Developing a transition workshop for adolescents with sickle cell disease
Background: The transfer from paediatric to adult care presents a significant challenge for adolescents and young adults (AYA) with sickle cell disease (SCD). Disease self-management skills have been recognized as important mediators of poor health outcomes, but transition-related skills such as sch...
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| Language: | English |
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Elsevier
2024-01-01
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| Series: | Health Care Transitions |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2949923223000405 |
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| author | James Bradley Zelyn Lee Melina Cheong |
| author_facet | James Bradley Zelyn Lee Melina Cheong |
| author_sort | James Bradley |
| collection | DOAJ |
| description | Background: The transfer from paediatric to adult care presents a significant challenge for adolescents and young adults (AYA) with sickle cell disease (SCD). Disease self-management skills have been recognized as important mediators of poor health outcomes, but transition-related skills such as scheduling appointments and understanding the shift in health care responsibilities remain under taught in the healthcare system. The purpose of this quality improvement (QI) study was to (1) understand the areas of disease self-management that AYA patients felt underprepared for, and (2) design and evaluate an educational program addressing the top unmet skills. Methods: The Plan-Do-Study-Act (PDSA) model was implemented in a tertiary outpatient clinic between September 2020 and July 2021. Patients were surveyed during regular clinic visits to identify their priorities on disease self-management skills. Based on the results, a virtual workshop was created and administered three separate times. Feedback was collected using an electronic survey. Results: ‘Navigating the adult health care system’ was the top self-management skill that AYA patients (n = 39) identified needing more support with. The majority of participants (79%, n = 14) reported that the virtual workshop was excellent, with ‘appointment management’ being the most useful topic discussed. Participants also reported feeling more confident (71%) and aware (86%) of how to navigate adult care. Conclusion: This QI study showed that delivering a virtual workshop on transition skills was well received by AYA participants with SCD. The PDSA framework was useful for identifying specific knowledge gaps in transition aged AYA to help improve patient education in a well-established transition program. |
| format | Article |
| id | doaj-art-b67f64218f244e4e87c6a2cd3b6b6cc0 |
| institution | OA Journals |
| issn | 2949-9232 |
| language | English |
| publishDate | 2024-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Health Care Transitions |
| spelling | doaj-art-b67f64218f244e4e87c6a2cd3b6b6cc02025-08-20T02:07:31ZengElsevierHealth Care Transitions2949-92322024-01-01210004010.1016/j.hctj.2023.100040Developing a transition workshop for adolescents with sickle cell diseaseJames Bradley0Zelyn Lee1Melina Cheong2Hemoglobinopathy Clinic, Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada; Red Blood Cell Disorder Clinic, Division of Haematology, University Health Network, Norman Urquhart Wing, 7th Floor, Room 700 585 University Ave, Toronto, ON M5G 2N2, Canada; Corresponding author at: Hemoglobinopathy Clinic, Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada.Hemoglobinopathy Clinic, Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, CanadaHemoglobinopathy Clinic, Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada; Lawrence Bloomberg Faculty of Nursing, University of Toronto, 155 College St., Suite 130, Toronto, ON M5T 1P8, CanadaBackground: The transfer from paediatric to adult care presents a significant challenge for adolescents and young adults (AYA) with sickle cell disease (SCD). Disease self-management skills have been recognized as important mediators of poor health outcomes, but transition-related skills such as scheduling appointments and understanding the shift in health care responsibilities remain under taught in the healthcare system. The purpose of this quality improvement (QI) study was to (1) understand the areas of disease self-management that AYA patients felt underprepared for, and (2) design and evaluate an educational program addressing the top unmet skills. Methods: The Plan-Do-Study-Act (PDSA) model was implemented in a tertiary outpatient clinic between September 2020 and July 2021. Patients were surveyed during regular clinic visits to identify their priorities on disease self-management skills. Based on the results, a virtual workshop was created and administered three separate times. Feedback was collected using an electronic survey. Results: ‘Navigating the adult health care system’ was the top self-management skill that AYA patients (n = 39) identified needing more support with. The majority of participants (79%, n = 14) reported that the virtual workshop was excellent, with ‘appointment management’ being the most useful topic discussed. Participants also reported feeling more confident (71%) and aware (86%) of how to navigate adult care. Conclusion: This QI study showed that delivering a virtual workshop on transition skills was well received by AYA participants with SCD. The PDSA framework was useful for identifying specific knowledge gaps in transition aged AYA to help improve patient education in a well-established transition program.http://www.sciencedirect.com/science/article/pii/S2949923223000405Sickle Cell DiseaseAdolescents and Young AdultsSelf-Management SkillsHealth Care TransitionQuality ImprovementEducation |
| spellingShingle | James Bradley Zelyn Lee Melina Cheong Developing a transition workshop for adolescents with sickle cell disease Health Care Transitions Sickle Cell Disease Adolescents and Young Adults Self-Management Skills Health Care Transition Quality Improvement Education |
| title | Developing a transition workshop for adolescents with sickle cell disease |
| title_full | Developing a transition workshop for adolescents with sickle cell disease |
| title_fullStr | Developing a transition workshop for adolescents with sickle cell disease |
| title_full_unstemmed | Developing a transition workshop for adolescents with sickle cell disease |
| title_short | Developing a transition workshop for adolescents with sickle cell disease |
| title_sort | developing a transition workshop for adolescents with sickle cell disease |
| topic | Sickle Cell Disease Adolescents and Young Adults Self-Management Skills Health Care Transition Quality Improvement Education |
| url | http://www.sciencedirect.com/science/article/pii/S2949923223000405 |
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