Modifiable factors related to transition readiness in adolescents and young adults with epilepsy

Smith, Ashley; Gutierrez‐Colina, Ana M.; Roemisch, Emily; Hater, Brooke; Combs, Angela; Shoulberg, Amanda M; Modi, Avani C.

doi:10.1016/j.yebeh.2020.107718

Cited by 10 publications

(12 citation statements)

References 44 publications

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“…In terms of diseases that affect adolescent development, such as epilepsy, patients with epilepsy tend to have barriers to knowledge-related disease, psychosocial and cognitive function [ 46 ]. However, a recent study focusing on the factors related to transition readiness skills in epilepsy patients showed that age was the only predictor of transition readiness [ 47 ]. For a chronic disease like diabetes mellitus, a Korean study demonstrated that factors associated with transition readiness were self-management competency and age [ 48 ].…”

Section: Discussionmentioning

confidence: 99%

Assessment of transition readiness in adolescents in Thailand with rheumatic diseases: a cross-sectional study

et al. 2021

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Background Most childhood-onset rheumatic diseases are chronic health conditions, which need long-term care throughout adulthood. A well-organized transition care is challenging and patient assessment of transition skills is needed for transfer preparation to an adult care setting. The Transition Readiness Assessment Questionnaire (TRAQ) is used to assess transition skills in chronically ill patients. Currently, limited transition skill assessment data exist in pediatric patients with rheumatic diseases, especially in Asian countries. This study aimed to determine the transition readiness skills in patients with rheumatic diseases and ascertain predictive factors contributing to high transition readiness skills. Methods This is a cross-sectional study. All patients with rheumatic diseases aged 15–20 years were recruited. The TRAQ was cross-culturally adapted into the Thai language with good internal consistency and reliability. Patients completed the Thai TRAQ at the recent clinic visit and took the retest at a 2-week interval. Demographic data, baseline characteristics, clinical manifestations, and disease status were collected. Descriptive and logistic regression analyses were performed. Results A total of 111 patients with a mean age of 17.4 ± 1.8 years were included. Median (IQR) disease duration was 6.4 (3.2–9.0) years. The most common rheumatic disease was juvenile idiopathic arthritis (48.6%), followed by systemic lupus erythematosus (35.1%). The mean TRAQ score was 3.85 ± 0.69. Independent visits (OR 4.35, 95% CI 1.23–15.37) was a predictor of a high TRAQ score. Furthermore, dependent visits (OR 7.84, 95% CI 2.41–25.50) was a predictor of low TRAQ score in the “appointment keeping” domain, whereas inactive disease (OR 4.54, 95% CI 1.25–16.55) was a predictor of a low TRAQ score in “tracking health issues” domain. Lack of knowledge and skills on health insurance coverage, financial management, appointment arrangement, and coping with their illness were issues causing lower TRAQ score. Conclusions Patients, who had independent visits, had a higher chance to obtain higher TRAQ scores, whereas patients, who had an inactive disease or dependent visits, had less transition readiness skills. Physicians and parents should prepare to transfer patients to adult care settings, mainly encouraging independent living skills.

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Section: Discussionmentioning

confidence: 99%

Assessment of transition readiness in adolescents in Thailand with rheumatic diseases: a cross-sectional study

et al. 2021

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“…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]. Therefore, the need to perform a standardized evaluation of patient experience to identify key features of the transitional process and the outcomes defining successful transitional care recently emerged [21,48]. Notwithstanding, the recommended age for an effective transition has been identified as between 12 and 14 years old [51].…”

Section: Discussionmentioning

confidence: 99%

“…The transition to a care process is different from the mere transfer to care as it focuses on the individual experiences and needs of the patient and includes the multisystemic coordination among different health professionals involved in the education of a patient and his/her family [20]. The consequences of poor transition planning can include increases in healthcare expenditures and a decreased quality of life [21]. The American Epilepsy Society [22] recommends introducing transition to patients of around 10-13 years of age; notwithstanding, empirical research on the best practices to assist with youth transition is limited [23].…”

