TY - JOUR
T1 - Caregiver health-related quality of life, burden, and patient outcomes in ambulatory advanced heart failure
T2 - A report from revival
AU - Gilotra, Nisha A.
AU - Pamboukian, Salpy V.
AU - Mountis, Maria
AU - Robinson, Shawn W.
AU - Kittleson, Michelle
AU - Shah, Keyur B.
AU - Forde-Mclean, Rhondalyn C.
AU - Haas, Donald C.
AU - Horstmanshof, Douglas A.
AU - Jorde, Ulrich P.
AU - Russell, Stuart D.
AU - Taddei-Peters, Wendy C.
AU - Jeffries, Neal
AU - Khalatbari, Shokoufeh
AU - Spino, Catherine A.
AU - Richards, Blair
AU - Yosef, Matheos
AU - Mann, Douglas L.
AU - Stewart, Garrick C.
AU - Aaronson, Keith D.
AU - Grady, Kathleen L.
N1 - Publisher Copyright:
© 2021 The Authors.
PY - 2021
Y1 - 2021
N2 - BACKGROUND: Heart failure (HF) imposes significant burden on patients and caregivers. Longitudinal data on caregiver healthrelated quality of life (HRQOL) and burden in ambulatory advanced HF are limited. METHODS AND RESULTS: Ambulatory patients with advanced HF (n=400) and their participating caregivers (n=95) enrolled in REVIVAL (Registry Evaluation of Vital Information for VADs [Ventricular Assist Devices] in Ambulatory Life) were followed up for 24 months, or until patient death, left ventricular assist device implantation, heart transplantation, or loss to follow-up. Caregiver HRQOL (EuroQol Visual Analog Scale) and burden (Oberst Caregiving Burden Scale) did not change significantly from baseline to follow-up. At time of caregiver enrollment, better patient HRQOL by Kansas City Cardiomyopathy Questionnaire was associated with better caregiver HRQOL (P=0.007) and less burden by both time spent (P<0.0001) and difficulty (P=0.0007) of caregiving tasks. On longitudinal analyses adjusted for baseline values, better patient HRQOL (P=0.034) and being a married caregiver (P=0.016) were independently associated with better caregiver HRQOL. Patients with participating caregivers (versus without) were more likely to prefer left ventricular assist device therapy over time (odds ratio, 1.43; 95% CI, 1.03–1.99; P=0.034). Among patients with participating caregivers, those with nonmarried (versus married) caregivers were at higher composite risk of HF hospitalization, death, heart transplantation or left ventricular assist device implantation (hazard ratio, 2.99; 95% CI, 1.29–6.96; P=0.011). CONCLUSIONS: Patient and caregiver characteristics may impact their HRQOL and other health outcomes over time. Understanding the patient-caregiver relationship may better inform medical decision making and outcomes in ambulatory advanced HF.
AB - BACKGROUND: Heart failure (HF) imposes significant burden on patients and caregivers. Longitudinal data on caregiver healthrelated quality of life (HRQOL) and burden in ambulatory advanced HF are limited. METHODS AND RESULTS: Ambulatory patients with advanced HF (n=400) and their participating caregivers (n=95) enrolled in REVIVAL (Registry Evaluation of Vital Information for VADs [Ventricular Assist Devices] in Ambulatory Life) were followed up for 24 months, or until patient death, left ventricular assist device implantation, heart transplantation, or loss to follow-up. Caregiver HRQOL (EuroQol Visual Analog Scale) and burden (Oberst Caregiving Burden Scale) did not change significantly from baseline to follow-up. At time of caregiver enrollment, better patient HRQOL by Kansas City Cardiomyopathy Questionnaire was associated with better caregiver HRQOL (P=0.007) and less burden by both time spent (P<0.0001) and difficulty (P=0.0007) of caregiving tasks. On longitudinal analyses adjusted for baseline values, better patient HRQOL (P=0.034) and being a married caregiver (P=0.016) were independently associated with better caregiver HRQOL. Patients with participating caregivers (versus without) were more likely to prefer left ventricular assist device therapy over time (odds ratio, 1.43; 95% CI, 1.03–1.99; P=0.034). Among patients with participating caregivers, those with nonmarried (versus married) caregivers were at higher composite risk of HF hospitalization, death, heart transplantation or left ventricular assist device implantation (hazard ratio, 2.99; 95% CI, 1.29–6.96; P=0.011). CONCLUSIONS: Patient and caregiver characteristics may impact their HRQOL and other health outcomes over time. Understanding the patient-caregiver relationship may better inform medical decision making and outcomes in ambulatory advanced HF.
KW - Caregiving
KW - Heart failure
KW - Left ventricular assist device
KW - Quality of life
UR - http://www.scopus.com/inward/record.url?scp=85111015372&partnerID=8YFLogxK
U2 - 10.1161/JAHA.120.019901
DO - 10.1161/JAHA.120.019901
M3 - Article
C2 - 34250813
AN - SCOPUS:85111015372
SN - 2047-9980
VL - 10
JO - Journal of the American Heart Association
JF - Journal of the American Heart Association
IS - 14
M1 - e019901
ER -