Patient and Caregiver Health-related Quality of Life and Caregiver Burden While Awaiting Heart Transplantation: Findings From the Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support (SUSTAIN-IT) Study

Background. We sought to compare change over time (baseline to 2 y) in health-related quality of life (HRQOL) between older (60–80 y) patients awaiting heart transplantation (HT) with mechanical circulatory support (MCS) versus without MCS and their caregivers and caregiver burden. Methods. This stu...

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Main Authors: Kathleen L. Grady, PhD, Ike Okwuosa, MD, Adin-Cristian Andrei, PhD, Tingqing Wu, MPH, Christian Elenbaas, MS, Anna Warzecha, BA, Abigail Baldridge, MS, Michael Petty, PhD
Format: Article
Language:English
Published: Wolters Kluwer 2021-12-01
Series:Transplantation Direct
Online Access:http://journals.lww.com/transplantationdirect/fulltext/10.1097/TXD.0000000000001249
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author Kathleen L. Grady, PhD
Ike Okwuosa, MD
Adin-Cristian Andrei, PhD
Tingqing Wu, MPH
Christian Elenbaas, MS
Anna Warzecha, BA
Abigail Baldridge, MS
Michael Petty, PhD
author_facet Kathleen L. Grady, PhD
Ike Okwuosa, MD
Adin-Cristian Andrei, PhD
Tingqing Wu, MPH
Christian Elenbaas, MS
Anna Warzecha, BA
Abigail Baldridge, MS
Michael Petty, PhD
author_sort Kathleen L. Grady, PhD
collection DOAJ
description Background. We sought to compare change over time (baseline to 2 y) in health-related quality of life (HRQOL) between older (60–80 y) patients awaiting heart transplantation (HT) with mechanical circulatory support (MCS) versus without MCS and their caregivers and caregiver burden. Methods. This study was conducted at 13 United States sites. Patient HRQOL was examined using the EuroQol 5-dimensional questionnaire (EQ-5D-3L) and Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12). Caregiver measures included the EQ-5D-3L and Oberst Caregiving Burden Scale, measuring time on task and difficulty. Analyses included analysis of variance, χ2, and linear regression. Results. We enrolled 239 HT candidates (n = 118 with MCS and n = 121 without MCS) and 193 caregivers (n = 92 for candidates with MCS and n = 101 for candidates without MCS). Baseline differences in HRQOL were observed between HT candidates with and without MCS: EQ-5D-3L visual analog scale (VAS) score (67.7 ± 17.6 versus 54.1 ± 23.3, P < 0.001) and KCCQ-12 overall summary score (59.9 ± 21.0 versus 48.9 ± 21.6, P < 0.001), respectively. HT candidates with MCS had significantly higher EQ-5D-3L VAS scores and KCCQ-12 overall summary score across time versus without MCS. Baseline EQ-5D-3L VAS scores did not differ significantly between caregivers of HT candidates with and without MCS (84.6 ± 12.9 versus 84.3 ± 14.4, P = 0.9), respectively, nor were there significant between-group differences over time. Caregivers for HT candidates with MCS reported more task difficulty (range: 1 = not difficult to 5 = extremely difficult) versus caregivers for those without MCS at baseline (1.4 ± 0.5 versus 1.2 ± 0.3, P = 0.004) and over time. Conclusions. Understanding differences in HRQOL and caregiver burden among older HT candidates with and without MCS and their caregivers may inform strategies to enhance HRQOL and reduce burden.
