Related Experiment Video
Updated: Jan 27, 2026
Author Spotlight: Capturing Infant-Caregiver Interactions Through Synchronized Multimodal Data Collection
Published on: May 31, 2024
Identifying Important Outcomes for Young People With CKD and Their Caregivers: A Nominal Group Technique Study
Camilla S Hanson1, Talia Gutman1, Jonathan C Craig2
1Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
Insights
Young patients with chronic kidney disease (CKD) and their caregivers prioritize survival, physical activity, and kidney function. Their concerns highlight the need for shared decision-making that addresses both immediate well-being and long-term health outcomes.
Area of Science:
- Pediatric Nephrology
- Patient-Centered Outcomes Research
- Chronic Disease Management
Background:
- Chronic kidney disease (CKD) significantly impacts young individuals and their families, necessitating a comprehensive understanding of patient and caregiver priorities.
- Current research often overlooks outcomes crucial for shared decision-making in pediatric CKD.
- Identifying key outcomes is essential for improving the quality of life and care for young people with CKD.
Purpose of the Study:
- To identify and rank outcomes that are important to young people with CKD and their caregivers.
- To inform shared decision-making processes by incorporating patient and caregiver perspectives.
- To bridge the gap between clinical priorities and the lived experiences of pediatric CKD patients.
Main Methods:
- A nominal group technique was employed to identify and rank outcomes.
- Purposive sampling recruited 34 young patients (aged 8-21) and 62 caregivers from 6 centers across Australia, the US, and Canada.
- Quantitative (importance scores) and qualitative (thematic analysis) methods were used to analyze 48 identified outcomes.
Main Results:
- Patients ranked survival, physical activity, fatigue, lifestyle restrictions, and growth as top priorities.
- Caregivers prioritized kidney function, survival, infection, anemia, and growth.
- Twelve themes emerged, reflecting immediate needs (e.g., feeling normal, resilience) and future concerns (e.g., health protection, prognostic uncertainty).
Conclusions:
- Kidney function, infection, survival, and growth are paramount for both pediatric CKD patients and their caregivers.
- Young patients emphasize lifestyle and normality, while caregivers focus on long-term health, current issues, and family burdens.
- Understanding these diverse priorities is crucial for effective, patient-centered care in pediatric CKD.
Rationale & Objective:
Chronic kidney disease (CKD) has wide-ranging and long-term consequences for young people and their families. The omission of outcomes that are important to young people with CKD and their caregivers limits knowledge to guide shared decision making. We aimed to identify the outcomes that are important to young people with CKD and their caregivers.
Study Design:
We used the nominal group technique whereby participants identified and ranked outcomes and explained their priorities.
Settings & Participants:
Young people with CKD (stages 1-5, dialysis, or transplantation) and their caregivers were purposively sampled from 6 centers across Australia, the United States, and Canada.
Analytical Approach:
Importance scores were calculated (scale of 0-1), and qualitative data were analyzed thematically.
Results:
34 patients (aged 8-21 years) and 62 caregivers participated in 16 groups and identified 48 outcomes. The 5 highest ranked outcomes for patients were survival (importance score, 0.25), physical activity (0.24), fatigue (0.20), lifestyle restrictions (0.20), and growth (0.20); and for caregivers, kidney function (0.53), survival (0.28), infection (0.22), anemia (0.20), and growth (0.17). 12 themes were identified reflecting their immediate and current priorities (wanting to feel normal, strengthening resilience, minimizing intrusion into daily life, imminent threats to life, devastating family burdens, and seeking control over health) and considerations regarding future impacts (protecting health/development, remaining hopeful, concern for limited opportunities, prognostic uncertainty, dreading painful and invasive procedures, and managing expectations).
Limitations:
Only English-speaking participants were recruited.
Conclusions:
Kidney function, infection, survival, and growth were the highest priorities for patients with CKD and their caregivers. Young people with CKD also prioritized highly the outcomes that directly affected their lifestyle and sense of normality, while caregiver's highest priorities concerned the long-term health of their child, current health problems, and the financial and family burdens of caring for a child with CKD.
Related Concept Videos
01:25Transformers with Off-Nominal Turns Ratios
01:12Sign Test for Nominal Data
For example, consider a...
00:56Nominal Level of Measurement
The data that cannot be measured but can be grouped into categories fall under the nominal level of measurement. Data that is measured using a nominal...
02:24Predicting Reaction Outcomes
01:24Nursing Process for Patient and Caregiver Teaching II: Planning and Implementation
01:13Outcomes of Glycolysis
Cellular respiration can occur aerobically (with oxygen) or anaerobically (without oxygen). In the presence of oxygen, cellular respiration starts with glycolysis and continues with pyruvate...