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| http://dx.doi.org/10.18597/rcog.4179 | DOI Listing |
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Effectiveness of Active Support on the quality of life and well-being of people with moderate to mild intellectual disabilities.
Res Dev Disabil
January 2025
Behavioural Science Institute, Radboud University Nijmegen, Nijmegen, the Netherlands; Trajectum, Zwolle, the Netherlands.
Active Support is a support model designed to enhance quality of life through activity engagement in people with intellectual disabilities. The aim of the current study was to investigate whether implementation of Active Support affected quality of life, well-being, and activity engagement of residents with mild to moderate intellectual disabilities, using a cluster randomised controlled design. Fourteen services were recruited, and Active Support was implemented after conducting baseline assessments.
View Article and Find Full Text PDFPurpose: The Hematology Oncology Pharmacist Association Oral Chemotherapy Collaborative (HOPA OCC) developed practice-based tools to use in program development and improvement for the management of patients receiving oral anticancer agents (OAAs).
Methods: These tools include a baseline OAA program assessment, clinical OAA adherence tool, and OAA dashboard. HOPA OCC distributed these tools to teams participating in the 6-month HOPA ASCO Quality Training Programs (QTPs).
Patient Experiences and Perspectives When MyChart is Introduced in a Large Community Hospital: Mixed Methods Study.
J Med Internet Res
January 2025
Institute for Better Health, Trillium Health Partners, Mississauga, ON, Canada.
Background: Patient portals, or secure websites linked to electronic medical records, have emerged as tools to provide patients with timely access to their health information. To support the potential benefits of patient portals such as improved engagement in health care, it is essential to understand how patients and caregivers experience these portals.
Objective: This study aimed to explore patient and caregiver experiences, facilitators, and barriers to accessing and using a patient portal called MyChart during the initial stages of its implementation.
Health State Utility Values in Fabry Disease: Insights from the Pegunigalsidase Alfa Clinical Trials.
Adv Ther
January 2025
Cytel, Inc., Waltham, MA, USA.
Introduction: Fabry disease (FD) is a rare lysosomal storage disorder that is associated with pain and progressive damage to the renal, cardiac, and cerebrovascular systems. Enzyme replacement therapy (ERT) is one of the treatment options for FD and the most recently approved ERT agent, pegunigalsidase alfa, has shown clinical efficacy in three phase 3 clinical trials of adults with FD: BALANCE, BRIDGE, and BRIGHT. Recent published guidelines support the mapping of health utility state data to the EuroQol-5 Dimension-3 Level (EQ-5D-3L) index to align with the preferred methodology used by the National Institute for Health and Care Excellence (NICE).
View Article and Find Full Text PDFSupporting the Advancement of a National Agenda for Pediatric Healthcare Reform: A multi-year Evaluation of a Leadership Education in Neurodevelopmental and Related Disabilities Program.
Matern Child Health J
January 2025
Institute for Advancement of Community Health, Furman University, Greenville, SC, USA.
Objectives: To evaluate the implementation and sustainability of the effect of a 1-year Leadership in Education for Neurodevelopmental and related Disabilities (LEND) program in a southeastern state, and to examine its impact on advancing the Maternal Child Health Bureau's (MCHB) Blueprint for Change-a national agenda for pediatric healthcare reform.
Methods: This study applies the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework to rigorously evaluate LEND implementation and impact between 2018 and 2022. In-depth interviews (N = 24) were conducted among long-term (1-year) LEND trainees, via Zoom, in a southeastern state.
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