Recording of patient-reported outcomes (PROs) enables direct measurement of the experiences of patients with cancer. In the past decade, the use of PROs has become a prominent topic in health-care ...innovation; this trend highlights the role of the patient experience as a key measure of health-care quality. Historically, PROs were used solely in the context of research studies, but a growing body of literature supports the feasibility of electronic collection of PROs, yielding reliable data that are sometimes of better quality than clinician-reported data. The incorporation of electronic PRO (ePRO) assessments into standard health-care settings seems to improve the quality of care delivered to patients with cancer. Such efforts, however, have not been widely adopted, owing to the difficulties of integrating PRO-data collection into clinical workflows and electronic medical-record systems. The collection of ePRO data is expected to enhance the quality of care received by patients with cancer; however, for this approach to become routine practice, uniquely trained people, and appropriate policies and analytical solutions need to be implemented. In this Review, we discuss considerations regarding measurements of PROs, implementation challenges, as well as evidence of outcome improvements associated with the use of PROs, focusing on the centrality of PROs as part of 'big-data' initiatives in learning health-care systems.
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NUK, OILJ, SBMB, UL, UM, UPUK
Purpose Inpatient palliative care integrated with transplant care improves patients' quality of life (QOL) and symptom burden during hematopoietic stem-cell transplant (HCT). We assessed patients' ...mood, post-traumatic stress disorder (PTSD) symptoms, and QOL 6 months post-transplant. Methods We randomly assigned 160 patients with hematologic malignancies who underwent autologous or allogeneic HCT to inpatient palliative care integrated with transplant care (n = 81) or transplant care alone (n = 79). At baseline and 6 months post-transplant, we assessed mood, PTSD symptoms, and QOL with the Hospital Anxiety and Depression Scale and Patient Health Questionnaire, PTSD checklist, and Functional Assessment of Cancer Therapy-Bone Marrow Transplant. To assess symptom burden during HCT, we used the Edmonton Symptom Assessment Scale. We used analysis of covariance while controlling for baseline values to examine intervention effects and conducted causal mediation analyses to examine whether symptom burden or mood during HCT mediated the effect of the intervention on 6-month outcomes. Results We enrolled 160 (86%) of 186 potentially eligible patients between August 2014 and January 2016. At 6 months post-transplant, intervention participants reported lower depression symptoms on the Hospital Anxiety and Depression Scale and Patient Health Questionnaire (adjusted mean difference, -1.21 95% CI, -2.26 to -0.16; P = .024 and -1.63 95% CI, -3.08 to -0.19; P = .027, respectively) and lower PTSD symptoms (adjusted mean difference, -4.02; 95% CI, -7.18 to -0.86; P = .013), but no difference in QOL or anxiety. Symptom burden and anxiety during HCT hospitalization partially mediated the effect of the intervention on depression and PTSD at 6 months post-transplant. Conclusion Inpatient palliative care integrated with transplant care leads to improvements in depression and PTSD symptoms at 6 months post-transplant. Reduction in symptom burden and anxiety during HCT partially accounts for the effect of the intervention on these outcomes.
Hospice provides high-quality end-of-life care, but patients with leukemias use hospice services less frequently than those with solid tumors. Transfusion dependence (TD) may hinder or delay ...enrollment, because hospice organizations typically disallow transfusions. We examined the association between TD and end-of-life outcomes among Medicare beneficiaries with leukemia. From the Surveillance, Epidemiology, and End Results-Medicare database, we selected beneficiaries with acute and chronic leukemias who died in 2001-2011. We defined TD as ≥2 transfusions within 30 days before death or hospice enrollment. End points included hospice enrollment and length of stay, reporting relative risk (RR) adjusted for key covariates. Among 21 033 patients with a median age of 79 years, 20% were transfusion dependent before death/hospice enrollment. Use of hospice increased from 35% in 2001 to 49% in 2011. Median time on hospice was 9 days and was shorter for transfusion-dependent patients (6 vs 11 days; P < .001). Adjusting for baseline characteristics, TD was associated with a higher use of hospice services (RR, 1.08; 95% confidence interval CI, 1.04-1.12) but also with 51% shorter hospice length of stay (RR, 0.49; 95% CI, 0.44-0.54). Hospice enrollees had a lower likelihood of inpatient death and chemotherapy use and lower median Medicare spending at end-of-life, regardless of TD status. In conclusion, relatively increased hospice use combined with a markedly shorter length of stay among transfusion-dependent patients suggests that they have a high and incompletely met need for hospice services and that they experience a barrier to timely referral. Policy solutions supporting palliative transfusions may maximize the benefits of hospice for leukemia patients.
