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.

Contributors

These patient information leaflets would not have been possible without the contributions of the following individuals and organisations:

Steering Group members and advisors:

Accelerated Access Collaborative:

• Nathalie Carter – Patient and Public Involvement (PPI) Manager
• Julian Louis – PPI Project Support Officer
• Phil Corran – Innovation Manager, MedTech Funding Mandate

Manchester University NHS Foundation Trust:

• Dr Matt Evison – Consultant Respiratory Physician
• Dr Chris Craig – Consultant Respiratory Physician
• Isabel Penman – Pleural Specialist Nurse

University Hospitals of North Midlands NHS Trust:

• Dr Martin Allen – Consultant Respiratory Physician
• Dr Mohammed Haris – Consultant Respiratory Physician
• Dr Moustafa Aboushehata – Pleural Clinical Fellow
• Mariet Antony – Pleural Specialist Nurse

Acknowledgements

The project team would like to acknowledgement colleagues across the country for their review and amendments on the content of this work including members of the British Thoracic Society Pleural Specialist Advisory Group. We would like to thank Rob Halifax, Amelia Clive, Laura McNaughton, Avinash Aujayeb, Farah Shiham and Duneesha De-Fonseka. And also Dr Mohammed Okour, Dr Anna Mowat from UHNM.

Focus group members

Patients with lived experience from Manchester University NHS Foundation Trust and University Hospitals of North Midlands NHS Trust.

Asthma + Lung UK members

Leaflet production suppliers:

NHS Design Service

Easy Read Online

Word 360

Silver Lining Animations

Thopaz+ manufacturer:

Medela UK Ltd

HIWM would like to thank all those involved especially the patients for sharing their experiences and the members of the steering group for their hard work and commitment to the project.