Failed transition to independence in young adults with epilepsy: The role of loneliness.

PURPOSE: Many young adults with epilepsy are still living with their parents ('failed transition to independence') despite reaching the adult age. This study evaluated patient-related variables and measures of loneliness correlated to 'failed transition to independence' in adults, 25-30 years of age, with (childhood-onset) epilepsy. METHODS: Patients with (childhood-onset) epilepsy and 25-30 years of age were recruited from Epilepsy Center Kempenhaeghe. Inclusion criteria were: diagnosis of (childhood-onset) epilepsy, and an (estimated) IQ > 70. Patients were sent one questionnaire and informed consent was obtained from all participants. Questions included the patient's level of functioning and satisfaction on three transitional domains (medical status, educational/vocational status, independence/separation from their parents), satisfaction with their friendships, and the validated De Jong-Gierveld Loneliness Scale. 'Transition to independence' was defined and categorized in a continuum with scores ranging from 0 ('Failed transition') to 4 for all patients. A Bivariate Correlation analysis was used to compute correlations between patient characteristics and failed transition to independence. RESULTS: 59 patients were included in the analysis, of which 19 (32.2%) had a failed transition to independence. A statistically significant correlation was found between transition to independence and the social loneliness scale (p =  0.047) and the total loneliness scale (p =  0.04), and for the patients self-reported satisfaction with their independence/separation from parents (p =  0.01) and friendships (p =  0.04). CONCLUSIONS: Adults with epilepsy with a failed transition to independence experience loneliness and are not satisfied with their current developmental and social situation.

Long-term effects of a multidisciplinary transition intervention from paediatric to adult care in patients with epilepsy.

PURPOSE: To evaluate the long-term effects of a multidisciplinary transition intervention compared to the impact of patient-related intrinsic factors on the improvement in medical and psychosocial outcome. METHODS: All patients who visited our multidisciplinary Epilepsy Transition Clinic between March 2012 and September 2014 were invited to participate (n=114). Patients were sent one questionnaire and informed consent was obtained. Questions included the patient's level of functioning on three transitional domains and a list with medical health care workers. Previously defined scores on three transitional domains and the risk profile score were re-evaluated. Past and current patient characteristics were compared using descriptive statistics. Discriminant analyses were used to determine the influence of patient-related intrinsic factors (defined as the risk factors from our previous study) and a multidisciplinary transition intervention on the improvement of medical and psychosocial outcome. RESULTS: Sixty-six out of 114 invited participants (57.9%) completed the questionnaire. Discriminant analyses showed that the patient-related intrinsic factors combined proved a strong predictor for improvement in medical outcome (72.7%) and relatively strong for educational/vocational outcome (51.5%). The transition interventions are a relative strong predictor of improvement in medical outcome (56.1%), educational/vocational outcome (53.0%) and improvement in the overall risk score (54.5%). CONCLUSION: Based on the overall improvement of psychosocial outcome in most patients, and the influence of a transition intervention on medical, educational/vocational outcome and the overall risk score, it is likely that adolescents with epilepsy benefit from visiting a multidisciplinary epilepsy transition clinic.

Evaluation of a multidisciplinary epilepsy transition clinic for adolescents.

INTRODUCTION: The main goal of the transition clinic is to explore and optimize medical issues during transition from adolescence to adulthood, and to ease the transition into adult care. However, only limited data on the process and outcomes of transitional care in clinical practice are available. OBJECTIVE: To describe the process and outcomes of an Epilepsy Transition Clinic in a tertiary referral center in The Netherlands. METHODS: Data were collected from patients with epilepsy (aged 15-25 years), who visited the transition clinic between March 2012 and September 2014. RESULTS: The Epilepsy Transition Clinic is staffed with a multidisciplinary team including a neurologist/epileptologist, clinical neuropsychologist, a social worker and an educationalist/occupational counselor, all with knowledge of paediatric and adult medical and developmental issues. In total, 117 patients with epilepsy were included in the analysis. After consultation, 89 patients received a diagnostic work-up (76.1%), change in AED prescription (n = 64, 54.7%), or consultation/tailored advice (n = 73, 62.4%). In fourteen patients (12.0%) the epilepsy diagnosis was changed. Nineteen patients (16.2%) had complete epilepsy remission for over one year. Forty-three patients (36.8%) were referred to adult care. CONCLUSION: This study describes a multidisciplinary epilepsy transition clinic staffed by a neurologist/epileptologist, neuropsychologist, a social worker and an educationalist/occupational counselor. Diagnostic work-up and evaluation of psychosocial and educational/vocational status during adolescence are strongly recommended.

Developing from child to adult: Risk factors for poor psychosocial outcome in adolescents and young adults with epilepsy.

INTRODUCTION: Childhood-onset epilepsy during the years of transition to adulthood may affect normal social, physical, and mental development, frequently leading to psychosocial and health-related problems in the long term. OBJECTIVE: This study aimed to describe the main characteristics of patients in transition and to identify risk factors for poor psychosocial outcome in adolescents and young adults with epilepsy. METHODS: Patients with epilepsy, 15-25years of age, who visited the Kempenhaeghe Epilepsy Transition Clinic from March 2012 to December 2014 were included (n=138). Predefined risk scores for medical, educational/occupational status, and independence/separation/identity were obtained, along with individual risk profile scores for poor psychosocial outcome. Multivariate linear regression analysis and discriminant analysis were used to identify variables associated with an increased risk of poor long-term psychosocial outcome. RESULTS: Demographic, epilepsy-related, and psychosocial variables associated with a high risk of poor long-term outcome were lower intelligence, higher seizure frequency, ongoing seizures, and an unsupportive and unstable family environment. Using the aforementioned factors in combination, we were able to correctly classify the majority (55.1%) of the patients regarding their risk of poor psychosocial outcome. CONCLUSION: Our analysis may allow early identification of patients at high risk of prevention, preferably at pretransition age. The combination of a chronic refractory epilepsy and an unstable family environment constitutes a higher risk of transition problems and poor outcome in adulthood. As a consequence, early interventions should be put into place to protect youth at risk of poor transition outcome.

Transition to adult medical care for adolescents with epilepsy.

INTRODUCTION: During transition to adult medical care, the adolescent with epilepsy is especially prone to emotional, mental, physical, and social developmental difficulties, leading to stigma and poor psychosocial and socioeconomic outcome in the long term. OBJECTIVES: The aim of this review is twofold: to describe the psychosocial and medical transition from adolescence to adulthood and to evaluate the most effective model for transitional services in adolescents with epilepsy. METHODS: We searched PubMed for quantitative and qualitative data about transition from adolescence to adulthood in patients with epilepsy. RESULTS: A total of 49 articles were retrieved. We reviewed personal, psychosocial, and medical issues during transition and their long-term individual and societal consequences. Identifying risk factors for poor transition can lead to appropriate interventions for patients and their family. Although the concept of multidisciplinary transition care for adolescents with epilepsy is widely recognized, only a few transition clinics have been established. There is lack of evidence for their quality and cost-effectiveness. CONCLUSION: In addition to medical problems, more attention should be paid to the risk of psychosocial problems during transition from pediatric to adult care. The implementation of transition care for adolescents with epilepsy is considered beneficial; however, its effectiveness should be further investigated.