People in England with a learning disability have a higher risk of cancer, especially before age 50, according to a study by researchers from The University of Manchester and The ChristieNHS Foundation Trust.

Their symptoms are investigated less often, they receive less treatment, and have a poorer prognosis according to the study published in the journal The Lancet Regional Health—Europe, for which the researchers used huge national datasets to inform the most comprehensive investigation ever carried out.

The study using linked primary care, hospital, and national cancer and death records from England, compared 180,911 individuals with a learning disability to over 3.4 million matched comparators.

According to the study, people with learning disabilities were about half as likely to be referred for urgent investigation when they had “red flag” symptoms that could be due to cancer. They were more often diagnosed after the disease had spread, when cure was not possible, and were less likely to receive surgery, radiotherapy, or systemic anticancer therapy.

Life expectancy after cancer diagnosis was significantly shorter, particularly among those with severe learning disability or Down syndrome, with most dying within four years of diagnosis compared with nine years among those without a learning disability.

The study found that several cancers were more common among people with learning disabilities. Rates of sarcoma were around twice as high, cancers of the central nervous system were three and a half times higher, testicular cancer was twice as high, and uterine cancer was about 70% higher compared with the general population.

While some cancers, including melanoma, breast and prostate cancer were less common among people with learning disabilities, those affected had up to a fourfold higher risk of death after diagnosis, highlighting possible delays in diagnosis and inequities in access to timely and effective treatment.

The research team also found that people with learning disabilities were more than 70% more likely to develop cancer before the age of 50. This pattern was especially strong for nervous system, uterine, ovarian and digestive tract cancers. Esophageal cancer in those under 50, was more than five-fold higher in those with a learning disability.

Lead author Dr. Oliver Kennedy, Clinical Lecturer at The University of Manchester and The Christie said, “We already know that people with a learning disability face poorer health outcomes, but the burden of cancer in this population is poorly understood.

“That is why this study, the most comprehensive population-based investigation of cancer in people with a learning disability, is so crucial to understand the immense challenges this vulnerable population group face in cancer care.

‘There is an urgent need for effective strategies to improve cancer detection and care’

Principal Investigator Prof. Darren Ashcroft from The University of Manchester is Director of the NIHR Greater Manchester Patient Safety Research Collaboration (GM PSRC) said, “People with a learning disability frequently encounter barriers to health care access, such as communication difficulties and diagnostic overshadowing, where clinicians might attribute new symptoms to an existing diagnosis instead of investigating other possible causes.

“These contribute to poorer health outcomes in general. On average, adults with a learning disability die 19–23 years earlier and it is widely accepted that 42% of deaths are considered preventable.

“This study highlights critical gaps and persistent uncertainties in cancer care for people with a learning disability that merit further investigation.”

Dr. Kennedy added, “We suspect many people with learning disability experience missed opportunities for earlier diagnosis given the reduced likelihood of urgent suspected cancer referral following red-flag symptoms.

“This was probably why more cancers were diagnosed outside the urgent suspected cancer referral pathway, and more frequently at an advanced stage.

“Barriers such as lack of staff training, communication challenges and inflexible appointment systems may also contribute to these disparities.”

Jon Sparkes OBE, chief executive of learning disability charity Mencap, said, “We already know that cancer is the second most common cause of avoidable death among people with a learning disability. It’s unacceptable that late diagnosis and lack of urgent referral for treatment is costing people with a learning disability years of life.

“Melanoma, breast and prostate cancer are eminently treatable, yet people with a learning disability are four times more likely to die of them even after diagnosis. There’s something deeply wrong when people die for want of proper screening or treatment.

“The NHS must do better, with priority screening at a younger age and urgent referral for people with a learning disability, who we know are at greater risk of certain cancers.”