Patients with chronic kidney disease are more likely to take an active role in managing their health if they have specific information about what to eat, good communication with their doctor, and strong family support, researchers from Duke-NUS Medical School and SingHealth Polyclinics report in the journal BMJ Open.
Chronic kidney disease, which is the gradual loss of kidney function, is often linked with diabetes, and is one of the most rapidly rising causes of death worldwide. Most patients do not have symptoms until the disease is very advanced. Managing the condition through diet, exercise, taking medications and not smoking can prevent progression to end-stage kidney disease, which requires dialysis or a transplant.
“Self-management is key to managing chronic kidney disease,” said Professor Tazeen Jafar, from Duke-NUS’ Health Services and Systems Research Program, the principal investigator and a senior co-author of the study, who is a kidney specialist. “However, the barriers and facilitators to self-management early on in the disease have not been well studied. Identifying ways to empower patients can help improve health outcomes and reduce the need for expensive treatment.”
Prof Jafar and colleagues, including Duke-NUS medical student Sun Joon Hwang, interviewed 20 patients with diabetes and chronic kidney disease from three SingHealth polyclinics, who had not yet moved into dialysis, to get a better sense of their perceptions of their condition. In Singapore, one in four adults suffers from chronic kidney disease. Despite this prevalence, the researchers found many patients lacked knowledge about the disease.
“This research indicates that family physicians need to pay attention to patients with chronic kidney disease. We need to raise their awareness on how to effectively manage their risk factors to prevent the deterioration of their kidney function,” said Associate Professor (Dr.) Tan Ngiap Chuan, Director of Research at SingHealth Polyclinics and a co-author of the study.
“The public needs to recognize that chronic kidney disease is a common medical condition, especially among those with hypertension and diabetes mellitus and is largely preventable if mitigating measures are started early. Patients can take precautions to prevent it from rapidly progressing to more advanced stages. Do not hesitate to ask their family doctors for advice,” added Dr. Tan.
Many patients reported feeling overwhelmed and confused by information, either in the form of brochures at the doctor office or online. They felt they were not given specific guidance, especially on what to eat, for managing chronic kidney disease. Many are not sure what are acceptable options for when they frequently eat out. Patients suggested that a health coach providing tailored guidance on lifestyle, especially diet, will be helpful.
Another key finding was that most patients felt their doctors did not explain things clearly and did not listen to them, so patients did not feel comfortable asking questions about their condition. In contrast, patients took a more active role in their care when they had a good, trusting relationship with their doctor.
A third major factor was family support. Some patients did not seek help from family members in managing their disease because they did not want to burden their families. However, those who did have more family support, such as an adult family member reminding them what they should or should not eat, reported feeling more able to manage their disease.
A few patients took a passive attitude about their condition, saying that it was too late to do anything, and essentially delegated responsibility to doctors to manage the disease for them. Prof Jafar noted that the initial findings from this study showed how clearer information about diet and disease management, improved communication with doctors, and optimized family support can help increase the number of patients taking a more active role in their health.