Tools to help you manage your breathlessness. A Patient Information Leaflet.

Introduction: People living with advanced respiratory disease and severe chronic breathlessness experience poorer quality of life. Breathlessness can be a frightening and disabling experience for both the sufferer and the family who observe it. Moreover, chronic breathlessness has an overall negative effect both physically and psychosocially on those suffering from it and on their loved ones. The impact of these symptoms can be reduced by non pharmacological interventions. A person-centred, psychologically informed approach is needed by all clinicians treating patients with advanced respiratory disease. In addition ,older patients and COPD patients have some of the lowest Health literacy levels. Risk factors for both the development and progression of COPD include socio-economic status and social deprivation. Furthermore, COPD is inversely related to deprivation. Health disparities are closely associated with disparities in educational attainment. Thus the development of an Audio- visual Breathlessness PIL is something which can augment the education provided by the Respiratory CNS to the person who may have literacy and health literacy issues which will impact on their overall ability to comprehend and follow through on self management education provided. In our Nurse led clinic as Respiratory CNS we review patients with COPD and Asthma. We found we were spending a huge proportion of time during patient consultations discussing breathlessness. Many of our patients were unable to read or write and so much of the available literature was word focused or overwhelming with detail. We wanted an easy to read one page leaflet which appealed to different types of needs including images, colours, text, subtitles and videos (QR codes). We developed a Patient Information Leaflet ( PIL) Titled "Tools to help you manage your breathlessness" to cater to the needs of these patients. We involved patients attending Pulmonary Rehab in the design process. We initially designed a PIL based on the Cambridge Breathing ,Thinking, Functioning Clinical Model and asked them to review and advise . We amended the PIL and brought back to the group for further engagement and review. The PIL is newly developed. We are planning to roll out the PIL in our clinics and review the outcome with patient feedback. Our findings suggest that local patient intervention is vital as different patient cohorts have different needs.