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spelling doaj.art-0cba16424ad843e49d3828c74a0dc11d2022-12-21T21:23:38ZengWolters KluwerTransplantation Direct2373-87312021-12-01712e79610.1097/TXD.0000000000001249202112000-00013Patient and Caregiver Health-related Quality of Life and Caregiver Burden While Awaiting Heart Transplantation: Findings From the Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support (SUSTAIN-IT) StudyKathleen L. Grady, PhD0Ike Okwuosa, MD1Adin-Cristian Andrei, PhD2Tingqing Wu, MPH3Christian Elenbaas, MS4Anna Warzecha, BA5Abigail Baldridge, MS6Michael Petty, PhD71 Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL.2 Department of Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL.3 Department of Preventive Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL.1 Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL.1 Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL.1 Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL.1 Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL.4 Department of Nursing, University of Minnesota Medical Center, Minneapolis, MN.Background. We sought to compare change over time (baseline to 2 y) in health-related quality of life (HRQOL) between older (60–80 y) patients awaiting heart transplantation (HT) with mechanical circulatory support (MCS) versus without MCS and their caregivers and caregiver burden. Methods. This study was conducted at 13 United States sites. Patient HRQOL was examined using the EuroQol 5-dimensional questionnaire (EQ-5D-3L) and Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12). Caregiver measures included the EQ-5D-3L and Oberst Caregiving Burden Scale, measuring time on task and difficulty. Analyses included analysis of variance, χ2, and linear regression. Results. We enrolled 239 HT candidates (n = 118 with MCS and n = 121 without MCS) and 193 caregivers (n = 92 for candidates with MCS and n = 101 for candidates without MCS). Baseline differences in HRQOL were observed between HT candidates with and without MCS: EQ-5D-3L visual analog scale (VAS) score (67.7 ± 17.6 versus 54.1 ± 23.3, P < 0.001) and KCCQ-12 overall summary score (59.9 ± 21.0 versus 48.9 ± 21.6, P < 0.001), respectively. HT candidates with MCS had significantly higher EQ-5D-3L VAS scores and KCCQ-12 overall summary score across time versus without MCS. Baseline EQ-5D-3L VAS scores did not differ significantly between caregivers of HT candidates with and without MCS (84.6 ± 12.9 versus 84.3 ± 14.4, P = 0.9), respectively, nor were there significant between-group differences over time. Caregivers for HT candidates with MCS reported more task difficulty (range: 1 = not difficult to 5 = extremely difficult) versus caregivers for those without MCS at baseline (1.4 ± 0.5 versus 1.2 ± 0.3, P = 0.004) and over time. Conclusions. Understanding differences in HRQOL and caregiver burden among older HT candidates with and without MCS and their caregivers may inform strategies to enhance HRQOL and reduce burden.http://journals.lww.com/transplantationdirect/fulltext/10.1097/TXD.0000000000001249
spellingShingle Kathleen L. Grady, PhD
Ike Okwuosa, MD
Adin-Cristian Andrei, PhD
Tingqing Wu, MPH
Christian Elenbaas, MS
Anna Warzecha, BA
Abigail Baldridge, MS
Michael Petty, PhD
Patient and Caregiver Health-related Quality of Life and Caregiver Burden While Awaiting Heart Transplantation: Findings From the Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support (SUSTAIN-IT) Study
Transplantation Direct
title Patient and Caregiver Health-related Quality of Life and Caregiver Burden While Awaiting Heart Transplantation: Findings From the Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support (SUSTAIN-IT) Study
title_full Patient and Caregiver Health-related Quality of Life and Caregiver Burden While Awaiting Heart Transplantation: Findings From the Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support (SUSTAIN-IT) Study
title_fullStr Patient and Caregiver Health-related Quality of Life and Caregiver Burden While Awaiting Heart Transplantation: Findings From the Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support (SUSTAIN-IT) Study
title_full_unstemmed Patient and Caregiver Health-related Quality of Life and Caregiver Burden While Awaiting Heart Transplantation: Findings From the Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support (SUSTAIN-IT) Study
title_short Patient and Caregiver Health-related Quality of Life and Caregiver Burden While Awaiting Heart Transplantation: Findings From the Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support (SUSTAIN-IT) Study
title_sort patient and caregiver health related quality of life and caregiver burden while awaiting heart transplantation findings from the sustaining quality of life of the aged heart transplant or mechanical support sustain it study
url http://journals.lww.com/transplantationdirect/fulltext/10.1097/TXD.0000000000001249
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