School of Medicine and Dentistry, University of Rochester, Rochester, NY.
Division of Hematology/Oncology, Department of Medicine, James P. Wilmot Cancer Institute, University of Rochester Medical Center, Rochester, NY.
Blood Adv. 2023 Dec 26;7(24):7597-7607. doi: 10.1182/bloodadvances.2023011046.
Older patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS) feel shocked and bewildered when diagnosed. Serious illness conversations (SICs) may increase disease understanding and preparations for the future. However, SICs often happen late, in part because of clinician-perceived patient discomfort. Telehealth may promote patient comfort by allowing SICs to take place at home. This study assesses the feasibility and usability of a telehealth-delivered Serious Illness Care Program (SICP) for older adults with AML and MDS. We conducted a single-arm pilot study including 20 older adults with AML and MDS. Feasibility was measured using retention rate, with >80% considered feasible. Usability was measured using telehealth usability questionnaire (TUQ; range, 1-7): >5 considered usable. We collected other outcomes including acceptability and disease understanding and conducted post-visit qualitative interviews to elicit feedback. Hypothesis testing was performed at α = 0.10 owing to the pilot nature and small sample size. Retention rate was 95% (19/20); mean TUQ scores were 5.9 (standard deviation [SD], 0.9) and 5.9 (SD, 1.1) for patients and caregivers, respectively. We found the SICP to be acceptable. The majority of patients found the SICP to be very or extremely worthwhile (88.2%; 15/17), and reported it increased closeness with their clinician (75.0%; 12/16). After their visit, patient estimates of curability, and overall life expectancy aligned more closely with those of their clinicians. In qualitative interviews, most patients said that they would recommend this program to others (89.5%, 17/19). This study demonstrated that delivery of the telehealth SICP to older patients with AML and MDS is feasible, usable, and acceptable. This trial is registered at www.clinicaltrials.gov as #NCT04745676.
老年急性髓系白血病（AML）和骨髓增生异常综合征（MDS）患者在确诊时感到震惊和困惑。严重疾病对话（SICs）可以增加对疾病的了解和对未来的准备。然而，SICs 通常发生得很晚，部分原因是临床医生认为患者感到不适。远程医疗可以通过允许在家中进行 SICs 来提高患者的舒适度。本研究评估了为 AML 和 MDS 老年患者提供的远程医疗严重疾病护理计划（SICP）的可行性和可用性。我们进行了一项单臂试点研究，纳入了 20 名 AML 和 MDS 老年患者。保留率用于衡量可行性，保留率>80%被认为是可行的。使用远程医疗可用性问卷（TUQ；范围为 1-7）衡量可用性：>5 被认为是可用的。我们收集了其他结果，包括可接受性和疾病理解，并进行了随访后的定性访谈以获得反馈。由于试点性质和样本量小，假设检验在 α=0.10 时进行。保留率为 95%（19/20）；患者和照顾者的平均 TUQ 评分分别为 5.9（标准差 [SD]，0.9）和 5.9（SD，1.1）。我们发现 SICP 是可以接受的。大多数患者认为 SICP 非常或极其有价值（88.2%；15/17），并报告它增加了与他们的临床医生的亲密程度（75.0%；12/16）。在就诊后，患者对可治愈性和总体预期寿命的估计与临床医生的估计更加一致。在定性访谈中，大多数患者表示他们会向其他人推荐该计划（89.5%，17/19）。这项研究表明，向 AML 和 MDS 老年患者提供远程医疗 SICP 是可行、可用和可接受的。这项试验在 www.clinicaltrials.gov 上注册为 #NCT04745676。
