Impact of CKD on Life Participation in Latin America

Abstract

Introduction: Patients with chronic kidney disease (CKD) carry symptom and treatment burden, which together with comorbidities, can impair their ability to engage in life activities. Different values and priorities regarding life participation may vary depending on the population and setting. We aimed to describe the perspectives of life participation in patients with CKD not requiring kidney replacement therapy (KRT) in Latin America.

Methods: In April 2024, we conducted a workshop with facilitated breakout groups (small group discussions) involving patients, caregivers, and health care professionals in Spanish language to discuss the impact of CKD on life participation in patients with CKD. Transcripts were analyzed thematically.

Results: Sixty-six participants, including 51 patients and caregivers, and 15 health care professionals from 5 countries (Argentina, Chile, Uruguay, Bolivia, and Peru) attended. Five themes were identified as follows: despair and sense of doom (coming to a sudden halt, diminished involvement in social activities with family and friends, paralyzing fear, fragility and vulnerability, and losing mental fortitude); stigmatized and judged (alone in the diagnosis, reprimanded for dietary choices, and discriminated by employers and colleagues); debilitating symptoms (incapacitated by pain and fatigue impairing functioning); threatening life goals (obscuring decision-making around family planning and relinquishing career aspirations); and garnering hope and strengthening resilience (overcoming challenges with family support, finding strength in spirituality, encouraged by clinicians, and physical activity to promote well-being).

Conclusion: Patients with CKD experienced despair, hopelessness, loneliness and isolation, debilitating symptoms, and uncertainty about their family and vocational goals, which contributed to impaired life participation. Strategies are needed to address these challenges to enhance the capacity of patients to live well with CKD.

Keywords: chronic kidney disease; life participation; patient-centered outcomes; quality of life.

Graphical abstract

Figure 1

Thematic schema of the impact of CKD on Life Participation. The following 5 themes summarize workshop discussions: (i) despair and sense of doom (sudden halt; reduced social involvement; fear, fragility; loss of mental fortitude); (ii) stigmatized and judged (feeling alone; reprimanded for dietary choices; workplace discrimination); (iii) debilitating symptoms (pain; fatigue limiting functioning); (iv) threatening life goals (family planning challenges; relinquished career aspirations); and (v) garnering hope and strengthening resilience (family support; spirituality; clinician encouragement; physical activity). Boxes indicate themes; subbullets denote subthemes; arrows illustrate interrelations (e.g., symptoms → reduced participation; support/encouragement → resilience). CKD, chronic kidney disease.