most common congenital heart condition, and early detection can improve outcomes for patients. In this case–control study, patients with a diagnosis of BAV were identified from their electronic primary-care... Read More about Identifying Patients with Bicuspid Aortic Valve Disease in UK Primary Care: A Case–Control Study and Prediction Model.

Comparison of Risk of Serious Cardiovascular Events after Hemorrhagic versus Ischemic Stroke: A Population-Based Study (2022)
Journal Article
Akyea, R. K., Georgiopoulos, G., Iyen, B., Kai, J., Qureshi, N., & Ntaios, G. (2022). Comparison of Risk of Serious Cardiovascular Events after Hemorrhagic versus Ischemic Stroke: A Population-Based Study. Thrombosis and Haemostasis, 122(11), 1921-1931. https://doi.org/10.1055/a-1873-9092

Background Patients with ischemic stroke are considered a very high risk population for subsequent cardiovascular events and guidelines recommend intensive preventive strategies. However, there is no clear recommendation that patients with hemorrhagi... Read More about Comparison of Risk of Serious Cardiovascular Events after Hemorrhagic versus Ischemic Stroke: A Population-Based Study.

Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study (2022)
Journal Article
Walton, H., Simpson, A., Ramsay, A. I., Hudson, E., Hunter, A., Jones, J., …Fulop, N. J. (2022). Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study. Orphanet Journal of Rare Diseases, 17, Article 171. https://doi.org/10.1186/s13023-022-02321-w

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 im... Read More about Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study.

A randomised controlled trial investigating the clinical and cost-effectiveness of Alpha-Stim AID cranial electrotherapy stimulation (CES) in patients seeking treatment for moderate severity depression in primary care (Alpha-Stim-D Trial) (2022)
Journal Article
Patel, S., Boutry, C., Patel, P., Craven, M. P., Guo, B., Zafar, A., …Morriss, R. (2022). A randomised controlled trial investigating the clinical and cost-effectiveness of Alpha-Stim AID cranial electrotherapy stimulation (CES) in patients seeking treatment for moderate severity depression in primary care (Alpha-Stim-D Trial). Trials, 23(1), Article 250. https://doi.org/10.1186/s13063-022-06192-1

Background: Major depression is the second leading cause of years lost to disability worldwide and is a leading contributor to suicide. However, first-line antidepressants are only fully effective for 33%, and only 40% of those offered psychological... Read More about A randomised controlled trial investigating the clinical and cost-effectiveness of Alpha-Stim AID cranial electrotherapy stimulation (CES) in patients seeking treatment for moderate severity depression in primary care (Alpha-Stim-D Trial).

Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study (2022)
Journal Article
Morris, S., Hudson, E., Bloom, L., Chitty, L. S., Fulop, N. J., Hunter, A., …Walton, H. (2022). Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study. Health and Social Care Delivery Research, 10(5), 1-220. https://doi.org/10.3310/lnzz5321

This study found evidence of a lack of co-ordinated care for people affected by rare diseases, which could have negative impacts on the physical and mental health of patients and families.

Development of models of care coordination for rare conditions: A qualitative study (2022)
Journal Article
Walton, H., Simpson, A., Ramsay, A. I., Hunter, A., Jones, J., Ng, P. L., …Fulop, N. J. (2022). Development of models of care coordination for rare conditions: A qualitative study. Orphanet Journal of Rare Diseases, 17, Article 49. https://doi.org/10.1101/2021.11.16.21266395

Introduction: Improving care coordination for people with rare conditions may help to reduce burden on patients and carers and improve the care that patients receive. We recently developed a taxonomy of different ways of coordinating care for rare co... Read More about Development of models of care coordination for rare conditions: A qualitative study.