JMIR Publications

ABSTRACT

Background:

Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) experience high intensity care (e.g., chemotherapy, hospitalization, and life-sustaining treatments) during the end of life. Early advance care planning (ACP) may promote end of life care that is more consistent with patients’ values and goals. As the COVID-19 pandemic has resulted in a rapid shift to telehealth, use of such methods may improve access to ACP among this vulnerable population.

Objective:

In this qualitative study, we aimed to adapt an evidence-based ACP intervention, Serious Illness Care Program (SICP), to be delivered via telehealth for older adults with AML and MDS.

Methods:

We conducted semi-structured interviews with 14 oncology and 10 palliative care clinicians (physicians, advanced practitioners, and nurses), 15 patients, and 4 caregivers. Oncology and palliative care clinicians were recruited if they had cared for at least one patient with AML or MDS in the past year. Eligible patients were aged ≥60 with a diagnosis of AML or MDS and their caregivers if available were recruited. Interviews were transcribed and qualitatively coded by two independent coders using MAXQDA. We used directed content analyses focused on the content and delivery (telehealth vs. in-person) of the SICP.

Results:

Mean ages of clinicians, patients, and caregivers were 48, 71, and 66 years, respectively. Health literacy, measured using the 6-item Cancer Health Literacy Test, was high in both patients (mean: 5.7, possible range 0-6) and caregivers (mean: 6). The majority of participants liked the intent and content of the SICP, with suggestions mainly on wording changes. One patient stated, “I wish I’d had a little of this back in the beginning, it would’ve eased my way through…” Oncologists expressed positive feedback in the SICP language “planting the seeds” of the ACP conversation, while emphasizing that “it doesn’t mean that it’s going to happen.” Second, both oncology and palliative care clinicians were comfortable conducting ACP discussions via telehealth. Providers felt that the use of telehealth in ACP conversations would allow them to “deliver care with less burden”. Most patients and caregivers, however, were comfortable conducting ACP conversations via telehealth “after the first couple of appointments [being] in-person” to first establish care. Lastly, providers felt that including a geriatric assessment summary prior to ACP conversations “helps to ground and anchor the discussion” as it provides a “sense of baseline functionality… [and] quality of life”.

Conclusions:

Overall, the SICP was well-received by clinicians, patients, and caregivers. This stakeholder feedback will help us in better understanding current barriers to ACP conversations and gauge whether telehealth may be utilized to help improve access to ACP. This feedback will be used to further refine the SICP intervention for a future single arm pilot study. Clinical Trial: ClinicalTrials.gov NCT04745676; https://clinicaltrials.gov/ct2/show/NCT04745676