Emília Maria Dantas Soeiro on behalf of the Department of Pediatric Nephrology of the Brazilian Society of Pediatrics
Rejane de Paula Bernardes on behalf of the Department of Pediatric Nephrology of the Brazilian Society of Nephrology
Chronic kidney disease (CKD) is considered a worldwide public health problem and, consequently, Brazilian. It is estimated that 11% of the adult population has some CKD degree, approximately 13 million people in Brazil. CKD has a silent and asymptomatic course in the early stages of the disease, which slows the diagnosis. Studies point to a significant increase in the incidence and prevalence of CKD in the last decades, not only in developed countries but also in developing countries. In Brazil, the prevalence of CKD is 20 cases / million in the pediatric age group, with regional differences. Existing records refer to patients with an advanced stage of disease under renal replacement therapy (RRT). Early-stage is underestimated because of a late CKD diagnosis. In recent years, much has been said about early diagnosis and prevention to avoid the disease, contain its progression and control its comorbidities.
Compared to the disease in adults, the number of CKD cases in the pediatric age group is proportionally lower. However, children with CKD have high rates of morbidity and mortality rates30 times higher when compared to those without kidney disease, mainly due to late start of treatment and the high prevalence of non-adherence to treatment for multifactorial reasons.
The insidious, asymptomatic, progressive nature and the high prevalence of CKD justify the need for campaigns. Every year, on the second Thursday of March, the whole world celebrates World Kidney Day. This year’s theme will be “Living well with kidney disease”, whose goal is to promote more proactive participation in the treatment and motivate the patient’s inclusion in every life. The Department of Pediatrics of the Brazilian Society of Nephrology and the Department of Nephrology of the Brazilian Society of Pediatrics manifest themselves in this document to spread information about the problem of children with CKD and the interventions necessary to improve the quality of life of these affected children and adolescents.
Living with a chronic disease with no cure is not easy for children with CKD and their families. In addition to the disorders caused by the primary disease, this disease also affects children’s general development. To “live well with kidney disease”, many conditions are necessary: dietary restrictions, numerous medications, and, in advanced cases, RRT (dialysis and transplantation) to maintain life. This context, associated with the symptoms of the disease, comorbidities, side effects of medications, among other factors, impair cognitive and psychosocial development, school performance, and, consequently, quality of life.
CKD is severe and complex, and treatment involves the control of various systems (renal, urinary, metabolic, bone, cardiovascular, anemia, among others), as well as psychological and social issues. The patient and family must understand the role of each therapeutic intervention. “Living well with kidney disease” implies correcting all these factors so as they can develop as close to normal as possible to perform their daily activities without debilitating symptoms. Studies show that the better informed the patient is about treatment, the greater is adherence. Having control over one’s own health is a form of empowerment that leads to an increase in self-esteem and makes it possible to have a more positive view of the future.
Children depend on their caregivers. The great challenge is to create a program that contemplates taking care of the social, psychological, cultural, and educational issues of theses families so that they have an adequate adherence to treatment and make it possible to “live well with kidney disease”. It is necessary to promote support networks for children and family members and to strengthen the relationship between patients, family members, and professionals. Regarding education, considering that these patients spenda lot of time on dialysis treatment, it is essential to ensure teachers and/or educators in dialysis
Regarding adolescents, in addition to good communication with family members and staff who address their difficulties, it is necessary to anticipate the issue of transfer to a center for adults. This transition will only be successful if there is adequate preparation to promote acceptance of adolescents their families; effective communication between the pediatric and adult teams is a decisive factor. Many studies demonstrate the risk of worsening adherence in this transition, with serious repercussions for the patient’s life. Often, due to emotional difficulties, teenagers are reluctant to go to school, socialize and adhere to treatment. Improving self-esteem and resilience in treating the disease is essential.
In addition, in Brazil, we have to consider the various difficulties in accessing renal replacement therapy, high-cost medicines, appointments with multidisciplinary teams, transportation, hospitalization, and equity on the waiting list for kidney transplantation. Concerning these factors, it is up to societies, governmental, and non-governmental organizations to fight for better patient and team conditions.
The search for strategies that help children and family members follow the recommendations properly is today one of the main concerns of professionals, because it interferes with the evolution of the disease. Raise awareness and develop educational programs with a specialized and interdisciplinary team to better know the disease is the first step to motivate them. Periodic assessments of the impact of these activities on adherence behavior are essential. Knowledge must be continuously evaluated to understand the difficulties and identify the factors that interfere with its acquisition.
It should also be remembered that children and adolescents are not miniature adults; they are in development and need a broader and laborious approach; the interdisciplinary team should see the patient as a being with a future to be revealed. In this way, we can contribute so that our children and adolescents can “LIVE WELL WITH KIDNEY DISEASE.”
