Although pain is one of the most prevalent and bothersome symptoms children with cancer experience, evidence-based guidance regarding assessment and management is lacking. With 44 international, multidisciplinary healthcare professionals and nine patient representatives, we aimed to develop a clinical practice guideline (following GRADE methodology), addressing assessment and pharmacological, psychological, and physical management of tumor-, treatment-, and procedure-related pain in children with cancer. In this paper, we present our thorough methodology for this development, including the challenges we faced and how we approached these. This lays the foundation for our clinical practice guideline, for which there is a high clinical demand.
Bibliographical noteFunding Information:
The project “Towards evidence-based guidelines for supportive care in childhood oncology” is supported by the Alpe d'HuZes foundation/Dutch Cancer Society (RUG 2013-6345). The funding source had no role in the study design, in the collection, analysis, and interpretation of the data, in the preparation of the manuscript, or in the decision to submit the manuscript for publication.
∗Collaborators of the Pain in Children with Cancer Guideline Development Panel (alphabetical order): Doralina L. Anghelescu (St. Jude Children's Research Hospital, Memphis, TN, USA), Kathryn Birnie (The Hospitalfor Sick Children, Toronto, ON,Canada), Judith de Bont (University Medical CenterUtrecht,Utrecht,the Netherlands), Amy-Lee Bredlau(Medical University ofSouth Carolina, Charleston, SC, USA), Patsy Cullen (Regis University, Denver, CO, USA), Sarah Daniels (St. Jude Children's Research Hospital, Memphis, TN, USA), Bruce Dick (University of Alberta, Edmonton, AB, Canada),MoniquevanDijk(ErasmusMC–SophiaChildren'sHospital,Rotterdam,theNetherlands),R.ScottDingeman(TheJohnsHopkinsHospital,Baltimore,MD,USA),ElenaEvan(UCLAHealth, Los Angeles, CA, USA), Julie Gegg (Boston Children's Hospital, Boston, MA, USA), Faith Gibson (Great Ormond Street Hospital for Children NHS Foundation Trust and University of Surrey, London, UK), Martine van Grotel (Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands), Lindsay Jibb (The Hospital for Sick Children, Toronto, ON, Canada), Roy Kao (UCLA David Geffen School of Medicine, Los Angeles, CA, USA), Rutger Knops (Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands), Ketan Kulkarni (IWK Health Centre, Halifax, NS, Canada), Piet Leroy (Maastricht University Medical Center, Maastricht, the Netherlands), Christina Liossi (University of Southampton, Southampton, UK), Gustaf Ljungman (Uppsala University, Uppsala,Sweden),JenniferMcLean(TheHospitalforSickChildren,Toronto,ON,Canada),MaartenMensink(UniversityMedicalCenterUtrecht,Utrecht,theNetherlands),ErnaMichiels(Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands), Mary Ann Muckaden (Tata Memorial Centre, Mumbai, India), Brittney Newman (St. Jude Children's Research Hospital, Memphis, TN. USA), Karyn Positano (The Hospital for Sick Children, Toronto, ON, Canada), Mienke Rijsdijk (University Medical Center Utrecht, Utrecht, the Netherlands), Emily Rowe (Tufts Medical Center, Boston, MA, USA), Gurjit Sangha (Trillium Health Partners, Mississauga, ON, Canada), Jennifer Stinson (The Hospital for Sick Children, Toronto, ON, Canada), Anna Taddio (University of Toronto, Toronto, Canada), Hannah Taylor (St. Jude Children's Research Hospital, Memphis, TN. USA), Perri Tutelman (Centre for Pediatric Pain Research, Pediatrics, Dalhousie University, NS, Canada), Alison Twycross (London South Bank University, London, UK), Marc Wijnen (Princess Máxima Center for Pediatric Oncology, Utrecht, the Netherlands), Lonnie Zeltzer (UCLA Health, Los Angeles, CA, USA)
We thank the Dutch pediatric oncology patient and parent association ?Vereniging Ouders, Kinderen en Kanker? for playing an active role in the recruitment of parent representatives. Also, we thank Edith Leclercq (passed away in 2018) and Cochrane Childhood Cancer for assistance in designing and commencing the literature searches. Lastly, we thank iPOG for helping in member recruitment, and providing the international network to learn and benefit from one another in developing and implementing childhood cancer supportive care guidelines.
© 2019 The Authors. Pediatric Blood & Cancer Published by Wiley Periodicals, Inc.
- clinical practice guideline
- evidence-based medicine
- pediatric oncology
- supportive care