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| Título: | International consensus on sleep problems in pediatric palliative care: Paving the way |
| Autor: | Mercante, Anna Owens, Judith Bruni, Oliviero Nunes, Magda L. Gringras, Paul Xin Li, Shirley Papa, Simonetta Kreicbergs, Ulrika Wolfe, Joanne Zernikow, Boris Lacerda, Ana Benini, Franca Bernadá, Mercedes Pediatric Sleep and Palliative Care Group |
| Tipo: | Artículo |
| Palabras clave: | Complex healthcare needs, Consensus, Pediatric palliative care, Sleep, Slep problems |
| Descriptores: | ADOLESCENTE, NIÑO, CONSENSO, TÉCNICA DELPHI, INTERNACIONALIDAD, CUIDADOS PALIATIVOS, ESTÁNDARES DE REFERENCIA, MÉTODOS, PEDIATRÍA, TERAPÉUTICA, TRASTORNOS DEL SUEÑO-VIGILIA |
| Fecha de publicación: | 2024 |
| Resumen: | 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. |
| Descripción: | Collaborators
Pediatric Sleep and Palliative Care Group: Albert Li 13, Amy R Wolfson 14, Anna Marinetto 15, Anna Santini 15, Anna Zanin 15, Brett R Kuhn 16, Charlotte Angelhoff 17, Cristiane Fumo Dos Santos 18, Daniel Yt Goh 19, Elisabetta Verrillo 20, Eric S Zhou 21, Esther Angélica Luiz Ferreira 22, Eva Bergstraesser 23, Fabio Pizza 24, Frans Nilsson 25, Giuseppe Plazzi 26, Guanghai Wang 27, Guillermo Andrey Ariza Traslaviña 28, Gustavo Antonio Moreira 29, Hal Siden 30, Holger Hauch 31, Huda Abu-Saad Huijer 32, Igor Catalano 33, Indra Narang 34, Irene Avagnina 15, Jaime Gutierrez Del Alamo Lopez 35, Joakim Wille 36, Jodi Mindell 37, Jori Bogetz 38, Julia Downing 39, Julie Hauer 40, Jürg Streuli 41, Justin Baker 42, Karen Spruyt 43, Kate Ching Ching Chan 13, Leticia Azevedo Soster 44, Lia Oliveira 45, Lindsay Ragsdale 46, Lino Nobili 47, Lisa Matlen 48, Luana Nosetti 49, Lucia De Zen 50, Luigi Ferini Strambi 51, Margaretha Stenmarker 52, Maria Cecilia Lopes 53, Markus Blankenburg 54, Marta Rios 55, Mercedes Bernadá 56, Michael Farquhar 57, Michael Frühwald 58, Michael Gradisar 59, Narong Simakajornboon 60, Pierina Lazzarin 15, Poh-Heng Chong 61, Raffaele Ferri 62, Ricardo Martino-Alba 63, Robert L Findling 64, Rosário Ferreira 65, Saadoun Bin-Hasan 66, Sapna R Kudchadkar 67, Sebastiano Mercadante 68, Sergio Amarri 69, Sharon Keenan 65, Silvia Noce 70, Simone Brasil de Oliveira Iglesias 71, Simone Fagondes 72, Sooyeon Suh 73, Stephen H Sheldon 74, Thomas Sejersen 75, Tolga Atilla Ceranoglu 76, Valerie Crabtree 77, Vincenza Castronovo 52 Affiliations 1Department of Biomedical and Neuromotor Sciences (DIBINEM), University of Bologna, Bologna, Italy. Electronic address: mercanteanna@outlook.com. 2Boston Children's Hospital, Harvard Medical School, Boston, MA, USA. 3Department of Developmental and Social Psychology, Sapienza University, Rome, Italy. 4School of Medicine and Brain Institute (BraIns) - Pontifical Catholic University of Rio Grande Do Sul, Porto Alegre, RS, Brazil. 5Paediatric Sleep Department, Evelina Children's Hospital, King's College London and Guy's and St Thomas' NHS Foundation Trust, London, UK. 6Sleep 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. 7Polistudium SRL, Milan, Italy. 8Louis 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. 9Pediatric Palliative Care, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA. 10PedScience 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. 11Department 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. 12Pediatric Palliative Care, Pain Service, Department of Women's and Children's Health, University Hospital of Padua, Padua, Italy. 13Department of Paediatrics, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong SAR, China. 14Loyola University of Maryland, Baltimore, MD, USA. 15Pediatric Palliative Care, Pain Service, Department of Women's and Children's Health, University of Padua, Padua, Italy. 16University of Nebraska Medical Center/Munroe-Meyer Institute, Omaha, NE, USA. 17Allergy Center in Linköping, and Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden. 18Universidade Federal de São Paulo, Departamento de Psicobiologia, São Paulo, SP, Brazil. 19Yong Loo Lin School of Medicine, National University of Singapore, Singapore. 20Pediatric Pulmonology & Cystic Fibrosis Unit, Respiratory Intermediate Care Unit, Sleep and Long-Term Ventilation Unit, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy. 21Department of Psychiatry, Boston Children's Hospital, Boston, MA, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA. 22Medicine Department (DMed), Federal University of São Carlos (UFSCar), São Carlos, São Paulo, Brazil. 23Paediatric Palliative Care and Children's Research Center, University Children's Hospital Zürich, Switzerland. 24Department of Biomedical and Neuromotor Sciences, University of Bologna, Bologna, Italy; IRCCS Istituto Delle Scienze Neurologiche di Bologna, Bologna, Italy. 25Child and Adolescent Medical Center, University Hospital of Umeå, Umeå, Sweden. 26IRCCS Istituto Delle Scienze Neurologiche di Bologna, Bologna, Italy; Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, Modena, Italy. 27Department of Developmental and Behavioral Pediatrics, Pediatric Translational Medicine Institute, Shanghai Children's Medical Center, Shanghai Jiao Tong University School of Medicine, Shanghai, China. 