Continuity and care coordination of primary health care: a scoping review
Background Healthcare coordination and continuity of care conceptualize all care providers
and organizations involved in health care to ensure the right care at the right time. However …
and organizations involved in health care to ensure the right care at the right time. However …
Development of models of care coordination for rare conditions: a qualitative study
H Walton, A Simpson, AIG Ramsay, A Hunter… - Orphanet Journal of …, 2022 - Springer
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 …
burden on patients and carers and improve the care that patients receive. We recently …
Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review
Rare Diseases (RDs) in adolescents are characterized by low frequency and clinical
heterogeneity, are chronic and deliberating and demand a multidisciplinary approach as …
heterogeneity, are chronic and deliberating and demand a multidisciplinary approach as …
Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals
H Walton, PL Ng, A Simpson, L Bloom, LS Chitty… - Orphanet Journal of …, 2023 - Springer
Background Poorly coordinated care can have major impacts on patients and families
affected by rare conditions, with negative physical health, psychosocial and financial …
affected by rare conditions, with negative physical health, psychosocial and financial …
Key challenges for hub and spoke models of care–a report from the 1st workshop of the EHC think tank on hub and spoke treatment models
A Bok, D Noone, N Skouw-Rasmussen - The Journal of Haemophilia …, 2022 - sciendo.com
J Haem Pract 2022; 9 (1). doi: 10.2478/jhp-2022-0003 www. haemnet. com 21 will
collaborate to ensure that patients' needs are prioritised. This model may also be …
collaborate to ensure that patients' needs are prioritised. This model may also be …
Translation, adaptation, and validation of the Care Coordination Instrument for cancer patients
A Werner, A Steckelberg, A Strobel, A Wienke… - BMC Health Services …, 2025 - Springer
Background Cancer requires interdisciplinary intersectoral care. The Care Coordination
Instrument (CCI) captures patients' perspectives on cancer care coordination. We aimed to …
Instrument (CCI) captures patients' perspectives on cancer care coordination. We aimed to …
Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey
J Jones, M Cruddas, A Simpson, N Meade… - Orphanet Journal of …, 2024 - Springer
Background Although individually rare, collectively, rare conditions are common and affect a
large number of people and are often chronic, life threatening and affect multiple body …
large number of people and are often chronic, life threatening and affect multiple body …
[HTML][HTML] Rare Care–Cross-Sector Care Coordination
G Baynam, J Siffleet, T Abbott, S Baker, D Dye… - European Journal of …, 2025 - Elsevier
Rare and undiagnosed diseases collectively represent a global health priority, presenting
distinct challenges for healthcare systems due to their low prevalence, cumulative …
distinct challenges for healthcare systems due to their low prevalence, cumulative …
The Metamorphosis, struggling to adapt to a new condition. The lived experience of patients with Thrombotic microangiopathies diagnosed in the ICU. A qualitative …
N Kentish-Barnes, V Souppart, Z Cohen-Solal… - Journal of Critical …, 2023 - Elsevier
Background Using qualitative interviews, our objective was to better understand the
experience of patients with Thrombotic microangiopathies (TMA), from discovering their …
experience of patients with Thrombotic microangiopathies (TMA), from discovering their …
Turner syndrome: skin, liver, eyes, dental and ENT evaluation should be improved
J Lam, S Stoppa-Vaucher, MC Antoniou… - Frontiers in …, 2023 - frontiersin.org
Introduction Turner syndrome association with multi-organ system comorbidities highlights
the need for effective implementation of follow-up guidelines. We aimed to assess the …
the need for effective implementation of follow-up guidelines. We aimed to assess the …