bluuebunny/crossref_metadata_2025_split huggingface dataset:
Acute myeloid leukemia (AML) patients' understanding of prognosis and treatment goals: A mixed-methods study.
Authors: LeBlanc Thomas William , Bloom Catherine T , Davis Debra M. , Locke Susan C. , Steinhauser Karen E. , Ubel Peter A. , Tulsky James A. , Abernethy Amy Pickar 
Published: February 2017

221 Background: Patients with AML face complex information about the risks and rewards of pursuing treatments of varying intensity. Little is known about what patients understand or value in the decision-making process. Methods: AML inpatients receiving induction chemotherapy completed weekly electronic surveys about their prognosis and treatment goals, along with a baseline semi-structured, qualitative interview exploring their understanding of illness. Their oncologists (MDs) completed baseline surveys about prognosis and treatment goals. We followed a mixed-methods approach to analysis, applying standard statistical methods to survey data, and a constant-comparative qualitative approach to the interview data to enrich our understanding of survey results. Results: We enrolled 13 dyads (a patient and MD pair). Mean patient age was 65.5, and all had high-risk disease due to either age >60, complex cytogenetics, secondary AML, or relapsed disease. At baseline, mean MD-rated chance of cure was 27% (SD 17.6), while patients’ rating was 54% (SD 34.7; p=0.02). Only 2 patients’ estimates of cure matched their MD’s rating, yet MDs rated their patients’ prognostic understanding as high (mean 7.2 on an 11-point scale). MDs reported an average of 3.1 available treatment options, but patients recalled just 1.5. Most MDs gave a specific treatment recommendation (11 of 13), and most patients received the recommended treatment (10 of 11). Agreement about treatment goal was markedly worse than expected by chance (kappa -0.41; 95% CI -0.88-0.07). Qualitative analysis suggests that patients often viewed treatment decisions as binary “life-or-death” propositions, rather than choices between options with differing goals and intensities. Patients also significantly underestimated the risks of induction chemotherapy. Conclusions: AML patients receiving induction chemotherapy have a poor understanding of their prognosis, treatment goals, and risks of induction chemotherapy, but their oncologists are not aware of this. These findings suggest the need for an intervention to improve patient understanding of their illness and treatment options.
Assessing the Preparatory Grief in Advanced Cancer Patients (PGAC) instrument in an American population.
Authors: Vergo Maxwell Thomas , Whyman Jeremy D. , Kestel Jeanne , Rector Christopher 
Published: February 2017

225 Background: Only 50% of cancer patients who screen positive on the Distress Thermometer accept referral to psychosocial resources and mainly for challenges coping with overwhelming emotional response to losses. The Preparatory Grief in Advanced Cancer (PGAC) instrument was shown to have significant associations with hopelessness, anxiety, and depression in a Greek population with favorable potential as a screening tool. We aimed to assess the use of the PGAC in a sample of American patients diagnosed with incurable cancer as a more efficient screening tool for patients who would benefit from additional psychosocial referrals. Methods: We conducted this survey with participants from Northwestern University in Chicago, IL. Participants were US citizens and >18 years old with an incurable cancer and no history of substance abuse or current psychiatric diagnosis. Patients were asked to complete a single survey composed of demographic data and scales including the PGAC, Distress Thermometer, HADS, ESAS and QOL. We used pair-wise correlation measurements, which included p-value measurements for testing whether the correlation coefficient was significantly different from 0. We then used pair-wise correlation coefficients to assess for p-value < 0.05 at different PGAC scores. Results: 53 patients were surveyed, of which 57% (30) were outpatients. The PGAC score was associated with the distress thermometer (R=0.74, p=<0.001), HADS (R=0.65, p=<0.01), and ESAS (R=0.49, p=<0.01) as well as inversely correlated with QOL score (R=-0.45, p=<0.001). Additionally, PGAC > 21 (p=0.02) was associated with elevated distress thermometer score (p=0.02) and elevated HADS scores (p=0.04). Conclusions: We tested the PGAC in an American population for the first time and found correlation between PGAC other validated measures (Distress Thermometer, ESAS, HADS, QOL) in an American population. We propose a PGAC cutoff of >21 to assess for preparatory grief due to its association with elevated scores on Distress and HADS scales above this threshold. This instrument may better identify patients struggling with coping who would benefit from additional support but further investigation is needed.
Early introduction of palliative care for children with solid tumors.
Authors: Fernandez Karen S. , Lucia Rober J. , Buchheit Rachel , Holman Michele J. , Sandiford Penelope , Sollenberger Laura M. 
Published: February 2017

