bluuebunny/crossref_metadata_2025_split huggingface dataset:
Distress management in advanced gastrointestinal cancer patients.
Authors: King Anna M. , Estrada Cynthia , Marcusen Carol P. , Glaser Susan , Dorff Tanya B. , Barzi Afsaneh 
Published: February 2017

221 Background: Living with advanced-stage gastrointestinal cancer is a life-altering experience; patients (pts) have pain, fatigue, eating difficulties in addition to their financial challenges and spiritual crisis. As a result, high rates of distress are commonly reported in this population. The aim of this pilot study was to develop a collaborative model for psychosocial assessment and intervention to improve patient quality of life and reduce perceived distress. Methods: The Improving Mood – Promoting Access to Collaborative Treatment (IMPACT) model was utilized to address distress in these pts. Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder Screen (GAD-7), European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ C30) were utilized by nurses to screen and flag pts who are experiencing distress. Follow-ups included PHQ-9 and GAD-7 at 2, 6, and 10 weeks and EORTC-QLQ C30 at 10 weeks. Interventions include brief-therapy, education and resource coordination by a social worker, and psychotropic medication prescribed by an oncologist. Results: Between November of 2014 and May of 2015, 65 pts were screened; 15 screened positive and 7 of them were initiated with services, while the remaining 8 declined intervention. The majority of pts who declined were male. Of the 9 receiving intervention, 2 screened negative but provided verbal endorsement of distress. Also, 3 pts receiving intervention were discharged home on hospice and expired before 10 weeks. Three pts reached the 10 weeks time point and of those, one patient reached a 50% reduction in PHQ-9 score by 10-weeks. Each patient required an average 4 hours of staff time for delivery of referral to services and psychotherapy. Conclusions: This model of care can be delivered with a moderate amount of staffing. Though, over a 7 month period, data collected from pts did not suggest a significant decrease in distress. Many pts were found to be consumed by intersecting elements such as other medical concerns, financial stressors and low priority of depression management. Also, disease course impacted accurate measurement of distress. It is suggested for future intervention with oncology pts to control for these factors.
The well-being of adult children while caring for a parent in home hospice: Evaluation of an automated remote monitoring and coaching system.
Authors: Mooney Kathi , Berry Patricia , Blaz Jacquee , Donaldson Gary 
Published: February 2017

222 Background: Health and well-being often deteriorates for family caregivers providing home hospice care. This includes adult children managing multiple demands while supporting their parent to remain at home. Automated remote monitoring of patient symptoms has shown promise in home cancer care and could be extended for monitoring and supporting the wellbeing of adult child caregivers (ACC) providing care to their parent at home. Methods: In a RCT, 97 ACCs were monitored using a telephone based automated reporting and coaching system, and randomly assigned to the ACC care intervention (Rx) (N = 51) or usual care (UC) (N = 46). All ACCs were asked to call the system daily reporting presence and severity (0-10 scale) of their own fatigue, poor sleep, depressed mood, anxiety and interference with normal activities. The Rx ACCs received automated tailored coaching based on reported patterns of moderate to severe symptom levels and alert reports were also sent to their hospice nurse. Results: ACCs were females (78%) with a mean age of 51. There were no differences between groups on any demographic or baseline measures. Utilizing negative binomial modeling, Rx ACCs had significantly fewer days/week of moderate-severe symptoms overall (.6 vs 2.4, p < .001) and for each individual symptom (all p < .001). Among those attempting to maintain work, Rx ACCs were able to work 80% of work days and UC ACCs worked 68% of work days. Six weeks after their parent’s death, there was a statistical trend (p = .07) for Rx ACCs to be less depressed than UC ACCs (11.94 vs 18.04). This is a clinically significant finding as UC ACCs’ CESD scores were at the clinically actionable level ( > 16) for referral for evaluation of depression. Rx ACCs’ CESD scores had dropped an average of 1.37 points below their baseline whereas UC ACCs’ scores had increased an average of 3.86 points from baseline at 6 weeks post death. Conclusions: Automated remote monitoring and coaching for adult child family caregivers offers impressive benefit in reducing the physical burden and psychosocial distress of caregiving during and after parental hospice care. Clinical trial information: NCT02112461.
Clergy religious beliefs and ICU utilization at the end of life.
Authors: Balboni Michael , Sullivan Adam , Quinones Rebecca , Vanderweele Tyler J. , Balboni Tracy A. 
Published: February 2017

