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  • Andersen, Randi DovlandDepartment of Research, Telemark Hospital, Skien, Norway; Research Center for Habilitation and Rehabilitation Services and Models (CHARM), Institute of Health and Society, University of Oslo, Oslo, Norway (författare)

Pain burden in children with cerebral palsy (CPPain) survey : Study protocol

  • Artikel/kapitelEngelska2022

Förlag, utgivningsår, omfång ...

  • 2021-05-04
  • John Wiley & Sons,2022
  • printrdacarrier

Nummerbeteckningar

  • LIBRIS-ID:oai:DiVA.org:oru-99005
  • https://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-99005URI
  • https://doi.org/10.1002/pne2.12049DOI
  • https://lup.lub.lu.se/record/a97a8352-da60-46f6-83f3-924016684782URI
  • https://urn.kb.se/resolve?urn=urn:nbn:se:du-41444URI

Kompletterande språkuppgifter

  • Språk:engelska
  • Sammanfattning på:engelska

Ingår i deldatabas

Klassifikation

  • Ämneskategori:ref swepub-contenttype
  • Ämneskategori:art swepub-publicationtype

Anmärkningar

  • Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.

Ämnesord och genrebeteckningar

Biuppslag (personer, institutioner, konferenser, titlar ...)

  • Genik, LaraDepartment of Psychology, University of Guelph, Guelph, ON, Canada (författare)
  • Alriksson-Schmidt, Ann ILund University,Lunds universitet,Ortopedi, Lund,Sektion III,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,CPUP - barnortopedisk forskningsgrupp,Forskargrupper vid Lunds universitet,Att leva med funktionsnedsättning: Forskning ur ett folkhälsoperspektiv,Orthopaedics (Lund),Section III,Department of Clinical Sciences, Lund,Faculty of Medicine,CPUP - Children's Orthopedics Group,Lund University Research Groups,Living with a Disability: Research from a Public Health Perspective,Department of Clinical Sciences Lund Skåne University Hospital Orthopedics Lund University Lund Sweden(Swepub:lu)med-aai (författare)
  • Anderzen-Carlsson, Agneta,1966-Örebro University,Örebro universitet,Institutionen för hälsovetenskaper,Region Örebro län,University Health Care Research Center and Swedish Institute for Disability Research Faculty of Medicine and Health Örebro University Örebro Sweden(Swepub:oru)atan (författare)
  • Burkitt, ChantelGillette Children's Specialty Healthcare, Saint Paul, MN, USA; Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA (författare)
  • Bruflot, Sindre KTelemark Chapter of the Norwegian Cerebral Palsy Association, Skien, Norway (författare)
  • Chambers, Christine TDepartments of Psychology & Neuroscience and Pediatrics, Dalhousie University, Halifax, NS, Canada; Centre for Pediatric Pain Research, IWK Health Centre, Nova Scotia, Canada (författare)
  • Jahnsen, Reidun BResearch Center for Habilitation and Rehabilitation Services and Models (CHARM), Institute of Health and Society, University of Oslo, Oslo, Norway; Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway (författare)
  • Jeglinsky-Kankainen, IraDepartment of Health and Welfare, Arcada University of Applied Sciences, Helsinki, Finland (författare)
  • Kildal, Olav AgaResearch Center for Habilitation and Rehabilitation Services and Models (CHARM), Institute of Health and Society, University of Oslo, Oslo, Norway; Department of Child and Adolescent Health Services, Telemark Hospital Trust, Skien, Norway (författare)
  • Ramstad, KjerstiDepartment of Paediatric Neurology, Oslo University Hospital, Oslo, Norway (författare)
  • Sheriko, JordanDepartment of Pediatrics, Dalhousie University, Halifax, NS, Canada; Rehabilitation Services, IWK Health, Halifax, NS, Canada (författare)
  • Symons, Frank JDepartment of Educational Psychology, University of Minnesota, Minneapolis, MN, USA (författare)
  • Wallin, LarsHögskolan Dalarna,Dalarna University College,Omvårdnad(Swepub:du)lwa (författare)
  • Andersen, Guro LThe Cerebral Palsy Registry of Norway, Vestfold Hospital Trust, Tønsberg, Norway; Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim, Norway (författare)
  • Department of Research, Telemark Hospital, Skien, Norway; Research Center for Habilitation and Rehabilitation Services and Models (CHARM), Institute of Health and Society, University of Oslo, Oslo, NorwayDepartment of Psychology, University of Guelph, Guelph, ON, Canada (creator_code:org_t)

Sammanhörande titlar

  • Ingår i:Paediatric and Neonatal Pain: John Wiley & Sons4:1, s. 11-212379-58242637-3807

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