Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) experience intense inpatient healthcare at the end-of-life (EOL) . Early advance care planning (ACP) may improve care at EOL for patients with AML and 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 ACP discussions. We adapted the SICP for delivery via telehealth to older patients with AML and MDS. We conducted a single-center qualitative study of 45 participants (25 clinicians, 15 older patients with AML and MDS, and 5 caregivers). Participants, whether clinicians, patients, or caregivers, agreed that the SICP would help older patients with AML and 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 extra-ordinary. The adapted SICP may provide older patients with AML and 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.
Background In a single‐arm pilot study, we assessed the feasibility and usefulness of an innovative patient‐centered communication tool (UR‐GOAL tool) that addresses aging‐related vulnerabilities, patient values, and prognostic awareness for use in treatment decision making between older adults with newly diagnosed acute myeloid leukemia (AML), their caregivers, and oncologists. Methods Primary feasibility metric was retention rate; >50% was considered feasible. We collected recruitment rate, usefulness, and outcomes including AML knowledge (range 0–14) and perceived efficacy in communicating with oncologists (range 5–25). Due to the pilot nature and small sample size, hypothesis testing was performed at α = 0.10. Results We included 15 patients (mean age 76 years, range 64–88), 12 caregivers, and 5 oncologists; enrollment and retention rates for patients were 84% and 73%, respectively. Patients agreed that the UR‐GOAL tool helped them understand their AML diagnosis and treatment options, communicate with their oncologist, and make more informed decisions. From baseline to post‐intervention, patients and caregivers scored numerically higher on AML knowledge (patients: +0.6, p = 0.22; caregivers: +1.1, p = 0.05) and perceived greater efficacy in communicating with their oncologists (patients: +1.5, p = 0.22; caregivers: +1.2, p = 0.06). Conclusion We demonstrated that it is feasible to incorporate the UR‐GOAL tool into treatment decision making for older patients with AML, their caregivers, and oncologists.
Patients with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) experience high rates of hospitalization, intensive care unit (ICU) admissions, and in-hospital deaths at end of life (EOL). Early goals-of-care (GOC) discussions might reduce intensity of care at EOL. Portable Medical Order (POLST) forms, known as Medical Orders for Life Sustaining Treatment (MOLST) forms in New York State, allow patients to translate GOC discussions into specific medical orders that communicate their wishes during a medical emergency. To determine if timing of MOLST form completion might be associated with EOL care in patients with AML and MDS. We conducted a retrospective study of 358 adult patients with AML and MDS treated at a single academic center and/or its affiliated sites and who died over a five year period. One-third of patients completed at least one MOLST form >30 days prior to death. Compared to patients who completed a MOLST form within 30 days of death or never completed a MOLST form, those who completed a MOLST form >30 days prior to death were less likely to receive transfusion [Adjusted Odds ratio (AOR) 0.39, p<0.01], chemotherapy (AOR 0.24, p<0.01), life-sustaining treatments (AOR 0.21, p<0.01), or to be admitted to the ICU (AOR 0.21, p<0.01) at EOL. They were also more likely to utilize hospice (AOR 2.72, p<0.01). Earlier MOLST form completion was associated with lower intensity of care at EOL in patients with MDS and AML.
