The impact of long-term ventilator-use on health-related quality of life and the mental health of children with neuromuscular diseases and their families: need for a revised perspective?

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.

The Influence of Disney Musical Practice Course on the Mental Health of Chinese Left-Behind Children from the Perspective of Art Communication

“…Music education and children's education should be combined with learning and experience, focusing on children's participation in music experience and practice. Music education does not need to understand basic music knowledge and skills as a single educational content but needs to reintegrate with other relevant educational media and social resources, adapting to the development of the times [ 28 , 29 ].…”

Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation

“…In the case of the project presented here, the parents of children and adolescents with rare diseases requiring mechanical ventilation were investigated cross-sectionally by means of standardized psychometric questionnaires. The study represents an extension of the study conducted by Johannsen et al (2020), which investigated psychosocial needs of the families of children with neuromuscular diseases [24]. The study was funded by the Werner Otto Foundation and received ethical approval by the Medical Chamber Hamburg (PV 4361).…”

ERS statement on paediatric long-term noninvasive respiratory support

“…Literature review (Online Table 10) Few studies have evaluated QoL in children treated with long term CPAP or NIV and caregivers [238][239][240][241][242][243][244][245][246][247][248][249]. Several studies (cross-sectional control studies using questionnaires) reported sleep disturbance, poor sleep quality, and reduced sleep efficiency amongst caregivers, compared to controls [238,242,243].…”