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1.
Biol Blood Marrow Transplant ; 25(8): 1659-1665, 2019 08.
Article in English | MEDLINE | ID: mdl-30959162

ABSTRACT

Disease relapse is the leading cause of death for patients with acute leukemia (AL) and myelodysplastic syndrome (MDS) who undergo allogeneic hematopoietic cell transplantation (HCT). Relapse post-HCT is associated with poor prognosis; however, inpatient healthcare utilization of this population is unknown. Here we describe survival, intensity of healthcare utilization, and characteristics associated with high resource use at the end of life (EOL). Adult patients with AL/MDS who underwent HCT at a large regional referral center with subsequent relapse between 2005 and 2015 were included in this retrospective study. We compared the distribution of demographic and clinical characteristics of patients as well as healthcare utilization over 2 years postrelapse and at EOL by postrelapse disease-directed therapeutic interventions. We created a composite score for EOL healthcare utilization intensity by summing the presence of any of the following criteria: death in the hospital, use of chemotherapy, emergency department, hospitalization, intensive care unit, intubation, cardiopulmonary resuscitation, or hemodialysis in the last month of life. Higher scores indicate more intense healthcare use at EOL. Multivariable linear regression analysis was used to determine variables (demographic characteristics, postrelapse treatment group, advance directives documentation, palliative care referral, time to relapse) associated with EOL healthcare utilization intensity. One hundred fifty-four patients were included; median age at relapse was 56 years (interquartile range [IQR], 39 to 63), 55% were men, 79% had AL, and median time from HCT to relapse was 6 months (IQR, 3 to 10). After relapse, 28% received supportive care only, 50% received chemotherapy only, and 22% received chemotherapy plus cell therapy (either donor lymphocyte infusion, second HCT, or donor lymphocyte infusion plus second HCT). With the exception of time until relapse and Karnofsky Performance Status, baseline characteristics (gender, age, race, graft-versus-host disease, year of treatment) did not significantly differ by postrelapse treatment group. One hundred thirty-six patients (88%) died within 2 years of relapse; survival differed significantly by postrelapse treatment group, with those receiving disease-directed treatment showing lower risk of death. Healthcare use in AL/MDS patients after post-HCT relapse was high overall, with 44% visiting the emergency department at least once (22% at least 2 times), 93% hospitalized (55% at least 2 times, 16% at least 5 times), and 38% using the intensive care unit (median length of stay 5, days; IQR, 3 to 10). Use was high even among those receiving only supportive care. For those patients who died, the mean intensity score for EOL healthcare use was 1.8 (standard deviation, 1.8). Most patients (70%) had a marker of high-intensity healthcare utilization at the EOL or died in hospital. In multivariable analysis, an increase in age (estimate -.03 (95% CI, -.06 to -.003) and having AL versus MDS were significantly associated with a decreased EOL healthcare intensity score; no other variables were associated with intensity of EOL healthcare use. Healthcare utilization after post-HCT relapse is associated with receipt of disease-directed therapy but remains high across all groups despite known poor prognosis. Interventions are needed to minimize nonbeneficial treatments and promote goal-concordant EOL care in this seriously ill patient population.


Subject(s)
Delivery of Health Care , Hematopoietic Stem Cell Transplantation , Leukemia , Myelodysplastic Syndromes , Acute Disease , Adult , Allografts , Disease-Free Survival , Female , Humans , Leukemia/mortality , Leukemia/therapy , Male , Middle Aged , Myelodysplastic Syndromes/mortality , Myelodysplastic Syndromes/therapy , Retrospective Studies , Survival Rate
2.
J Pain Symptom Manage ; 59(4): 916-931.e1, 2020 04.
Article in English | MEDLINE | ID: mdl-31775021

ABSTRACT

CONTEXT: Patients with significant burn injuries likely have palliative care needs. OBJECTIVES: We performed a systematic review of existing evidence concerning the palliative care needs of burn patients. METHODS: Through November 26, 2018, we systematically searched PubMed, CINAHL, Embase, Web of Science, and Scopus, using terms representing burn injuries and the eight domains of quality palliative care as outlined by the National Consensus Project for Quality Palliative Care. Eligible articles involved burn-injured patients treated with an intervention targeting at least one of the eight domains. RESULTS: Our searches yielded 7532 unique records, which led to 238 articles for full review and 88 studies that met inclusion criteria. Seventy-five studies addressed the domain physical aspects of care and merit a separate systematic review; 13 studies were included in our final review. Four of the seven domains-processes of care, psychologic symptoms, social aspects, and end of life-were addressed by studies but three domains-spiritual, cultural, or ethics-were unaddressed. Included studies highlight potential benefits from peridischarge self-care education programs, peer support, and group therapy in improving quality of life. In patients with severe injuries, end-of-life decision-making protocols were associated with increased utilization of comfort-focused treatments. CONCLUSION: Most existing palliative care-related research in burn patients addresses interventions for physical symptoms with minimal literature concerning other domains. Opportunities exist for further research of palliative care in burn populations with emphasis on addressing interventions for all domains and better standardizing the language and outcomes for the palliative care interventions.


Subject(s)
Burns , Hospice and Palliative Care Nursing , Burns/therapy , Humans , Palliative Care , Quality of Health Care , Quality of Life
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