Inequalities in cancer diagnostic outcomes for patients with a learning disability: a retrospective cohort study in England

ObjectivesThe cancer diagnostic process may be more complicated for patients with a learning disability ("intellectual disability" outside of the UK) than for other patients. We aimed to investigate whether patients with a learning disability were more likely to experience disadvantage in cancer diagnostic pathways and outcomes. DesignA retrospective cohort study using routinely collected linked data across primary and secondary care, and cancer registration. Setting1470 general practices in England. Participants277,050 participants who were aged 40+ years, had an incident cancer recorded in the cancer registration during 2012-2018 and were registered for at least three years at their general practice prior to diagnosis. Main outcome measuresEmergency presentation route to diagnosis or urgent suspected cancer referral route to diagnosis, cancer stage at diagnosis (early vs advanced) and all-cause mortality within 30 days after diagnosis. Results277,050 patients were included in the study, with 796 (0.3%) patients having a record of a learning disability. Patients with a learning disability were over twice as likely to be diagnosed via an emergency presentation (aOR:2.65, 95%CI:2.26-3.11, p<0.001), and half as likely to be diagnosed via an urgent suspected cancer referral (aOR:0.51, 95%CI:0.43-0.60, p<0.001). They were also more likely to be diagnosed with advanced-stage cancer (aOR:1.37, 95%CI:1.12-1.67, p=0.002), especially for breast cancer, and to die within 30 days of diagnosis (aOR:3.77, 95%CI:3.10-4.59, p<0.001) than patients without a learning disability. ConclusionsPatients with a learning disability experience marked inequalities in cancer diagnostic pathways and outcomes. The increased risk of advanced-stage breast cancer is of particular note. Improved support to access and navigate the health care system may be required to negate experienced difficulties during the diagnostic process. Summary boxO_ST_ABSWhat is already known on this topicC_ST_ABSO_LIPatients with learning disabilities experience avoidable mortality after a cancer diagnosis. C_LIO_LIGreater dependence on others, low symptom awareness and difficulties accessing and navigating the health care system during the cancer diagnostic process potentially contribute to worse outcomes, particularly for more severe learning disability. C_LI What this study addsO_LIConsidering all cancer sites except non-melanoma skin cancer, we found that having a record of a learning disability was associated with an increased likelihood of being diagnosed at an advanced stage, especially for breast cancer, and increased mortality within 30 days after diagnosis. C_LIO_LIPatients with a learning disability were more likely to be diagnosed as an emergency, and less likely to be diagnosed via an urgent suspected cancer referral. C_LI How this study might affect research, practice or policyO_LIPatients with a learning disability require better support to negate existing inequalities in diagnostic pathways and outcomes C_LI