Understanding inequalities in cancer diagnostic outcomes for people with Learning Disabilities

Background

There are around 1.5 million people with learning disabilities (PwLD) in the UK. The LeDeR programme, reporting on lives and deaths of PwLD in 2022, found cancer to be the second most common cause of death, accounting for 15.7% of avoidable mortality. PwLD were found to be the most disadvantaged for cancer diagnostic outcomes in our recent work on the impact of comorbidities on cancer.

This application addresses intervention development to improve these inequalities, drawing on research skills including health psychology, data science, epidemiology, implementation research and specialist clinical knowledge, and significant engagement with stakeholders. Research questions

What are the main personal, social and organisational factors that contribute to inequalities in cancer diagnostic outcomes for PwLD? What is the current evidence for interventions to support symptomatic cancer diagnostic pathways for PwLD? Where in the diagnostic process are avoidable delays occurring for PwLD?

What features of cancer do PwLD tend to present with and are they reliably acted on with referrals and investigations?

How are symptomatic cancer diagnostic pathways and interventions for PwLD currently experienced by patients and carers, healthcare staff, social care, system leaders and charities?

How does local context affect implementation of interventions to redress inequalities in cancer diagnostic outcomes for PwLD?

What are the acceptable and feasible possibilities for tailoring existing interventions or designing new interventions to redress inequalities in symptomatic cancer diagnostic pathways for PwLD at scale? Aims and objectives

Aim: To produce a comprehensive picture of what causes inequalities in cancer diagnostic outcomes for PwLD, what interventions exist to redress these and whether these are amenable to scalable implementation.

Our objectives are to scope published international evidence about effective interventions that may improve cancer diagnostic pathways for PwLD; identify avoidable delays and inequalities for PwLD in the cancer diagnostic process using health system data; identify existing interventions to support PwLD with cancer diagnostic pathways and how they work in routine practice; and extract ‘key ingredients’ of effective interventions and consider their potential implementation and evaluation at scale.

Methods This is a mixed methods study comprising four work packages including:

-A scoping review to synthesise evidence relating to effective interventions that improve access to primary care and diagnostics for PwLD (RQ1 & RQ2)

-Quantitative analysis of large, linked routinely collected electronic health records from primary care, secondary care and the national cancer registry (RQ3 & RQ4)

-Multi-site case study of three integrated care boards in England, including observations of practice and interviews with patients and a wide range of health and social care staff (RQ5 & RQ6) -Data synthesis and stakeholder engagement (RQ7) Timelines for delivery This project will run for 30 months.

Anticipated impact and dissemination

By understanding the ‘key ingredients’ of effective interventions, we hope to improve cancer diagnostic processes, with implications beyond cancer and the UK. Collaborations with policymakers, professional bodies, and charities will aid dissemination through easy-read summaries, videos, and academic papers, ensuring broad inclusivity, accessibility and impact.