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
Irina Benninger,
Patricia Lampart,
Gabi Mueller,
Marika Augutis,
Inge Eriks-Hoogland,
Sebastian Grunt,
Erin Hayes Kelly,
Beth Padden,
Cordula Scherer,
Sandra Shavit,
Julian Taylor,
Erich Rutz,
Anke Scheel-Sailer,
PEPSCI-Collaboration
Affiliations
Irina Benninger
Swiss Paraplegic Center, Guido A. Zäch Strasse 1, 6207 Nottwil, Switzerland
Patricia Lampart
Swiss Paraplegic Center, Guido A. Zäch Strasse 1, 6207 Nottwil, Switzerland
Gabi Mueller
Swiss Paraplegic Center, Guido A. Zäch Strasse 1, 6207 Nottwil, Switzerland
Marika Augutis
Department of Neurobiology, Care Sciences and Society, Division of Neurogeriatrics, Karolinska Institutet, Solnavägen 1, 171 77 Stockholm, Sweden
Inge Eriks-Hoogland
Swiss Paraplegic Center, Guido A. Zäch Strasse 1, 6207 Nottwil, Switzerland
Sebastian Grunt
Department of Pediatrics, Division of Child Neurology, University Children’s Hospital Bern, University of Bern, Freiburgstrasse 15, 3010 Bern, Switzerland
Erin Hayes Kelly
American Academy of Pediatrics, 345 Park Boulevard, Itasca, IL 60143, USA
Beth Padden
Pediatric Rehabilitation, Center for Spina Bifida, University Children's Hospital Zurich, Steinwiesstrasse 75, 8032 Zürich, Switzerland
Cordula Scherer
Department of Pediatric Surgery, Children’s Hospital Bern, Freiburgstrasse 15, 3010 Bern, Switzerland
Sandra Shavit
Department of Pediatric Surgery, Children's Hospital Lucerne, Spitalstrasse, 6000 Lucerne, Switzerland
Julian Taylor
National Spinal Injuries Centre and Stoke Mandeville Spinal Research, Buckinghamshire Healthcare NHS Trust, Aylesbury, Amersham HP7 0JD, UK
Erich Rutz
Department of Orthopaedics, The Royal Children’s Hospital, Melbourne 3052, Australia
Anke Scheel-Sailer
Swiss Paraplegic Center, Guido A. Zäch Strasse 1, 6207 Nottwil, Switzerland
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.
