UK researchers who spoke to 48 patients with diabetes attending specialist renal services in Leicester, Luton and Ealing, discovered that awareness of the kidney risks posed by the disease was very low.
"The people we spoke to experienced feelings of surprise, fear and regret when they found out their kidney had been affected" says Professor Gurch Randhawa, Director of the Institute for Health Research at the University of Bedfordshire and an expert in diversity in public health.
"Some patients saw their kidney referral as a ''wake-up call'' that they needed to manage their diabetes more seriously, while others were concerned about their lack of knowledge about the disease. What was clear was that many of the patients we spoke to were much more aware of how diabetes could affect their eyes and feet than their kidneys.
"We believe this study highlights a serious need for more information about the risks that diabetics face from kidney disease."
Professor Randhawa teamed up with research fellow Emma Wilkinson to explore any differences in the experiences, knowledge and attitudes of white patients and South Asian patients.
"Previous UK studies have identified that South Asian patients have a greater risk of developing diabetes-related end stage kidney failure" says Professor Randhawa. "Despite this, there is growing evidence that they tend to be referred later for renal care and are more likely to be lost to follow-up."
The 23 South Asian patients and 25 white patients who took part in the study were aged between 34 and 79 - with an average age of just over 70. All had type 2 diabetes and had been accepted for clinical review at a specialist renal department. They had been diagnosed with diabetes for between six months and 40 years, with an average time since diagnosis of just under 15 years. Male patients accounted for 61 per cent of the South Asian group and 64 per cent of the white group.
Key findings of the study, which was funded by Kidney Research UK and the Big Lottery Fund, included:
The South Asian patients tended to be a lot younger than the white patients, which is consistent with studies that suggest that South Asian patients develop diabetic-related kidney problems at an earlier age. The South Asian patients ranged from 34 to 86, with an average age of just over 67, while the white patients ranged from 51 to 86, with an average age of just under 73.
A lot of the patients were unaware of possible kidney problems before their referral to specialist services. "...they were telling me that my kidneys could be affected because of the diabetes...he frightened me when he started talking about dialysis" said one South Asian male.
Many of the South Asian patients mentioned high levels of kidney problems and diabetes among friends and family, but few had realised the link between the two conditions. One South Asian female said she was only aware of the links because her brother was a doctor.
Patients often questioned why they had not been made more aware of the likelihood of kidney problems by the medical staff caring for them. "When you're first diabetic I think it should be made clear to you...I think I would have been a different person if I'd known" said one white female.
Some saw their diagnosis as a wake-up call that they needed to manage their condition better, while others felt confused and frustrated as they sought to make sense of their diagnosis. One white male said he didn't understand the link between his diabetes and kidney problems and "nobody has really explained it to me at any time."
In general, patients felt that they had received limited information about possible complications when they were diagnosed with diabetes. This had improved over time for some, but not for others. One white male told researchers that the medical profession "don't have time to sit and exchange information with me when they've got a queue of patients." Another said he was told he had diabetes and given a booklet to read.
"Our research shows that low awareness and lack of information about kidney problems are common in both the South Asian and white patients we spoke to" says Professor Randhawa. "In some cases this was exacerbated by language barriers.
"The findings also demonstrate that the long-term educational needs of patients who have had diabetes for many years are just as important as the need to make newly diagnosed patients aware of all the health risks they face."
The study will be published in the March issue of the Journal of Renal Care
