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

Abstract

Rationale and 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 and participants: Young people with CKD (stage 1-5, dialysis or transplant) and their caregivers were purposively sampled from six centers across Australia, the United States and Canada. Analytical Approach: Importance scores were calculated (scale of 0 to 1), and qualitative data were analyzed thematically. Results: Thirty-four patients (aged 8-21 years) and 62 caregivers participated in 16 groups, and identified 48 outcomes. The five 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). Twelve 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. 4 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.

Developing Consensus-Based Outcome Domains for Trials in Children and Adolescents With CKD: An International Delphi Survey

“…Kidney function was considered critical to monitoring disease progression and planning for dialysis or transplantation, a similar concern in adults with CKD. 23 Other outcomes that were thought to be potentially life-threatening or with a high burden of treatment, such as infection, cardiovascular disease, or blood pressure problems, were also prioritized highly by all groups. Infection is also the most frequent cause of hospitalization in patients requiring KRT, [29][30][31][32][33][34][35] which may explain the higher prioritization of this outcome.…”

“…For round 1, we included outcome domains based on a systematic review and a nominal group technique study with patient and caregivers. 14,23 We designed 2 versions of the surveys with the same list of outcomes: 1 for adult participants (caregivers and HCPs) and 1 for children (patients) with a reading level of 8 years and included images and emojis to explain the outcomes visually. For both surveys, an age-appropriate plain-language definition was given for each outcome (Tables S2 and S3).…”

Calidad de vida en los niños que viven con Enfermedad Renal Crónica

“…Estos pacientes requieren múltiples y frecuentes estudios, dentro de los que se encuentran hemogramas, química sanguínea, pruebas de función renal, imágenes diagnósticas y biopsia renal. Esta enfermedad produce complicaciones especícas a corto, mediano y largo plazo, como problemas en el desarrollo y crecimiento, al igual que enfermedades metabólicas, óseas, nutricionales, psicosexuales y cardiovasculares (2,3), que generan afectaciones sistémicas. Es menos frecuente en los niños y produce cambios en la vida escolar, en la relación con sus pares e incluso en sus propios intereses (4,5), producto de los frecuentes controles médicos, tratamientos farmacológicos e ingresos hospitalarios (6).…”

Engaging Patients and Family Members to Design and Implement Patient-Centered Kidney Disease Research

“…[23][24][25][26][27][28][29][30][31][32][33][34] The international Standardised Outcomes in Nephrology (SONG) initiative has also resulted in numerous publications and guidelines for CKD patient-centered outcomes in research. [35][36][37][38] Kidney disease PCOR can help promote patient-centered care in kidney disease settings and can also help the kidney disease community meet the goals of the 2019 CMS Treatment Choices Model 39 and Advancing American Kidney Health initiative 40 that aim to improve patient outcomes. Recent research suggests that patients with kidney disease prioritize very different outcomes than health care professionals, 25,[41][42][43] and including patients and family members as research partners may help address this discordance as well as improve kidney disease care quality.…”