Currently little is known about the relationship between the severity of a patient’s symptoms with advanced respiratory disease and ADL disability. In this study, ARC palliative and end of life care researchers, led by Professor Irene Higginson, will aim to better understand this relationship to help identify timely and appropriate interventions, such as rehabilitation. 

Rehabilitation treatment towards the end of life is complex, involving multiple combinations of treatments that are adapted to the patient or setting, to achieve different outcomes. This complexity demands a better understanding of the needs of people receiving rehabilitation, so that we can model interventions, before testing and evaluating them.

The changing epidemiology of advanced cancer or respiratory disease

Globally, 9.8 million people died from cancer in 2018. Each year between three to four million people die from chronic respiratory disease. Due to advances in treatment, particularly in lung cancer, people are now living with advanced disease for longer, prolonging symptoms and disability. As a result, these people may have new needs, which require new strategies to successfully manage their symptoms.                     

Covid-19 pandemic and the impact of social isolation

As part of the UK response to the Covid-19 pandemic, the government enforced social distancing rules on everyone. Patients with lung cancer or respiratory disease were also advised to stay at home and socially isolate for weeks. Social isolation is strongly associated with functional impairments in older people and people with cancer, and is a major contributor of mortality in older adults. It is also a predictor of emergency attendance and hospital admission in people with COPD and older people. 

What is the aim of this study?

The aim of this study is to compare and contrast trajectories of disability in activities of daily living (ADLs) over time, among adults with advanced lung cancer or respiratory disease during the Covid-19 pandemic. The researchers will explore associations between disability in activities of daily living and older age, multimorbidity, type of lung disease, or ethnicity.

The researchers will examine the consequences of enforced social isolation in people with advanced lung cancer or respiratory disease on their daily function and the impact decline in function may have on health and social care services during and after the pandemic. This will help researchers, commissioners and policymakers to understand how this population has been affected by the pandemic and to plan for rehabilitation and social care needs.

How is the study being conducted?

This is an observational study, which is being carried out with hospital lung cancer and respiratory patients and hospice patients (both in and outpatients), and community services.

We are aiming to recruit 200 patients across 10 sites. We will also be working with lung cancer clinical nurse specialists, respiratory consultants and palliative care teams.