Rafael González1,2,3, Amaya Bustinza1,2, Sarah N Fernandez1,2, Miriam García1, Silvia Rodriguez4, Ma Ángeles García-Teresa5, Mirella Gaboli6, Silvia García7, Olaia Sardón8, Diego García9, Antonio Salcedo10, Antonio Rodríguez11, Ma Carmen Luna12, Arturo Hernández13, Catalina González14, Alberto Medina15, Estela Pérez16, Alicia Callejón17, Juan D Toledo18, Mercedes Herranz19, Jesús López-Herce20,21,22,23. 1. Pediatric Intensive Care Unit, Hospital General Universitario Gregorio Marañón, Calle Doctor Castelo 47, Madrid, 28009, Spain. 2. Gregorio Marañón Health Research Institute, Madrid, Spain. 3. RETICS funded by the PN I+D+I 2013-2016 (Spain), ISCIII- Sub-Directorate General for Research Assessment and Promotion and the European Regional Development Fund (ERDF), ref. RD16/0022, Madrid, Spain. 4. Pediatric Intensive Care Unit, Hospital Sant Joan De Deu, Barcelona, Spain. 5. Pediatric Intensive Care Unit, Hospital Infantil Universitario Niño Jesús, Madrid, Spain. 6. Pediatric Intensive Care Unit, Hospital Universitario de Salamanca, Salamanca, Spain. 7. Pediatric Intensive Care Unit and Home Care Unit, Hospital Universitario Virgen de la Arrixaca, Murcia, Spain. 8. Pediatric Pneumology Department, Hospital Universitario Donostia-Osakidetza, San Sebastián, Spain. 9. Pediatric Intensive Care Unit, Hospital de Cruces, Bilbao, Spain. 10. Pediatric Pneumology Department, Hospital General Universitario Gregorio Marañón, Madrid, Spain. 11. Pediatric Intensive Care Unit, Complejo Hospitalario Universitario de Santiago, Santiago de Compostela, Spain. 12. Pediatric Pneumology Department, Hospital Universitario 12 de Octubre, Madrid, Spain. 13. Pediatric Intensive Care Unit, Hospital Universitario Puerta del Mar, Cadiz, Spain. 14. Pediatric Intensive Care Unit, Hospital Universitario Virgen de las Nieves, Granada, Spain. 15. Pediatric Intensive Care Unit, Hospital Central de Asturias, Oviedo, Spain. 16. Pediatric Pneumology Department, Hospital Materno Infantil Carlos Haya, Malaga, Spain. 17. Pediatric Pneumology Department, Hospital Universitario Nuestra Señora de la Candelaria, Tenerife, Spain. 18. Pediatric Department, Hospital General de Castelló, Castellón, Spain. 19. Pediatric Pneumology Department, Hospital Virgen del Camino, Pamplona, Spain. 20. Pediatric Intensive Care Unit, Hospital General Universitario Gregorio Marañón, Calle Doctor Castelo 47, Madrid, 28009, Spain. pielvi@hotmail.com. 21. Gregorio Marañón Health Research Institute, Madrid, Spain. pielvi@hotmail.com. 22. RETICS funded by the PN I+D+I 2013-2016 (Spain), ISCIII- Sub-Directorate General for Research Assessment and Promotion and the European Regional Development Fund (ERDF), ref. RD16/0022, Madrid, Spain. pielvi@hotmail.com. 23. Pediatrics Department, Complutense University of Madrid, Madrid, Spain. pielvi@hotmail.com.
Abstract
HMV (home mechanical ventilation) in children has increased over the last years. The aim of the study was to assess perceived quality of life (QOL) of these children and their families as well as the problems they face in their daily life.We performed a multicentric cross-sectional study using a semi-structured interview about the impact of HMV on families and an evaluation questionnaire about perceived QOL by the patient and their families (pediatric quality of life questionnaire (PedsQL4.0)). We studied 41 subjects (mean age 8.2 years). Global scores in PedsQL questionnaire for subjects (median 61.4), and their parents (median 52.2) were below those of healthy children. 24.4% received medical follow-up at home and 71.8% attended school. Mothers were the main caregivers (75.6%), 48.8% of which were fully dedicated to the care of their child. 71.1% consider economic and healthcare resources insufficient. All families were satisfied with the care they provide to their children, even though it was considered emotionally overwhelming (65.9%). Marital conflict and neglect of siblings appeared in 42.1 and 36% of families, respectively. CONCLUSIONS: Perceived QOL by children with HMV and their families is lower than that of healthy children. Parents are happy to care for their children at home, even though it negatively affects family life. What is Known: • The use of home mechanical ventilation (HMV) in children has increased over the last years. • Normal family functioning is usually disrupted by HMV. What is New: • The aim of HMV is to provide a lifestyle similar to that of healthy children, but perceived quality of life by these patients and their parents is low. • Most of the families caring for children on HMV agree that support and resources provided by national health institutions is insufficient.
HMV (home mechanical ventilation) in children has increased over the last years. The aim of the study was to assess perceived quality of life (QOL) of these children and their families as well as the problems they face in their daily life.We performed a multicentric cross-sectional study using a semi-structured interview about the impact of HMV on families and an evaluation questionnaire about perceived QOL by the patient and their families (pediatric quality of life questionnaire (PedsQL4.0)). We studied 41 subjects (mean age 8.2 years). Global scores in PedsQL questionnaire for subjects (median 61.4), and their parents (median 52.2) were below those of healthy children. 24.4% received medical follow-up at home and 71.8% attended school. Mothers were the main caregivers (75.6%), 48.8% of which were fully dedicated to the care of their child. 71.1% consider economic and healthcare resources insufficient. All families were satisfied with the care they provide to their children, even though it was considered emotionally overwhelming (65.9%). Marital conflict and neglect of siblings appeared in 42.1 and 36% of families, respectively. CONCLUSIONS: Perceived QOL by children with HMV and their families is lower than that of healthy children. Parents are happy to care for their children at home, even though it negatively affects family life. What is Known: • The use of home mechanical ventilation (HMV) in children has increased over the last years. • Normal family functioning is usually disrupted by HMV. What is New: • The aim of HMV is to provide a lifestyle similar to that of healthy children, but perceived quality of life by these patients and their parents is low. • Most of the families caring for children on HMV agree that support and resources provided by national health institutions is insufficient.
Entities:
Keywords:
Children; Domiciliary care; Home mechanical ventilation; Quality of life
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