# The impact of chronic kidney disease on patient and caregiver quality of life: A qualitative study in Spain

## TL;DR

This study explores how chronic kidney disease affects the quality of life of patients and caregivers in Spain, highlighting emotional, physical, and social impacts.

## Contribution

The study provides novel qualitative insights into the lived experiences of early and advanced CKD patients and their caregivers in Spain.

## Key findings

- CKD impacts patients' physical, social, and emotional well-being throughout their healthcare journey.
- Patients exhibit varying attitudes toward the disease, such as acceptance or powerlessness.
- Caregivers play a crucial role but often experience significant burden.

## Abstract

Patients’ quality of life is a key consideration of chronic kidney disease care. Nonetheless, qualitative research on patients’ experience, quality of life, and frequent associated comorbidities remains limited. This study identifies aspects of the disease experience, healthcare journey, and caregiver experience contributing to quality of life for early-stage (stage 3 CKD) and advanced chronic kidney disease (stages 4–5) patients and their caregivers. In this cross-sectional, observational, multicenter study based on qualitative methodology, participants completed a general (Short Form-36) and disease-specific (Kidney Disease Quality of Life Short Form−36) quality of life assessment and semi-structured interviews. Quota and convenience sampling were used to enroll 36 patients selected by clinicians based on chronic kidney disease stage and the presence of key comorbidities (heart failure, hyperkalemia). Twelve caregivers were also invited to participate in patient interviews. All data were examined thematically. Three themes emerged: (1) Impact of chronic kidney disease on quality of life throughout the patient journey (physical, social, and emotional); (2) attitudes toward the disease (characterized by ‘acceptance’ or ‘powerlessness’); and (3) caregivers’ role and burden. Patients’ characteristics and caregiver support must be considered for designing medical interventions and improvement of patient-doctor communication. Family caregivers are pillars clinicians should rely on to raise awareness about chronic kidney disease’s relevance among patients and families.