Quality of life and mood of older patients with acute myeloid leukemia (AML) receiving intensive and non-intensive chemotherapy.

Older patients with AML face difficult treatment decisions as they can be treated either with 'intensive' chemotherapy requiring prolonged hospitalization, or 'non-intensive' chemotherapy. Although clinicians often perceive intensive chemotherapy as more burdensome, research is lacking on patients' quality of life (QOL) and psychological distress. We conducted a longitudinal study of older patients (≥60 years) newly diagnosed with AML receiving intensive (cytarabine/anthracycline combination) or non-intensive (hypomethylating agents) chemotherapy. We assessed patients' QOL [Functional-Assessment-of-Cancer-Therapy-Leukemia] and psychological distress [Hospital-Anxiety-and-Depression-Scale] at baseline and 2, 4, 8, 12, and 24 weeks after diagnosis. We enrolled 75.2% (100/133) of eligible patients within 72-hours of initiating intensive (n = 50) or non-intensive (n = 50) chemotherapy. Patient QOL improved over time (ß = 0.32, P = 0.013). At baseline, 33.3% (33/100) and 30.0% (30/100) of patients reported clinically significant depression and anxiety symptoms, respectively, with no differences between groups. Patients' depression symptoms did not change over time, while their anxiety symptoms decreased over time (ß = -0.08, P < 0.001). Patient-reported QOL, depression and anxiety symptoms did not differ significantly at any time point between those who received intensive versus non-intensive chemotherapy. Older patients with AML experience improvements in their QOL and anxiety while undergoing treatment. Patients receiving intensive and non-intensive chemotherapy have similar QOL and mood trajectories.

Patient-Clinician Discordance in Perceptions of Treatment Risks and Benefits in Older Patients with Acute Myeloid Leukemia.

BACKGROUND: Older patients (≥60 years) with acute myeloid leukemia (AML) face difficult decisions regarding treatment with "intensive" chemotherapy that carries significant toxicity for a small chance of a cure versus "nonintensive" chemotherapy to control the disease, but with fewer side effects. However, studies of how these patients understand the risks and benefits of such treatments are lacking. METHODS: We conducted a longitudinal study of older patients newly diagnosed with AML assessing patients' (n = 100) and oncologists' (n = 11) perceptions of treatment-related mortality at enrollment and prognosis at 1 month. We examined concordance between patients' and oncologists' perceptions using Cohen's kappa (κ < 0.10 indicates little/no concordance). RESULTS: We enrolled patients within 72 hours of initiating intensive (n = 50) or nonintensive (n = 50) chemotherapy. Whereas 91% of patients reported that they were "somewhat" to "extremely likely" to die from treatment, oncologists estimated that only 12% were at high risk of dying because of treatment (κ = -0.09). Ninety percent of patients reported that they were "somewhat" or "very likely" to be cured of their AML, whereas oncologists estimated this chance of cure for only 31% of patients (κ = 0.05). Among patients receiving intensive chemotherapy, 98% reported that they were "somewhat" or "very likely" to be cured, whereas their oncologists estimated this likelihood of cure for only 49% (κ = 0.04); among those receiving nonintensive chemotherapy and their clinicians, these proportions were 82% and 13%, respectively (κ = 0.03). Patients who indicated a lower likelihood of cure reported significantly higher depression symptoms (p = .03). CONCLUSION: Older patients with AML overestimate the risks and benefits of treatment. Interventions to facilitate communication and enhance patients' understanding of the goals of therapy and treatment risk are needed. IMPLICATIONS FOR PRACTICE: Older patients with acute myeloid leukemia (AML) are confronted with challenging decisions regarding treatment with "intensive" chemotherapy that carries significant toxicity for a small chance of a cure versus "nonintensive" chemotherapy to control the disease, but with fewer side effects. A clear understanding of the likely outcome and risks of the various treatment strategies is essential for these patients to make informed decisions about their care. This article reports that older patients with AML overestimate both the risks and benefits of treatment and have substantial misperceptions about their prognosis. Interventions to enhance patients' understanding of their prognosis and treatment risk are needed.

