Developing a self-administered CKD symptom assessment instrument

Area of Science:

• Nephrology
• Patient-Reported Outcomes
• Psychometrics

Background:

• Chronic kidney disease (CKD) therapies primarily focus on glomerular filtration rate (GFR) preservation, often neglecting patient-reported symptoms.
• A significant unmet need exists for comprehensive symptom assessment in CKD management.

Purpose of the Study:

• To develop and validate a novel instrument for measuring the prevalence and severity of a wide spectrum of symptoms in patients with CKD.
• To create a tool that captures symptom burden beyond traditional GFR-focused metrics.

Main Methods:

• A 37-item questionnaire was administered to 92 non-dialysis CKD patients, alongside the Kidney Disease Quality of Life instrument.
• Statistical analyses, including cluster and factor analysis, were used to identify symptom groups and assess validity and reliability.
• Exploratory common factor analysis identified four key symptom domains: neuropsychiatric, cardiovascular, uremia, and anemia.

Main Results:

• The most prevalent symptoms of at least moderate severity were fatigue ('tire easily'), limited physical activity, nocturia, joint pain, and frequent rest stops ('stop and rest often').
• Four common factors explained 73% of the variance: neuropsychiatric, cardiovascular, uremia, and anemia symptoms.
• The instrument demonstrated high internal reliability (alpha ≈ 0.9), good test-retest reliability, and strong convergent and discriminant validity, with minimal correlation to estimated GFR.

Conclusions:

• The developed instrument effectively measures symptom burden in CKD patients.
• Incorporating this tool into routine practice and clinical trials can improve comprehensive CKD patient assessment.
• This facilitates a more holistic approach to CKD care, addressing patient-reported experiences alongside physiological measures.