Section: Introductionmentioning

confidence: 99%

“…These indications help clinicians address selfmanagement of health and improve the health-related skills of young patients and their caregivers [24]. Multi-wave assessment of transition readiness can be crucial to evaluate a patient's ability to transition successfully in terms of disease knowledge, self-management skills, and expectations from healthcare providers [21]. The literature showed that young patients with epilepsy experiencing high transition readiness also reported a high quality of life [26][27][28] and that certain demographic variables (e.g., socio-economic status, race/ethnicity) may be associated with a higher likelihood to successfully utilize transition readiness skills [29].…”

Section: Introductionmentioning

confidence: 99%

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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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“…6,7 SMART is a theoryand data-driven framework that includes multisystem-level barriers and facilitators of transition readiness. 5 In the 10 years since its initial content validation, 8 SMART has been adapted to account for disease-specific factors within several pediatric populations, including type 1 diabetes, 9 epilepsy, 10 and inflammatory bowel disease. 11 It includes preexisting factors with which individuals enter the transition process and which might directly impact transfer or indirectly impact transfer through more specific transition readiness factors.…”

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confidence: 99%

An Updated Equitable Model of Readiness for Transition to Adult Care

Prussien,

Crosby,

Faust

et al. 2024

JAMA Pediatr

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ImportanceDespite elevated health risks during young adulthood, many adolescents and young adults with serious health care needs face barriers during the transfer to an adult specialty practitioner, and health disparities may occur during the transition.ObjectiveTo validate the content of an updated Social-Ecological Model of Adolescent and Young Adult Readiness for Transition to Promote Health Equity (SMART-E) in a group of adolescents and young adults with sickle cell disease (SCD) and their supports.Design, Setting, and ParticipantsHealth equity framework components were reviewed. Systems of power (eg, institutional and practitioner bias) and environments or networks (eg, peer or school support) were added as SMART-E preexisting factors, and health literacy was included within readiness factors. Adolescents and young adults aged 16 to 29 years with SCD, caregivers, and practitioners participated in this convergent, mixed-methods study within Children’s Hospital of Philadelphia between January and August 2022.Main Outcomes and MeasuresContent validity was assessed through nominations of top 3 most important transition barriers prior to interviews and focus groups, ratings on importance of SMART-E factors (0-4 scale; ratings &gt;2 support validity) after interviews and focus groups, nominations of 3 most important factors for transition and for health equity, and qualitative content analysis of interview transcripts.ResultsThe study enrolled 10 pediatric adolescents and young adults (mean [SD] age, 18.6 [2.9] years; 4 female and 6 male), 10 transferred adolescents and young adults (mean [SD] age, 22.9 [2.1] years; 8 female and 2 male), 9 caregivers (mean [SD] age, 49.8 [8.7] years; 5 female and 4 male), and 9 practitioners (mean [SD] age, 45.6 [10.5] years; 8 female and 1 male). Quantitative ratings supported the content validity of SMART-E and met established criteria for validity. Systems of power was the most endorsed transition barrier (14 of 38 participants) reported prior to interviews and focus groups. After the interview, participants endorsed all SMART-E factors as important for transition, with new factors systems of power and environments and networks rated at a mean (SD) 2.8 (1.23) and 3.1 (0.90), respectively, on a 0 to 4 scale of importance. The most important factors for transition and equity varied by participant group, with all factors being endorsed, supporting the comprehensiveness of SMART-E. Qualitative data corroborated quantitative findings, further supporting validity, and minor modifications were made to definitions.Conclusions and RelevanceSMART-E obtained initial content validation with inclusion of health equity factors for adolescents and young adults with SCD, caregivers, and practitioners. The model should be evaluated in other populations of adolescents and young adults with chronic disease.

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Modifiable factors related to transition readiness in adolescents and young adults with epilepsy

Cited by 10 publications

References 44 publications

Assessment of transition readiness in adolescents in Thailand with rheumatic diseases: a cross-sectional study

Assessment of transition readiness in adolescents in Thailand with rheumatic diseases: a cross-sectional study

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

An Updated Equitable Model of Readiness for Transition to Adult Care

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