Managing epilepsy in austerity – Evaluating the utility and value of the epilepsy specialist nurse in an open access model of service delivery. Aneurin Bevan Epilepsy Specialist Team (A.B.E.S.T.)

John, Keri; Tailor, Sunil Kumar; Anderson, J. Kyle; Lawthom, Charlotte

doi:10.1016/j.seizure.2019.01.007

Cited by 6 publications

(4 citation statements)

References 9 publications

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“…In addition, management of chronic diseases is shifting from the clinic to the patients' homes [38]. PRO-based follow-up and telephone consultations provided by nurses [39] are examples of care at a distance in epilepsy outpatient follow-up. John et al argue that telephone follow-up could replace traditional scheduled appointments unless there is a clear clinical need; for example, if the patient is considered vulnerable [39].…”

Section: Discussionmentioning

confidence: 99%

Sociodemographic, personal, and disease-related determinants of referral to patient-reported outcome-based follow-up of remote outpatients: a prospective cohort study

et al. 2020

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Purpose We examined the association between sociodemographic, personal, and disease-related determinants and referral to a new model of health care that uses patient-reported outcomes (PRO) measures for remote outpatient follow-up (PRObased follow-up). Methods We conducted a prospective cohort study among outpatients with epilepsy at the Department of Neurology at Aarhus University Hospital, Denmark. Included were all persons aged ≥ 15 years visiting the department for the first time during the period from May 2016 to May 2018. Patients received a questionnaire containing questions about health literacy, self-efficacy, patient activation, well-being, and general health. We also collected data regarding sociodemographic status, labour market affiliation, and co-morbidity from nationwide registers. Associations were analysed as time-to-event using the pseudo-value approach. Missing data were handled using multiple imputations. Results A total of 802 eligible patients were included in the register-based analyses and 411 patients (51%) responded to the questionnaire. The results based on data from registers indicated that patients were less likely to be referred to PRO-based follow-up if they lived alone, had low education or household income, received temporary or permanent social benefits, or if they had a psychiatric diagnosis. The results based on data from the questionnaire indicated that patients were less likely to be referred to PRO-based follow-up if they reported low levels of health literacy, self-efficacy, patient activation, wellbeing, or general health. Conclusion Both self-reported and register-based analyses indicated that socioeconomically advantaged patients were referred more often to PRO-based follow-up than socioeconomically disadvantaged patients.

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Section: Discussionmentioning

confidence: 99%

Sociodemographic, personal, and disease-related determinants of referral to patient-reported outcome-based follow-up of remote outpatients: a prospective cohort study

et al. 2020

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“…Empowering patients in this way could lead to successful implementation of an 'open access' model of care for epilepsy, which improves patient outcomes. 10 Increases in capacity of epilepsy specialist nurse telephone advice lines should be considered to meet the increased frequency of calls.…”

Section: Chronic Epilepsymentioning

confidence: 99%

Epilepsy care in the COVID-19 era

2020

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The COVID-19 pandemic will impact on how care for chronic conditions is delivered. We use epilepsy to exemplify how care for patients will be affected, and suggest ways in which healthcare systems can respond to deliver the most effective care. Where face-to-face outpatient appointments have been cancelled, telemedicine can facilitate remote clinical consultations for new and follow-up epilepsy clinic patients while reducing the risk of infection to both patients and healthcare staff. First-seizure patients will need investigation pathways rationalised, while those with chronic epilepsy will need to have reliable alternative avenues to access clinical advice. At the same time, neurologists should support emergency departments and acute medical units, advising on appropriate management of seizures and other acute neurological presentations. Ultimately, the revolution in our clinical practice is unlikely to cease after this pandemic, with reconfiguration of services likely to bring improvements in efficiency and convenience, and a reduced environmental impact.

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“…It is important to design interventions and programs around the needs of patients within each RND subcategory. Novel strategies outside of traditional healthcare models should be considered, such as nurse‐led clinics [22] multidisciplinary clinics [23,24] outpatient educational programs [25] and home‐based telemedicine [26] and telerehabilitation [27].…”

Section: Discussionmentioning

confidence: 99%

Prevalence and healthcare utilization of rare neurological diseases in Hong Kong: 2014–2018

Chiu

Chang

et al. 2021

Euro J of Neurology

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Background There has been increasing attention focused on the epidemiology of rare diseases (RDs) in recent years. Rare neurological diseases (RNDs) constitute a significant proportion of RDs; however, relevant research is still lacking. Methods A list of ICD‐10 codes corresponding to RNDs was compiled using adaptations from the Orphanet Classification of Rare Diseases, and classified into rare epilepsy, movement‐related, neurocutaneous, neuroimmune, neurometabolic and neurodegenerative, neuromuscular and other RNDs. Using the Clinical Data Analysis and Reporting System, which holds public hospital healthcare records of Hong Kong anonymously, we calculated the prevalence and healthcare utilization of RND patients between 2014 and 2018. The list of RNDs was also used to review relevant pharmacological trials within the International Clinical Trials Registry Platform between 2009 and 2018. Results The prevalence of RNDs in Hong Kong is 3.6 in 1,000 individuals. Patients with RNDs had frequent emergency department, outpatient and inpatient healthcare utilization. The average annual cost per patient is estimated at HKD 182,075 (€ 19,688). Different categories of RNDs showed different patterns of healthcare utilization. Moreover, there were only 677 RND‐related pharmacological trials during the study period, and no trial was found for 78% of RNDs. Conclusions This is one of the first population studies on the prevalence and healthcare utilization patterns of RNDs, with comprehensive reviews of RND‐related pharmacological research. It shows high healthcare utilization rates among patients with RNDs, as well as a wide research gap in many RNDs. We call for better attention and tailored healthcare for these patients.

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Managing epilepsy in austerity – Evaluating the utility and value of the epilepsy specialist nurse in an open access model of service delivery. Aneurin Bevan Epilepsy Specialist Team (A.B.E.S.T.)

Cited by 6 publications

References 9 publications

Sociodemographic, personal, and disease-related determinants of referral to patient-reported outcome-based follow-up of remote outpatients: a prospective cohort study

Sociodemographic, personal, and disease-related determinants of referral to patient-reported outcome-based follow-up of remote outpatients: a prospective cohort study

Epilepsy care in the COVID-19 era

Prevalence and healthcare utilization of rare neurological diseases in Hong Kong: 2014–2018

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