Experts, patients propose recommendations to improve clinical care of pediatric CKD
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A group of experts, patients and caregivers proposed recommendations to improve clinical care of pediatric patients with chronic kidney disease in a special report published in the American Journal of Kidney Disease.
“Although clinical guidelines and recommendations for the care of children with CKD exist, few incorporate the patient and parent perspectives on priorities and challenges,” Bradley A. Warady, MD, from the division of pediatric nephrology at Children’s Mercy Kansas City, and colleagues wrote. “Moreover, while such patient and family experience data are increasingly sought by regulatory agencies, they are rarely reported in combination with the perspectives of health care professionals.”
During a 1.5-day workshop in December of 2018, the National Kidney Foundation hosted 32 medical experts in pediatric nephrology and 10 parents and children/adolescent patients with CKD.
“The participation of patients and parents/caregivers living with childhood CKD in the workshop discussions added a novel dimension, experience-based relevance and credibility, and represents a key element to enhance the strength of the proposed recommendations,” Warady and colleagues wrote.
Attendees listened to plenary talks before dividing into five breakout groups to discuss key clinical recommendations for clinical care issues that pediatric patients with CKD experience.
Group leaders then shared the recommendations for editing. Refinements were done through audience and post-meeting discussions.
All key clinical recommendations were scored semi-quantitively by participants for ease of clinical implementation, expected time to implementation and clinical importance. Researchers used this scoring method to determine a composite score to prioritize key clinical recommendations regarding feasibility and importance of implementation.
Overall, the final topics were as follows:
- Topic 1: Addressing the needs of patients and parents/caregivers;
- Topic 2: Modifying the progression of CKD;
- Topic 3: Clinical management of CKD-mineral and bone disorder and growth retardation;
- Topic 4: Clinical Management of anemia, hypertension and cardiovascular disease; and
- Topic 5: Transition and transfer of youth with chronic kidney disease to adult care.
Based on the composite scores, researchers identified recommendations for topics 2 to 4 that could be successfully implemented. However, recommendations for topics 1 and 5 did not show as much potential for implementation.
Recommendations included developing self-management strategies so patients can self-advocate, recognizing nephrotic potential of medications earlier to avoid administering these medications and basing daily intake of calcium on normative values for age.
“Ideally, this information will be incorporated by clinicians into pediatric nephrology practices and will not only further stimulate shared decision-making, but will also enhance recognition of the education, advocacy, and other actions necessary to facilitate improved care for children with CKD,” Warady and colleagues wrote. They added, “Moreover, these recommendations also reflect input from patients and parents/caregivers living with childhood CKD, which lends life experience to the recommendations. This is an important contribution that we believe has been absent from pediatric CKD-related recommendations to date, but that should be incorporated into the development of all future clinical recommendations and more formal guidelines.”
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