Jessika Johannsen1, Lena Fuhrmann2, Benjamin Grolle3, Lydia Morgenstern4, Silke Wiegand-Grefe4, Jonas Denecke2. 1. Department of Pediatrics, University Medical Center Hamburg-Eppendorf, Hamburg, Martinistr, 52 20246, Hamburg, Germany. j.johannsen@uke.de. 2. Department of Pediatrics, University Medical Center Hamburg-Eppendorf, Hamburg, Martinistr, 52 20246, Hamburg, Germany. 3. Children's Hospital Altona, Hamburg, Germany. 4. Department of child and adolescent psychiatry, psychosomatics and psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Abstract
BACKGROUND: Life extension by medical interventions and health-related quality of life (HRQOL) are sometimes conflicting aspects of medical care. Long-term ventilation in children with neuromuscular disease is a well-established life-extending procedure and often at the center of this conflict. HRQOL and the mental health of affected children and their families become even more important in respect to emerging therapies in neuromuscular diseases with longer life-expectancy of treated patients and considerable costs of medical treatment. METHODS: We performed a questionnaire survey in a total of forty-three families of children with neuromuscular disease treated in the University Medical Center Hamburg-Eppendorf and the Children's Hospital Altona. We evaluated self- and proxy-reported HRQOL and mental health outcomes of affected children and their parents using validated and age-appropriate instruments. RESULTS: Compared to normative data, children with neuromuscular diseases and their families experienced a lower HRQOL and mental health. However, there was no additional negative influence on the overall HRQOL by ventilator use. CONCLUSIONS: As ventilator use was not responsible for the reduction of HRQOL and mental health our data contributes an important aspect to the discussion about life-prolonging procedures, in particular mechanical ventilation, in severly disabled patients.
BACKGROUND: Life extension by medical interventions and health-related quality of life (HRQOL) are sometimes conflicting aspects of medical care. Long-term ventilation in children with neuromuscular disease is a well-established life-extending procedure and often at the center of this conflict. HRQOL and the mental health of affected children and their families become even more important in respect to emerging therapies in neuromuscular diseases with longer life-expectancy of treated patients and considerable costs of medical treatment. METHODS: We performed a questionnaire survey in a total of forty-three families of children with neuromuscular disease treated in the University Medical Center Hamburg-Eppendorf and the Children's Hospital Altona. We evaluated self- and proxy-reported HRQOL and mental health outcomes of affected children and their parents using validated and age-appropriate instruments. RESULTS: Compared to normative data, children with neuromuscular diseases and their families experienced a lower HRQOL and mental health. However, there was no additional negative influence on the overall HRQOL by ventilator use. CONCLUSIONS: As ventilator use was not responsible for the reduction of HRQOL and mental health our data contributes an important aspect to the discussion about life-prolonging procedures, in particular mechanical ventilation, in severly disabled patients.
Authors: Johannes Boettcher; Jonas Denecke; Claus Barkmann; Silke Wiegand-Grefe Journal: Int J Environ Res Public Health Date: 2020-12-02 Impact factor: 3.390
Authors: Alicia Aurora Rodríguez; Imanol Amayra; Juan Francisco López-Paz; Oscar Martínez; Maitane García; Mónika Salgueiro; Mohammad Al-Rashaida; Paula María Luna; Paula Pérez-Nuñez; Nicole Passi; Irune García; Javiera Ortega Journal: Int J Environ Res Public Health Date: 2022-09-28 Impact factor: 4.614