Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach

Disabato, Jennifer A.; Cook, Paul F.; Hutton, Laura; Dinkel, Tristen; Levisohn, Paul M.

doi:10.1016/j.pedn.2015.06.014

Cited by 31 publications

(24 citation statements)

References 29 publications

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“…There are several assessment tools available that can be used to measurewhat has been referred to as transition readiness. The plan is expected to be fluid and responsive to the needs of the adolescent and emerging adult based upon continuous assessment of needs and readiness (AAP et al, 2011;Celona, 2015;Disabato, Cook, Hutton, Dinkel, & Levisohn, 2015;Ferris et al, 2015;Fredericks et al, 2010;Moynihan, Saewyc, Whitehouse, Paone, & McPherson, 2015;Speller-Brown et al, 2015;Uzark et al, 2015;Wood et al, 2014). 5.…”

Section: Extended Hct Preparationmentioning

confidence: 99%

“…Ideally, one nurse can assume the role of the HCTC coordinating the preparation of patients to move into the adult care world. The coordinating care must include clinical, psychosocial, and educational needs and coordinate all for a successful transition (Betz & Redcay, 2005: Disabato et al, 2015Hopper et al, 2014;Maturo et al, 2015). 7.…”

Section: Extended Hct Preparationmentioning

confidence: 99%

“…Emerging adults need to acquire the self-management knowledge and skills to ensure independence with daily treatment regimen as appropriate for their developmental level. The pediatric nurse plays a key role educating patients about their disease, and the self care skills required to maintain health and wellbeing including emergency preparedness as they transition to adult care (Disabato et al, 2015;Findley et al, 2015). 8.…”

Section: Extended Hct Preparationmentioning

confidence: 99%

“…9. The HCTC and/or the pediatric nursing staff should coordinate referrals for services to promote a successful transition, including but not limited to and as needed (Betz et al, 2014;Betz & Redcay, 2005;Disabato et al, 2015). a.…”

Section: Extended Hct Preparationmentioning

confidence: 99%

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SPN Position Statement: Transition of Pediatric Patients Into Adult Care

Betz

2017

Journal of Pediatric Nursing

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SPN leadership has been active in organizing various task forces composed of members with recognized expertise and interest to work together and produce quality documents that provide guidance to the practice of pediatric nursing. The most recently published position paper follows this introduction and was produced by a team chaired by Cecily L. Betz PhD, RN, FAAN. These activities demonstrate fulfillment of SPN's Mission, Vision and Core Values, which are: Mission The mission of the Society of Pediatric Nurses is to advance the specialty of pediatric nursing through excellence in education, research and practice. Vision To be the premier resource for nurses caring for children and their families. Core Values Commitment Accountability to members and to decision making that contributes to the profession of pediatric nursing; dedication to lifelong learning, generation of new knowledge and scholarship, innovation, and advocacy for exceptional pediatric nursing care of children and families. Integrity Respectful, ethical, transparent, and fiscally responsible. Consistent expectations of collaboration and alignment of intellectual, professional, and organizational values. Leadership Visionary, leading with one voice, seeking diversity of thought, inspiring and advancing the leader qualities and strengths of the membership. Excellence Development and dissemination of evidence based standards and research based knowledge that transcends into exceptional quality outcomes for the nursing care of children and families and the promotion of the specialty of pediatric nursing.

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Section: Extended Hct Preparationmentioning

confidence: 99%

Section: Extended Hct Preparationmentioning

confidence: 99%

Section: Extended Hct Preparationmentioning

confidence: 99%

Section: Extended Hct Preparationmentioning

confidence: 99%

See 2 more Smart Citations

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

Betz

2017

Journal of Pediatric Nursing

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“…Until now, there have been only two studies using the PAM ® in a transitional context for adolescents with chronic conditions (Disabato, Cook, Hutton, Dinkel, & Levisohn, ; Huang et al, ). To make the instrument applicable for children and adolescents with chronic conditions, it is important that both the specific context of chronic condition is considered and the items are easy to understand (Bell, ; De Leeuw, Borgers, & Smits, ).…”

Section: Introductionmentioning

confidence: 99%

Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: PAM^® 13 for Adolescents

Bomba

Markwart

Mühlan

et al. 2017

Research in Nursing & Health

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Measuring adolescent patients' engagement in their health care is especially important in preparing for chronically ill adolescents' transition into adult care. In this study, we aimed to create an adolescent version of the German language Patient Activation Measure (PAM-13-D) originally tested in in adults and psychometrically test the adapted measure (PAM 13 for Adolescents). After linguistic and content-related adaptations, the PAM 13 for Adolescents was tested in a large sample of adolescents with different chronic conditions (N = 586, mean age 17.5 years, SD = 1.4) in 40 health centers. Internal consistency was assessed with Cronbach's alpha and test-retest reliability with Pearson correlation. Convergent and divergent validity were calculated with Pearson correlations between the two IE-4 scales (internal and external Locus of Control) and the PAM 13 for Adolescents. Known-group validity (type 1 diabetes vs. IBD, higher vs. lower education level) was checked by Mann-Whitney-U-tests. The PAM 13 for Adolescents showed good test-retest reliability (rtt = .68), internal consistency (α = .79) and demonstrated good validity. The original structure of the PAM 13-D was replicated. Rasch analysis using the partial credit model was used to investigate the operating characteristics of the items. Rasch analysis indicated a sufficient fit of 12 of the 13 items. PAM 13 for Adolescents is the first instrument measuring patient activation of adolescents with chronic conditions in a broad age range. Patient activation level can be used by clinicians to better plan and structure transition processes.

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Transitional Care for Young People with Movement Disorders: Consensus‐Based Recommendations from the MDS Task Force on Pediatrics

Pringsheim

Batla

Shalash

et al. 2023

Movement Disord Clin Pract

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Background The International Parkinson and Movement Disorders Society (MDS) set up a working group on pediatric movement disorders (MDS Task Force on Pediatrics) to generate recommendations to guide the transition process from pediatrics to adult health care systems in patients with childhood‐onset movement disorders. Methods To develop recommendations for transitional care for childhood onset movement disorders, we used a formal consensus development process, using a multi‐round, web‐based Delphi survey. The Delphi survey was based on the results of the scoping review of the literature and the results of a survey of MDS members on transition practices. Through iterative discussions, we generated the recommendations included in the survey. The MDS Task Force on Pediatrics were the voting members for the Delphi survey. The task force members comprise 23 child and adult neurologists with expertise in the field of movement disorders and from all regions of the world. Results Fifteen recommendations divided across four different areas were made pertaining to: (1) team composition and structure, (2) planning and readiness, (3) goals of care, and (4) administration and research. All recommendations achieved consensus with a median score of 7 or greater. Conclusion Recommendations on providing transitional care for patients with childhood onset movement disorders are provided. Nevertheless several challenges remain in the implementation of these recommendations, related to health infrastructure and the distribution of health resources, and the availability of knowledgeable and interested practitioners. Research on the influence of transitional care programs on outcomes in childhood onset movement disorders is much needed.

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Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach

Cited by 31 publications

References 29 publications

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: PAM^® 13 for Adolescents

Transitional Care for Young People with Movement Disorders: Consensus‐Based Recommendations from the MDS Task Force on Pediatrics

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Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach

Cited by 31 publications

References 29 publications

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: PAM® 13 for Adolescents

Transitional Care for Young People with Movement Disorders: Consensus‐Based Recommendations from the MDS Task Force on Pediatrics

Contact Info

Product

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Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: PAM^® 13 for Adolescents