28Medical School of Ribeirão Preto, University of São Paulo, São Paulo, Brazil. 29Department of Psychobiology, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil. 30Canuck Place Children's Hospice, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada. 31Department of Children's Pain Therapy and Pediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, Witten, Germany. 32University of Balamand, Al-Kurah, Lebanon. 33Hospice "Casa Sollievo Bimbi" and Home Palliative Care Unit - VIDAS ODV, Milan, Italy. 34Hospital for Sick Children, University of Toronto, Toronto, ON, Canada. 35Hospital Regional Universitario de Málaga e IBIMA Multidisciplinary Group for Pediatric Research, Málaga University, Málaga, Spain. 36Skåne University Hospital, Lund, Sweden. 37Saint Joseph's University and Children's Hospital of Philadelphia, Philadelphia, PA, USA. 38Department 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. 39International Children's Palliative Care Network, Assagay, South Africa. 40Division of General Pediatrics, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital, Boston, MA, USA. 41Institute of Biomedical Ethics and History of Medicine, University of Zurich, Zürich, Switzerland. 42Department of Pediatrics, Stanford University, Stanford, CA, USA. 43Université Paris Cité, INSERM - NeuroDiderot, Paris, France. 44Pediatric Sleep Laboratory, University of São Paulo, São Paulo, Brazil. 45Pediatric Pulmonology Unit, Department of Pediatrics, Santa Maria Hospital, ULSSM, Lisbon, Portugal. 46University of Kentucky College of Medicine (L.R.), Lexington, KY, USA. 47Istituto G. Gaslini, Genoa, Italy; DINOGMI, University of Genoa, Genoa, Italy. 48Divisions of Pediatric Neurology and Pediatric Sleep Medicine, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA. 49Pediatric Sleep Disorders Center, Division of Pediatrics, "F. Del Ponte" Hospital, University of Insubria, Varese, Italy. 50Pain and Pediatric Palliative Care Service Institute for Maternal and Child Health - IRCCS "Burlo Garofolo", Trieste, Italy. 51Vita-Salute San Raffaele University, Milan, Italy; Division of Neuroscience, Sleep Disorders Center, San Raffaele Scientific Institute, Milan, Italy. 52Department 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. 53Child and Adolescent Affective Disorder Program (PRATA), Department and Institute of Psychiatry at University of Sao Paulo Medical School, Sao Paulo, Brazil. 54Faculty of Health, School of Medicine, Witten/Herdecke University, Witten, Germany; Klinikum Stuttgart, Germany. 55Centro Materno-Infantil Do Norte - Centro Hospitalar Universitário Santo António, Porto, Portugal. 56School of Medicine, Universidad de La Republica, Pediatric Palliative Care Consultant, Montevideo, Uruguay. 57Department of Children's Sleep Medicine, Evelina London Children's Hospital, Guy's and St Thomas' NHS Foundation Trust, London, UK. 58University Medical Center Augsburg, Augsburg, Germany. 59Sleep Cycle AB, Gothenburg, Sweden. 60Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. 61HCA Hospice Care, Singapore. 62Oasi Research Institute-IRCCS, Troina, Italy. 63Pediatric Palliative Care Unit, Hospital Infantil Universitario Niño Jesús, Madrid, Spain. 64Virginia Commonwealth University, Richmond, VA, USA. 65Department of Psychiatry and Behavioral Sciences, Stanford University Medical School, Stanford, CA, USA. 66Department of Pediatrics, Farwaniya Hospital, Ministry of Health, Kuwait. 67Department of Anesthesiology and Critical Care Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA. 68Main Regional Center for Pain Relief and Palliative Care Unit, La Maddalena Cancer Center, Palermo, Italy. 69Centro di Riferimento Regionale Terapia Del Dolore e Cure Palliative Pediatriche, Fondazione Hospice MT. Chiantore Seràgnoli, Bologna, Italy. 70Department of Paediatrics, Center for Pediatric Sleep Medicine and SIDS, Regina Margherita Children's Hospital, Città Della Salute e Della Scienza, Torino, Italy. 71Universidade Federal de São Paulo, Escola Paulista de Medicina, São Paulo, SP, Brazil. 72Hospital de Clínicas de Porto Alegre, Universidade Federal Do Rio Grande Do Sul - UFRGS - Porto Alegre, RS, Brazil; Hospital Moinhos de Vento, Porto Alegre, Brazil. 73Department of Psychology, Sungshin University, Seoul, Republic of Korea. 74Sleep Medicine Center, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA. 75Department 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. 76Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA. 77Department of Psychology & Biobehavioral Sciences, St. Jude Children's Research Hospital, Memphis, TN, USA. |
| Editorial: | Elsevier Science |
| EN: | Sleep Medicine. 2024;119:574-583 |
| Citación: | Mercante A, Owens J, Bruni O y Nunes M. International consensus on sleep problems in pediatric palliative care: Paving the way. Sleep Medicine [en línea]. 2024;119:574-583.10 p. |
| Licencia: | Licencia Creative Commons Atribución - No Comercial - Sin Derivadas (CC - By-NC-ND 4.0) |
| Aparece en las colecciones: | Publicaciones Académicas y Científicas - Facultad de Medicina |
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