23 Background: Patients with solid tumors (ST) have the highest rate of relapse and mortality among pediatric oncology. Many patients suffer from acute and chronic therapy-related toxicity that have major implications in the patients’ lives. An early introduction of palliative care consultation (PCC) for patients with ST was implemented in 2012. Objectives: To assess the impact of the early introduction of PCC for children with ST on 1) Facilitation of interdisciplinary meetings (IDM) and goals of care 2) Counseling support including coping, advocacy, self-care, 3) Grieving, 4) End-of-life decision making/planning, and 5) Bereavement. Methods: An audit of all PCC from November/2012 to May/2014 was performed. Newly diagnosed patients with high risk ST (metastatic disease, need for HSCT or risk for relapse of > 30%) were eligible for early PCC (36/44). Patients with brain tumors were excluded (19). Counselors were introduced to the patient/family at diagnosis. The perception of the intervention was explored among physicians and counselors. Results: 29/35 patients (72%) were offered early PCC, 1 declined the intervention. 17/29 developed disease relapse or progression (58%), 11/17 died. 9/29 had high risk ST without relapse (31%), 6/29 had loss of physical function (21%), 5/29 had other chronic diseases (17%). 20 had IDM for re-direction of goals of care. 25 (86%) received at least 1 of 3 counseling aspects. 20 received grieving support during treatment (6 due to loss of physical function, 4 during relapse and 11 during the dying process). 11 received end-of-life and bereavement support. Median number of visits/patient was 14. Pediatric oncologists felt early PCC favored effective communication between patients/families and medical teams, counselors felt early PCC was critical for rapport and trust building for an effective and productive professional relationship that strengthen the continuity of care. Conclusions: Early PCC for children with ST is feasible, and well-accepted by patients/families and physicians. It facilitates the comprehensive care of patients with ST throughout the disease trajectory.
Creating communicative opportunity: The supportive benefits of legacy building for families of advanced cancer patients.
Authors: Bernat Jennifer Kim , Helft Paul R. , Wilhelm Laura R. , Schmidt Karen , Johns Shelley A. 
Published: February 2017

230 Background: Being diagnosed with advanced cancer is a painful reality that impacts entire families. Families face the challenge of great loss and can regret conversations left unspoken. Dignity therapy (DT) is an empirically supported intervention that gives families communicative opportunity. During DT, terminally ill patients engage in legacy building and create a written project containing their meaningful memories and values. This project is given to the family, succeeding the person in death and providing continuity to those who are left behind. We developed a narrative intervention based on DT that used a novel web portal for project dissemination. This study qualitatively explores the family’s reactions to legacy building to learn about its potential for future bereavement support. Methods: Semi-structured phone interviews (20-30 minutes) with family members (n=7) of terminally ill cancer patients were completed approximately one week after receiving the legacy project. Recipients were spouses (n=4), siblings (n=2), or an adult child (n=1). Interviews were coded using conventional content analysis and an open-coding strategy. Themes were recorded as they emerged. Results: Three communication themes emerged from the data. Legacy building: (1) facilitates conversation; (2) creates new knowledge and understanding; and (3) leaves lasting communication for future generations. The family members felt overall communication improved before the patient died, and they were able to discuss the terminal nature of their loved one’s illness. New knowledge was communicated in the project, which sometimes led to further understanding of personal life events. Also, the project was viewed as a family heirloom to be bequeathed to future generations. All family members stated they would recommend legacy building to others. Conclusions: This study adds the unique impact of communication to the literature on the supportive benefit of DT for families of advanced cancer patients. Future research should investigate and quantitatively assess bereavement outcomes for families over time, as well as the direct impact these outcomes have on family members’ quality of life.
Stress and empathy among internal medicine trainees on an inpatient hematology-oncology ward.
Authors: McFarland Daniel Curtis , Kirkwood Katherine , Maki Robert G. 
Published: February 2017

