Adding Centralized Electronic Patient-Reported Outcome Data Collection to an Established International Clinical Outcomes Registry
學年 110
學期 1
出版（發表）日期 2021-10-29
作品名稱 Adding Centralized Electronic Patient-Reported Outcome Data Collection to an Established International Clinical Outcomes Registry
作品名稱（其他語言）
著者 Mau, Lih-wen
單位
出版者
著錄名稱、卷期、頁數 Transplantation and Cellular Therapy 28(2),　p.112.e1-112.e9
摘要 The importance of patient-reported outcomes (PROs) in cellular therapies, including hematopoietic cell transplantation (HCT) is highlighted in this study. Longitudinal collection of PROs in a registry is recommended for several reasons, yet to date, PROs are not routinely collected from HCT patients to augment clinical registry data. The aim of this study was to determine the feasibility of electronic PRO data collection by a national clinical outcomes registry, by assessing differences between who does and does not report PROs. We conducted a cross-sectional pilot collection of PROs from HCT recipients after treatment using computer-adapted tests from the Patient-Reported Outcome Measurement Information System (PROMIS). We implemented centralized data collection through the Center for International Blood and Marrow Transplant Research (CIBMTR) among patients who underwent HCT for myelodysplastic syndromes (MDS), were at least 6 months post-HCT, and spoke English or Spanish. The main objective was identifying patient, disease, and transplant-related differences associated with completion of electronic PROs. Patients were excluded from analysis if they were determined to be ineligible (deceased, did not speak English or Spanish, refused to be contacted by the CIBMTR). A total of 163 patients were contacted and potentially eligible to participate; of these, 92 (56%) enrolled and 89 (55%) completed the PRO assessment. The most frequent reason for incomplete surveys was inability to contact patients (n = 88), followed by declining to participate in the study (n = 37). There were no sociodemographic or age differences between those who completed the PRO survey (n = 89) and eligible nonresponders (n = 155). Patient scores were within 3 points of the US average of 50 for all symptoms and functioning except physical functioning. Responders and nonresponders did not exhibit meaningfully different sociodemographic characteristics. Difficulty contacting patients posed the greatest barrier and also provided the greatest opportunity for improvement. Once enrolled, survey completion was high. These results support standardizing centralized PRO data collection through the CIBMTR registry.
關鍵字 Patient-reported outcomes;Clinical outcomes registry;Hematopoietic cell transplantation;Cellular therapy;Patient-Reported Outcome Measurement Information System (PROMIS)
語言 zh_TW
ISSN 2666-6367 Copyright © 2024 American Society
期刊性質 國內
收錄於 CSSCI
產學合作
通訊作者
審稿制度 否
國別 TWN
公開徵稿
出版型式 ,電子版
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機構典藏連結 ( http://tkuir.lib.tku.edu.tw:8080/dspace/handle/987654321/125244 )