Authors:

1. Dr Lucy Mitchinson, Centre for Cancer Screening, Prevention, and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, London, UK

2. Dr Samuel Cooke, Lincoln Institute for Rural and Coastal Health, College of Health and Science, University of Lincoln, Lincoln, UK

3. Dr Daisy McInnerney, Centre for Cancer Screening, Prevention, and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.

4. Dr William Ricketts, Barts Health NHS Trust, London, UK.

5. Dr Adam Januszewski, Barts Health NHS Trust, London, UK

6. Maria Lapuente, Barts Health NHS Trust, London, UK.

7. Dr Anna Lerner, Barts Health NHS Trust, London, UK.

8. Annie Reeves, Barts Health NHS Trust, London, UK.

9. Bing Smith, Barts Health NHS Trust, London, UK.

10. Ms Ava Harding-Bell, Swineshead Patient Participation Group, Swineshead Medical Group, Boston, UK.

11. Dr Zara Pogson, Lincoln County Hospital, United Lincolnshire Hospitals NHS Trust, Lincoln, UK

12. Ashley Whitely, United Lincolnshire Hospitals NHS Trust, Lincoln, UK

13. Joanne Shuck, United Lincolnshire Hospitals NHS Trust, Lincoln, UK

14. Sarah Civello, Lincoln County Hospital, United Lincolnshire Hospitals NHS Trust, Boston, UK

15. Dawn Skinner, Pilgrim Hospital, United Lincolnshire Hospitals NHS Trust, Boston, UK

16. Prof. Ros Kane, School of Health and Social Care, College of Health and Science, University of Lincoln, Lincoln, UK.

17. Dr Samantha Quaife, Centre for Cancer Screening, Prevention, and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, Charterhouse Square, London EC1M 6BQ, UK

18. Brian Knowles, Cancer Research UK, London, UK

19. Dr Michael D Peake, Glenfield Hospital, University of Leicester, Leicester, UK, and Cancer Research UK, London, UK

20. Prof Jo Waller, Centre for Cancer Screening, Prevention, and Early Diagnosis, Wolfson Institute of Population Health, Queen Mary University of London, London, UK

21. Dr David Nelson, Lincoln Institute for Rural and Coastal Health, College of Health and Science, University of Lincoln, Lincoln, UK

Abstract

Background: Lung cancer is the third most common cancer in the United Kingdom (UK) and the leading cause of cancer mortality globally. There are stark inequalities in cancer care and outcomes in the UK, with patients from deprived areas facing poorer outcomes. Timely diagnosis and treatment are essential for improving cancer outcomes, but patients in remote rural and coastal areas, or densely populated urban communities, likely face unique and overlapping challenges to engaging with care. We aimed to design a patient engagement intervention informed by lung cancer patients’ and carers’ experiences of the care pathway, rapid review evidence and stakeholder input.

Methods: A pragmatic, evidence- and theory-based intervention development process was taken. In-depth interviews were conducted with people with lung cancer and their informal carers from the contrasting areas of North East London and Lincolnshire. Purposive sampling was used to ensure diversity in treatment modality, gender, ethnicity, location, and carer relationship. A rapid review was conducted to identify patient engagement interventions for lung cancer patients, and barriers and facilitators to implementation. Three phases of stakeholder consultations were conducted to explore healthcare professional and administrative perspectives of the barriers and facilitators for patient engagement and experience, and to help develop the patient engagement tool. Data were triangulated using the Capability-Opportunity-Motivation Model of behaviour change (COM-B) and the Theoretical Domains Framework, to identify factors to target.

Results: Interviews were conducted with 54 lung cancer patients and 31 carers. 33 papers were included in the literature review. 39 healthcare professional and administrative stakeholders were consulted in two rounds of workshops (final workshop to be held in December 2024). A prototype tool was developed which maps out the lung cancer care pathway and signposts patients to trusted, lay-language information and local support services. The tool aims to address knowledge gaps or misconceptions, empower patients to prepare for appointments and engage in discussions, and instil motivation through goal setting, hopeful language and establishing appointment purpose.

Conclusions: This study sheds light on the experiences and challenges faced by lung cancer patient and carers in rural, urban and coastal areas. The resulting patient engagement tool aims to improve health outcomes and patient experience by addressing general and location-specific barriers to lung cancer care. The tool will help address disparities in experiences and health outcomes by addressing factors that contribute to inequalities in lung cancer patient engagement.