231 Background: Effectively managing patient distress in oncology is challenging. Just as patients and their families experience distress over cancer, trainees in oncology also experience distress. This study evaluates whether increased physician-in-training distress acutely reduces empathy. Terror Management Theory provides the theoretical framework for the hypothesis. Methods: 35 internal medicine interns and residents completed a pre and post rotation Impact of Events (IES) and Interpersonal Reactivity Index (IRI) for comparison after 2-4 weeks. IES and IRI measure distress and empathy respectively. Results: Overall IRI empathy decreased (paired t-test, p=0.02) but only significantly in the Fantasy subscale (p=0.008). Empathy scores were below historical controls and did not differ between males and females (p=0.06). Pre and post rotation IES scores averaged 19.7 and 20.7. Distress was significant (>8) in 82% and 88% and severe (>33-PTSD range) in 20% and 22% of Pre/Post IES, respectively. Time on the ward averaged 2.6 weeks and residents attended to 4.6 actively dying patients, of which 38% stated it was "the most stressful experience"; however, 56% found "meaning" in the work. 48% mentioned patient death as the traumatic event (responding to IES). Conclusions: Residents demonstrated pathological levels of distress which affected aspects of empathy in a short period of time and related predominately to death experiences. Ultimately, physician self-management of vicarious distress during oncology training and enhanced maintenance of empathy could improve patient distress management, but this idea will require further study. [Table: see text]
Linking dispositional mindfulness and positive psychological processes in cancer survivorship: A multivariate path analysis.
Authors: Beck Anna Catherine , Garland Eric , Thielking Paul , White Shelley 
Published: February 2017

237 Background: Research indicates dispositional mindfulness is linked with positive psychological outcomes. This disposition, which is malleable through training, is characterized by the tendency exhibit nonjudgmental and nonreactive awareness of one’s thoughts, emotions, and present moment sensory-perceptual experience. Although this trait has been linked with salutary outcomes in the broader mental health literature, less is known about the trait of mindfulness in cancer survivors and how it may be linked with indices of psychological and physical health relevant to cancer survivorship. Methods: We conducted a multivariate path analysis of cross-sectional data from a heterogenous sample of cancer patients (N = 97) to test a conceptual model linking dispositional mindfulness with cancer-related quality of life via positive psychological processes. Results: We found that patients with higher levels of dispositional mindfulness were more likely to pay attention to positive experiences (β = 0.47), a propensity which was associated with positive reappraisal of stressful life events (β = 0.46). Patients who endorsed more frequent positive reappraisal had a greater sense of sense of meaning in life (β = 0.43) and savored rewarding or life affirming events (β = 0.45). In turn, those who engaged in high levels of savoring had better quality of life (β = 0.33) and suffered from less emotional distress (β = -0.54). Overall model fit was excellent, χ2/df= 1.18; CFI = 0.99; RMSEA = 0.04 (0.00, 0.12). Conclusions: The data support our hypothetical model of the processes by which mindfulness promotes psychological flourishing in the face of cancer. Dispositional mindfulness appears to broaden attention from a myopic focus on illness to encompass previously unattended positive features of the social and natural environment. With this broader set of information from which new, more adaptive situational appraisals may be generated, mindfulness may engender positive reappraisals of stressful life events and promote sense of meaning in life. When sustained over time, these processes may propel an upward spiral of positive cognition-emotion interactions with salutary consequences for cancer survivorship.
Psychosocial outcomes in active treatment through survivorship.
Authors: Reed Sarah C. , Bell Janice , Whitney Robin L. , Davis Andra , Lash Rebecca Salisbury , Kim Katherine , Copenhaver David , Bold Richard J. , Joseph Jill G. 
Published: February 2017

