bluuebunny/crossref_metadata_2025_split huggingface dataset:
Caregiver training for a therapeutic alliance in palliative home care.
Authors: Lopane Diego , Pavesi Carlotta , Arcanà Concetta , Bonelli Beatrice , Ferrari Stefano , Lopane Diego , Giuffrè Santina , Poggio Chiara , Saetta Annalisa , Rimassa Lorenza , Santoro Armando 
Published: November 2018

15 Background: Caregiver (CG) presence and efficiency are crucial in providing a palliative home care (PC) program. The Aims of this study were: 1. to investigate educational needs expressed by caregivers (CGs) of advanced cancer patients (pts) in home care service (HCS) of our Institution; 2. to develop a guide to support PC team; 3. to evaluate the impact of this tool on CGs skills. Methods: Based on published data, we identified 3 areas of interest (therapy administration (TA), care, symptoms management) and 17 specific topics: mobilization, hygiene, skin/mouth care, dysphagia, xerostomia, bowel function, diuresis/urinary catheter care, feeding, and some symptoms. We then prepared a guide with clear information regarding each topic. We mainly focused on symptoms, in particular on pain. We elaborated instructions on TA and administration routes (techniques for subcutaneous (SC) injection/infusion with elastomeric pump). Use of short tips, images, pictures, and cartoons made the guide very accessible. From July to September 2017 the guide was provided to 24 CGs, 8 (33%) men, 16 (66%) women. 12 CGs (50%) were pts’ partners, 10 (41.6%) son/daughter, 1 relative (4.1%), 1 formal CG (4.1%). Several educational interventions (EI) were adopted to reinforce learning according to the pt conditions and CGs’ needs. The effectiveness of EI was retrospectively assessed from clinical records. Results: We offered 218 EI to 24 CGs, with an average of 9 per CG, and within a range of 6-13 per CG. Topics most frequently addressed were: SC injection technique (100%), skin care (21 CGs, 87.5%), pain care (21 CGs, 87.5%), feeding (20 CGs, 83.3%), mobilization techniques (17 CGs, 70.8%). We also performed 16 EI repetitions on 11 CGs (45.8%) on ≥1 topics: 4 for mobilization, 2 for pain, dysphagia, SC injection, feeding, bowel function, 2 for other topics.Assessment of EI effectiveness showed great CG receptivity, with 93% of interventions followed by a change in CG behaviour thereafter. Conclusions: The proposed intervention, the use of a simple guide to reinforce EI, is feasible, well accepted and appears to improve CG’s ability in providing home PC. Based on these results, we added a section dedicated to EI for CGs into the new electronic record of our HCS, introduced since January 2018.
Quality of life and psychological distress in patients with acute myeloid leukemia (AML).
Authors: Markovitz Netana , Waldman Lauren , Carp Julia , Traeger Lara , Abel Gregory A. , Greer Joseph , Fathi Amir Tahmasb , Steensma David P. , LeBlanc Thomas William , DeAngelo Daniel J. , Wadleigh Martha , Hobbs Gabriela , Brunner Andrew Mark , Amrein Philip C. , Stone Richard M. , Temel Jennifer S. , El-Jawahri Areej 
Published: November 2018

