Clinicians offer perspectives on shared decision-making with children with CKD
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Clinicians reported striving to minimize treatment burden and working with children with chronic kidney disease and their parents to support shared decision-making, according to data published in the American Journal of Transplantation.
However, some clinicians said they feel responsible for children’s long-term outcomes and find pressure and system constraints to be obstacles in shared decision-making.
“When deciding about treatment efficacy, children with CKD prioritize outcomes that threaten their sense of normality (eg, school or sport participation) fatigue, and well-being, whereas clinicians give higher priority to hospitalization and mortality. Resolving such a mismatch in priorities and treatment goals is challenging and requires a sufficiently shared understanding of the expectations around the condition and its treatment(s),” Jasmijn Kerklaan, MD, pediatric nephrologist at Emma Children’s Hospital of the University of Amsterdam in The Netherlands, and colleagues wrote. “This study aimed to describe the clinician perspectives on shared decision-making in CKD.”
In a study of semi-structured interviews, researchers questioned 50 clinicians (32 were women; 32 were nephrologists; eight were nurses; 10 were allied health professionals; 26 had more than 10 years of clinical experience in nephrology) from 11 counties involved in providing care to children with CKD. All clinicians practiced in high-income countries, which may serve as a limitation of the study.
Researchers interviewed the clinicians between June 2016 and March 2020 in-person, by phone or by Zoom until no new concepts were raised after three consecutive interviews. Using thematic analysis, researchers identified patterns and links among themes in the interviews. All participants reviewed preliminary findings and provided feedback to ensure the results reflected the depth of the data.
Analyses revealed four themes: striving to blend priorities, focusing on medical responsibilities, collaborating to achieve better long-term outcomes supporting shared decision-making and forming cumulative knowledge. Each theme was broken down into subgroups of strategies clinicians used to make shared decisions.
“Our findings highlight that clinicians value partnership with parents and patients who emphasized the need to encourage ownership and participation in shared decision-making, and that children with CKD and their parents should be informed and educated about long-term effects of treatment and have realistic expectations about the child’s prognosis and treatment, including potential risks after kidney transplantation,” Kerklaan and colleagues wrote. “However, they report being challenged with system constraints that limit their ability to address critical issues including mental health, and sometimes they feel the pressure in being responsible for the child’s medical and long-term outcomes. Further studies on shared decision-making interventions for improving quality of care for children with CKD are needed.”
Researchers suggested training clinicians in shared-decision making and providing patients with child-friendly tools to help them express their treatment preferences, symptoms or lifestyle concerns.
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