559 - Understanding Priorities of Patients, Caregivers and Clinicians in Pediatric Nephrology Decisions: A Best-Worst Scaling Study

Publication Number: 4547.559

Hyeyoung Ryu, Vanderbilt University Medical Center, Nashville, TN, United States; Zixuan '. Xu, University of Washington School of Medicine, Seattle, WA, United States; Ryan Hutson, Johns Hopkins University School of Medicine, Baltimore, MD, United States; Jaime Snyder, University of Washington, Information School, SEATTLE, WA, United States; Cozumel S. Pruette, Johns Hopkins University School of Medicine, Baltimore, MD, United States; Aaron Wightman, University of Washington School of Medicine, Seattle, WA, United States; wanda Pratt, University of Washington, Seattle, WA, United States; Ari H. Pollack, Seattle Children's, Seattle, WA, United States

Background: Collaborative decision-making (CDM) is central to high-quality pediatric care, requiring shared engagement among patients, caregivers, and clinicians. Chronic kidney disease (CKD) offers a salient context for studying CDM due to its complex trajectories, treatment coordination, and family impact. Understanding how each group prioritizes decision factors is essential for designing tools that support value-aligned, inclusive CDM.

Objective: To identify and compare decision-making priorities among youth CKD patients, caregivers, and clinicians to inform value-aligned decision support systems.

Design/Methods: Youth with CKD (12-25 years), youth caregivers, and clinicians were recruited from sites within the North American Pediatric Renal Trials and Collaborative Studies network. Participants completed a best-worst scaling (BWS) survey with 25 choice tasks representing four attributes: decision topic, decision-making process, information source, and decision motivation. Attribute levels were derived from prior qualitative work, refined through iterative review, and pilot tested. An orthogonal main effects design balanced presentation and reduced fatigue. BWS scores represent the difference between the number of times an attribute was selected as "most important" and "least important", normalized to enable comparison across groups.

Results: 126 youth, 83 caregivers, and 59 clinicians participated. Patient quality of life was prioritized for all (Figs 1-3). Youth most valued minimizing hospital stays (0.47) and life participation (0.44); caregivers had similar goals. Clinicians valued these priorities, but with smaller weights: life participation (0.15) and easing the CKD experience (0.09). All groups preferred collaborative over unilateral decisions, but youth favored involving all parties (0.23) while clinicians preferred direct clinician-patient collaboration (0.25). Clinical expertise was the most trusted information source, compared to peer and internet sources. Compared to motivations and processes, decision topics had a lower influence across groups.

Conclusion(s): All stakeholders endorsed collaboration but differed in emphasis. Youth and caregivers focused on maintaining normalcy and minimizing disruptions, while clinicians emphasized partnership and expertise. These differences highlight communication gaps and opportunities for decision-support tools that reveal and reconcile values across groups. Systems that integrate patient-reported goals with clinical data or guide value elicitation through structured prompts could enhance alignment and strengthen CDM in pediatric CKD care.

Figure 1. Patients' Normalized Best-Worst Scaling Scores.
This figure shows normalized best-worst scaling (BWS) scores for all attribute levels rated by pediatric patients. Attributes are grouped into four categories: Motivation, Process, Information Source, and Decision Type. Within each category, items are ranked from top to bottom by their normalized BWS scores, ranging from +1.0 (most important) to −1.0 (least important). The color gradient represents relative importance, with red indicating higher importance and blue indicating lower importance.

Figure 2. Caregivers' Normalized Best-Worst Scaling Scores.
This figure shows normalized best-worst scaling (BWS) scores for all attribute levels rated by caregivers. Attributes are grouped into four categories: Motivation, Process, Information Source, and Decision Type. Within each category, items are ranked from top to bottom by their normalized BWS scores, ranging from +1.0 (most important) to −1.0 (least important). The color gradient represents relative importance, with red indicating higher importance and blue indicating lower importance.

Figure 3. Clinicians' Normalized Best-Worst Scaling Scores.
This figure shows normalized best-worst scaling (BWS) scores for all attribute levels rated by clinicians. Attributes are grouped into four categories: Motivation, Process, Information Source, and Decision Type. Within each category, items are ranked from top to bottom by their normalized BWS scores, ranging from +1.0 (most important) to −1.0 (least important). The color gradient represents relative importance, with red indicating higher importance and blue indicating lower importance.