International consensus on sleep problems in pediatric palliative care: Paving the way

Anna Mercante; Judith Owens; Oliviero Bruni; Magda L Nunes; Paul Gringras; Shirley Xin Li; Simonetta Papa; Ulrika Kreicbergs; Joanne Wolfe; Boris Zernikow; Ana Lacerda; Franca Benini; Pediatric Sleep and Palliative Care Group

doi:10.1016/j.sleep.2024.05.042

International consensus on sleep problems in pediatric palliative care: Paving the way

Sleep Med. 2024 Jul:119:574-583. doi: 10.1016/j.sleep.2024.05.042. Epub 2024 May 23.

Authors

Collaborators

Pediatric Sleep and Palliative Care Group:
Albert Li¹³, Amy R Wolfson¹⁴, Anna Marinetto¹⁵, Anna Santini¹⁵, Anna Zanin¹⁵, Brett R Kuhn¹⁶, Charlotte Angelhoff¹⁷, Cristiane Fumo Dos Santos¹⁸, Daniel Yt Goh¹⁹, Elisabetta Verrillo²⁰, Eric S Zhou²¹, Esther Angélica Luiz Ferreira²², Eva Bergstraesser²³, Fabio Pizza²⁴, Frans Nilsson²⁵, Giuseppe Plazzi²⁶, Guanghai Wang²⁷, Guillermo Andrey Ariza Traslaviña²⁸, Gustavo Antonio Moreira²⁹, Hal Siden³⁰, Holger Hauch³¹, Huda Abu-Saad Huijer³², Igor Catalano³³, Indra Narang³⁴, Irene Avagnina¹⁵, Jaime Gutierrez Del Alamo Lopez³⁵, Joakim Wille³⁶, Jodi Mindell³⁷, Jori Bogetz³⁸, Julia Downing³⁹, Julie Hauer⁴⁰, Jürg Streuli⁴¹, Justin Baker⁴², Karen Spruyt⁴³, Kate Ching Ching Chan¹³, Leticia Azevedo Soster⁴⁴, Lia Oliveira⁴⁵, Lindsay Ragsdale⁴⁶, Lino Nobili⁴⁷, Lisa Matlen⁴⁸, Luana Nosetti⁴⁹, Lucia De Zen⁵⁰, Luigi Ferini Strambi⁵¹, Margaretha Stenmarker⁵², Maria Cecilia Lopes⁵³, Markus Blankenburg⁵⁴, Marta Rios⁵⁵, Mercedes Bernadá⁵⁶, Michael Farquhar⁵⁷, Michael Frühwald⁵⁸, Michael Gradisar⁵⁹, Narong Simakajornboon⁶⁰, Pierina Lazzarin¹⁵, Poh-Heng Chong⁶¹, Raffaele Ferri⁶², Ricardo Martino-Alba⁶³, Robert L Findling⁶⁴, Rosário Ferreira⁶⁵, Saadoun Bin-Hasan⁶⁶, Sapna R Kudchadkar⁶⁷, Sebastiano Mercadante⁶⁸, Sergio Amarri⁶⁹, Sharon Keenan⁶⁵, Silvia Noce⁷⁰, Simone Brasil de Oliveira Iglesias⁷¹, Simone Fagondes⁷², Sooyeon Suh⁷³, Stephen H Sheldon⁷⁴, Thomas Sejersen⁷⁵, Tolga Atilla Ceranoglu⁷⁶, Valerie Crabtree⁷⁷, Vincenza Castronovo⁵²

