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Emergency department (ED) visits for epilepsy are common, costly, and often clinically unnecessary. Configuration of care pathways (CPs) that could divert people away from ED offer an alternative. The aim was to measure patient and carer preferences for alternative CPs and to explore the feasibility of implementing the preferred CPs in the National Health Service (NHS) England with a wider group of stakeholders.
Methods
Formative work (provider survey, service-user interviews, knowledge exchange, and think-aloud piloting) informed a discrete choice experiment (DCE) with six attributes: access to care plan, conveyance, time, epilepsy specialist today, general practitioner (GP) notification, and epilepsy specialist follow-up. This was hosted online with random assignment to two of three scenarios (home, public, or atypical). Logistic regression generated preference weights that were used to calculate the utility of CPs. The highest ranked CPs plus a status quo were discussed at three online knowledge exchange workshops. The nominal group technique was used to ascertain stakeholder views on preference evidence and to seek group consensus on optimal feasible alternatives.
Results
A sample of 427 people with epilepsy and 167 friends or family completed the survey. People with epilepsy preferred paramedics to have access to care plan, non-conveyance, one to three hours, epilepsy specialists today, GP notification, and specialist follow-up within two to three weeks. Family and friends differed when considering atypical seizures, favoring conveyance to urgent treatment centers and shorter time. Optimal configuration of services from service users’ perspectives outranked current practice. Knowledge exchange (n=27 participants) identified the optimal CP as feasible but identified two scenarios for resource reallocation: care plan substitutes specialist advice today and times of strain on NHS resources.
Conclusions
Preferences differed to current practice but had minimal variation by seizure type or stakeholder. This study clearly identified optimal and feasible alternative CPs. The mixed-methods approach allowed for robust measurement of preferences, whilst knowledge exchange examined feasibility to enhance implementation of optimal alternative CPs in the future.
The National Institute of Clinical Excellence suggested black ethnic minorities with epilepsy have different cultural, communicative and health-care needs. However, little is known about these despite increasing migration of black African and Caribbean people to Europe. This study aims to explore perceptions and experiences of epilepsy among black African and Caribbean people in South London.
Methods
Semi-structured interviews were undertaken with 11 participants, to examine their beliefs and perceptions of living with epilepsy. Interviews were recorded, transcribed, codes generated and thematic analysis undertaken.
Results
African participants described supernatural causes for epilepsy and experienced considerable stigma whereas Caribbean participants described epilepsy as a ‘normal illness’. However, both African and Caribbean participants experienced social restrictions arising from their epilepsy.
Conclusions
The findings of higher levels of perceived stigma and social restriction seen in African participants may be a continuation of beliefs reported in participants’ country of origin. There is also evidence that views regarding epilepsy transition through generations vary depending on place of birth.
Practical Implications
Health-care professionals need to be aware of and engage with the particular beliefs and concerns of black African and Caribbean people to achieve equity in health outcomes.
We explored the role of baseline characteristics of 105 patients who presented with fatigue in primary care in determining outcome following either graded exercise or cognitive–behavioural therapy. Meeting the criteria for chronic fatigue syndrome was the most powerful predictor of poor outcome and this negative effect was enhanced by greater functional impairment or greater perceived negative consequences, but was not further enhanced by both.
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