P10 Exploring information needs of patients with severe chronic obstructive pulmonary disease requiring home non-invasive ventilation

IntroductionThe benefits of home non-invasive ventilation (NIV) in patients with chronic obstructive pulmonary disease (COPD), including association between compliance and outcomes, is becoming increasingly well evidenced. With other treatments for COPD, such as inhaled treatments, improved patient understanding and education has been positively associated with compliance. However, little is known about patients’ understanding of NIV and how this may impact compliance with treatment.AimTo explore patients’ understanding of NIV and their information needs.MethodsA postal questionnaire exploring the understanding of home NIV through both quantitative and free text responses was sent out to all patients with COPD established on home NIV within a large regional service. Quantitative data were recorded and analysed in Excel and thematic analysis of qualitative data was undertaken.Results46% (90/197) of postal questionnaires were returned. Although 86% felt confident using NIV, 40% reported needing help (family support 83%, professional carers 17%). 92% stated that they knew how NIV helped them, yet free text explanations often highlighted a lack of understanding. Four key areas were identified using thematic analysis:-Breathing and sputum: Patients reported that NIV helped by supporting their breathing, including ‘regulating breathing rate’, ‘opening up airways’ and ‘expanding the lungs’. Some patients understood NIV worked by helping them to bring up sputum more easily.Sleep: Some patients reported that NIV worked by helping them sleep, including improving morning headaches and disorientation.Gases: Some patients described NIV reducing carbon dioxide (CO2) levels by ‘forcing’ CO2 out of their body and ‘cleaning’ CO2 out of the blood. Others thought that NIV put oxygen into their bodies.Information needs: Patients described not knowing enough about what to do when unwell; using their NIV machine and making changes to treatment. Patients reported that specific information resources such as a pamphlet (62%) or online resources (36%) would be beneficial.ConclusionsAmongst this cohort of patients we identified variable understanding of home NIV and a need for specific, patient-centred information. More work is required to fully understand the experiences and unmet information needs of this patient group, to inform development of information resources that meet these needs.