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OBJECTIVES: This study aimed at characterizing 3 populations of family/friend caregivers of patients with different life-threatening organ failure regarding health-related quality of life, caregiver burden, and dyadic coping. METHODS: Three cross-sectional (population) studies were conducted at a tertiary hospital in Denmark (2019-2020). Patients with renal failure (RF), cystic fibrosis (CF), and intestinal failure (IF) were asked to designate the closest person with ≥18 years old involved in the care (caregiver) to participate in this study. Number of caregivers included were RF = 78, CF = 104, and IF = 73. Electronic questionnaires were filled in by caregivers to assess health-related quality of life and caregiver burden and by caregivers and respective patients to assess dyadic coping. RESULTS: The 3 caregiver groups had self-perception of poor health and energy; however, caregivers of CF patients perceived their physical role functioning better than those caregiving for RF and IF patients (p = 0.002). The level of caregiver burden was reported as not high, but caregivers used in average 13 hours/day for caring. Moreover, cleaning tasks (p = 0.005) and personal care (p = 0.009) were more demanding in RF and IF patients. Caregivers also did not differ regarding dyadic coping. When comparing patients and caregivers, stress communication by oneself and the partner differed (p < 0.001). SIGNIFICANCE OF RESULTS: Caregivers spent many hours in the care role, they reported poor health, and dyadic coping may be improved. Interventions in caregivers of patients with life-threatening organ failure could help to improve care management at home, caregiver's health, and dyadic coping between caregiver and patient and consequently reduce caregiver burden.
RESUMO
OBJECTIVE: End-stage kidney disease and hemodialysis (HD) treatment are associated with a high symptom burden in many patients. This study aimed at updating patient-reported outcomes concerning quality of life, fatigue, anxiety, and depression in HD patients treated in a single center in order to assess the need for palliative care provision. METHOD: A cross-sectional design, in which a sample of patients treated at a single HD department (Rigshospitalet, Denmark) between January and June 2019, was analyzed using the Kidney Disease Quality of Life Short Form, the Multidimensional Fatigue Inventory, and the Hospital Anxiety and Depression Scale. In addition, we compared the results with previously published data from the same department (2000) and with an age- and sex-matched sample from the Danish general population (1997/2014). Chi-square and t-tests were used for comparisons. RESULTS: Screened patients = 242, included = 141, analyzed = 131 (70.2% male, mean age = 61.3 years). HD patients reported low scores for quality of life, high scores for fatigue, and approximately 30% had anxiety/depression. Regarding quality of life, they had significantly lower scores on general health (P ≤ 0.000), vitality (P = 0.009), social functioning (P = 0.001), mental health (P = 0.007), and mental component (P = 0.005) compared with former data of HD patients. Moreover, they reported significantly poorer quality of life and worse fatigue compared with the general Danish population. SIGNIFICANCE OF RESULTS: In the patients undergoing HD, quality of life was poor and worsened when compared with former HD patients' data. Additionally, fatigue, depression, and anxiety in HD patients were prevalent. A clear need for palliative care provision was observed.