241 Background: An estimated 13.7 million cancer survivors live in the United States, a population projected to reach 18 million in 2022. Late- and long-term psychological and emotional effects of cancer can be severe and unfortunately, often go unrecognized and untreated. Few population based data exist that capture psychosocial outcomes across the cancer continuum, from active treatment through survivorship. Methods: We analyzed the Medical Expenditure Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement (n=1,592) to examine psychosocial outcomes among active treatment and survivorship patients across the post-treatment trajectory. Survey-weighted regression models were used to determine the risk of depression (PHQ-2), psychological distress (K-6) and cancer-specific worry related to recurrence. The primary independent variable was post-treatment survivorship status, categorized in years (1-2; 3-4; 5-9; 10-20; >21years) compared to active treatment as the reference group. All models were adjusted for plausible confounding variables (age, sex, race/ethnicity, marital status, employment, income, education, health insurance and health status). Estimates are generalizable to US non-institutionalized populations. Results: No significant difference in the risk of depression (PHQ-2) or psychological distress (K-6) was evident between those in active treatment and cancer survivors at any time post-treatment and those in active treatment. In contrast, cancer-specific worry was significantly higher among those respondents in active treatment (OR 4.3; 95% CI: 2.8, 6.6) compared to those post-treatment. Within the post-treatment survivorship categories, cancer-specific worry generally declined with time post-treatment; however these associations were only significant among those whose treatment was more than 20 years ago (OR= 0.12; 95% CI: 0.04, 0.36) relative to those in active treatment. Conclusions: Psychosocial concerns are pervasive among cancer survivors and are similar to concerns among individuals undergoing active treatment. These findings highlight unmet psychosocial needs among cancer survivors and demonstrate the importance of targeted interventions across the survivorship continuum.
Oncologist liaison: Satisfaction and symptoms in cancer long survivors.
Authors: García Navalón Francisco Javier , Monfort García Rosa , Cunquero Tomás Alberto Jacobo , Umanzor Funez Gerardo Antonio , Palomar Coloma Virginia , Iranzo Vega , Blasco Ana , Camps Carlos 
Published: February 2017

251 Background: Each year, the prevalence of cancer long survivors (CLS) increases; defined as a person who after five years of diagnosis and treatment is free from disease. Health problems faced by these patients are different from those in general population. Because of that, our service launched in 2007 the figure of the Oncologist Liaison, which acts as a link, and is responsible for assessing these Patients at Specialty Centers. Methods: 238 questionnaires, answered by CLS, were collected between January 2013 and April 2014. Variables of interest were collected by a 18-item questionnaire, designed to assess the aftermath of treatment, socio-emotional impact and employment impact. To assess the performance, methods of descriptive statistics have been used. Results: 90.6% of CLS believe that Oncologist Liaison improves their quality of life, with a decrease in anxiety in 80% of them. 52% of the patients (124) have residual symptoms, being the most frequent asthenia (27.6%). The most prominent symptoms were neurological, such as insomnia (16.5%), anxiety (17.4%) and depression (12.2%). Musculoskeletal problems included myalgia (29.5%), arthralgia (27.5%) and paresthesias (18.3%). Cancer and its treatment have a great impact in sexuality, affecting the 35% of the patients: 24'6% have sexual appetite loss and 7.5% dyspareunia; 10.5% of the men refer impotence and premature ejaculation 5% of them; 28.5% of the women referred vaginal dryness. Conclusions: First, more than half of our patients presented residual symptoms; reporting 90% of them improvement in quality of life related to surveillance. Second, it is necessary to create in our Medical Oncology Services a professional dedicated to coordinate the scientific and organizational aspects necessary for a good follow-up of CLS.
Symptom distress and symptom clusters in underserved Chinese-American cancer patients.
Authors: Dhingra Lara , Lam Kin Y. , Cheung William , Shao Theresa H. , Li Zujun , Van de Maele Sandra , Chang Victor Tsu-Shih , Chen Jack , Ye Huiyan , Wong Rhoda , Lam Wan , Chan Selina , Bookbinder Marilyn , Dieckmann Nathan , Portenoy Russell 
Published: February 2017

