Caregiver burden before heart transplantation and long-term mechanical circulatory support: Findings from the Sustaining Quality of Life of the Aged: Transplant or Mechanical Support (SUSTAIN-IT) study
Authors
I S. Okwuosa, Northwestern University Feinberg, School of Medicine, 676 Saint Claire, Suite 600, Chicago, IL, 60611, United States. Electronic address: Ike.Okwuosa@nm.org.
A S. Anderson, Northwestern University Feinberg, School of Medicine, 676 Saint Claire, Suite 600, Chicago, IL, 60611, United States.
M Petty, Department of Nursing,University of Minnesota Medical Center, PCU 6C, 500 Harvard Street SE, Minneapolis, MN, 55455, 612-273-5607.
T Wu, Northwestern University Feinberg, School of Medicine, 676 Saint Claire, Suite 600, Chicago, IL, 60611, United States.
A C. Andrei, Preventive Medicine, Feinberg School of Medicine, 680 N Lake Shore Drive, STE 1700, CH D335, Chicago, IL, 60611, 312-503-5053.Follow
A Kao, Cardiovascular Disease, Advanced Heart Failure and Transplant Cardiology, Kansas City, MO, 816-931-1883.
J Spertus, Cardiovacscular Division, 660 S Euclid Ave, Box 8086, St. Louis, MO, 63110, 816-932-8270.
D Pham, Northwestern University, Feinberg School of Medicine, Department of Surgery, 676 N. St Clair Street, Arkes Pavilion, STE 730, Chicago, IL, 60611.
C Yancy, Northwestern University, Feinberg School of Medicine, Department of Medicine, 676 N. St. Clair, STE 600, Chicago, IL, 60654.
M A. Dew, Department of Psychiatry,University of Pittsburgh School of Medicine and Medical Center, 3811 O'Hara Street, Pittsburgh, PA, 15213, 412-624-3373.Follow
E Hsich, Cardiovascular Medicine, 9500 Euclid Ave, Cleveland, OH, 44195, 216-444-7527.
William Cotts, Advocate Aurora HealthFollow
J Hartupee, Medicine/Cardiovascular Division, 660 S Euclid Ave, Box 8086, St. Louis, MO, 63110, 314-362-1986.
S V. Pamboukian, Department of Medicine, Division of Cardiovascular Disease, 1900 University Blvd, THT 321, Birmingham, AL, 35294, 205-934-3405.
F Pagani, Cardiac Surgery, 1500 E Medical Center Drive, 5144 Cardiovascular Center, SPC #5864, Ann Arbor, MI, 48109-5864, 612-432-6033.
B Lampert, Internal Medicine/Cardiovascular Medicine,OSU Heart and Vascular Center, 473 W 12th Ave, Columbus, OH, 43210, 614-293-4967, 614-293-4299.
M Johnson, Cardiovascular Medicine, 600 Highland Ave, E5/582 CSC (5710), Madison, WI, 53792, 608-263-0080.
M Murray, UW Hospital and Clinics, Cardiothoracic Surgery, 600 Highland Ave, Madison, WI, 53792, 608-262-0773.
K Tekeda, Department of Surgery, Columbia University Medical Center, 177 Fort Washington Ave, Ste 7-435, New York, NY, 10032, 212-305-5156.
M Yuzefpolskaya, Department of Medicine, Division of Cardiology, 622 West 168th Street, PH-12, Room 1267, New York, NY, 10032, 212-342-3926, 212-305-3304.
J K. Kirklin, Department of Surgery, Division of Cardiothoracic Surgery, 1900 University Blvd, THT 721, Birmingham, AL, 35294, 205-934-3991.
K L. Grady, Northwestern University, Feinberg School of Medicine, Department of Surgery, 676 N. St Clair Street, Arkes Pavilion, STE 730, Chicago, IL, 60611, 312-695-4860.
William G. Cotts, Division of Cardiology, Department of Medicine, University of Illinois at Chicago College of Medicine, Chicago, Illinois; Division of Cardiology.Follow
Recommended Citation
Okwuosa IS, Anderson A, Petty M, et al. Caregiver burden before heart transplantation and long-term mechanical circulatory support: Findings from the sustaining quality of life of the aged: Transplant or mechanical support (SUSTAIN-IT) study. J Heart Lung Transplant. 2023;42(9):1197-1204. doi:10.1016/j.healun.2023.01.015
Abstract
Background: Caregiving for heart failure (HF) patients is burdensome. We examined differences in caregiver burden for three groups of older advanced HF patients: (1) supported with mechanical circulatory support (MCS) before heart transplantation (HT MCS), (2) awaiting transplant without MCS (HT non-MCS), and (3) prior to long-term MCS and factors associated with burden.
Methods: From 10/1/15-12/31/18, we enrolled 276 caregivers for HF patients from 13 U.S. sites: 85 HT MCS, 96 HT non-MCS, and 95 prior to long-term MCS. At enrollment, caregivers completed the Oberst Caregiving Burden Scale (15 items, 2 subscales: time (range=1-5; higher score=more time spent on task) and difficulty (range=1-5; higher score=higher difficulty of task) and other measures. Statistical analyses included descriptive statistics, ANOVA, chi-square tests, and linear regression.
Results: Overall, caregivers were aged 60.8±9.8 years and predominantly white, female, spouses, well educated, and reported ≥1 comorbidities. Caregivers overall reported a moderate amount of time spent on tasks and slight task difficulty. Caregivers for HT non-MCS candidates reported significantly less perceived time spent on tasks than caregivers for HT MCS candidates and caregivers for patients prior to long-term MCS (2.2±0.74 vs 2.4±0.74 vs 2.5±0.71, respectively, p=0.02) and less perceived difficulty of tasks (1.2±0.33 vs 1.4±0.53 vs 1.4±0.54, respectively, p=0.01). Caregiver and patient factors were associated with caregiver burden.
Conclusions: Prior to HT and long-term MCS, caregiver burden was low to moderate. Caregiver factors were predominantly associated with caregiver burden. Understanding caregiver burden and factors affecting caregiver burden may enhance preoperative advanced therapies discussions and guide caregiver support.
Affiliations
Advocate Christ Medical Center