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

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

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.

Detalles Bibliográficos
2024
Complex healthcare needs
Consensus
Pediatric palliative care
Sleep
Slep problems
ADOLESCENTE
NIÑO
CONSENSO
TÉCNICA DELPHI
INTERNACIONALIDAD
CUIDADOS PALIATIVOS
ESTÁNDARES DE REFERENCIA
MÉTODOS
PEDIATRÍA
TERAPÉUTICA
TRASTORNOS DEL SUEÑO-VIGILIA
Inglés
Universidad de la República
COLIBRI
https://hdl.handle.net/20.500.12008/56437
Acceso abierto
Licencia Creative Commons Atribución - No Comercial - Sin Derivadas (CC - By-NC-ND 4.0)
Resumen:
Sumario: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