Developing a tool to improve patient experience and engagement with their recommended lung cancer care pathway: Exploring the impact of distance and disadvantage in urban and rural settings

  

Background

Lung cancer is the third most common cancer in the United Kingdom and the leading cause of cancer mortality globally. Timely diagnosis and treatment are essential to improve lung cancer outcomes. The National Optimum Lung Cancer Pathway was introduced to encourage best practice and reduce delays in diagnosis, staging and treatment. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, make achieving this challenging. Organisational and patient-related factors can also impact the extent to which a patient attends, understands, and undergoes each investigation, test, and treatment that forms their recommended care pathway. There are stark inequalities in cancer care and outcomes, with patients from deprived areas having poorer cancer outcomes. Patients in remote rural and coastal areas, or densely populated urban communities, will face overlapping and unique challenges to engaging with care and receiving timely diagnosis and treatment. To address inequalities in cancer outcomes, we must understand and address the underlying factors which influence access to and engagement with lung cancer care. Here we report on the development of a tool which aims to improve lung cancer patients’ and carers’ engagement with and experience of the lung cancer care pathway.

Methods

A pragmatic, evidence-and theory-based intervention development process is running from November 2023 to September 2024, informed by Medical Research Council and INDEX guidelines. A rapid systematic review aims to identify and synthesise literature describing patient engagement interventions that support people diagnosed with lung cancer. Interviews with people with lung cancer (n=60) and their informal carers (n=30-60) in Lincolnshire and North East London aim to explore how their characteristics and location in relation to specialist services impact on their capability, opportunity, and motivation to attend and participate in their recommended lung cancer pathway. A series of stakeholder workshops will explore healthcare professional and administrative perspectives of the barriers and facilitators for patient engagement and experience, and to help develop the patient engagement tool. This programme of work is supported by regional PPIE groups who provide region-specific insights throughout development. Data will be triangulated using the COM-B model of behaviour change, and intervention and service mapping, to identify modifiable behavioural factors to target with the intervention.

Results 

After full-text screening, 27 papers were eligible for inclusion in the rapid review; synthesis is underway. Preliminary interview findings and insights from the workshops suggest that patients can be overwhelmed by a cancer diagnosis and struggle to process the large volume of new information provided during appointments early in the diagnostic and treatment pathway, which can hinder their engagement. Patients are often required to make long and frequent journeys to attend appointments across multiple sites in different locations, but hospital transport is slow and inconvenient. Some patients in North East London can use public transport, but personal cars are essential for patients in rural Lincolnshire, both of which can incur significant costs.  Many patients or their carers may need time away from work to access care, which is not always viable, and can delay or prevent engagement in tests that are crucial for early diagnosis and treatment. Relationships with nurse specialists were reassuring and supported early and sustained engagement; speaking to people with similar experiences of lung cancer could be positive and informative for patients and their families. The first stakeholder workshops were conducted in March 2024. Tool development and emerging findings will be presented. 

Conclusion

The resulting patient engagement tool aims improve health outcomes and patient experience, by addressing both general and location-specific barriers to lung cancer care. The tool will be designed for implementation early in the cancer care pathway to facilitate swift diagnosis and support sustained access to timely treatment. The intervention will help address disparities in experiences and health outcomes by directly targeting factors that lead to inequalities in lung cancer patient engagement.