Effect of Inpatient Palliative Care During Hematopoietic Stem-Cell Transplant on Psychological Distress 6 Months After Transplant: Results of a Randomized Clinical Trial.

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.

Effects of Early Integrated Palliative Care on Caregivers of Patients with Lung and Gastrointestinal Cancer: A Randomized Clinical Trial.

BACKGROUND: The family and friends (caregivers) of patients with advanced cancer often experience tremendous distress. Although early integrated palliative care (PC) has been shown to improve patient-reported quality of life (QOL) and mood, its effects on caregivers' outcomes is currently unknown. MATERIALS AND METHODS: We conducted a randomized trial of early PC integrated with oncology care versus oncology care alone for patients who were newly diagnosed with incurable lung and noncolorectal gastrointestinal cancers and their caregivers. The early PC intervention focused on addressing the needs of both patients and their caregivers. Eligible caregivers were family or friends who would likely accompany patients to clinic visits. The intervention entailed at least monthly patient visits with PC from the time of diagnosis. Caregivers were encouraged, but not required, to attend the palliative care visits. We used the Hospital Anxiety and Depression Scale (HADS) and Medical Health Outcomes Survey Short-Form to assess caregiver mood and QOL. RESULTS: Two hundred seventy-five caregivers (intervention n = 137; control n = 138) of the 350 patients participated. The intervention led to improvement in caregivers' total distress (HADS-total adjusted mean difference = -1.45, 95% confidence interval [CI] -2.76 to -0.15, p = .029), depression subscale (HADS-depression adjusted mean difference = -0.71, 95% CI -1.38 to -0.05, p = .036), but not anxiety subscale or QOL at week 12. There were no differences in caregivers' outcomes at week 24. A terminal decline analysis showed significant intervention effects on caregivers' total distress (HADS-total), with effects on both the anxiety and depression subscales at 3 and 6 months before patient death. CONCLUSION: Early involvement of PC for patients with newly diagnosed lung and gastrointestinal cancers leads to improvement in caregivers' psychological symptoms. This work demonstrates that the benefits of early, integrated PC models in oncology care extend beyond patient outcomes and positively impact the experience of caregivers. IMPLICATIONS FOR PRACTICE: Early involvement of palliative care for patients with newly diagnosed lung and gastrointestinal cancers leads to improvement in caregivers' psychological symptoms. The findings of this trial demonstrate that the benefits of the early, integrated palliative care model in oncology care extend beyond patient outcomes and positively impact the experience of caregivers. These findings contribute novel data to the growing evidence base supporting the benefits of integrating palliative care earlier in the course of disease for patients with advanced cancer and their caregivers.

Qualitative Study of Patients' and Caregivers' Perceptions and Information Preferences About Hospice.

OBJECTIVE: The goal of this study is to assess perceptions about hospice among patients with metastatic cancer and their caregivers (i.e., family and/or friends). DESIGN AND SETTING: We conducted semi-structured interviews with 16 adult patients with a prognosis ≤12 months and 7 of their caregivers. The interviews focused on perceptions, knowledge, and information preferences about hospice. Two raters coded interviews independently (κ > 0.85). We used a framework approach for data analysis. RESULTS: Participants showed variable gaps in understanding about hospice, including who would benefit from hospice care and the extent of services provided. They all perceived that hospice involves a psychological transition to accepting imminent death and often referred to hospice from a relatively cognitive distance, using hypothetical scenarios of others for whom hospice would be more relevant. Participants' attitudes about hospice reflected their concerns about suffering, loss of dignity, and death, as well as their perceived understanding of hospice services. These attitudes along with the psychological barriers to projecting a need for hospice and lack of knowledge were all perceived as important barriers to hospice utilization. All participants felt they needed more information about hospice, yet they were mixed regarding the optimal timing of this information. CONCLUSIONS: Study participants had misunderstandings about hospice and perceived end-of-life (EOL) concerns such as fear of suffering, loss of dignity, and death, as well as lack of knowledge as the main barriers to hospice utilization. Interventions are needed to educate patients and their families about hospice and to address their EOL concerns.