Affiliations

¹ Department of Biomedical and Neuromotor Sciences (DIBINEM), University of Bologna, Bologna, Italy. Electronic address: [email protected].
² Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
³ Department of Developmental and Social Psychology, Sapienza University, Rome, Italy.
⁴ School of Medicine and Brain Institute (BraIns) - Pontifical Catholic University of Rio Grande Do Sul, Porto Alegre, RS, Brazil.
⁵ Paediatric Sleep Department, Evelina Children's Hospital, King's College London and Guy's and St Thomas' NHS Foundation Trust, London, UK.
⁶ Sleep Research Clinic and Laboratory, Department of Psychology, The University of Hong Kong, Hong Kong SAR, China; The State Key Laboratory of Brain and Cognitive Sciences, The University of Hong Kong, Hong Kong SAR, China.
⁷ Polistudium SRL, Milan, Italy.
⁸ Louis Dundas Centre for Children's Palliative Care, UCL Institute of Child Health, London, UK; Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiold University, Stockholm, Sweden; Department of Women and Child Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden.
⁹ Pediatric Palliative Care, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
¹⁰ PedScience Research Institute, 45711 Datteln, Germany; Department of Children's Pain Therapy and Paediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, 58448 Witten, Germany; Paediatric Palliative Care Centre, Children's and Adolescents' Hospital, 45711 Datteln, Germany.
¹¹ Department of Paediatrics, Portuguese Institute of Oncology, Lisbon Centre, Portugal; European Association for Palliative Care Children and Young People Reference Group Steering Committee, Wasshington, USA; SIOP Europe Palliative Care Working Group Steering Committee, Brussels, Belgium.
¹² Pediatric Palliative Care, Pain Service, Department of Women's and Children's Health, University Hospital of Padua, Padua, Italy.
¹³ Department of Paediatrics, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong SAR, China.
¹⁴ Loyola University of Maryland, Baltimore, MD, USA.
¹⁵ Pediatric Palliative Care, Pain Service, Department of Women's and Children's Health, University of Padua, Padua, Italy.
¹⁶ University of Nebraska Medical Center/Munroe-Meyer Institute, Omaha, NE, USA.
¹⁷ Allergy Center in Linköping, and Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
¹⁸ Universidade Federal de São Paulo, Departamento de Psicobiologia, São Paulo, SP, Brazil.
¹⁹ Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
²⁰ Pediatric Pulmonology & Cystic Fibrosis Unit, Respiratory Intermediate Care Unit, Sleep and Long-Term Ventilation Unit, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
²¹ Department of Psychiatry, Boston Children's Hospital, Boston, MA, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA.
²² Medicine Department (DMed), Federal University of São Carlos (UFSCar), São Carlos, São Paulo, Brazil.
²³ Paediatric Palliative Care and Children's Research Center, University Children's Hospital Zürich, Switzerland.
²⁴ Department of Biomedical and Neuromotor Sciences, University of Bologna, Bologna, Italy; IRCCS Istituto Delle Scienze Neurologiche di Bologna, Bologna, Italy.
²⁵ Child and Adolescent Medical Center, University Hospital of Umeå, Umeå, Sweden.
²⁶ IRCCS Istituto Delle Scienze Neurologiche di Bologna, Bologna, Italy; Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, Modena, Italy.
²⁷ Department of Developmental and Behavioral Pediatrics, Pediatric Translational Medicine Institute, Shanghai Children's Medical Center, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
²⁸ Medical School of Ribeirão Preto, University of São Paulo, São Paulo, Brazil.
²⁹ Department of Psychobiology, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.
³⁰ Canuck Place Children's Hospice, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada.
³¹ Department of Children's Pain Therapy and Pediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, Witten, Germany.
³² University of Balamand, Al-Kurah, Lebanon.
³³ Hospice "Casa Sollievo Bimbi" and Home Palliative Care Unit - VIDAS ODV, Milan, Italy.
³⁴ Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
³⁵ Hospital Regional Universitario de Málaga e IBIMA Multidisciplinary Group for Pediatric Research, Málaga University, Málaga, Spain.
³⁶ Skåne University Hospital, Lund, Sweden.
³⁷ Saint Joseph's University and Children's Hospital of Philadelphia, Philadelphia, PA, USA.
³⁸ Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA; Treuman Katz Center for Pediatric Bioethics and Palliative Care, Center for Clinical and Translational Research, Seattle Children's Research Institute, Wasshington, USA; Attending Physician, Pediatric Palliative Care Team, Seattle Children's Hospital, Wasshington, USA.
³⁹ International Children's Palliative Care Network, Assagay, South Africa.
⁴⁰ Division of General Pediatrics, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital, Boston, MA, USA.
⁴¹ Institute of Biomedical Ethics and History of Medicine, University of Zurich, Zürich, Switzerland.
⁴² Department of Pediatrics, Stanford University, Stanford, CA, USA.
⁴³ Université Paris Cité, INSERM - NeuroDiderot, Paris, France.
