Increasing opportunities for patients to self‑manage their indwelling pleural catheter, if they want to, by co‑developing an intervention with patients, carers and healthcare professionals.
Why the research is needed?
A pleural effusion is a build-up of fluid around the lung. In the UK, about quarter of a million people develop a pleural effusion each year, usually caused by advanced cancer or organ failure. People with a pleural effusion feel breathless and can’t do the things they want to. Draining the fluid improves breathlessness and quality of life. This can be done by inserting a semi-permanent tube called an indwelling pleural catheter (IPC). This is drained at home about three times a week, usually by a community nurse, but can be done by the patient or family/unpaid carer – this is called self-management. Self-management gives patients freedom to drain their catheter when needed, without waiting in for a nurse, and reduces community nursing workloads. Despite these benefits, not all patients get the opportunity to self-manage.
What are we doing?
Funded by the NIHR Research for Patient Benefit programme, this study aims to help more patients self-manage their indwelling pleural catheter if they want to by co-developing an intervention (with patients, carers and healthcare professionals) to support self-management.
Stage 1: Throughout 2025 we talked to patients with IPCs as well as their families/unpaid carers to find out their views on self-management and what stops people who could self-manage from doing so. We also asked them what might help them to self-manage.
Stage 2: Throughout 2025 we talked to healthcare professionals looking after patients with IPCs to understand what they think about self-management. This included community nurses and the hospital teams who put indwelling pleural catheters in. We also talked with companies involved in the manufacture of IPCs.
Stage 3: From the first two stages of this project we have a good idea of what stops people from taking on the drainage of their own IPC and what support is needed to make this possible. Along with our patients, their families and healthcare professionals, we are now holding workshops to design an intervention that will help those people who want to, to manage their own IPC. This will include developing resources for both patients, families and healthcare professionals.
How are we working with communities, services and organisations?
We have a Patient and Public Involvement and Engagement (PPIE) group made up of patients with lived experience of IPC, breathlessness and/or self-management of a medical device. This group have helped with the research, from designing information sheets and participating in our Study Advisory Group meetings, to analysing the data and helping run the co-development workshops.
What will the impact and benefits of this research be?
Awareness of IPC self-management will be raised among healthcare professionals leading to greater numbers of patients being offered the option of supported self-management. The confidence of both healthcare professionals and patients/families to successfully self-manage will be increased through access to resources and educational materials. Our research has highlighted evidence gaps including a lack of research into the dressings used for IPC. Our findings will be used to develop further research aimed at filling these gaps.
What do we have planned for knowledge mobilisation and implementation?
We will publish our results at conferences and in academic journals and will host resources for both patients/family and healthcare professionals online. We will use a number of other methods for publicising our results and resources including podcasts and webinars. In addition to hosting resources online we will use an existing network of nurses involved in IPC care to spread resources to those community trusts they work with. We will also seek to contribute to relevant guidelines.
Related papers, outputs and resources
We will co-design the intervention and we may include training sessions for healthcare professionals on how to teach self-management.
Who is involved?
- Joint Principal Investigator: Dr Adam Peel, Norfolk and Norwich University Hospital
- Joint Principal Investigator: Professor Morag Farquhar, University of East Anglia
- Professor Eleanor Mishra, Norfolk and Norwich University Hospital
- Dr Geoffrey Brandon, Public and Patient Involvement and Engagement (PPIE) Representative
Get in contact
Email Dr Adam Peel or Professor Morag Farquhar at Adam.Peel@nnuh.nhs.uk and M.Farquhar@uea.ac.uk.
