Exploring the role of knowledge of condition and psycho-social profiles of young people with epilepsy during transition

Gray, Victoria; palmer, lucy; Whelby, Kayleigh; Vinten, Jacqui; Gait, Lucy

doi:10.1016/j.yebeh.2017.05.003

Cited by 9 publications

(3 citation statements)

References 36 publications

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“…A recent systematic review highlighted that transitional plans for the transfer from pediatric to adult care are not often available and evidence on the efficacy of transition programs for young people is limited [48]. Notwithstanding, several psychological problems are frequent (e.g., anxiety, depression) [49] and adversely affect the transition process [50]. Transition programs are not adapted to the age-specific needs of patients and there is no consensus on the evaluation of adequate transitions, the impact on patient experience, and population costs [48].…”

Section: Discussionmentioning

confidence: 99%

Clinical, Sociodemographic, and Psychological Factors Associated with Transition Readiness in Patients with Epilepsy

Vacca,

Fernandes,

Veronese

et al. 2023

Brain Sciences

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Background: The transition to adult care for patients with epilepsy is a complicated clinical issue associated with adverse outcomes, including non-adherence to treatment, dropout of medical care, and worse prognosis. Moreover, youngsters with epilepsy are notably prone to emotional, psychological, and social difficulties during the transition to adulthood. Transition needs depend on the type of epilepsy and the epileptic syndrome, as well as on the presence of co-morbidities. Having a structured transition program in place is essential to reduce poor health consequences. A key strategy to optimize outcomes involves the use of transition readiness and associated factors assessment to implement the recognition of vulnerability and protective aspects, knowledge, and skills of these patients and their parents. Therefore, this study aims to provide a comprehensive framework of clinical and psychosocial aspects associated with the transition from pediatric to adult medical care of patients with epilepsy. Methods: Measures examining different aspects of transition readiness and associated clinical, socio-demographic, psychological, and emotional factors were administered to 13 patients with epilepsy (Mage = 22.92, SD = 6.56) with (n = 6) or without (n = 7) rare diseases, and a respective parent (Mage = 56.63, SD = 7.36). Results: patients showed fewer problems in tracking health issues, appointment keeping, and pharmacological adherence as well as low mood symptoms and moderate resiliency. Moreover, they referred to a low quality of sleep. Notably, parents of patients with rare diseases reported a lower quality of sleep as compared to the other group of parents. Conclusions: Increasing awareness around transition readiness is essential to promote self-management skills of patients with epilepsy and their parents. Anticipating the period of transition could be beneficial, especially to prevent problematic sleep patterns and promote independence in health care management. Parents of patients with epilepsy and rare diseases should be monitored for their mental status which can affect patients’ well-being.

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Section: Discussionmentioning

confidence: 99%

Clinical, Sociodemographic, and Psychological Factors Associated with Transition Readiness in Patients with Epilepsy

Vacca,

Fernandes,

Veronese

et al. 2023

Brain Sciences

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show abstract

“…Nevertheless, one epilepsy patient attributed his increasing knowledge to the absence of parents in consultations. Indeed, the balance of patient and parental knowledge swings as care responsibilities shift through transition (Gray et al, 2017). Moreover, this expansion of knowledge appeared empowering, supporting findings that when parental withdrawal is well managed YP can see this as an opportunity for independence (Coyne et al, 2019; Crawford et al, 2021; Heath et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

“…The need for transitional care for patients with epilepsy is well established (Camfield et al, 2012; Lewis and Noyes, 2013). Epilepsy can have a significant psychosocial impact on YP during adolescence (Gray et al, 2017), with higher rates of mental health issues, and lower quality of life reported in those at transition age when compared to those without epilepsy (Healy et al, 2020). The expectations of self-management through transition means adolescent epilepsy patients are vulnerable to depression, poor self-confidence and self-esteem, and social maladjustment (Camfield and Camfield, 2014; Geerlings et al, 2015).…”

Section: Introductionmentioning

confidence: 99%

Stuck in transit: A qualitative study of the transitional care needs of young people with epilepsy and juvenile idiopathic arthritis

Wilson

Whittaker

Arnott

et al. 2022

J Child Health Care

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Transition services for young people with long-term conditions often fall short. This qualitative study explored perspectives on service features that enable effective transition in epilepsy and juvenile idiopathic arthritis. Patients, parents, clinicians and service commissioners took part in semi-structured interviews ( n = 18). Thematic analysis was used to identify key features, barriers and facilitators of effective transition across participant groups. Analysis led to the development of nine sub-themes which mapped to overarching domains of communication, capability, continuity and capacity. Findings include the need for age appropriate communication, the link between parental dependence, self-care and patient knowledge, the value of service integration for continuity and the impact of capacity on flexible and age appropriate transition services.

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Jugendliche und junge Erwachsene

Kurlemann

2020

Epileptische Anfälle Und Epilepsien Im Erwachsenenalter

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Exploring the role of knowledge of condition and psycho-social profiles of young people with epilepsy during transition

Cited by 9 publications

References 36 publications

Clinical, Sociodemographic, and Psychological Factors Associated with Transition Readiness in Patients with Epilepsy

Clinical, Sociodemographic, and Psychological Factors Associated with Transition Readiness in Patients with Epilepsy

Stuck in transit: A qualitative study of the transitional care needs of young people with epilepsy and juvenile idiopathic arthritis

Jugendliche und junge Erwachsene

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