Browsing by Subject "Health care transition"

Now showing 1 - 3 of 3
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    Health Care Transition From Pediatric- to Adult-Focused Care in X-linked Hypophosphatemia: Expert Consensus
    (Endocrine Society, 2022) Dahir, Kathryn; Dhaliwal, Ruban; Simmons, Jill; Imel, Erik A.; Gottesman, Gary S.; Mahan, John D.; Prakasam, Gnanagurudasan; Hoch, Allison I.; Ramesan, Prameela; Díaz-González de Ferris, Maria; Medicine, School of Medicine
    Context: X-linked hypophosphatemia (XLH) is an inherited skeletal disorder that can lead to lifelong deleterious musculoskeletal and functional consequences. Although often perceived as a childhood condition, children and adults both experience the negative effects of XLH. Adolescents and young adults (AYAs) benefit from effective health care transition (HCT) preparation to support the transfer from pediatric- to adult-focused care. Whereas transition timelines, milestones, and educational tools exist for some chronic conditions, they do not meet the unique needs of patients with XLH. Evidence acquisition: To produce the first expert recommendations on HCT preparation for AYAs with XLH developed by clinical care investigators and transition experts, a formal literature search was conducted and discussed in an advisory board meeting in July 2020. A modified Delphi method was used to refine expert opinion and facilitate a consensus position. Evidence synthesis: We identified the need for psychosocial and access-related resources for disease education, genetic counseling, family planning, and AYA emancipation from caregiver-directed care. Additionally, we recognized that it is necessary to facilitate communication with patients through channels familiar and accessible to AYAs and teach patients to advocate for their health care/access to specialists. Conclusion: Clear HCT preparation guidelines and treatment-related goals are defined. Individualized timelines and practical strategies for HCT preparation are proposed to optimize health outcomes resulting from continuous clinical care throughout the patient lifecycle. We provide an expert consensus statement describing a tailored HCT preparation program specifically for AYAs with XLH to aid in the effective transfer from pediatric- to adult-focused health care.
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    The health care transition needs of adolescents and emerging adults with chronic pain: A narrative review
    (Springer, 2023-06-26) Milder, Mary K.; Ward, Sydney; Bazier, Ashley; Stumpff, Julia C.; Tsai Owens, Michele; Williams, Amy E.
    The aim of this narrative review was to provide an overview of what is known about the health care transition process in pediatric chronic pain, barriers to successful transition of care, and the roles that pediatric psychologists and other health care providers can play in the transition process. Searches were run in in Ovid, PsycINFO, Academic Search Complete, and PubMed. Eight relevant articles were identified. There are no published protocols, guidelines, or assessment measures specific to the health care transition in pediatric chronic pain. Patients report many barriers to the transition process, including difficulty attaining reliable medical information, establishing care with new providers, financial concerns, and adapting to the increased personal responsibility for their medical care. Additional research is needed to develop and test protocols to facilitate transition of care. Protocols should emphasize structured, face-to-face interactions and include high levels of coordination between pediatric and adult care teams. “This version of the article has been accepted for publication, after peer review (when applicable) but is not the Version of Record and does not reflect post-acceptance improvements, or any corrections. The Version of Record is available online at: http://dx.doi.org/10.1007/s10880-023-09966-0. Use of this Accepted Version is subject to the publisher’s Accepted Manuscript terms of use https://www.springernature.com/gp/open-research/policies/accepted-manuscript-terms.
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    Transition of care of patients with eosinophilic gastrointestinal diseases: Challenges and opportunities
    (IOS Press, 2022) Hiremath, Girish; Chapa-Rodriguez, Adrian; Katzka, David A.; Spergel, Jonathan M.; Gold, Benjamin; Bredenoord, Albert J.; Dellon, Evan S.; Huang, Jeannie; Gupta, Sandeep K.; Pediatrics, School of Medicine
    Eosinophilic gastrointestinal disorders (EGID) are a group of allergen-mediated conditions which are characterized by eosinophilic inflammation affecting one or more parts of the gastrointestinal tract. A disproportionately higher number of EGID patients are diagnosed in the pediatric age group. Given the chronic course of EGIDs and lack of curative therapies at this time, majority of the pediatric EGID patients may require continued care well into their adulthood. However, to date, scant data are available regarding the health care transition (HCT), the transition of care (TC), and the effectiveness of transfer of care EGID patients from pediatric-oriented to adult-oriented providers. Herein, we review the lessons learnt from transfer of care of children with other chronic gastrointestinal and allergic conditions, analyze the current knowledge, potential barriers, the role of various stakeholders in successful transfer of care of EGID patients, propose a conceptual framework for HCT and TC of EGID patients, and identify outcome measures to ensure the quality of progression of care.