Adaptation of the Serious Illness Care Program for Older Patients with Acute Myeloid Leukemia and Myelodysplastic Syndromes

Abstract

Introduction: Compared to patients with solid tumors, patients with hematologic malignancies such as acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS), experience more intense inpatient care at end of life. Older patients with AML and MDS are more likely to have rapid clinical decline and worse survival compared to younger patients. The Serious Illness Care Program (SICP) is a multicomponent, structured communication intervention developed to improve conversations about values for patients with serious illnesses. A previous randomized trial found that, compared to the control arm, patients who participated in the SICP were more likely to have a serious illness conversation (96% vs 79%) and these conversations occurred 2.4 months earlier and were more patient-centered. However, fewer than 10% of patients in this trial had a hematologic malignancy. The purpose of this study was to adapt the SICP to be delivered via telehealth for older patients with AML and MDS. Methods: We conducted a single center qualitative study of oncology and palliative care clinicians, patients with AML or MDS (age 60 years and older), and their caregivers (if available). Semi-structured interviews were audio recorded and transcribed. Interview questions focused on telehealth and feedback on the SICP. Two investigators independently coded all transcripts using MAXQDA and resolved discrepancies through iteration. Data were organized into feedback on telehealth and the components of the SICP. Results: There were 45 participants in this study: 16 oncology clinicians, 9 palliative care clinicians, 15 patients with AML or MDS, and 5 caregivers with mean ages of 46, 49, 70, and 69 years, respectively. Participants in this study had high health literacy with an average patient score of 5.7 (SD 0.6) and an average caregiver score of 6.0 (SD 0.0) on the 6-item cancer health literacy test (possible range 0-6). Four qualitative themes emerged: 1) Serious illness conversations can be conducted via telehealth, 2) Older patients have limited experience using technology but are willing to learn, 3) Patients want to understand their AML or MDS diagnosis better, and 4) Serious illness conversations should be good care, not special care (Table 1). Participants felt that telehealth-based serious illness conversations may provide patients with the comfort of being in a familiar environment but may make interpretation of body language challenging. Older patients were concerned that their lack of experience with technology may limit their ability to successfully use telehealth. Despite this, patients reported they would be willing to learn how to use telehealth, and that the SICP would be helpful and allow them to better understand their diagnosis. Patients shared that the serious illness conversation would be most effective if discussed with hope and positivity. Finally, palliative care clinicians emphasized that serious illness conversations should not fall solely on their specialty. Rather, the field of oncology would benefit from having these conversations regularly, since these patients are often facing diagnoses that have a poor prognosis. The SICP were adapted as follow: 1) Patient preparation letter: Oncology clinicians suggested providing patients with examples of questions for their clinician, and patients felt that the visual layout of the letter was overwhelming. We changed the visual layout from letter to pamphlet. 2) Serious Illness Conversation Guide (SICG): Oncology clinicians suggested simplifying the language of the conversation guide and offered alternative wording to better gauge the patient's understanding of their diagnosis. Oncology clinicians and patients suggested that the word "worried” be removed from the SICG. Patients also suggested removing the word "goals.” 3) Family guide: Oncology clinicians and patients liked the family guide and felt it would have a positive impact on the patient's ability to communicate with loved ones. Some patients felt that the language on the family guide accurately reflected conversations that they have had with their loved ones about their illness. No changes were made to the family guide. Conclusion: We adapted the SICP to meet the unique needs of older patients with AML and MDS. The adapted SICP is being tested in an ongoing single arm pilot study at the Wilmot Cancer Institute. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal