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

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

Andersen, Randi Dovland (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, Norway

Genik, Lara (författare): Department of Psychology, University of Guelph, Guelph, ON, Canada

Alriksson-Schmidt, Ann I (författare): Lund 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

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Anderzen-Carlsson, Agneta, 1966- (författare): 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

Burkitt, Chantel (författare): Gillette Children's Specialty Healthcare, Saint Paul, MN, USA; Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA

Bruflot, Sindre K (författare): Telemark Chapter of the Norwegian Cerebral Palsy Association, Skien, Norway

Chambers, Christine T (författare): Departments of Psychology & Neuroscience and Pediatrics, Dalhousie University, Halifax, NS, Canada; Centre for Pediatric Pain Research, IWK Health Centre, Nova Scotia, Canada

Jahnsen, Reidun B (författare): Research 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

Jeglinsky-Kankainen, Ira (författare): Department of Health and Welfare, Arcada University of Applied Sciences, Helsinki, Finland

Kildal, Olav Aga (författare): Research 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

Ramstad, Kjersti (författare): Department of Paediatric Neurology, Oslo University Hospital, Oslo, Norway

Sheriko, Jordan (författare): Department of Pediatrics, Dalhousie University, Halifax, NS, Canada; Rehabilitation Services, IWK Health, Halifax, NS, Canada

Symons, Frank J (författare): Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA

Wallin, Lars (författare): Högskolan Dalarna,Dalarna University College,Omvårdnad

Andersen, Guro L (författare): The 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

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(creator_code:org_t)

2021-05-04
2022
Engelska.
Ingår i: Paediatric and Neonatal Pain. - : John Wiley & Sons. - 2379-5824 .- 2637-3807. ; 4:1, s. 11-21

Relaterad länk:: https://doi.org/10.1...; visa fler...; https://onlinelibrar...; http://dx.doi.org/10... (free); https://du.diva-port... (primary) (Raw object); https://urn.kb.se/re...; https://doi.org/10.1...; https://lup.lub.lu.s...; https://urn.kb.se/re...; visa färre...

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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.

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Av författaren/redakt...: Andersen, Randi ...; Genik, Lara; Alriksson-Schmid ...; Anderzen-Carlsso ...; Burkitt, Chantel; Bruflot, Sindre ...; visa fler...; Chambers, Christ ...; Jahnsen, Reidun ...; Jeglinsky-Kankai ...; Kildal, Olav Aga; Ramstad, Kjersti; Sheriko, Jordan; Symons, Frank J; Wallin, Lars; Andersen, Guro L; visa färre...

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MEDICIN OCH HÄLSOVETENSKAP: MEDICIN OCH HÄLS ...; och Klinisk medicin; och Pediatrik

MEDICIN OCH HÄLSOVETENSKAP: MEDICIN OCH HÄLS ...; och Klinisk medicin; och Neurologi

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Av lärosätet: Örebro universitet; Lunds universitet; Högskolan Dalarna

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

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