Effect of Inpatient Palliative Care on Quality of Life 2 Weeks After Hematopoietic Stem Cell Transplantation: A Randomized Clinical Trial.

Importance: During hospitalization for hematopoietic stem cell transplantation (HCT), patients receive high-dose chemotherapy before transplantation and experience significant physical and psychological symptoms and poor quality of life (QOL). Objective: To assess the effect of inpatient palliative care on patient- and caregiver-reported outcomes during hospitalization for HCT and 3 months after transplantation. Design, Setting, and Participants: Nonblinded randomized clinical trial among 160 adults with hematologic malignancies undergoing autologous/allogeneic HCT and their caregivers (n = 94). The study was conducted from August 2014 to January 2016 in a Boston hospital; follow-up was completed in May 2016. Interventions: Patients assigned to the intervention (n=81) were seen by palliative care clinicians at least twice a week during HCT hospitalization; the palliative intervention was focused on management of physical and psychological symptoms. Patients assigned to standard transplant care (n=79) could be seen by palliative care clinicians on request. Main Outcomes and Measures: Primary: change in patient QOL from baseline to week 2; secondary: patient-assessed mood, fatigue, and symptom burden scores at baseline, 2 weeks, and 3 months after HCT and caregiver-assessed QOL and mood at baseline and 2 weeks after HCT. Results: Among 160 enrolled patients (mean age, 60 [SD, 13.3] years; 91 women [56.9%]; median hospital stay, 21 days) and 94 caregivers, 157 (98.1%) and 89 (94.7%), respectively, completed 2-week follow-up, and 149 patients (93.1%) completed 3-month follow-up. Patients in the intervention group reported a smaller decrease in QOL from baseline to week 2 (mean baseline score, 110.26; week 2 score, 95.46; mean change, -14.72) compared with patients in the control group (mean baseline score, 106.83; week 2 score, 85.42; mean change, -21.54; difference between groups, -6.82; 95% CI, -13.48 to -0.16; P = .045). Among the secondary outcomes, from baseline to week 2, patients in the intervention group vs those in the control group had less increase in depression (mean, 2.43 vs 3.94; mean difference, 1.52; 95% CI, 0.23-2.81; P = .02), lower anxiety (mean, -0.80 vs 1.12; mean difference, 1.92; 95% CI, 0.83-3.01; P < .001), no difference in fatigue (mean, -10.30 vs -13.65; mean difference, -3.34; 95% CI, -7.25 to 0.56; P = .09), and less increase in symptom burden (mean, 17.35 vs 23.14; mean difference, 5.80; 95% CI, 0.49-11.10; P = .03). At 3 months after HCT, intervention patients vs control patients had higher QOL scores (mean, 112.00 vs 106.66; mean difference, 5.34; 95% CI, 0.04-10.65; P = .048) and less depression symptoms (mean, 3.49 vs 5.19; mean difference, -1.70; 95% CI, -2.75 to -0.65; P = .002) but no significant differences in anxiety, fatigue, or symptom burden. From baseline to week 2 after HCT, caregivers of patients in the intervention group vs caregivers of patients in the control group reported no significant differences in QOL or anxiety but had a smaller increase in depression (mean, 0.25 vs 1.80; mean difference, 1.55; 95% CI, 0.14-2.96; P = .03). Conclusions and Relevance: Among adults at a single institution undergoing HCT for hematologic malignancy, the use of inpatient palliative care compared with standard transplant care resulted in a smaller decrease in QOL 2 weeks after transplantation. Further research is needed for replication and to assess longer-term outcomes and cost implications. Trial Registration: clinicaltrials.gov Identifier: NCT02207322.

Quality of life and mood predict posttraumatic stress disorder after hematopoietic stem cell transplantation.

