Publikationen

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 1, Patricia Lampart 1, Gabi Mueller 1, Marika Augutis 2, Inge Eriks-Hoogland 1, Sebastian Grunt 3, Erin Hayes Kelly 4, Beth Padden 5, Cordula Scherer 6, Sandra Shavit 7, Julian Taylor 8, Erich Rutz 9,10,11,12, Anke Scheel-Sailer 1,* and PEPSCI-Collaboration †

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.

Journal: Children 2022

Date: 27/02/2022

Swiss Paraplegic Center, Guido A. Zäch Strasse 1, 6207 Nottwil, Switzerland

Department of Neurobiology, Care Sciences and Society, Division of Neurogeriatrics, Karolinska Institutet, Solnavägen 1, 171 77 Stockholm, Sweden

Department of Pediatrics, Division of Child Neurology, University Children’s Hospital Bern, University of Bern, Freiburgstrasse 15, 3010 Bern, Switzerland

American Academy of Pediatrics, 345 Park Boulevard, Itasca, IL 60143, USA

Pediatric Rehabilitation, Center for Spina Bifida, University Children's Hospital Zurich, Steinwiesstrasse 75, 8032 Zürich, Switzerland

Department of Pediatric Surgery, Children’s Hospital Bern, Freiburgstrasse 15, 3010 Bern, Switzerland

Department of Pediatric Surgery, Children's Hospital Lucerne, Spitalstrasse, 6000 Lucerne, Switzerland

National Spinal Injuries Centre and Stoke Mandeville Spinal Research, Buckinghamshire Healthcare NHS Trust, Aylesbury, Amersham HP7 0JD, UK

Department of Orthopaedics, The Royal Children’s Hospital, Melbourne 3052, Australia

10 Medical Faculty, University of Basel, 4001 Basel, Switzerland

11 Department of Paediatrics, The University of Melbourne, Melbourne 3010, Australia

12 Murdoch Children’s Research Institute, Melbourne 3052, Australia

Author to whom correspondence should be addressed.

† Membership of the PEPSCI-Collaboration is provided in the Acknowledgments.

Early childhood neurodevelopmental outcome after open prenatal spina bifida aperta repair

Zehra S Hepp 1, Verena M Haas 2, Beatrice Latal 1 3, Martin Meuli 3 4 5, Ueli Möhrlen 3 4 5, Sonja M Schauer 3 4, Robert Steinfeld 2, Beth A Padden 3 6, David A Wille 3 7

To investigate neurodevelopmental outcome of children with open prenatal spina bifida aperta (SBA) repair.

Journal: Developmental Medicine & Child Neurology

Date: 02/12/2021

Division of Child Developmental Medicine, University Children's Hospital Zurich, Zurich, Switzerland.

2 Division of Pediatric Neurology, University Children's Hospital Zurich, Zurich, Switzerland.

3 Zurich Center for Spina Bifida, University Children's Hospital Zurich, Zurich, Switzerland.

4 Department of Pediatric Surgery, University Children's Hospital Zurich, Zurich, Switzerland.

5 The Zurich Center for Fetal Diagnosis and Therapy, Zurich, Switzerland.

6 Division of Pediatric Rehabilitation, University Children's Hospital Zurich, Zurich, Switzerland.

7 Department of Pediatric Neurology, Kantonsspital Baden, Baden, Switzerland.

Systematic classification of maternal and fetal intervention-related complications following open fetal myelomeningocele repair - results from a large prospective cohort

L Vonzun 1, 2, M K Kahr 1, F Noll 1, L Mazzone 2, 3, 4 ,5, U Moehrlen 2, 3, 4, 5, M Meuli 2, 3, 4, 5, M Hüsler 1, 2, F Krähenmann 1, 2, R Zimmermann 1, 2, N Ochsenbein-Kölble 1, 2

To systematically categorise all maternal and fetal intervention-related complications after open fetal myelomeningocele (fMMC) repair of the first 124 cases operated at the Zurich Centre for Fetal Diagnosis and Therapy.

Journal: BJOG An International Journal of Obstetrics and Gynaecology - published online: November 30, 2020

Date: 01/06/2021

1 Division of Obstetrics, University Hospital of Zurich, Zurich, Switzerland.

2 The Zurich Centre for Fetal Diagnosis and Therapy, University of Zurich, Zurich, Switzerland.

3 Department of Paediatric Surgery, University Children's Hospital Zurich, Zurich, Switzerland.

4 Spina Bifida Centre, University Children's Hospital Zurich, Zurich, Switzerland.

5 Children's Research Centre, University Children's Hospital Zurich, Zurich, Switzerland.

Association of uterine activity and maternal volatile anesthetic exposure during open fetal surgery for spina bifida: a retrospective analysis

S. Tra a, N. Ochsenbein-Kölble b, e, P. Stein c, M. Meuli d, e, U. Moehrlen d, e, L. Mazzone d, e, F. Kraehenmann b, e, R. Zimmermann b, e, P. Biro a, e

Recent warnings postulate a possible damaging effect of volatile anesthetics on the fetus. In our archive of fetal surgeries, we found wide variation in dosing of volatile anesthetics during spina bifida surgeries. We hypothesized that there was an association between volatile anesthetic exposure and uterine activity.

Journal: International Journal of Obstetric Anesthesia (Volume 46, May 2021, 102974) - published online: March 10, 2021

Date: 01/05/2021

a Institute of Anesthesiology, University Hospital Zurich, Zurich, Switzerland

b Department of Obstetrics, University Hospital Zurich, Zurich, Switzerland

c Institute of Anesthesiology, Emergency Medical Service, Perioperative Medicine, Pain Therapy, Cantonal Hospital Winterthur, Switzerland

d Department of Surgery, University Childrens’ Hospital Zurich, Zurich, Switzerland

e The Zurich Center for Fetal Diagnosis and Therapy, Zurich, Switzerland

Long-term Outcomes of Children After Fetal Surgery for Spina Bifida-Toward Sustainability

Martin Meuli 1, 2, 3, Ueli Moehrlen 1, 2, 3

No abstract available

Journal: JAMA Pediatrics 2021;175(4):e205687 - published online: February 8, 2021

Date: 01/04/2021

1 Department of Pediatric Surgery, University Children's Hospital Zurich, Zurich, Switzerland.

2 The Zurich Center for Fetal Diagnosis and Therapy, University of Zurich, Zurich, Switzerland.

3 Children's Research Center, University Children's Hospital Zurich, Zurich, Switzerland.