School of Medicine and Dentistry, University of Rochester, Rochester, NY.
Burrell College of Osteopathic Medicine, New Mexico State University, Las Cruces, NM.
Blood Adv. 2023 May 9;7(9):1871-1884. doi: 10.1182/bloodadvances.2022008996.
Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) experience intense inpatient health care at the end-of-life stage. Early advance care planning may improve care at the end of life for patients with AML or MDS. The Serious Illness Care Program (SICP) is a multicomponent, communication intervention developed to improve conversations about values for patients with serious illnesses. The SICP has been shown to improve the quality and frequency of advance care planning discussions. We adapted the SICP for delivery via telehealth to older patients with AML or MDS. We conducted a single-center qualitative study of 45 participants (25 clinicians, 15 older patients with AML or MDS, and 5 caregivers). Participants, whether clinicians, patients, or caregivers, agreed that the SICP would help older patients with AML or MDS to share their personal values with their care team. Four qualitative themes emerged from our data: (1) serious illness conversations can be conducted via telehealth, (2) older patients have limited experience using technology but are willing and able to learn, (3) patients feel that serious illness conversations will help them understand their AML or MDS diagnosis and prognosis better, and (4) serious illness conversations should be common and routine, not extraordinary. The adapted SICP may provide older patients with AML or MDS an opportunity to share what matters most to them with their care team and may assist oncologists in aligning patient care with patient values. The adapted SICP is the subject of an ongoing single-arm pilot study at the Wilmot Cancer Institute (clinicaltrials.gov identifier: NCT04745676).
老年急性髓系白血病 (AML) 和骨髓增生异常综合征 (MDS) 患者在生命终末期会经历密集的住院医疗。早期的预先护理计划可能会改善 AML 或 MDS 患者的临终护理。严重疾病护理计划 (SICP) 是一种多组分、沟通干预措施,旨在改善患有严重疾病患者的价值观对话。SICP 已被证明可以提高预先护理计划讨论的质量和频率。我们将 SICP 改编为通过远程医疗提供给 AML 或 MDS 老年患者。我们对 45 名参与者(25 名临床医生、15 名 AML 或 MDS 老年患者和 5 名护理人员)进行了一项单中心定性研究。参与者,无论是临床医生、患者还是护理人员,都同意 SICP 将帮助 AML 或 MDS 老年患者与他们的护理团队分享他们的个人价值观。我们的数据中出现了四个定性主题:(1) 严重疾病对话可以通过远程医疗进行,(2) 老年患者使用技术的经验有限,但愿意并且能够学习,(3) 患者认为严重疾病对话将帮助他们更好地了解他们的 AML 或 MDS 诊断和预后,以及 (4) 严重疾病对话应该是常见的和常规的,而不是特殊的。改编后的 SICP 可能为 AML 或 MDS 老年患者提供了一个与护理团队分享对他们最重要的事情的机会,并可能帮助肿瘤学家将患者护理与患者价值观保持一致。改编后的 SICP 是威尔莫特癌症研究所正在进行的单臂试验研究的主题(clinicaltrials.gov 标识符:NCT04745676)。