154 Background: Older patients with AML face difficult treatment decisions as they can be treated either with multi-drug ‘intensive’ chemotherapy requiring a prolonged hospitalization, or ‘non-intensive’ chemotherapy. Although clinicians often perceive intensive chemotherapy as more burdensome, studies comparing older patients’ quality of life (QOL) and psychological distress while receiving these treatments are lacking. Methods: We conducted a longitudinal study of older patients (≥ 60 years) newly diagnosed with AML receiving intensive (i.e. 7+3: cytarabine/anthracycline combination) or non-intensive (i.e., hypomethylating agents) chemotherapy at two tertiary care hospitals. We assessed patient’s QOL [Functional Assessment of Cancer Therapy-Leukemia], and psychological distress [Hospital Anxiety and Depression Scale [HADS]] at baseline and 2, 4, 8, 12, and 24 weeks after diagnosis. We compared the proportion of patients in each group reporting clinically significant depression or anxiety (HADS subscale cut off ≥ 7) and used mixed linear effects models to compare QOL and psychological distress longitudinally between groups. Results: We enrolled 75.2% (100/133) of eligible patients within 72 hours of initiating intensive (n = 50) or non-intensive (n = 50) chemotherapy. Baseline QOL, depression, or anxiety symptoms did not differ between the groups. At baseline, 33.33% (33/100) and 30% (30/100) of the overall cohort reported clinically significant depression and anxiety, respectively, with no differences between groups. At 4 weeks, 41.98% (34/81) of patients in the overall cohort reported clinically significant depression, with no differences between groups. In mixed linear effects models, there were no differences in QOL (β = -0.71, SE = 1.12, p = 0.527), depression (β = 0.24, SE = 0.20, p = 0.226), or anxiety (β = -0.16, SE = 0.19, p = 0.386) symptoms over all time points. Conclusions: Older patients with AML receiving intensive and non-intensive chemotherapy experience similar QOL and high rates of psychological distress. These findings underscore the need to develop supportive care interventions for older patients with AML, regardless of their initial treatment strategy.
Impact of glioblastoma (GBM)-related cognitive dysfunction (CD) on caregiver burden: Preliminary results from multi-site study in the U.S.
Authors: Au Trang H. , Bauer Hillevi , Menon Jyothi , Willis Connor , Iacob Eli , Ma Junjie , Watanabe Alexandre , Nelson Ryan , Korytowsky Beata , Singh Prianka , Marshall Alexander , Willmarth Nicole , Nghiemphu Phioanh Leia , Dovek Laura , Peters Katherine B. , Balajonda Bea , Cohen Adam Louis , Colman Howard , Stenehjem David D. , Brixner Diana I. 
Published: November 2018

16 Background: GBM is a largely incurable, highly aggressive cancer with high incidence of CD. Caregivers face heightened stress with loved one’s limited life expectancy and additional duties. To better understand this unique group, a survey tool was developed to examine effect of CD on caregiver burden. Methods: Four of 10 planned academic centers are enrolling towards achieving 200+ completed surveys. The survey was developed step-wise: 1) literature review of primary brain tumors, Alzheimer’s disease, and dementia to identify domains; 2) focus groups with neurooncologists and American Brain Tumor Association advocates to narrow domains; 3) caregiver interviews to verify selected domains; 4) single-site pilot study to confirm content (n=20). Dyads with caregiver survey and respective patient’s clinical data are created as possible. Results: Complete data from 31 caregivers and 28 dyads enrolled at Huntsman Cancer Institute, University of Utah and University of California, Los Angeles are currently available. Response rate was 88% for caregivers and 90% for patients. Among caregivers, 87% were patient spouse/partner, 84% female, average age 56 years, 42% currently employed, 32% have no additional help, and 26% are primary caregivers for others. Patients were male (74%), average age 59 years, not working (84%), and being treated for initial diagnosis (67%). Proportion of caregivers performing ≥ 1 caregiving task, i.e. meal preparation, doubled from before to after diagnosis (48% vs. 97%). The majority of caregivers (90%) perceived memory problems in a loved one over last 14 days. Trouble remembering recent events or things interfered with 71% of caregivers’ daily life "somewhat", "quite a bit", or "very much". When ranking effect of CD on caregiver’s general quality of life on a scale of 0 (none) to 10 (significant), 60% and 23% of caregivers indicated ≥ 5 and ≥ 8, respectively. Caregivers’ responses to survey satisfaction questions showed only 23% feel enough is being done to understand caregiving in GBM and 76% were satisfied overall with the survey. Conclusions: Caregivers are affected daily and significantly by GBM-related CD. Results will be updated at time of presentation.
Eating-related distress in patients with advanced cancer cachexia and family members: A survey in palliative and supportive care settings.
Authors: Amano Koji 
Published: November 2018