27 Background: Cancer is prevalent in the rapidly-growing Chinese-American community, yet little is known about symptom burden to guide comprehensive treatment planning. We evaluated symptom distress and symptom clusters in a large sample of Chinese-American patients with cancer. Methods: Patients were consecutively recruited from four oncology practices and completed a translated cancer symptom scale. Latent class cluster analysis explored symptom distress clusters in patients. Results: Of 1,436 patients screened, 94.4% were non-English speaking and 45.1% were undergoing active cancer therapy. The most common cancer sites were breast (32.6%), lung (14.8%), head and neck (12.5%), and hematologic (10.1%). Overall, 1,289 (89.8%) patients had > 1 symptom and 1,129 (78.6%) patients had > 2. The most prevalent symptoms were lack of energy (57.0%), dry mouth (55.6%), feeling sad (49.3%), worrying (47.5%), and difficulty sleeping (46.8%). Symptoms causing “quite a bit” or “very much” distress included: difficulty sleeping (37.9%), lack of appetite (37.2%), feeling nervous (35.8%), pain (35.2%), and worrying (34.0%). Four symptom distress clusters were identified: very low physical and psychological symptom distress (49.5%); very low physical and moderate psychological symptom distress (25.2%); moderate physical and psychological symptom distress (17.4%), and high physical and psychological symptom distress (7.8%). Patients in the last group reported lack of energy, difficulty sleeping, pain, feeling sad, and worrying. Conclusions: Symptom prevalence is high in community-dwelling, Chinese-American cancer patients and half experience moderate to high distress from clusters of physical symptoms, psychological symptoms, or both. These data have important implications for the development of effective interventions for symptom control.
Characteristics and outcomes of persons with advanced cancer associated with having a family caregiver: A classification tree analysis.
Authors: Dionne-Odom J Nicholas , Raju Dheeraj , Hull Jay , Akyar Imatullah , Lyons Kathleen , Azuero Andres , Frost Jennifer , Bakitas Marie 
Published: February 2017

29 Background: Little is known about the impact that having a family caregiver (FCG) has on individuals with advanced cancer. We examined patient characteristics and outcomes most associated with having versus not having a primary FCG. Methods: Secondary data analysis of a randomized controlled trial of an early palliative care intervention (Project ENABLE [Educate, Nuture, Advise, Before Life Ends]) for patients with advanced cancer and their primary FCGs (10/2010-9/2013). Sociodemographic and patient reported outcomes data were abstracted from the baseline questionnaires of 122 patients who enrolled with FCG and 85 patients who enrolled without a FCG. Sociodemographic variables included age, gender, education, race, social support (MSPSS: Multidimensional Scale of Perceived Social Support, score range: 12-84), and Karnofsky Functional status. Patient reported outcomes included symptom impact (QUAL-E Symptom Impact, score range: 4-20), quality of life (QOL) (Functional Assessment of Chronic Illness Therapy-Palliative Care, score range: 0-184), depression (Center for Epidemiological Studies-Depression Scale, score range: 0-60), perceived quality of care (Patient Assessment of Chronic Illness Care, score range: 20-100), and hospital days and emergency department visits in the past 3 months. Structured tree analysis was used to identify a set of variables strongly associated with the presence or lack of a FCG. Results: In the final model, for patients with MSPSS scores <52.5 (N=12), none had a FCG. For male patients with MSPSS scores >52.5 (N=105), 73% (N=77) had a FCG. For female patients with MSPSS scores >77.5 (N=29), 69% (N=20) had a FCG. For female patients with MSPSS scores <77.5 and QOL scores >126.1 (N=25), 20% (N=5) had a FCG. For female patients with MSPSS scores <77.5, QOL scores <126, and depression scores >26 (N=10), 20% (N=2) had a FCG. For female patients with MSPSS scores <77.5, QOL scores <126, and depression scores <26 (N=26), 77% (N=20) had a FCG. Conclusions: The final model suggests that having a FCG is highly associated with having high levels of perceived social support, being male, and lower levels of depression despite having lower QOL.