The information needs of British Asian cancer patients are not being met because of a lack of consideration for cultural differences, according to a new report published in the British Journal of Cancer today.
Currently, no provisions are made to tailor the way the diagnosis of cancer is communicated to ethnic minority groups in the UK.
The study, carried out in Leicester, looked at the information preferences of British Asian patients – the majority of which were first generation and spoke English as well as their native language. It found that over half of English-speaking Asian patients would prefer to discuss their cancer and read health leaflets in their mother tongue.
Researchers believe there is an urgent need to change the way information about the disease is conveyed to the British Asian community in this country.
The study also found the great majority of British Asian patients and their white counterparts wanted as much information as possible about their disease.
Study author Dr Paul Symonds, from the Department of Oncology, Leicester Royal Infirmary, says: "Cancer is becoming an ever more important health problem for British Asians.
"In Leicester alone, over the last decade, we've seen the rates of prostate and lung cancer increase in men in the community and cases of bowel and breast cancer rise in women. British Asian males also have considerably higher rates of smoking than their white counterparts which means lung cancer rates will continue to grow.
"Patients cope better with cancer when they are provided with clear and adequate information tailored to their needs. In the past, studies have looked at how to best communicate information about cancer to British white patients but few have looked at the needs of ethnic minority groups in the UK.
"Instead assumptions have been made about the amount of information British Asian patients want and how they want it delivered."
Between September 2001 to 2002, researchers from the Leicester Royal Infirmary, University of Leicester and University of Nottingham, recruited 82 British Asian patients and 220 British white patients attending the Oncology Department of the Leicester Royal Infirmary, onto the study.
The majority of Asian patients were born outside the UK. There were six patients that were born in Britain. The average age was 50 for British Asian patients and 62 for British white patients.
Participants were interviewed by a doctor or radiographer who could speak English, Gujarati, Hindi, Punjabi, Urdu or Tamil.
They were asked questions about their information needs relating to their illness, their preferred source of information, whether a family member or friend accompanied them at their diagnosis, the importance of leaflets in Asian languages and opportunities to discuss their illness in their mother tongue.
They found that most of British Asian patients and British white patients wanted as much information about their disease as possible including the specific name of their illness, week-by-week progress, details of possible treatments and prognosis. Over 60 per cent of British Asian patients named their GP as their preferred source of information when compared with 5 per cent of white patients.
Researchers believe this is because many of the British Asian patients had Asian GPs. About 80 per cent of white patients wanted their hospital specialist to be their main source of information.
Around 55 per cent of English-speaking Asians wanted information on cancer to be conveyed to them in their own language and 50 per cent would like to read leaflets in an Asian language.
The study also found that more British Asian patients were alone during their diagnosis of cancer when compared with British white patients.
The vast majority of both groups thought friends and family should be present during the diagnosis. Around 25 per cent of Asian patients were not aware that friends or family could come to the consultation.
Dr Symonds says: "This study adds to the growing evidence that suggests the majority of people with cancer want to be fully informed about their illness whether the news is good or bad.
"The results show that first-generation British Asians prefer information on diagnosis, prognosis and treatment options to be given to them by their GP and not a nurse or hospital specialist.
"This is because many Asian patients in Leicester have Asian GPs and cultural and linguistic bonds mean they are more comfortable speaking to their doctor.
"In practice, most patients will be given their diagnosis by a hospital specialist but they should be encouraged to discuss their illness further with their GP in an Asian language if that is their preference.
"To facilitate these discussions letters could be rapidly sent to GPs after the cancer diagnosis listing recommendations for treatment and an assessment of prognosis."
Dr Lesley Walker, Director of Cancer Information at Cancer Research UK, which owns the British Journal of Cancer, says: "All communities should have access to clear, high quality information on cancer. We need to tailor health information to make sure important messages reach everyone irrespective of background, race or religion."