Future clinical and research priorities
| Population | • Harmonisation of the management of paediatric NIV patients across countries |
| Initiation of CPAP/NIV | • The efficacy, benefit and outcome of CPAP/NIV should be assessed according to the initiation criteria |
| • The most pertinent criteria to initiate CPAP/NIV according to the underlying disease or age should be identified | |
| • Comparison of the efficacy and benefits according to the location of CPAP/NIV initiation. Definition of criteria for hospital or home initiation | |
| • Comparison of the efficacy of “complex” CPAP modes versus constant CPAP | |
| • Evaluation of the usefulness of additional settings (ramp for CPAP, humidification) | |
| • Larger-scale studies on patients with BPAP to have better idea of settings used in a more comprehensive cohort of NIV patients | |
| Equipment | • Comparative data of interfaces with regard to tolerance and side-effects and the usefulness of alternating different types on interfaces in a single child |
| • The long-term facial effects in older children | |
| • Lack of data on the reversibility of the adverse effects after CPAP/NIV weaning or change of interface | |
| • Lack of information on the importance of the headgear (suitability, skull deformity induced by the headgear) | |
| • Evaluation of the interest of complementary technologies (three-dimensional printing, pressure measurements) to guide the choice and positioning of the interface | |
| • Development and validation of built-in software data for children, especially those weighing <30 kg | |
| • Usefulness and benefit of new NIV modes (AVAPS, iVAPS) | |
| Follow-up | Follow-up procedures: |
| • Evaluation of the optimal follow-up strategy in terms of timing and protocols | |
| • Evaluation of the usefulness and limitations of telemonitoring for follow-up | |
| Adherence: | |
| • Usefulness of new technologies to improve adherence (telemedicine, mobile phone applications) | |
| • Investigating the link between adherence and relevant end-organ morbidity | |
| Benefits: | |
| • Benefits of CPAP on academic function and behaviour in children with “complex” OSA | |
| • Efficacy of NIV should also be assessed on the child's neurocognitive outcome, behaviour and academic performance | |
| Weaning | • Development and validation of weaning criteria and protocols for CPAP and NIV |
| CPAP/NIV failure | • Multicentre randomised controlled trials on alternative ventilation strategies |
| Palliative care | • Effects of NIV in palliative care (improvement in dyspnoea, sleep quality and QoL) |
| Special populations | Infants: |
| • Multicentre studies investigating factors predicting greater benefit from long-term CPAP/NIV use with a focus on long-term outcome data. Studies looking at technical aspects concerning interfaces and ventilation modes are also warranted | |
| Obesity: | |
| • Studies assessing the long-term follow-up of obese children treated with CPAP/NIV and differences comparing CPAP to NIV in obese children including differences in required pressures, adherence and health outcomes | |
| • Additional sleep problems are common in children with obesity and may impact adherence to therapy; this has not been explored | |
| Severe neurodisability: | |
| • Prospective data collection focusing on QoL and changes in health outcomes in patient with severe neurodisability that is attributable to CPAP/NIV | |
| • Prospective studies to assess the clinical benefit of CPAP/NIV in this patient group, comparing to alternative treatments, such as oxygen or nasopharyngeal airway, are needed | |
| QoL | • Longitudinal study investigating fluctuations and factors influencing the QoL of children on CPAP/NIV and their parents/caregivers, in conjunction with evolution of the underlying conditions, family functioning/coping strategies |
| • To examine the interaction between adherence and QoL outcomes for the patients and families | |
| Therapeutic education | • Development of therapeutic education tools and programs for CPAP/NIV with studies investigating their efficacy |
| • Which healthcare professionals should be involved in therapeutic education, and should they receive specific training? | |
| Transition | • The efficacy of different transition programmes evaluated on loss of follow-up, optimal data, effect of the underlying disease, cognitive dysfunction or physical dependence, control of the disease and patient satisfaction |
| Costs | • Evaluation of healthcare cost savings thanks to CPAP/NIV (reduction of hospitalisations, healthcare use, etc.) |
CPAP: continuous positive airway pressure; NIV: noninvasive ventilation; QoL: quality of life; BPAP: bilevel positive airway pressure; AVAPS: average volume-assured pressure support; iVAPS: intelligent volume-assured pressure support; OSA: obstructive sleep apnoea.