Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents
Aim: Transition from pediatric to adult healthcare is a critical period. Recommendations have pointed to greater preparation of youths and families and better coordination. Considerations such as patient values and preferences may – if not taken into consideration – impede uptake of clinical recomme...
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| Language: | English |
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Elsevier
2025-01-01
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| Series: | Health Care Transitions |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2949923225000017 |
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| author | Eric Racine François Ouimet Rocio Gissel Gutierrez Rojas Marie-José Clermont Anne Fournier |
| author_facet | Eric Racine François Ouimet Rocio Gissel Gutierrez Rojas Marie-José Clermont Anne Fournier |
| author_sort | Eric Racine |
| collection | DOAJ |
| description | Aim: Transition from pediatric to adult healthcare is a critical period. Recommendations have pointed to greater preparation of youths and families and better coordination. Considerations such as patient values and preferences may – if not taken into consideration – impede uptake of clinical recommendations. This survey-based study aimed to better understand challenges, needs, and intervention preferences of youths and parents during transition. Methods: Two online surveys were designed to investigate challenges, needs, and intervention preferences of youths with a chronic or rare condition and parents during transition. The youth survey included the French translation of the Transition Readiness Assessment Questionnaire (TRAQ). Additional questions were derived from an interview-based study and aimed to grasp issues related to human flourishing in addition to more conventional clinical issues related to the transition process. Descriptive statistics were used and ANOVAs to detect differences between the groups when applicable. Results: 86 youths and 94 parents completed the survey. Average scores for TRAQ subscales were high except for “Tracking health issues” and “Appointment keeping”. Youths and parents reported being able to give their opinion. Parents were judged to be slightly over-involved. Ongoing involvement of parents in health management was desired. Awareness of differences between pediatric and adult healthcare was high, but a source of notable concern (e.g., accessibility of different medical and professional services). Information on transition was lacking. Installing a pivot-person, visits to the adult hospital, meeting other youths, and accessing transition videos were supported interventions. Conclusion: Transition readiness can be high, but significant challenges can still be present and salient. Youths and adults want to be involved and informed to prepare actively for transition through meetings or adapted materials. |
| format | Article |
| id | doaj-art-734c16bc95684f04b35d1394d1f2ca3e |
| institution | Kabale University |
| issn | 2949-9232 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Health Care Transitions |
| spelling | doaj-art-734c16bc95684f04b35d1394d1f2ca3e2025-01-27T04:22:44ZengElsevierHealth Care Transitions2949-92322025-01-013100095Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parentsEric Racine0François Ouimet1Rocio Gissel Gutierrez Rojas2Marie-José Clermont3Anne Fournier4Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, 110 Pine Avenue West, Montréal, QC H2W 1R7, Canada; Département de médecine sociale et préventive, École de santé publique de l’Université de Montréal, 7101 Parc Avenue, Montréal, QC H3N 1× 9, Canada; Département de médecine, Université de Montréal, 2900 Boul. Édouard-Montpetit, Montréal, QC H3T 1J4, Canada; Department of Medicine (Division of Clinical and Translational Medicine), McGill University, 1001 Boul. Décarie, Montréal, QC H4A 3J1, Canada; Department of Neurology and Neurosurgery, McGill University, 3801 Rue University, Montréal, QC H3A 2B4, Canada; Corresponding author at: Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, 110 Pine Avenue West, Montréal, QC H2W 1R7, Canada.Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, 110 Pine Avenue West, Montréal, QC H2W 1R7, CanadaCentre Hospitalier Universitaire Sainte-Justine, 3175 Chemin de la Côte-Sainte-Catherine, Montréal, QC H3T 1C5, CanadaCentre Hospitalier Universitaire Sainte-Justine, 3175 Chemin de la Côte-Sainte-Catherine, Montréal, QC H3T 1C5, CanadaCentre Hospitalier Universitaire Sainte-Justine, 3175 Chemin de la Côte-Sainte-Catherine, Montréal, QC H3T 1C5, CanadaAim: Transition from pediatric to adult healthcare is a critical period. Recommendations have pointed to greater preparation of youths and families and better coordination. Considerations such as patient values and preferences may – if not taken into consideration – impede uptake of clinical recommendations. This survey-based study aimed to better understand challenges, needs, and intervention preferences of youths and parents during transition. Methods: Two online surveys were designed to investigate challenges, needs, and intervention preferences of youths with a chronic or rare condition and parents during transition. The youth survey included the French translation of the Transition Readiness Assessment Questionnaire (TRAQ). Additional questions were derived from an interview-based study and aimed to grasp issues related to human flourishing in addition to more conventional clinical issues related to the transition process. Descriptive statistics were used and ANOVAs to detect differences between the groups when applicable. Results: 86 youths and 94 parents completed the survey. Average scores for TRAQ subscales were high except for “Tracking health issues” and “Appointment keeping”. Youths and parents reported being able to give their opinion. Parents were judged to be slightly over-involved. Ongoing involvement of parents in health management was desired. Awareness of differences between pediatric and adult healthcare was high, but a source of notable concern (e.g., accessibility of different medical and professional services). Information on transition was lacking. Installing a pivot-person, visits to the adult hospital, meeting other youths, and accessing transition videos were supported interventions. Conclusion: Transition readiness can be high, but significant challenges can still be present and salient. Youths and adults want to be involved and informed to prepare actively for transition through meetings or adapted materials.http://www.sciencedirect.com/science/article/pii/S2949923225000017TransitionPediatricsEthicsHuman flourishingHealth systemsAutonomy |
| spellingShingle | Eric Racine François Ouimet Rocio Gissel Gutierrez Rojas Marie-José Clermont Anne Fournier Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents Health Care Transitions Transition Pediatrics Ethics Human flourishing Health systems Autonomy |
| title | Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents |
| title_full | Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents |
| title_fullStr | Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents |
| title_full_unstemmed | Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents |
| title_short | Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents |
| title_sort | transition from pediatric to adult health services a survey of challenges needs and preferences of youths and parents |
| topic | Transition Pediatrics Ethics Human flourishing Health systems Autonomy |
| url | http://www.sciencedirect.com/science/article/pii/S2949923225000017 |
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