#2814 WHAT ABOUT THE IMPACT ON INFORMAL CAREGIVERS? EFFECTS OF DIALYSIS PATIENTS' HEALTH-RELATED QUALITY OF LIFE AND SYMPTOM BURDEN ON CAREGIVERS
Authors: Driehuis Esmee , Vogels Theodôr , Konijn Wanda , Roeterdink Anneke , van Lieshout Thomas Sebastiaan , Goto Namiko , van Groenou Marjolein Broese , Dekker Friedo W , Van Jaarsveld Brigit , Abrahams Alferso C 
Published: June 2023

Abstract

Background and Aims
Starting dialysis has a major impact on patients’ lives. Dialysis patients experience impairments in health-related quality of life (HRQoL) and high symptom burden. Informal caregivers are crucial for dialysis patients’ well-being, as patients often rely on their support and care. However, informal caregivers who provide long-lasting, intensive care may also experience a significant burden. This, in turn, may lead to impaired HRQoL of both the informal caregiver and the patient. To date, little research has been done among informal caregivers of dialysis patients, even though they may experience negative effects of the impaired functioning of the patient. Therefore, the aim of this study was to assess the impact of dialysis patients’ HRQoL and symptom burden on HRQoL of their informal caregivers. We hypothesize that impaired HRQoL and high symptom burden of dialysis patients have a significant impact on informal caregivers’ mental HRQoL, but little to no impact on their physical HRQoL.

Method
We conducted a cross-sectional study with 193 dyads of adult dialysis patients and their informal caregivers. Data at dialysis initiation were obtained from the ongoing multicenter, observational cohort study on informal caregivers of dialysis patients, which is an extension of the Dutch nOcturnal and hoME dialysis Study To Improve Clinical Outcomes (DOMESTICO). The 12-item Short Form Health Survey (SF-12), which provides mental component summary (MCS) and physical component summary (PCS) scores (range 0-100), was used to measure HRQoL in both informal caregivers and dialysis patients. The number of symptoms (range 0-30) and symptom burden (range 0-150) were measured with the Dialysis Symptom Index (DSI). Data were analyzed using linear regression and adjusted for possible confounders.

Results
Mean age of informal caregivers was 60 ± 15 years, 72.0% were female, and 77.2% were spouses of the dialysis patient. Mean age of patients was 65 ± 14 years, 32.1% were female, and 62.7% were on in-centre hemodialysis. Mean MCS and PCS scores of informal caregivers were 47.8 ± 9.7 and 48.7 ± 9.8, respectively. Mean MCS and PCS scores of patients were 47.9 ± 9.0 and 35.7 ± 10.3, respectively, and mean symptom number and burden were 11.3 ± 5.9 and 31.5 ± 17.6, respectively. After adjustment for confounders, significant effects of patients’ (1) MCS score (β = 0.305; p = 0.003), (2) symptom number (β = -0.434; p = 0.002), and (3) symptom burden (β = -0.151; p &lt; 0.001) were found on caregivers’ MCS score. No significant effects on caregivers’ PCS score were found.

Conclusion
Lower mental HRQoL, higher symptom number, and higher symptom burden of dialysis patients are associated with lower mental HRQoL of their informal caregivers. These findings underline the importance of maintaining patients’ HRQoL and reducing symptom burden, as these also affect informal caregivers. In addition, given that improving patients’ HRQoL and reducing symptom burden are not always within reach, these findings emphasize the importance of supporting informal caregivers of dialysis patients.