Telehealth Serious Illness Care Program for Older Adults with Acute Myeloid Leukemia and Myelodysplastic Syndromes: A Single-Arm Pilot Study

Introduction: Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) often feel shocked and bewildered about their diagnosis. Serious illness conversations (SICs) may increase patient’s disease understanding and better prepare them for the future. However, SICs currently tend to happen late in the disease course. One reason is clinician-perceived patient discomfort. Telehealth may promote patient comfort by allowing SICs to take place from home. We previously conducted a qualitative study to adapt the Serious Illness Care Program (SICP) for delivery via telehealth to promote early SICs among older adults with AML and MDS. The purpose of this study was to assess the feasibility and usability of the telehealth-delivered SICP for older patients with AML and MDS.

Methods: We conducted a single-arm pilot study and recruited patients aged ³60 years with AML or MDS and their caregivers. Participants underwent a 30- to 60-minute adapted SICP visit with their oncology clinician. The SICP includes: 1) Geriatric assessment of aging-related vulnerabilities, 2) Patient preparation pamphlet to prepare patients to talk about their values, 3) Clinician preparation email, 4) The Serious Illness Care Guide (SICG) used by clinicians during the SICP visit, 5) Documentation template for clinicians to use in the electronic health record, and 6) Family guide to assist patients with discussing their values with loved ones. Feasibility was measured using retention rate (i.e., completion of the SICP visit; >80% was considered feasible). Usability was measured using the telehealth usability questionnaire (TUQ, range 1-7; a score of >5 was considered feasible). We collected secondary outcome measures including acceptability of the SICP, advance care planning (ACP) engagement, disease understanding, and healthcare communication. Healthcare communication was assessed using the adapted 6-item Health Care Communication Questionnaire [(HCCQ), range 0-20; higher score is better] and the 1-item Heard and Understood question (range 0-4; higher score is better). Hypothesis testing was performed at α=0.10 (two-tailed) due to the pilot nature of this study. We elicited participant feedback through audio recorded semi-structured interviews. Interviews were transcribed verbatim and two investigators independently coded transcripts using MAXQDA.

Results: We included 20 patients (mean age=75; SD 5.9, range 63-87) and 6 caregivers (mean age=64; SD 13.7, range 44-77). The majority of patients and caregivers were White (patients: 85%, 17/20; caregivers 100%, 6/6) and non-Hispanic (patients: 80.0%, 16/20; caregivers: 83.3%, 5/6). Of the 19 SICP visits, 13 took place via video call, 5 took place via telephone, and 1 visit took place in person.

We found the SICP to be feasible (retention rate: 95%). Mean TUQ scores were 5.9 (SD 0.9) and 5.9 (SD 1.1) for patients and caregivers, respectively, indicating that the SICP was usable. In terms of acceptability, the majority of patients felt the SICP increased their sense of control over medical decisions (58.8%, 10/17) and closeness with their clinician (75.0%, 12/16). From baseline to post-intervention, ACP engagement scores increased numerically [mean +0.4 (SD 1.0); p=0.12]. At post-intervention, compared to pre-intervention measures, patient’s estimates of curability and life expectancy aligned more closely with clinicians. Mean scores for HCCQ and Heard and Understood were 18.3 (SD 2.1) and 3.5 (SD 0.5) for patients, respectively. Mean scores for HCCQ and Heard and Understood were 18.2 (SD 2.9) and 3.7 (SD 0.5) for caregivers, respectively.

In qualitative interviews, most patients (89.5%, 17/19) and caregivers (100%, 6/6) said they would recommend a SICP visit to others. The majority of patients (94.7%; 18/19) and caregivers (83.3%; 5/6) felt that the patient was prioritized during the SICP visit. Participants appreciated the comfort of telehealth during their SICP visit, felt the SICP visit provided them with the opportunity to share their wishes with their oncology clinician, and said that the SICP visit eased their worries.

Conclusion: In this study, we found the adapted SICP to be feasible and usable, and well-liked by patients and their caregivers. It has the potential to improve patient disease understanding, strengthen the patient-clinician relationship, and help clinicians align care to what matters most to patients and their families.