223 Background: High religious community spiritual support is associated with greater aggressive interventions at the end of life (EOL). At EOL, half of U.S. patients are visited by clergy. The relationship of clergy religious beliefs about EOL care to dying congregants’ EOL medical decisions is unknown. Methods: This is an NCI-funded study of 1,665 U.S. clergy randomly-selected from a comprehensive database of 368,408 U.S. congregations and administered a survey 8/2014-2/2015; 1,005 responded (60%). Clergy reported endorsement of religious beliefs about congregants’ EOL care (RBEC), including miracles, sanctity of life, divine sovereignty, and redemptive suffering. Clergy reported on their last experience in spiritual caregiving to a dying congregant, including congregant’s care location in the final week. The primary outcome was any ICU care in the final week of life. Multivariable analyses (MVA), controlling for clergy age, gender, race, region, and congregational income, assessed the relationship of clergy RBEC to any congregant ICU care in the last week. Results: Most (86%) clergy affirmed belief in a miraculous cure; 54% agreed that the congregant should accept every medical treatment out of religious obligations. A minority of clergy affirmed that belief in divine sovereignty relieved congregants of future medical decisions (28%) and that they should endure medical procedures because suffering is God’s test (27%). In MVA, higher RBEC scores were associated with a greater likelihood of any ICU utilization in the last week (AOR=1.28, p=.02), with belief in divine sovereignty being the strongest predictor (AOR 2.1, p=.005). Predictors of having greater RBEC scores included being Hispanic (AOR=3.35, p<.001) or black (AOR=3.0, p<.001), as compared to white, and being Pentecostal (AOR=3.54, p<.001) or Evangelical (AOR=2.12, p<.001) as compared to clergy self-identified as liberal. Conclusions: A majority of clergy endorse religious beliefs regarding their dying congregants’ EOL medical care; these beliefs are associated with greater ICU care in the final days of life for congregants. Future research is needed to determine religiously-consistent approaches to clergy EOL education to mitigate aggressive interventions at the EOL.
Effect of training on the self-efficacy of informal caregivers of colorectal cancer patients.
Authors: Havyer Rachel D. , van Ryn Michelle , Wilson Patrick , Griffin Joan M. 
Published: February 2017

226 Background: Patients undergoing cancer treatment often need support from an informal caregiver to help manage symptoms. Self-efficacy (SE) in caregiving refers to confidence in being able to care for the patient’s needs. Low SE has been associated with increased caregiver burden and mental health symptoms, which in turn, can affect the quality of informal care provided. The objective of this study was to examine the relationship between caregiver training received from cancer care providers and SE in caregivers of patients with colorectal cancer (CRC). Methods: Caregivers of CRC patients diagnosed in 2009 were invited to complete a self-administered questionnaire. Caregivers were asked about specific patient problems (pain, bowel, fatigue, medications, and other). Caregiver perceptions of training adequacy and SE were assessed on a problem specific basis. The patient’s stage of disease was obtained from cancer registry data. Associations between training and SE were examined for each problem using multivariate logistic regression and adjusted for age, relationship to patient, race, care burden, level of education, stage of disease, perception of patient’s health, and general confidence as a caregiver. Results: 417 caregivers completed the survey (70% response rate), of whom 374 (90%) were female and 284 (68%) were the patient’s spouse/partner. The number of caregivers reporting inadequate training for CRC-related problems were pain 77 (38%), bowel 80 (38%), fatigue 121 (48%), medication 65 (26%), and other 101 (40%). The odds of having low SE were significantly higher among those with perceptions of inadequate training across the following CRC-related problems: pain, 10.10 (3.36, 30.39); bowel, 5.04 (1.98, 12.82); fatigue, 8.45 (3.22, 22.15); managing medications, 9.00 (3.30, 24.51); and other, 3.87 (1.68, 8.93). Conclusions: This study showed a significant association between caregiver training and SE in a cross-sectional study. Given that the perception of inadequate training among caregivers was common, further exploration of the longitudinal impact of training on caregiver SE should be done to identify interventions to help improve the experience of cancer caregivers.
Caregiver symptom burden assessment using the Edmonton Symptom Assessment System (ESAS): A preliminary report.
Authors: Tanco Kimberson , Vidal Marieberta , Arthur Joseph Anthony , Hui David , Chisholm Gary B. , Bruera Eduardo 
Published: February 2017