163 Background: Few studies have investigated nutrition impact symptoms and eating-related distress among advanced cancer patients and their family members. This is an anonymous questionnaire survey to explore the severity of nutrition impact symptoms and the prevalence of eating-related distress among advanced cancer patients and their family members in palliative and supportive care settings. Methods: The questionnaires for patients and their family members have been preliminarily developed by the authors. We have chosen 16 common symptoms of advanced cancer, i.e., 9 symptoms of the ESAS-r and 7 symptoms of the PG-SGA. Each questionnaire concerning eating-related distress consists of 12 items. Results: A total of 140 out of 147 patients responded (95.2%). They were classified into two groups: 1) Non-cachexia/Pre-cachexia (n = 57) and 2) Cachexia/Refractory cachexia (n = 83). The top 3 out of 16 symptoms in all patients were feeling of well-being, lack of appetite, and tiredness. Significant differences between the two groups were observed in 5 symptoms: pain (p = 0.005), nausea (p = 0.005), diarrhea (p = 0.001), abnormal taste (p = 0.017), and difficulty swallowing (p = 0.002), respectively. Concerning eating-related distress, significant differences between the two patient groups were observed in all items except for 2, and those between the two family member groups were observed in all items. The mean numbers of items in which patients/family members answered positively were significantly higher in Cachexia/Refractory cachexia group (p < 0.001, respectively). Conclusions: Advanced cancer patients with cachexia have greater nutrition impact symptoms than those without cachexia, and patients with cachexia and their family members have higher eating-related distress than those without cachexia.
Undertreated emotional distress in older adults with cancer.
Authors: Kapo Jennifer , Canavan Maureen , Presley Carolyn J , Wang Shi-Yi , Feder Shelli , Sheinfeld Ella , Kent Erin , Davidoff Amy J. 
Published: November 2018

165 Background: Depression and anxiety are common among older adults with cancer, and concern about the adequacy of emotional distress management is increasing. We examined receipt of prescription medication (Rx) by older adults with cancer relative to reported activity limitation associated with emotional distress. Methods: Using the 2007-2012 SEER-Medicare Health Outcomes Survey (MHOS) database with a unique linkage to Part D prescription claims, we selected MHOS participants with Part D coverage who were within 5 years of cancer diagnosis. We used claims to identify use of Rx for emotional distress management: anti-depressants, antipsychotics, anxiolytics, and/or sedatives during the 90 days post survey. Participants reported activity limitations (“accomplished less” or “worked less carefully”) within the past 30 days “due to emotional problems.” Limitations were quantified as severe (most/all of the time), moderate (some/little of the time), or none. We used multivariable logistic regression to determine associations of Rx use with degree of activity limitation, controlling for characteristics of cancer, demographics and health status. Results presented are predicted percentages. Results: Reported activity limitation in the study sample (N = 9,105) was 15% severe, 34% moderate, and 52% none. Rx were used by 28% overall, with higher rates for severe (39%) and moderate (33%) compared to no activity limitation (23%), p < .001. Among respondents not using Rx, 13% [32%] reported severe [moderate] activity limitations. Among respondents using Rx, severe [moderate] activity limitation was reported by 20% [39%]. Rx use was lower for male sex, with increasing age, non-white race, with fewer comorbid conditions and without the Part D low-income subsidy. Conclusions: Undertreatment of emotional distress is highly prevalent among older adults with cancer. Many SEER-MHOS respondents reporting moderate or severe activity limitations due to emotional distress did not receive Rx for symptom management, and of those receiving Rx, many still report moderate to severe symptoms. Treatment disparities identified by race/ethnicity, age and sex suggest the need for enhanced emotional distress screening and interventions to reduce treatment barriers.
Clinical and demographic variables of young adult (YA) patients referred to inpatient supportive care.
Authors: Ann-Yi Sujin , Wong Angelique , Wu Jimin , Charone Maira , Baumgartner Karen , Carmack Cindy L. , Castro Debra , Guzman Diana , Joy Manju P , Kuriakose Leela , Madden Kevin , Najera John M , Pangemanan Imelda , Rajani Sabeena Qasim , Raznahan Monica , Stewart Holly A , Tallie Kimmie , Tanco Kimberson Cochien , Zhukovsky Donna S. , Bruera Eduardo 
Published: November 2018

