Kidney Week

Abstract: FR-PO437

Informal Caregiver Burden in Dialysis Care and How It Relates to Patients' Health-Related Quality of Life and Symptoms

Session Information

• Hemodialysis Epidemiology and Outcomes
  October 25, 2024 | Location: Exhibit Hall, Convention Center
  Abstract Time: 10:00 AM - 12:00 PM

Category: Dialysis

• 801 Dialysis: Hemodialysis and Frequent Dialysis

Authors

• Driehuis, Esmee, Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Esmee Driehuis, MS, MSc

• Janse, Roemer J., Leids Universitair Medisch Centrum, Leiden, Zuid-Holland, Netherlands

Roemer J. Janse

• Roeterdink, Anneke, Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Anneke Roeterdink, RN

• Konijn, Wanda, Dutch Kidney Patients Association, Bussum, Netherlands

Wanda Konijn, MA

• van Lieshout, Thomas Sebastiaan, Amsterdam UMC Locatie VUmc, Amsterdam, Noord-Holland, Netherlands

Thomas Sebastiaan van Lieshout, MD, MS, MSc

• Vogels, Theodôr J.F.M., Maxima Medisch Centrum, Veldhoven, Noord-Brabant, Netherlands

Theodôr J.F.M. Vogels

• Goto, Namiko Anna, Jeroen Bosch Ziekenhuis, 's-Hertogenbosch, Noord-Brabant, Netherlands

Namiko Anna Goto, MD, PhD

• Broese van Groenou, Marjolein, Vrije Universiteit Amsterdam, Amsterdam, Noord-Holland, Netherlands

Marjolein Broese van Groenou, PhD

• Dekker, Friedo W., Leids Universitair Medisch Centrum, Leiden, Zuid-Holland, Netherlands

Friedo W. Dekker, PhD

• van Jaarsveld, Brigit C., Amsterdam UMC Locatie VUmc, Amsterdam, Noord-Holland, Netherlands

Brigit C. van Jaarsveld, MD, PhD

• Abrahams, Alferso C., Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Alferso C. Abrahams, MD, PhD

Group or Team Name

• DOMESTICO Study Group.

Background

Starting dialysis has a major impact on both patients’ and their informal caregivers’ lives. Dialysis patients often experience impaired health-related quality of life (HRQoL) and high symptom burden, relying heavily on their informal caregivers. However, providing informal care for someone undergoing dialysis may lead to significant burden and decreased HRQoL for caregivers themselves, potentially also influencing patients’ well-being. Despite the crucial role of informal caregivers, there is a lack of research on this topic. Therefore, we aimed to 1) describe informal caregivers’ experienced burden and HRQoL and 2) investigate how these are related to dialysis patients’ HRQoL and symptoms.

Methods

We conducted a cross-sectional study at dialysis initiation with 202 adult informal caregiver-dialysis patient dyads. Caregiver burden was measured with the Self-Perceived Pressure from Informal Care (SPPIC) questionnaire, HRQoL with the 12-item Short Form Health Survey (SF-12), and symptom number and burden with the Dialysis Symptom Index (DSI). Data were analysed using linear and logistic ordinal regression.

Results

Around 35% of caregivers experienced moderate to high burden. Patients’ lower mental HRQoL (adjusted odds ratio [aOR]=0.95, 95% confidence interval [CI] 0.92; 0.99), higher symptom number (aOR=1.07, 95% CI 1.02; 1.12), and higher symptom burden (aOR=1.03, 95% CI 1.01; 1.04) were associated with greater odds of higher caregiver burden. Patients’ lower mental HRQoL (β=0.30, 95% CI 0.15; 0.46), higher symptom number (β=-0.55, 95% CI -0.78; -0.31), and higher symptom burden (β=-0.17, 95% CI -0.25; -0.10) were also associated with a lower mental HRQoL in caregivers.

Conclusion

We show that a third of caregivers feel moderate to high burden and that caregiver burden is associated with patients’ mental HRQoL and symptoms. These findings highlight the importance of considering and supporting patients and their informal caregivers together in dialysis care, as the kidney disease and its treatment impact many aspects of both their lives.