Indwelling Pleural Catheters: Co-Developing an Intervention to Support Self-management

Research question: How can patients with an indwelling pleural catheter (IPC) and their family/unpaid carers be supported to self-manage? Background: Pleural effusion is the accumulation of fluid in the space between the lung and chest wall. It is a common complication of malignancy,1 and affects approximately 200-250,000 people annually in the UK2.

People with such an effusion experience disabling breathlessness; this is treated by draining the fluid using IPCs (semi-permanent chest drains). These are usually managed at home by community nurses, but this can be done by the patient, family member or carer.

Supported self-management is part of the NHS long term plan and British Thoracic Society guidelines3 state that patients should be supported to self-manage their IPC to promote independence.

However, there is no evidence to support these recommendations, nor guidance on how self-management should be facilitated. There is thus an evidence gap at the heart of current recommendations. Objectives: O1.

Identify support needs of patients with IPCs and their family/unpaid carers and how these impact on the acceptability and feasibility of self-management. O2. Identify barriers and motivators to IPC self-management among patients and family/unpaid carers. O3. Understand healthcare professional (HCP) attitudes toward, and practices related to, IPC self-management.

O4. Co-design and develop an evidence-based intervention to facilitate IPC self-management.

Methods: Three-stage applied qualitative study and co-design project:/ S1: semi-structured interviews with patients with an IPC and their family/unpaid carers regarding self-management and support needs. S2: focus groups and interviews with community nurses and IPC service staff regarding self-management.

S3: co-design and development of a self-management intervention. Timelines for delivery: S1-2: completion by August 2025 and disseminated by February 2026. S3: completion by April 2026 with dissemination activities continuing until August 2026.

Anticipated Impact and Dissemination The principal output will be a prototype self-management intervention for patients with an IPC and their family/unpaid carers that will: Empower patients, increase perceived symptom control, and reduce time spent waiting in for nursing visits; Relieve pressure on community nursing services and reduce healthcare costs; Support the NHS long term plan7 by enabling supported self-management; Facilitate more frequent drainage which may prevent re-accumulation of fluid4.

This work will also achieve a greater understanding of patient, carer and HCP attitudes and practices related to self-management and how self-management can be facilitated. This has the potential to impact not just patients with IPCs, but also others living with implanted devices.

Findings will be published and presented at national conferences e.g., British Thoracic Society Winter Meeting, Association of Respiratory Nurse Specialists Annual Conference, UK Pleural Society (UKPS) Research Conference.

Results will also be disseminated via the NIHR, Mesothelioma UK, and UK Pleural Society including incorporation of findings into relevant research reports/guidelines. Participants will receive a lay or HCP summary and webinar/seminar invitations. These will be recorded (subject to permission), edited and made available via the UKPS website ensuring wider access.

Future work will assess the impact of the intervention on patients, carers, and HCP, and the health economic impacts.