title: Hematopoietic stem cell transplant candidate and designated proxy distress levels prior to hematopoietic stem cell transplantation.
abstract: Hematopoietic stem cell transplantation (HCT) is associated with a high risk of morbidity, making advance care planning (ACP) essential. The purpose of this study was to assess and compare proxy and HCT candidate distress levels (Distress Thermometer) before (T1) and after (T2) ACP question completion. 79 participants (40 HCT candidates, 39 proxies) rated their distress. The T1, T2 mean distress scores (SD) for HCT candidates were 3.13(2.27), 2.96(2.10); 43% and 38% endorsed clinically significant distress (≥4). Proxies reported 4.21(2.48), 4.33 (2.46); 62% endorsed significant distress at T1, T2. The majority of proxies endorsed distress levels that were clinically significant and comparatively higher (T1 (p = 0.047) and T2 (p = 0.009)) than their paired HCT recipients. Responding to questions about ACP did not increase overall distress ratings.
authors.affiliation: Department of Internal Medicine, Section on Hematology and Oncology, Wake Forest Baptist Medical Center, Winston-Salem, NC, USA kduckwor@wakehealth.edu.
authors.forename: Katharine E
authors.initials: KE
authors.lastname: Duckworth
authors.affiliation: Counseling Department, Wake Forest University, Winston-Salem, NC, USA.
authors.forename: Allison M
authors.initials: AM
authors.lastname: Forti
authors.affiliation: Department of Biostatistical Sciences, Wake Forest Baptist Medical Center, Winston-Salem, NC, USA.
authors.forename: Gregory B
authors.initials: GB
authors.lastname: Russell
authors.affiliation: Texas Transplant Institute, San Antonio, TX, USA.
authors.forename: Seema
authors.initials: S
authors.lastname: Naik
authors.affiliation: Department of Internal Medicine, Section on Hematology and Oncology, Wake Forest Baptist Medical Center, Winston-Salem, NC, USA.
authors.forename: David D
authors.initials: DD
authors.lastname: Hurd
authors.affiliation: Department of Internal Medicine, Section on Hematology and Oncology, Wake Forest Baptist Medical Center, Winston-Salem, NC, USA.
authors.forename: Richard P
authors.initials: RP
authors.lastname: McQuellon
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology*; D006801:Humans; D008297:Male; D019727:Proxy / Q000523:psychology*; D013315:Stress, Psychological / Q000453:epidemiology* / Q000209:etiology
keywords: advance care planning; decision makers; distress; end-of-life planning; hematopoietic cell transplant candidate; proxies