168 Background: Literature suggests that YA cancer patients have unique psychosocial issues and more emotional distress compared to older aged patients. Our study aimed to evaluate clinical and demographic factors of YA cancer patients that may impact physical and psychosocial symptom expression. Methods: A retrospective review was conducted on randomly selected patients seen during 2013-2015 of 3 age groups: 18-39 (YA), 40-64, and 65 and older on demographic, medical, psychosocial history, Morphine Equivalent Daily Dose (MEDD), Edmonton Symptom Assessment Scare (ESAS) scores, and Eastern Cooperative Oncology Group (ECOG) scores which are completed at time of initial consultation with the supportive care inpatient mobile team. Results: 896 (YA = 297, 40-64 cohort = 300, 65 and older = 299) patients were reviewed. YA cohort was associated with being female (n = 179 (60%), p = 0.03), more frequently non-white (Black and Hispanic = 124 (42%), p < 0.00), higher ECOG scores (ECOG 0-2 = 83(39%), p < 0.00) more psychiatric history (n = 95(32%), p = 0.00) and worse ESAS sleep scores (median = 6, p = 0.02). The YA cohort also had higher pain expression than the 65 and older cohort (p = .02). The YA group was more likely to have children younger than 18 years old (n = 171(58%), p < 0.00). Patients with children less than 18 years of age reported higher pain expression (median = 6, p = .05), sleep (median = 6, p = 0.01), and financial distress (median = 2, p = 0.02). Conclusions: Contrary to other findings, YA cancer patients did not report higher symptoms or distress when compared to older age cohorts, with the exception of higher insomnia compared to other age cohorts and higher pain expression than the oldest age cohort. YA with young children reported higher level of pain, sleep and financial distress. Our findings suggest that the YA population may benefit from specialized psychosocial services to address their unique social needs, particularly to address concerns related to being parents of young children.
The caregiver perspective: Advancing the understanding of cancer caregiving in the palliative care setting.
Authors: Raymond Martha , Simonetta Margaret-Ann 
Published: November 2018

17 Background: 2018 data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program estimates there are 15.5 million cancer survivors in the U.S. Throughout the care continuum, cancer caregivers provide invaluable support which greatly impacts and improves patient quality of life. In the palliative care setting caregiver support is vitally important, but many caregivers struggle to take care of their own needs and are not aware of supportive services. Our study explores the unmet needs of cancer caregivers in the palliative care setting. Methods: Over a two-year time period (2015-2017), our professional facilitator met with cancer caregivers in 32 states hosting nationwide focus groups. Primary goals were reaching caregivers in rural, urban, medically underserved, and community oncology settings to gain perspective from diverse populations. Focus groups were held in person and online via facetime conferencing. Results: 778 caregivers (42% male, 58% female) participated. 92% of caregivers did not feel comfortable defining palliative care nor did they realize the various supportive elements palliative care provides. 76% were extremely anxious during care transitions; 71% feel overwhelmed with daily caregiving tasks; 69% want to help make end of life decisions including advance directives in partnership with their loved one, but did not feel equipped to make tough decisions; 64% report lack of patient/caregiver centered communication with their healthcare team, including guidance on adverse effects and training for medical hands-on tasks. Conclusions: Caregivers in the palliative care setting need additional supportive services, effective interventions, and educational programs to meet their unmet needs. With additional support and awareness, enhanced quality of life for both caregiver and patient is possible. Our conversations with caregivers will continue as we increase palliative care awareness, collaborate with partners, develop meaningful programs, and expand our outreach to help meet the needs of caregivers in the palliative care setting.
Immunotherapy-related toxicities: More common than originally reported?
Authors: Cathcart-Rake Elizabeth Jane , Sangaralingham Lindsey R. , Shah Nilay , Mansfield Aaron Scott 
Published: November 2018

184 Background: Population level data regarding incidence of immune-related adverse events (irAE) is lacking. This study evaluated the frequency of irAEs among a large population of patients with non-small cell lung cancer (NSCLC) who received immune checkpoint inhibitors. Methods: Administrative claims data from a large U.S. commercial insurance database (OptumLabs Data Warehouse) were used to retrospectively identify patients with NSCLC who received PD-1 or PD-L1 inhibitors between January 1, 2015 to December 31, 2017. The frequencies of irAEs were reported, identified by having a new medical claim with a corresponding ICD-9 or ICD-10 code during the time period in which the patient was on immunotherapy. Results: Of 2,798 patients with NSCLC (median age at PD-(L)1 initiation: 69 years, interquartile range: 60-75, 1558 male [55.7%], 1240 [44.3%] female), 1,998 (71.4%) received nivolumab, 699 (25.0%) received pembrolizumab, and 101 (3.6%) received atezolizumab. Most patients (1463, 52.3%) received a PD-(L)1 inhibitor as second line therapy; the majority of patients (744) received alkylating agents and antimetabolites prior to receiving PD-(L)1 therapy. See Table 1 for frequencies of irAEs. Conclusions: The current study suggests that the frequencies of some irAEs related to immune checkpoint inhibitor therapies may be higher than those which were reported in the initial trials that led to the FDA approvals for immunotherapies. For example, hypophysitis was noted to occur in 0.6% of patients in the KEYNOTE-024 trial, but was identified in 2.4% of patients in this large cohort. Real world data may refine provider and patient expectations for outcomes beyond what is observed in clinical trials. [Table: see text]
Dry eye after whole brain radiation: Analysis from a prospective study.
Authors: Tobillo Rachel , Pearlstein Kevin A. , Mahbooba Zahra , Moon Dominic Himchan , Shen Colette J. , Marks Lawrence Bruce , Chera Bhishamjit S. , Wang Kyle 
Published: November 2018

