Testicular cancer is the 3rd leading cause of cancer death among men aged 18 to 50 years. In Europe, between 1979 and 2006 there was an 82% increase in incidence of testicular cancer.
‘People with learning disabilities or their care-takers should be educated on self-examination for testicular cancer and its different signs and symptoms in a suitable format based on their different language or cultural needs.’
In the U.K, an estimated 1.5 million people are classified as having learning difficulties.
Males with intellectual disabilities die approximately 13 years earlier than the general population, and females with intellectual difficulties die about 20 years earlier on average. Most of these deaths can be attributed to cardiovascular disease.
This is the first study that looks at the relationship between testicular cancer incidence and learning difficulties.
The research team, based at the University of Birmingham, also wants to test if this increased mortality rate applies to all cancers or just to testicular cancer.
The findings reveal that testicular cancer sufferers who also have learning disabilities (LD) have a 1 in 10 chance of dying from the cancer, compared to a 1 in 36 chance of the general population.
For the study all patients resident in England who have been diagnosed with 'mental retardation', or of 'developmental disorder of scholastic skills', or are attending either as an outpatient or an inpatient under the specialty of 'learning disabilities', between April 2001 and June 2015 were included.
Using the NHS's Hospital Episode Statistics database, a total of 158,138 male patients with learning difficulties were identified. Among them, 331 men had testicular cancer and 32 died of cancer.
In the general population 25,675 had testicular cancer with 713 cancer specific deaths, meaning that the rate of cancer deaths was significantly higher in people with learning difficulties.
The cancer prognosis in LD patients was poor, with 10 year cancer specific survival of 88.4% in the LD group compared to 96.8% in the general population.
The work's lead author Dr Mehran Afshar (St George's Hospital, London) said "We found that people with learning disabilities are not only more likely to develop testicular cancer, but are also far more likely to die from it than the general population. Testicular cancer is relatively rare, but if similar imbalances apply to all cancers, which we suspect to be the case, this would make excess cancer deaths associated with learning difficulties a significant public health issue. However, we don't yet have any statistics to confirm this. We are still processing the data on other cancers, such as prostate, breast and colorectal cancer".
"We propose that there might be several reasons which cause this disparity in survival, perhaps including the possibility that men with learning difficulties are not so good at self-examination, going to the doctor, and then following through with any treatment. It could also be that because consent is more difficult to obtain from these patients it affects the treatment they receive". Afshar added.
This vulnerable group of society with LD, does not derive much benefit from population-based education programs about health, as they are prone to under-enrolment into cancer screening programs and may lack the knowledge or ability to perform self-examination.
The UK study was presented at the European Association of Urology (EAU) conference in London.
Professor Jens Sønksen (University of Copenhagen) of the EAU Scientific Congress Committee said, "Recently we have seen an increased focus on inequality in health care as it appears that people of different backgrounds receive health care of different quality. This study is important because it identifies a vulnerable group of
patients at increased risk of cancer mortality. As health care professionals we will need to develop methods to provide better health care focused specifically on people with intellectual disabilities".