Long‐term respiratory support in cerebral palsy: Defining benefit beyond physiological change

Respiratory disease remains a major contributor to morbidity and mortality in the population with cerebral palsy (CP).1 Sleep-disordered breathing and awake respiratory symptoms are potentially modifiable contributors to this.2, 3 Obstructive, restrictive, and central mechanisms often coexist, reflecting underlying physiological complexity,4 with differing implications for management and prognosis. Management is further shaped by treatment-related factors, including effects of positive airway pressure on upper airway dynamics, medications that alter tone or respiratory drive, and the contribution of reflux and aspiration. Respiratory support is, therefore, introduced within a heterogeneous and dynamic pathophysiological context.4 Dhandayuthapani et al. examine this important area in their paper.5 The authors synthesize what is available from a limited and heterogeneous evidence base. Outcome domains span physiological measures, sleep quality, treatment tolerance, and caregiver quality of life. Some consistent signals emerge. Respiratory support can stabilize sleep-related physiological parameters, although the certainty of evidence remains low. There is some caregiver benefit. However, key outcomes remain underrepresented; there is little evidence addressing hospital admissions, infection, or direct measures of child quality of life, limiting understanding beyond physiological change. More fundamentally, the limitations raise a broader question: not whether respiratory support improves physiological parameters, but how benefit should be defined and prioritized. The use of non-invasive respiratory support, including continuous positive airway pressure (CPAP) and bilevel ventilation, as well as invasive ventilation via tracheostomy, is increasing.4 Its role has also gained prominence as societal expectations have shifted. Families increasingly expect access to these interventions and, in well-resourced health systems, long-term respiratory support is more readily available, bolstered by community nursing and overnight care. Clinical experience suggests that non-invasive respiratory support can enable earlier discharge from hospital and improve physiological stability. However, it also redistributes elements of intensive care into the home environment, increasing caregiving demands, and may extend survival in the context of significant multimorbidity. For some children, this may represent meaningful stabilization and improved quality of life; for others, it may prolong exposure to ongoing symptoms and high treatment burden without clear functional gain. This highlights a fundamental tension between physiological benefit and lived burden. Improvements in sleep study indices, while relevant, may not necessarily translate to comfort, improved daily function, reduced healthcare utilization, or sustainable caregiving. In many cases, physiological abnormalities can be identified and modified; however, this does not resolve whether intervention is appropriate, for whom, or to what end. These domains often do not align, and trade-offs between child-focused and caregiver-focused outcomes are unavoidable. Difficulty establishing treatment is also common, indicating that feasibility and tolerability are integral to effectiveness.4 Accordingly, this supports a structured and individualized approach. Initiation of respiratory support should be framed as a goal-directed trial, with clearly defined outcomes, regular review, and explicit discussion of potential benefits and burdens. The increasing use of long-term respiratory support in children and young people with CP has important implications for service delivery. Establishing and maintaining therapy is resource-intensive, requiring repeated adjustment guided by polysomnography and specialist input. Experience from other paediatric conditions shows that national registries and agreed outcome measures can enable comparison across centres, improve transparency, and support more consistent care. This facilitates shared learning while strengthening the evidence base. Conditions with clearly defined aetiology and treatment pathways tend to attract coordinated investment and more rapid evidence development. Increasing aetiological understanding in CP, alongside development of shared data systems, will be essential to support clinical evaluation and service planning, inform funding, and enable equitable and sustainable service development. Not required.