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

Geerlings, R.P.J.; Aldenkamp, Albert P.; Gottmer-Welschen, L.M.C.; Staa, AnneLoes van; Louw, A.J.A. de

doi:10.1016/j.seizure.2016.04.004

Cited by 23 publications

(23 citation statements)

References 17 publications

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“…Consistent with Aujoulat et al [15], the patient education program was designed to support adolescents with chronic conditions to empower them in different aspects of their life, for example, having a greater sense of self-efficacy, participating more actively in their decision-making processes and having the knowledge of specific aspects of their own health care. Higher patient empowerment is associated with better health-related outcomes [35].…”

Section: Plos Onementioning

confidence: 99%

Assessing empowerment as multidimensional outcome of a patient education program for adolescents with chronic conditions: A latent difference score model

et al. 2020

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The current study aims to examine the construct of empowerment in the context of a transition education program. Patient education programs strive to empower adolescents with chronic conditions to take responsibility for their own health care to manage their transition from pediatric to adult medicine. Our study aimed to identify the core components of patient empowerment and examined whether its components are responsive to a patient education program. Methods Data was collected in two longitudinal studies involving N = 723 adolescents with chronic conditions. We used Latent Difference Score models (LDSm) of: 1) self-efficacy (GSE), 2) transition competence (TCS), and 3) patient activation (PAM) to quantify the latent variable of patient empowerment (PE). Additionally, the LDSm were extended to analyze the effects of group affiliation (intervention vs. control) and participants' age on empowerment. Results PE was identifiable by the three components. The intervention group developed significantly higher scores of PE compared to the control group. Age (13-21 years) did not moderate the relation between group affiliation and PE.

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Section: Plos Onementioning

confidence: 99%

Assessing empowerment as multidimensional outcome of a patient education program for adolescents with chronic conditions: A latent difference score model

et al. 2020

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“…Expanding the disciplines on a team improved treatment of problems related to medication adherence in diabetic patients. A multidisciplinary approach may also improve transition of care to adult services and adolescent transition to independence (Geerlings, Aldenkamp, Gottmer-Welschen, van Staa, & de Louw, 2016).…”

Section: A Multidisciplinary Approachmentioning

confidence: 99%

A multidisciplinary approach to the clinical management of Prader–Willi syndrome

Duis

Wattum

Scheimann

et al. 2019

Molec Gen & Gen Med

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Background Prader–Willi syndrome (PWS) is a complex neuroendocrine disorder affecting approximately 1/15,000–1/30,000 people. Unmet medical needs of individuals with PWS make it a rare disease that models the importance of multidisciplinary approaches to care with collaboration between academic centers, medical homes, industry, and parent organizations. Multidisciplinary clinics support comprehensive, patient‐centered care for individuals with complex genetic disorders and their families. Value comes from improved communication and focuses on quality family‐centered care. Methods Interviews with medical professionals, scientists, managed care experts, parents, and individuals with PWS were conducted from July 1 to December 1, 2016. Review of the literature was used to provide support. Results Data are presented based on consensus from these interviews by specialty focusing on unique aspects of care, research, and management. We have also defined the Center of Excellence beyond the multidisciplinary clinic. Conclusion Establishment of clinics motivates collaboration to provide evidence‐based new standards of care, increases the knowledge base including through randomized controlled trials, and offers an additional resource for the community. They have a role in global telemedicine, including to rural areas with few resources, and create opportunities for clinical work to inform basic and translational research. As a care team, we are currently charged with understanding the molecular basis of PWS beyond the known genetic cause; developing appropriate clinical outcome measures and biomarkers; bringing new therapies to change the natural history of disease; improving daily patient struggles, access to care, and caregiver burden; and decreasing healthcare load. Based on experience to date with a PWS multidisciplinary clinic, we propose a design for this approach and emphasize the development of “Centers of Excellence.” We highlight the dearth of evidence for management approaches creating huge gaps in care practices as a means to illustrate the importance of the collaborative environment and translational approaches.

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“…Patient-and caregiver-targeted interventions generally aimed to enhance the transitional readiness, disability-related knowledge, and self-advocacy and management skills of patients and/or their caregivers. This included the use of guided transition appointments at specialized clinics [58][59][60][61][62][63][64][65] ; creation of curricula, informational materials, and/or health care information templates 45,57,66-76 ; development of goals or of a specific transition plan 39, [77][78][79][80][81][82][83][84][85] ; and practical interventions on successful community living, including employment. [86][87][88][89][90][91] Some interventions combined several of the aforementioned approaches.…”

Section: Intervention Characteristicsmentioning

confidence: 99%

Transitional Care Interventions for Youth With Disabilities: A Systematic Review

et al. 2020

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CONTEXT: Transition from the pediatric to the adult health care system is a complex process that should include medical, psychosocial, educational, recreational, and vocational considerations. OBJECTIVE: In this systematic review, we aim to synthesize the evidence on transitional care interventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders. DATA SOURCES: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature) were searched. STUDY SELECTION: In the included studies, researchers examined TCIs for adolescents and young adults (12-24 years of age) with childhood-onset disabilities. Studies were experimental, quasi-experimental, and observational studies published in the last 26 years. DATA EXTRACTION: Two reviewers independently completed study screening, data extraction, and risk-of-bias assessment. RESULTS: Fifty-two studies were included. Five studies reported on QoL, but statistically significant improvements were noted in only 1 of these studies. Significant improvements were also found in secondary outcomes including disability-related knowledge and transitional readiness. TCIs targeted patients, families and/or caregivers, and health care providers and exhibited great heterogeneity in their characteristics and components. LIMITATIONS: Inconsistent reporting on interventions between studies hindered synthesis of the relationships between specific intervention characteristics and outcomes. CONCLUSIONS: Although there is limited evidence on the impact of TCIs on the QoL for youth with childhood-onset disabilities, there is indication that they can be effective in improving patient and provider outcomes. The initiation of transition-focused care at an early age may contribute to improved long-term health outcomes in this population.

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

Cited by 23 publications

References 17 publications

Assessing empowerment as multidimensional outcome of a patient education program for adolescents with chronic conditions: A latent difference score model

Assessing empowerment as multidimensional outcome of a patient education program for adolescents with chronic conditions: A latent difference score model

A multidisciplinary approach to the clinical management of Prader–Willi syndrome

Transitional Care Interventions for Youth With Disabilities: A Systematic Review

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