Identifying Important Outcomes for Young People With CKD and Their Caregivers: A Nominal Group Technique Study

• Published in: American journal of kidney diseases Vol. 74; no. 1; pp. 82 - 94
• Main Authors: Hanson, Camilla S., Gutman, Talia, Craig, Jonathan C., Bernays, Sarah, Raman, Gayathri, Zhang, Yifan, James, Laura J., Ralph, Angelique F., Ju, Angela, Manera, Karine E., Teixeira-Pinto, Armando, Viecelli, Andrea K., Alexander, Stephen I., Blydt-Hansen, Tom D., Dionne, Janis, McTaggart, Steven, Michael, Mini, Walker, Amanda, Carter, Simon, Wenderfer, Scott E., Winkelmayer, Wolfgang C., Bockenhauer, Detlef, Dart, Allison, Eddy, Allison A., Furth, Susan L., Gipson, Debbie S., Goldstein, Stuart L., Groothoff, Jaap, Samuel, Susan, Sinha, Aditi, Webb, Nicholas J.A., Yap, Hui-Kim, Zappitelli, Michael, Currier, Helen, Tong, Allison
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.07.2019
• Subjects: Adolescent; adolescents; Attitude to Health; Australia - epidemiology; Canada - epidemiology; caregiver; Caregivers - psychology; Caregivers - statistics & numerical data; Child; children; chronic kidney disease (CKD); Cost of Illness; Diagnostic Self Evaluation; dialysis; end-stage kidney disease (ESKD); Family Health - economics; Female; Focus Groups; Growth; Humans; Infections - epidemiology; Infections - psychology; Male; nominal group technique; outcomes; Patient Preference - statistics & numerical data; patient priorities; Pediatrics; qualitative research; Renal Insufficiency, Chronic - epidemiology; Renal Insufficiency, Chronic - physiopathology; Renal Insufficiency, Chronic - psychology; Renal Insufficiency, Chronic - therapy; subjective experience of disease; Survival; transplant recipient; United States - epidemiology; Young Adult; young adults; Australia; Canada; United States; dialysis; Pediatrics; adolescents; transplant recipient; patient priorities; chronic kidney disease (CKD); subjective experience of disease; children; caregiver; outcomes; young adults; end-stage kidney disease (ESKD); nominal group technique; qualitative research
• ISSN: 0272-6386; 1523-6838
• DOI: 10.1053/j.ajkd.2018.12.040

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. We used the nominal group technique whereby participants identified and ranked outcomes and explained their priorities. 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. Importance scores were calculated (scale of 0-1), and qualitative data were analyzed thematically. 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). Only English-speaking participants were recruited. 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.