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Research highlights unmet care needs of people living with pulmonary fibrosis

Last Update 06/04/2021

A new review, published in the European Respiratory Review, has summarised the care needs of people living with pulmonary fibrosis and the people who care for them, which are not currently being met.

Pulmonary fibrosis is a condition where the lungs gradually become more and more scarred. It can have a big impact on a person’s life as common symptoms include breathing difficulties, a persistent cough, trouble sleeping and tiredness. People with the condition often experience anxiety about the future and there is a lack of disease information as it is a rare condition.

What did the study look at?

This study was a systematic review. This means it collects together all published, high-quality studies on the topic to provide a thorough overview of the evidence. In this case, the researchers analysed 35 studies that investigated the care needs of people with pulmonary fibrosis or their caregivers.

What do the results show?

The results found that the most common reported needs were around access to information, particularly on the following topics:

  • The use of oxygen
  • How the disease progresses
  • Medication
  • End-of-life-planning

Other needs that were also reported focused on their mental health. These included how people manage their anxiety, anger, sadness and fear. People were also concerned with being able to access further support, such as peer support, psychological support and support for families of people with pulmonary fibrosis.

Why is this important?

The review found that people with pulmonary fibrosis have a wide range of care needs, particularly for more information and better support for their mental health and wellbeing. The authors suggest that while medication for pulmonary fibrosis has been progressing, there have not been the same advances for managing the care needs of people with the condition. The results can be used to improve the care given to people living with pulmonary fibrosis and those who care for them.

Read the original research paper:

Title: The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review

https://err.ersjournals.com/content/29/156/190125#sec-22

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