Adherence to long term NIV in children and young people
Research type
Research Study
Full title
Adherence to long term non-invasive ventilation (NIV) in children and young people
IRAS ID
252370
Contact name
Elaine Chan
Contact email
Sponsor organisation
Great Ormond Street Hospital for Children NHS Trust
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
Non-invasive ventilation (NIV) refers to breathing support using a mask or similar device, as distinguished from invasive ventilation via a tracheostomy (tube inserted into the windpipe). NIV has made a significant impact on many conditions e.g. neuromuscular diseases, craniofacial, obesity and metabolic syndromes.
As the indications for long-term NIV continue to expand, the number of patients treated increases exponentially worldwide, making adherence a key issue. Adherence to NIV impacts on the efficacy and outcome of treatment for sleep-disordered breathing. Studies have shown that more consistent use of NIV is associated with better outcomes, e.g. self-reported energy, cognitive function. Non-adherence can lead to sudden/recurrent/life-threatening (respiratory) deterioration requiring hospital admissions, disruption to family life and increased healthcare costs.
To date, evidence about adherence to NIV in children is limited. What constitutes optimal levels of adherence is an important question that is, as yet, unanswered. Great Ormond Street Hospital (GOSH) looks after the largest cohort of children on NIV in the UK. We reviewed treatment adherence of our long-term NIV patients, using ventilator downloads, and found 25% are at risk of under-treatment due to non-adherence.
Our proposed 18-month study based at GOSH is designed to identify the practical barriers and facilitators of adherence to long-term NIV in children and young people, and to characterise patients who have most difficulty adhering to treatment through qualitative interviews with patients, families and health professionals. These findings will enable us to further examine the relationships between patients’ adherence behaviours/health perceptions (through questionnaires) and objective measures of the effect of NIV treatment (including sleep study assessments, ventilator downloaded data) and quality of life (QoL). This will enable us to better define optimal levels of adherence - a significant step towards evidence-based personalised patient care.
REC name
South Central - Berkshire B Research Ethics Committee
REC reference
19/SC/0019
Date of REC Opinion
1 Mar 2019
REC opinion
Further Information Favourable Opinion