BACKGROUND: During hospitalization for hematopoietic stem cell transplantation (HCT), patients experience a steep deterioration in quality of life (QOL) and mood. To our knowledge, the impact of this deterioration on patients' QOL and posttraumatic stress disorder (PTSD) symptoms after HCT is unknown. METHODS: We conducted a prospective longitudinal study of patients hospitalized for HCT. They assessed QOL using the Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT) and depression and anxiety symptoms were assessed using the Patient Health Questionnaire-9 (PHQ-9) at the time of admission for HCT, during hospitalization, and 6 months after HCT. We also used the Hospital Anxiety and Depression Scale (HADS) to measure patients' anxiety and depression symptoms at baseline and during HCT hospitalization. The PTSD Checklist was used to assess for PTSD symptoms. Multivariable linear regression models were used to identify predictors of QOL and PTSD symptoms at 6 months. RESULTS: We enrolled 90 of 93 consecutively eligible patients (97%) undergoing autologous and allogeneic HCT. Data at 6 months were available for 67 participants. At 6 months, 28.4% of participants met the criteria for PTSD and 43.3% had clinically significant depression. On multivariable regression analyses adjusting for significant covariates, changes in QOL and depression scores from week 2 of HCT hospitalization to baseline predicted worse QOL (changes in scores between week 2 and baseline [Δ] QOL: ß, 0.94 [P<.0001] and Δ PHQ-9: ß, -2.59 [P = 0.001]) and PTSD symptoms (Δ QOL: ß, -0.40 [P<.0001] and Δ PHQ-9: ß, 1.26 [P<.0001]) at 6 months after HCT. CONCLUSIONS: Six months after HCT, a significant percentage of patients met the criteria for PTSD and depression. A decline in QOL and an increase in depressive symptoms during hospitalization for HCT were found to be the most important predictors of 6-month QOL impairment and PTSD symptoms. Therefore, managing symptoms of depression and QOL deterioration during HCT hospitalization may be critical to improving QOL at 6 months and reducing the risk of PTSD. Cancer 2016;122:806-812. © 2015 American Cancer Society.

Quality of life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation.

BACKGROUND: We conducted a study to investigate the impact of hospitalization for hematopoietic stem cell transplantation (HCT) on the quality of life (QOL) and mood of patients and family caregivers (FC). METHODS: We conducted a longitudinal study of patients who were hospitalized for HCT and their FC. We assessed QOL (using the Functional Assessment of Cancer Therapy-Bone Marrow Transplantation) and mood (using the Hospital Anxiety and Depression Scale) at baseline (6 days before HCT), day +1, and day +8 of HCT. We administered the Medical Outcomes Study Health Survey Short Form-36 to examine FC QOL (Physical Component Scale and Mental Component Scale). To identify predictors of changes in QOL, we used multivariable linear mixed models. RESULTS: We enrolled 97% of eligible patients undergoing autologous (30 patients), myeloablative (30 patients), or reduced intensity (30 patients) allogeneic HCT. Patients' QOL markedly declined (mean Functional Assessment of Cancer Therapy-Bone Marrow Transplantation score, 109.6 to 96.0; P<.0001) throughout hospitalization. The percentage of patients with depression (Hospital Anxiety and Depression Scale-Depression score of >7) more than doubled from baseline to day +8 (15.6% to 37.8%; P<.0001), whereas the percentage of patients with anxiety remained stable (22.2%; P = .8). These results remained consistent when data were stratified by HCT type. Baseline depression (ß, -2.24; F, 42.2 [P<.0001]) and anxiety (ß, -0.63; F, 4.4 [P =.03]) were found to independently predict worse QOL throughout hospitalization. FC QOL declined during the patient's hospitalization (physical component scale: 83.1 to 79.6 [P =.03] and mental component scale: 71.6 to 67.4 [P =.04]). CONCLUSIONS: Patients undergoing HCT reported a steep deterioration in QOL and substantially worsening depression during hospitalization. Baseline anxiety and depression predicted worse QOL during hospitalization, underscoring the importance of assessing pre-HCT psychiatric morbidity.