Bashak Onal1,2,3, Marta Ríos León4, Marika Augutis5, Emily Mattacola6, Allison Graham1, Kirsten Hart1, Erin Kelly7, Anke Scheel-Sailer8, Julian Taylor1,2,4,9. 1. National Spinal Injuries Centre, Stoke Mandeville Hospital, Buckinghamshire Healthcare NHS Trust, Aylesbury, Buckinghamshire, UK. 2. Stoke Mandeville Spinal Research, Stoke Mandeville Hospital, Aylesbury, Buckinghamshire, UK. 3. Buckinghamshire Clinical Commissioning Group, Aylesbury, UK. 4. Sensorimotor Function Group, Hospital Nacional de Parapléjicos, SESCAM, Toledo, Spain. 5. Department of Neurobiology, Care Sciences and Society, Division of Neurogeriatrics, Karolinska Institutet, Stockholm, Sweden. 6. School of Psychology, University of Buckingham, Buckingham, UK. 7. American Academy of Pediatrics, Itasca, Illinois, USA. 8. Swiss Paraplegic Centre, Nottwil, Switzerland. 9. Harris Manchester College, University of Oxford, Oxford, UK.
Abstract
Background: Although feedback from people with adult-onset spinal cord injury (SCI) has been considered in developing research programs, little is known about pediatric-onset SCI priorities. Objectives: To describe the health and life (H&L) domain research priorities of youth with pediatric-onset SCI living in England. Methods: Youth with pediatric-onset SCI (≥6 months) were recruited from five English rehabilitation centers and invited with their parents/caregivers to complete the age-appropriate surveys designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) collaboration. Results: A total of 73 surveys were received (32 from participants with SCI and 41 from their parents/caregivers), providing information on 47 individuals with SCI: 2- to 7-year-olds (29.8%), 8- to 12-year-olds (19.2%), 13- to 17-year-olds (17.0%), and 18 to 25-year-olds (34.0%). The top three research priorities reported by parents/caregivers of 2- to 12-year-old and 13- to 25-year-olds were pain (81%/89%), physical function (91%/83%) and health care access (78%/78%). Eighty-nine percent of 8- to 12-year-olds emphasized schooling, peer relationships, and general mood as their research priorities. The top three research priorities for Health or Life domains reported by 13- to 25-year-olds included spasms (95%), pain (91%), pressure injuries (91%), health care access (83%), physical function (78%), and daily personal needs (74%). Conclusion: Although there should be an emphasis on addressing important life domain issues for 8- to 12-year-olds with SCI, adolescents and young adults mostly prioritized health domain research priorities in addition to health care access. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive SCI research strategy in England for the pediatric population.
Background: Although feedback from people with adult-onset spinal cord injury (SCI) has been considered in developing research programs, little is known about pediatric-onset SCI priorities. Objectives: To describe the health and life (H&L) domain research priorities of youth with pediatric-onset SCI living in England. Methods: Youth with pediatric-onset SCI (≥6 months) were recruited from five English rehabilitation centers and invited with their parents/caregivers to complete the age-appropriate surveys designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) collaboration. Results: A total of 73 surveys were received (32 from participants with SCI and 41 from their parents/caregivers), providing information on 47 individuals with SCI: 2- to 7-year-olds (29.8%), 8- to 12-year-olds (19.2%), 13- to 17-year-olds (17.0%), and 18 to 25-year-olds (34.0%). The top three research priorities reported by parents/caregivers of 2- to 12-year-old and 13- to 25-year-olds were pain (81%/89%), physical function (91%/83%) and health care access (78%/78%). Eighty-nine percent of 8- to 12-year-olds emphasized schooling, peer relationships, and general mood as their research priorities. The top three research priorities for Health or Life domains reported by 13- to 25-year-olds included spasms (95%), pain (91%), pressure injuries (91%), health care access (83%), physical function (78%), and daily personal needs (74%). Conclusion: Although there should be an emphasis on addressing important life domain issues for 8- to 12-year-olds with SCI, adolescents and young adults mostly prioritized health domain research priorities in addition to health care access. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive SCI research strategy in England for the pediatric population.
Authors: Mardee Greenham; Edith Botchway; Sarah Knight; Bruce Bonyhady; Emma Tavender; Adam Scheinberg; Vicki Anderson; Frank Muscara Journal: Disabil Rehabil Date: 2020-11-24 Impact factor: 2.439
Authors: Pooja Saini; Shaima M Hassan; Esmaeil Khedmati Morasae; Mark Goodall; Clarissa Giebel; Saiqa Ahmed; Anna Pearson; Lesley M Harper; Jane Cloke; Jenny Irvine; Mark Gabbay Journal: Res Involv Engagem Date: 2021-06-29