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• W3202319863 abstract "BACKGROUND An important proportion of people who sustain a mild Traumatic Brain Injury (TBI) experience persisting symptoms, and may therefore present a number of rehabilitation needs. The care journeys for this patient population are not well understood, and there are few clinical practice guidelines defining care pathways in rehabilitation settings. The aim of the work presented in this thesis was to explore the current state of rehabilitation for this patient population with a view to developing robust care pathways. METHODS This project used a combination of traditional and novel approaches to healthcare research and is divided into three parts: 1) an overview of the literature including a scoping review aiming to clarify the current understanding and approach to care for people with Post-Traumatic Brain Injury Syndrome (P-TBI-S), and a detailed analysis of case reports to highlight any points of convergence in the care journeys of a heterogeneous group of patients with P-TBI-S. 2) an exploration of patient education materials about persisting TBI symptoms and a mapping of current care pathways through the interview of clinical and support stakeholders in the local area. 3) a collaborative project with brain injury survivors to explore new avenues for patient self-management support and research on service use and support needs. RESULTS The review of the literature showed a lack of research on the wide scope of care pathways from acute to community settings, including a paucity of care guidelines for the rehabilitation of patient with persisting TBI symptoms. The analysis of case reports showed common features in both functional deficits and patterns of access to services between seemingly highly heterogeneous patients. Educational materials distributed to patients at discharge from A&E departments across England following mild TBI are comparable but downplay the risk of developing persisting symptoms. They are vague in their self-management advice and signposting towards further care and support services. Care routes are fragmented, especially in the transition from acute to community settings. The lack of an effective pathway leads to the emergence of care silos and heightens the risk for patients to fall through the gaps of care at numerous points along their journey. General practitioners are key in identifying atypical recovery patterns and redirecting patients towards appropriate services, of which the availability and accessibility was unequal across the different catchment areas of care providers. Currently, the management of these patients largely consists of education and reassurance, and symptomatic treatment, partly due to limited and inconsistent referral routes. A concept mobile app to support self-management, (including promoting re-access to care services as needed, and enable large-scale service use research) was co-developed in collaboration with brain injury survivors. CONCLUSIONS There is little research on the care journeys of people with persisting symptoms following TBI, leading to a lack of practice guidelines. The lack of clinical practice guidelines is associated with a lack of defined rehabilitation pathways for people with persisting symptoms following mTBI, both at national and local levels. Access to further care depends on service availability and accessibility, and there are no clear referral routes. At present, care largely relies on education, reassurance and symptomatic management. However, the lack of oversight of patients’ care journeys and defined pathways leads to the emergence of care silos, thus increasing the risk for patients to fall through the gaps of care. More research is needed to explore patients’ care journeys, evaluate outcomes of care and develop robust rehabilitation care pathways for this patient group." @default.
• W3202319863 created "2021-10-11" @default.
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• W3202319863 date "2020-04-01" @default.
• W3202319863 modified "2023-09-27" @default.
• W3202319863 title "Care pathways in traumatic brain injury rehabilitation: searching for the missing pieces" @default.
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