Living Well with Kidney Disease:
Is it a goal or a dream for children with chronic kidney disease?
Dr. Dharshan Rangaswamy, Head for Division of Paediatric Nephrology; Associate Professor, Department of Nephrology, Kasturba Hospital and Medical College, Manipal Academy of Higher Education, Manipal, India.
Globally, the second Thursday of March, is recognized as World Kidney Day, with an objective of increasing the awareness on kidney health. This year the World Kidney Day was on 11th March and the campaigns centred around “Kidney Health for Everyone, Everywhere: Living Well with Kidney Disease”. The focus is to educate, encourage and self-empower patients with chronic kidney disease (CKD), to participate in meaningful activities of one’s life. The emphasis is to improve the patients’ health-related Quality of Life by effective symptom-management furthering increased life-participation.
Registry data from the developed world indicates that children with end stage kidney disease (ESKD) on dialysis constitute around 1.5% of total dialysis population with a 5-year mortality rate of 11% in them. In India, an estimated two-third of all patients with ESKD died without receiving dialysis in 2010. This proportion can be even higher among the paediatric ESKD cohort due to limited availability of paediatric dialysis services available in India. Travelling distances to access renal replacement therapy (RRT), loss of wages for the accompanying attendants, the lack of medical insurance coverage for children and adolescents, the increasing out-of-pocket expenses etc. are some of the other reasons that contribute to the poor presence of children on RRT in India. The absence of a level playing field for children with ESKD often directs them to the palliative care pathway, not through choice, but through circumstance!
Over the last decade, paediatric palliative care services have extended beyond childhood cancers to involve other chronic illnesses such has chronic kidney disease. Discussions around the goals of care, prognostic discussions, emotional distress of patients and parents should all lead to the progress of a shared decision-making process. Associated congenital anomalies, life-threatening co-morbidities, size restriction and challenging access, often make renal supportive care the primary pathway for neonates and infants. An interdisciplinary team involving nephrologists, a palliative care team, paediatricians, and social workers should integrate psychosocial support, anticipating bereavement into the perinatal advance care planning. Older children can survive for years without dialysis and the main goal for them is to alleviate symptoms, maintain growth, improve school attendance, and integrate them into the various mainstream activities. The lack of organ donors and policies to accept only transplantable children to chronic dialysis programs often leave adolescents vulnerable and highlight the need for a well-coordinated transition care plan into adult services. The role of palliative care services is only going to get bigger with an increase in the incidence of chronic kidney diseases, mandating it to be an integral part of the disease management plan for children with kidney disease. Further discussion questioning the existing practices and strategies to optimize care in a resource-limited environment seems to be the challenge for this decade.