Benninger, Irina; Lampart, Patricia; Mueller, Gabi; Augutis, Marika; Eriks-Hoogland, Inge; Grunt, Sebastian; Kelly, Erin Hayes; Padden, Beth; Scherer, Cordula; Shavit, Sandra; Taylor, Julian; Rutz, Erich; Scheel-Sailer, Anke (2022). Needs and Research Priorities for Young People with Spinal Cord Lesion or Spina Bifida and Their Caregivers: A National Survey in Switzerland within the PEPSCI Collaboration. Children, 9(3) MDPI 10.3390/children9030318
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The aim of this study was to describe the needs and research priorities of Swiss children/adolescents and young adults (from here, "young people") with spinal cord injury/disorder (SCI/D) or spina bifida (SB) and their parents in the health and life domains as part of the international Pan-European Pediatric Spinal Cord Injury (PEPSCI) collaboration. Surveys included queries about the satisfaction, importance, research priorities, quality of life (QoL), and characteristics of the young people. Fifty-three surveys with corresponding parent-proxy reports were collected between April and November 2019. The self-report QoL sum scores from young people with SCI/D and SB were 77% and 73%, respectively. Parent-proxy report QoL sum scores were lower, with 70% scores for parents of young people with SCI/D and 64% scores for parents of young people with SB. "Having fun", "relation to family members", and "physical functioning" were found to be highly important for all young people. "Physical functioning", "prevention of pressure injuries", "general health", and "bowel management" received the highest scores for research priority in at least one of the subgroups. As parents tend to underestimate the QoL of their children and young people prioritized research topics differently, both young peoples' and caregivers' perspectives should be included in the selection of research topics.
Item Type: |
Journal Article (Original Article) |
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Division/Institute: |
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine 04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Surgery 04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine > Neuropaediatrics |
UniBE Contributor: |
Grunt, Sebastian, Scherer, Cordula |
Subjects: |
600 Technology > 610 Medicine & health |
ISSN: |
2227-9067 |
Publisher: |
MDPI |
Language: |
English |
Submitter: |
Anette van Dorland |
Date Deposited: |
28 Mar 2022 12:06 |
Last Modified: |
05 Dec 2022 16:17 |
Publisher DOI: |
10.3390/children9030318 |
PubMed ID: |
35327690 |
Uncontrolled Keywords: |
quality of life research priorities spina bifida spinal cord injury/disorder user perspective |
BORIS DOI: |
10.48350/168149 |
URI: |
https://boris.unibe.ch/id/eprint/168149 |
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