⁴⁴ Pediatric Sleep Laboratory, University of São Paulo, São Paulo, Brazil.
⁴⁵ Pediatric Pulmonology Unit, Department of Pediatrics, Santa Maria Hospital, ULSSM, Lisbon, Portugal.
⁴⁶ University of Kentucky College of Medicine (L.R.), Lexington, KY, USA.
⁴⁷ Istituto G. Gaslini, Genoa, Italy; DINOGMI, University of Genoa, Genoa, Italy.
⁴⁸ Divisions of Pediatric Neurology and Pediatric Sleep Medicine, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
⁴⁹ Pediatric Sleep Disorders Center, Division of Pediatrics, "F. Del Ponte" Hospital, University of Insubria, Varese, Italy.
⁵⁰ Pain and Pediatric Palliative Care Service Institute for Maternal and Child Health - IRCCS "Burlo Garofolo", Trieste, Italy.
⁵¹ Vita-Salute San Raffaele University, Milan, Italy; Division of Neuroscience, Sleep Disorders Center, San Raffaele Scientific Institute, Milan, Italy.
⁵² Department of Paediatrics, Region Jönköping County, Jönköping, and Department of Biomedical and Clinical Sciences, Linköping University, Linköping, Sweden; Institute of Clinical Sciences, Department of Paediatrics, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden.
⁵³ Child and Adolescent Affective Disorder Program (PRATA), Department and Institute of Psychiatry at University of Sao Paulo Medical School, Sao Paulo, Brazil.
⁵⁴ Faculty of Health, School of Medicine, Witten/Herdecke University, Witten, Germany; Klinikum Stuttgart, Germany.
⁵⁵ Centro Materno-Infantil Do Norte - Centro Hospitalar Universitário Santo António, Porto, Portugal.
⁵⁶ School of Medicine, Universidad de La Republica, Pediatric Palliative Care Consultant, Montevideo, Uruguay.
⁵⁷ Department of Children's Sleep Medicine, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK.
⁵⁸ University Medical Center Augsburg, Augsburg, Germany.
⁵⁹ Sleep Cycle AB, Gothenburg, Sweden.
⁶⁰ Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁶¹ HCA Hospice Care, Singapore.
⁶² Oasi Research Institute-IRCCS, Troina, Italy.
⁶³ Pediatric Palliative Care Unit, Hospital Infantil Universitario Niño Jesús, Madrid, Spain.
⁶⁴ Virginia Commonwealth University, Richmond, VA, USA.
⁶⁵ Department of Psychiatry and Behavioral Sciences, Stanford University Medical School, Stanford, CA, USA.
⁶⁶ Department of Pediatrics, Farwaniya Hospital, Ministry of Health, Kuwait.
⁶⁷ Department of Anesthesiology and Critical Care Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
⁶⁸ Main Regional Center for Pain Relief and Palliative Care Unit, La Maddalena Cancer Center, Palermo, Italy.
⁶⁹ Centro di Riferimento Regionale Terapia Del Dolore e Cure Palliative Pediatriche, Fondazione Hospice MT. Chiantore Seràgnoli, Bologna, Italy.
⁷⁰ Department of Paediatrics, Center for Pediatric Sleep Medicine and SIDS, Regina Margherita Children's Hospital, Città Della Salute e Della Scienza, Torino, Italy.
⁷¹ Universidade Federal de São Paulo, Escola Paulista de Medicina, São Paulo, SP, Brazil.
⁷² Hospital de Clínicas de Porto Alegre, Universidade Federal Do Rio Grande Do Sul - UFRGS - Porto Alegre, RS, Brazil; Hospital Moinhos de Vento, Porto Alegre, Brazil.
⁷³ Department of Psychology, Sungshin University, Seoul, Republic of Korea.
⁷⁴ Sleep Medicine Center, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
⁷⁵ Department of Women's and Children's Health, Karolinska Institutet, Department of Child Neurology, Karolinska University Hospital, Astrid Lindgren Children's Hospital, Stockholm, Sweden; Center for Neuromusculoskeletal Restorative Medicine, Hong Kong Science Park, New Territories, Shatin, China.
⁷⁶ Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA.
⁷⁷ Department of Psychology & Biobehavioral Sciences, St. Jude Children's Research Hospital, Memphis, TN, USA.

PMID: 38833942
DOI: 10.1016/j.sleep.2024.05.042

Abstract

Objective: Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care. Therefore, we initiated an international project aimed at establishing a multidisciplinary consensus.

Methods: A two-round Delphi approach was adopted to develop recommendations in the areas of Definition, Assessment/Monitoring, and Treatment. After selecting a panel of 72 worldwide experts, consensus (defined as ≥75% agreement) was reached through an online survey.

Results: At the end of the two voting sessions, we obtained 53 consensus recommendations based on expert opinion on sleep problems in PPC.

Conclusions: This study addresses the need to personalize sleep medicine's approach to the palliative care setting and its peculiarities. It provides the first international consensus on sleep problems in PPC and highlight the urgent need for global guidance to improve sleep-related distress in this vulnerable population and their caregivers. Our findings represent a crucial milestone that will hopefully enable the development of guidelines in the near future.

Keywords: Complex healthcare needs; Consensus; Pediatric palliative care; Sleep; Sleep problems.

MeSH terms

Adolescent
Child
Consensus*
Delphi Technique*
Humans
Internationality
Palliative Care* / methods
Palliative Care* / standards
Pediatrics / methods
Pediatrics / standards
Sleep Wake Disorders* / therapy