#2309 Understanding the caregiver experience: a comparison between patients undergoing hemodialysis and conservative care management

Abstract

Abstract Background and Aims Elderly patients with Advanced Chronic Kidney Disease (ACKD) experience a high rate of physical and emotional burden, whether they choose dialysis or not. However, little is known about the challenges faced by family and throughout the disease. This study aimed to evaluate how caregivers of ACKD patients over 75 years-old (yo) perceive and cope with the disease. Method We performed telephone interviews with family members (FM) or caregivers of ACKD patients over 75 yo, undergoing Conservative Kidney Management (CKM) or hemodialysis (HD). The interviews were recorded and analyzed by two independent investigators. The interview guide was based on literature review and the authors’ clinical experience. It comprised 12 questions focused on the medical team support and communication, the caregivers’ perception of their relatives’ quality of life (QoL), the caregivers’ burden, and the perception of advance care planning. Results A total of 22 FM were interviewed, 11 from patients undergoing HD and 11 undergoing CKM. All caregivers were family members: 90.9% sons/daughters and 9.1% spouses. 54.5% of patients on CKM were females, with a mean age of 88.9 ± 5.0 yo; 36.4% of patients on dialysis were female, with a mean age of 82.1 ± 4.8 yo. Regarding team communication, FM of patients on CKM were more aware of the prognosis of kidney disease and felt more involved in the decision-making process (Table 1). All FM of both groups reported medical team support for their relatives. Concerning QoL, all FM of CKM patients mentioned symptom control, compared to 81.8% in the HD group. Additionally, 27.3% FM of CKM felt ACKD deprived their relatives of their liberty, versus 72.7% in the HD group. No caregiver recognized a high burden of the disease. Regarding advance care planning, a majority of FM of HD patients (81.8%) desired open discussions, versus 45.4% of the CKM. Some supportive/illustrative quotes of the FM answers are shown in Table 1. Conclusion Caregivers are vital in the support and care of any patient with a chronic illness, especially ACKD, and their burden and awareness about the disease must always be considered. The approach to patients in CKM is essentially palliative, prioritizing QoL and symptom control. These patients are regularly evaluated by multidisciplinary teams with training in palliative care, which promotes shared decision-making and more efficient communication skills about disease and prognosis to the patient and family. Unfortunately, palliative care is not yet well established in patients undergoing HD, which may explain the results and answers given by FM. It is crucial to improve support for caregivers of all ACKD patients, preferably with a multidisciplinary team.