Co-Produced Patient Information Leaflets for Primary Spontaneous Pneumothorax
Primary spontaneous pneumothorax (PSP) affects approximately 3,000 people in the UK each year (The Lancet, 2020). This is when otherwise healthy lungs spontaneously leak air into the chest cavity via a small hole or tear. The air that escapes the lung causes an imbalance of pressure in the chest cavity which causes the lung to collapse.
Despite affecting thousands of people each year, there is little knowledge of what PSP is and what treatment options are available, including the Thopaz+ digital drainage and monitoring system which is a NICE recommended medical technology and currently part of the MedTech Funding Mandate. Read more about our work with Thopaz+ here.
Therefore, to increase patient knowledge and assist shared decision making the HIWM were approached by NHS England’s Patient and Public Involvement and Engagement (PPIE) Team to develop a patient information leaflet for PSP and its treatment options. A project steering group was set up which consisted of NHSE PPIE, the Accelerated Access Collaborative (AAC), consultant respiratory physicians from two NHS Trusts and the HIWM.
To ensure PPIE was embedded in the content of the leaflet, a focus group was set up involving patients who has experienced a PSP as well as the steering group and supporting colleagues. The patients’ experiences were taken into account and the content of the leaflet was redrafted ensuring it was co-produced with patients.
Once the co-produced leaflet was drafted, this formed the basis for a video to be produced as well as other accessible formats including Easy Read. Four languages were chosen for the leaflet to be translated into based on the most commonly requested interpreter languages at the Trusts from which the consultants in steering group were based. This was combined with the Census 2021 most spoken languages in the UK other than English or Welsh.
The resulting co-produced patient information leaflets can be seen below along with the explainer video which highlights the key points of the leaflet.
Here you can watch our two-minute explainer video animation which illustrates the key messages from the patient information leaflet. Further detail is included in the leaflets.