Introduction: EOL care in patients (pts) with hematologic malignancies (HM) has been inadequately studied. Available data suggest that pts with HM are more likely to be hospitalized and receive chemotherapy at EOL, and less likely to be enrolled in hospice relative to pts with solid tumors. Better understanding of the barriers to high-quality EOL care is needed for HM pts. The aim of this study was to identify potential barriers to high-quality EOL care for pts with AML and MDS. Methods: We conducted a retrospective study of pts aged ≥18 years with AML or MDS who were evaluated at Wilmot Cancer Institute and its affiliates, and died between Jan 1, 2014 and Dec 31, 2019. We collected the following EOL metrics: 1) Hospice enrollment; 2) Palliative care (PC) referral; 3) MOLST form completion and do-not-resuscitate orders; 4) Chemotherapy administration within the last 14 days of life; 5) Utilization of the emergency department (ED), hospital, intensive care unit (ICU), and life-sustaining treatments (LSTs) within the last 30 days of life; 6) Transfusion within the last 7 days of life; 7) Place of death; and 8) Time from MOLST form completion, PC referral, and hospice enrollment to date of death. Fisher's exact tests were used to compare EOL metrics between pts with MDS and AML. We used cumulative incidence functions to estimate the probability of PC referral and MOLST form completion within 12 weeks of the first hematology visit, accounting for the competing risk of death. We analyzed the univariate and multivariate associations of timing (>30 days vs never/30 days prior to death) of MOLST form completion, PC referral, and hospice enrollment with utilization of the ED, hospital, ICU, and LSTs at EOL. We evaluated the associations of MOLST form completion, PC referral, and hospice enrollment with hospital death. Results: We included 120 pts with MDS (mean age 73.6; range 25-93) and 238 pts with AML (mean age 65.7; range 20-95). EOL metrics by diagnosis are shown in Table 1. The probability of PC referral within 12 weeks of the first hematology visit was 16.7% [95% Confidence Interval (CI) 12.2-21.9%] and 7.1% (95% CI 3.3-12.9%) for AML and MDS, respectively. The probability of MOLST form completion within 12 weeks of the first hematology visit was 23.7% (95% CI 18.3-29.4%) and 11.9% (95% CI 6.7-18.8%) for AML and MDS, respectively. A MOLST form was completed early (>30 days before death) in 33.3% (N=115/345) of pts. In univariate analysis, these pts were less likely to be hospitalized (78.1 vs 89.3%, p<0.01), be admitted to the ICU (13.9 vs 45.1%, p<0.01), and to utilize LSTs at EOL (13.9 vs 46.7%, p<0.01). Early hospice enrollment (>30 days before death) occurred in 3.8% (N=13/340) of pts. In univariate analysis, these pts were less likely to visit the ED (0 vs 46.6%, p<0.01), be hospitalized (26.7 vs 87.9%, p<0.01), be admitted to the ICU (0 vs 36.5%, p<0.01) and to utilize LSTs at EOL (0 vs 37.5%, p<0.01). Early PC referrals (>30 days before death) occurred in 21.4% (N=73/341) of pts and was not associated with EOL metrics in univariate analysis. In multivariate analysis, after adjusting for age and diagnosis, early MOLST form completion was associated with a lower risk of ICU admission [Odds Ratio (OR) 0.23, p<0.01] and lower risk of utilization of LSTs (OR 0.21, p<0.01). Early hospice enrollment was associated with a lower risk of ED visitation (OR 0.04, p=0.03) and hospitalizations (OR 0.05, p<0.01). Hospice enrollment at any time was associated with a lower risk of death in the hospital (OR 0.14, p<0.01), while MOLST form completion (OR 5.26, p<0.01) and PC referral (OR 4.44, p<0.01) were associated with a higher risk of death in the hospital (likely reflecting the fact that many were done close to EOL in the hospital). There was not a significant association between early PC and EOL metrics in multivariate analysis. Conclusion: We found a high rate of ED visits, hospitalizations, ICU admissions, and use of LSTs at EOL in pts with MDS and AML. The majority of these pts died in the hospital. While most patients completed MOLST forms and had palliative care referrals, these events generally occurred very late in the disease course, often close to EOL. Early MOLST form completion and early hospice enrollment were associated with better EOL quality metrics. Interventions to promote timely completion of orders for life-sustaining treatment, PC referrals, and hospice enrollments may improve EOL care among pts with AML and MDS. Table Disclosures Loh: Pfizer: Consultancy; Seattle Genetics: Consultancy. Liesveld:Abbvie: Honoraria; Onconova: Other: data safety monitoring board. Aljitawi:Sanatela Medical: Patents & Royalties: Patent pending. Mendler:Jazz Pharmaceuticals: Speakers Bureau; GLG: Consultancy.
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