198 Background: Lacrimal glands (LGs) receive incidental dose of unknown significance in patients undergoing whole brain radiation therapy (WBRT). Median survival following diagnosis of brain metastases is poor, so quality of life is of utmost importance for these patients. We enrolled patients on a prospective observational cohort study with an endpoint of dry eye syndrome, which is not thought to be a toxicity of WBRT. Methods: Patients receiving WBRT for any diagnosis to a total dose of 25 to 40 Gy in 10 to 20 fractions were eligible. Patients received 3D-conformal WBRT using opposed lateral fields covering the skull and C1 or C2 vertebrae. LGs were not prospectively contoured before treatment but were subsequently contoured for dosimetric analysis. Patients completed the single-question Subjective Evaluation of Symptom of Dryness (5-point Likert scale) at baseline, immediately after WBRT (EndRT), 1 month (1M), 3 months (3M), and 6 months (6M). The primary endpoint was change in proportion of patients at 1M experiencing moderate or worse dry eye (defined as symptoms that cause discomfort and interfere with activities). Orbital dose was analyzed as a surrogate for LG dose as LGs were difficult to contour on computed tomography (CT) imaging. Results: 73 enrolled patients were eligible for analysis. There were 69 evaluable patients at EndRT, 55 at 1M, 33 at 3M, and 28 at 6M. Most patients received 30 Gy in 10 fractions. Median bilateral orbit mean dose was 17 Gy. Median bilateral lacrimal mean dose was 25 Gy. Median survival was 8 months. At baseline, 4% of patients had moderate or worse dry eye versus 9% at EndRT, 11% at 1M (1-tailed sign test, p = 0.031), 9% at 3M, and 7% at 6M. No significant relationship was noted between presence of dry eye and CT-contoured lacrimal gland or orbit doses. Conclusions: WBRT appears to cause a small increase in dry eye symptoms. A correlation between dry eye and LG dose was not observed, perhaps due to the overall low rate of toxicity, uncertainty in CT-based contouring of the LGs, set-up variations between planned and delivered doses, and the possibility of non-radiation causes of dry eye. Nonetheless, physicians should be aware of the possible occurrence of dry eye after WBRT, given its potential effects on quality of life.
Changes in symptom burden associated with exposure to outpatient palliative care in an integrated health system.
Authors: Haupt Eric C. , Sharma Ishita , Nguyen Huong Q 
Published: November 2018

204 Background: Patients with serious illnesses are often referred to palliative care (PC) for symptom management, advance care planning, and goals-of-care discussions. The purpose of this analysis is to describe the symptom burden (SB) and short-term changes in patients receiving outpatient PC from nine clinics within an integrated health system in Southern California. Methods: We included 3,007 adults with cancer who completed the Edmonton Symptom Assessment System (ESAS) at the start of PC from 1/1/14 - 6/30/18. Patients were identified at baseline as having either a high SB if they scored ≥ 4 on at least two out of nine symptoms or low SB if they did not meet this threshold. We compared baseline socio-demographic and clinical characteristics between high SB and low SB patients. We also examined changes in the ESAS for patients with a follow-up survey at 30 ± 14 days after baseline. Results: Patients with high SB at presentation to PC tended to be younger and had comparable co-morbidities to patients with low SB. Availability of a follow-up ESAS was low but similar between groups (18%). Changes in the ESAS met published minimal clinically important differences (MCID) for the high SB patients whereas low SB patients showed worsening symptoms. Conclusions: We observed similar symptom burden in this community-based oncology patient population as other studies from specialized cancer centers. Greater effort is needed to standardize timing of follow-up assessments and integrating personalized symptom goals.[Table: see text]