What is My Pleural Effusion Journey and who is it for?
My Pleural Effusion Journey is a patient-centred, accessible educational website designed for individuals diagnosed with malignant pleural effusion. Its primary aim is to provide clear, reliable information at a time when patients are often overwhelmed by both their diagnosis and the complexity of pleural care.
The website explains, in plain language, what a pleural effusion is and outlines the diagnostic and therapeutic pathways involved in its management. It focuses on how pleural interventions can help alleviate symptoms, improve quality of life, and support patients living with advanced metastatic disease.
Importantly, the resource is not limited to patients alone. It is also intended to support family members, carers, and healthcare professionals. The content is colour-coded and clearly structured, helping users navigate and absorb information that can otherwise be difficult to process during pleural consultations.
In addition, the website includes a series of educational videos that explain how malignant pleural effusions develop and what patients can expect from invasive pleural procedures. These visual resources aim to reduce anxiety, improve understanding, and empower patients to engage more confidently in shared decision making.
The website has recently undergone a significant rework. What changes have been made?
The website has recently been reviewed and updated to further enhance patient understanding of pleural effusions and their management. These changes were driven by patient feedback and clinical experience, with a focus on clarity, realism, and practical relevance.
Further pleural interventions have been added, for example, thoracoscopy, IPC insertion and Talc via IPC.
A range of images has been updated to ensure they are more realistic, to improve visual understanding of pleural procedures.
A summary page has been introduced to support information retention. This helps consolidate what has already been read.
A team across the UK, as well as colleagues in Australia, have developed a new section ‘Living with an Indwelling Pleural Catheter’. It provides practical, real-life guidance on resuming everyday activities after catheter insertion. Topics include discharge, bathing, swimming, sleep, and planning travel or holidays.
It addresses common symptoms and potential complications associated with indwelling pleural catheters, with clear advice on when to seek medical attention. It also discusses IPC removal and why this may be needed.
How will these changes benefit users of the website?
These updates significantly improve patients’ ability to understand, absorb, and reflect on information provided by their specialist pleural team, particularly at a time when consultations can feel overwhelming. By presenting complex information in a clear, structured, and accessible format, the website supports informed engagement with care.
A central benefit is the promotion of shared decision-making. The revised content empowers patients to take an active role in choosing interventions that align with their goals and are most likely to improve quality of life. The ‘Living with an Indwelling Pleural Catheter’ section is especially valuable, as it helps patients manage expectations and understand what daily life may look like following the procedure.
Clear explanations of diagnostic tests and interventions aim to reduce anxiety and improve confidence when consenting to procedures. The updates also support relatives and carers, while providing a reliable, practical resource for healthcare professionals and community nursing teams
Overall, these updates aim to provide reassurance, reduce anxiety, and empower patients with accessible, reliable information they can refer to when changes occur or questions arise at home.