•Transfusion-dependent Medicare patients with leukemia had a 51% shorter duration of hospice stay, indicating a barrier to timely referral.•Use of hospice in leukemia has increased and is associated with improved quality measures, regardless of transfusion dependence.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Developments in investigational agents and novel regimens in acute myeloid leukemia (AML) were reported in the 2022 American Society of Hematology (ASH) annual meeting. Encouraging efficacy data were ...presented from first-in-human studies of two investigational menin inhibitors, SNDX-5613 and KO-539, in relapsed and refractory (R/R) acute myeloid leukemia (AML) with KMT2A rearrangement or mutant NPM1, with overall response rates (ORR) of 53% (32/60) and 40% (8/20), respectively. The addition of the novel drug pivekimab sunirine, a first-in-class antibody-drug conjugate targeting CD123, to azacitidine and venetoclax in R/R AML resulted in an ORR of 45% (41/91), which rose to 53% in those who were venetoclax naïve. Additional novel triplet treatment combinations included the addition of magrolimab, an anti-CD47 antibody, to azacitidine and venetoclax, with an ORR of 81% (35/43) in newly diagnosed AML, including an ORR of 74% (20/27) in TP53 mutated AML. The addition of the FLT3 inhibitor gilteritinib to azacitidine/venetoclax was also featured, with an ORR of 100% (27/27) in newly diagnosed AML and an ORR of 70% (14/20) in R/R AML.
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
Hematologic malignancies are a heterogeneous group of diseases with unique illness trajectories, treatment paradigms, and potential for curability, which affect patients' palliative and end-of-life ...care needs. Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects. Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay. In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis. Even survivors of hematologic malignancies struggle with late effects, post-treatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life. Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies. Several illness-specific, cultural, and system-based barriers to palliative care integration and optimal end-of-life care exist in this population. However, recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating palliative care to improve the quality of life and care of patients with hematologic malignancies and their caregivers. More research is needed to develop and test population-specific palliative and supportive care interventions to ensure generalizability and to define a sustainable clinical delivery model. Future work also should focus on identifying moderators and mediators of the effect of integrated palliative care models on patient-reported outcomes and on developing less resource-intensive integrated care models to address the diverse needs of this population.
Online administration of surveys has a number of advantages but can also lead to increased exposure to bad actors (human and non-human bots) who can try to influence the study results or to benefit ...financially from the survey. We analyze data collected through an online discrete-choice experiment (DCE) survey to evaluate the likelihood that bad actors can affect the quality of the data collected. We developed and fielded a survey instrument that included two sets of DCE questions asking respondents to select their preferred treatments for multiple myeloma therapies. The survey also included questions to assess respondents' attention while completing the survey and their understanding of the DCE questions. We used a latent-class model to identify a class associated with perverse preferences or high model variance, and the degree to which the quality checks included in the survey were correlated with class membership. Class-membership probabilities for the problematic class were used as weights in a random-parameters logit to recover population-level estimates that minimizes exposure to potential bad actors. Our results highlight the need for a robust discussion around the appropriate way to handle bad actors in online preference surveys. While exclusion of survey respondents must be avoided under most circumstances, the impact of "bots" on preference estimates can be significant.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
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