227 Background: Regular assessment of caregiver symptom burden during patient visits would allow prompt referral for their care. The ESAS is a multidimensional tool used in patients but not caregivers. The objectives of this study were to determine the feasibility of the ESAS in assessing caregiver symptoms defined as completing 9/12 items, assess caregiver-reported usefulness of its completion, determine the association of symptom scores between patients, caregivers and various clinical and psychosocial factors, and determine concurrent validity with the Zarit Burden Interview-12 (ZBI-12). Methods: A prospective study of 90 patient-primary caregiver dyads in an outpatient Supportive Care Center in a cancer center was conducted. The 12 item ESAS-FS was completed by the dyads with other measures of clinical and psychosocial factors [demographics, cancer diagnosis, co-morbidities, caregiving activities, prognostic index and patient’s performance status]. Results: The ESAS is a feasible tool to assess caregiver symptom burden with 90/90 caregivers [100%] completing at least 9/12 items; 66/90 caregivers [73%] found ESAS useful to report their symptom burden. A significant association was found between ESAS scores of caregivers and patients in depression [p < 0.01], psychosocial items [depression, anxiety, well-being, financial distress, spiritual pain; p < 0.01], and total symptom distress scores [p < 0.01]. Caregiver employment status [p = 0.03] and total caregiver activities [p = 0.04] were significantly associated with total caregiver ESAS scores. There was no significant association between patient and caregiver co-morbidities [p = 0.08], prognostic index [0.07] and performance status [p = 0.26] to total caregiver ESAS scores. Caregivers recommended certain physical symptoms such as pain and nausea may be eliminated. Concurrent validity with ZBI-12 was not achieved [r = 0.53, p = 0.74] suggesting that ESAS measured different caregiver dimensions. Conclusions: The ESAS is a feasible tool to measure caregiver symptoms and was found useful by caregivers. Further research is needed to modify the ESAS based on caregiver’s recommendations and further psychometric studies need to be conducted.
Distress themes encoded in narratives of the “last day”: A study among surviving caregivers.
Authors: Walsh Elizabeth Paige , Riessman Catherine , Mathew Paul 
Published: February 2017

23 Background: Survey studies have determined the prevalence of dissatisfaction among survivor caregivers related to end of life care. Toward improvement in care at EOL, we hypothesized that novel themes of distress would be identified in narratives of the “last day” from the recently bereaved. Methods: Extended narrative accounts of patients’ last day of life were collected from adult, English-speaking, caregivers (n=5) present at the death of a cancer patient. Interviews (45-120 minutes) featured open-ended questions prompting the subject to share an account of the last day, their care and coping experience. Interviews were conducted and transcribed by the author and analyzed thematically. Results: A theme of distressed communication with health care providers [HCP] could be identified in narrative segments in all 5 interviews, linked to transitions such as changes in treatment or clinical status. Narrative fragments exemplary of distress arising from communication are presented. I. A pain crisis so severe “she asked God to take her.” “I am ready to call the nurse practitioner…and she wouldn’t allow it... She doesn’t want to be a burden.” II. “I said, I don’t want you telling him directly anything. I want you to tell me first so we can go in together and tell him…the right way” including an option to “spend time together.” Soon after, the physician “came rushing into the room and as if we’d never had the conversation…, OK, we’re going to take you to the ICU.” III. “I had asked the nurse…to make sure that she had her clothes on when the funeral parlor came.” It was “important to me for her dignity.” The nurse responded: “they just cut the clothes off anyhow.” IV. “Now you’re going to pull chemo out of your hat? Look at him!...He doesn’t want to leave us but he’s ready to go.” “After we said no to chemo, [his doctor] never came near S again.” Conclusions: This pilot study of last day narratives obtained from surviving caregivers points toward a high prevalence of distress content relating to impaired communication with HCP with consequences including uncontrolled pain, conflict, perceived loss of dignity and abandonment. These data indicate the need for larger-scale studies focused on the content and style of bidirectional communication at the EOL.
Cancer-related communications and symptom burden in couples coping with advanced lung cancer.
Authors: Milbury Kathrin , Lopez Gabriel , Tsao Anne S. , Bruera Eduardo 
Published: February 2017

231 Background: Although effective communications regarding symptoms may decrease distress and patients and their spouses, families tend to experience barriers to open communication. The purpose of this cross-sectional survey study is to examine the role of cancer-related communications in symptom burden in families coping with advanced non-small cell lung cancer. Methods: Couples were approached while waiting for their routine visit at the thoracic center. 25 patients (58% female; 78% white; mean age: 62.7 years; 72% stage III; 2.3 months post diagnosis) and their spouses completed measures of cancer symptoms (ESAS), psychological distress (BSI), and illness communication (CCAT_PF). Results: Dyadic analyses using multi-level modeling revealed that patients generally rated their own symptom burden significantly lower compared to spouses rating patient symptoms (P < .0001). However, this discrepancy in perceptions of symptoms was a function of cancer communication (P < .001) so that the more couples communicate about cancer-related issues (e.g., treatment decision making) the more they agreed regarding symptom burden. Importantly, a discrepancy in symptoms ratings was significantly related to spouses’ depressive symptoms (P < . 01) so that the greater the discrepancy, the greater spouses depression. Lastly, more effective cancer communication was related to lower cancer symptoms in patients (P < .05) as well as depression (P < .01) and anxiety (P < .05) in both patients and spouses. Conclusions: These findings highlight the importance of effective cancer communication in reducing symptom burden in couples coping with advanced lung cancer. Behavioral interventions that target communication skills taining may improve symptom management in patients and reduce psychological distress in spouses.
Assessment of distress among breast cancer survivors following primary treatment.
Authors: Neerukonda Anu Radha , Messina Catherine , Reagan Lisa , Stevens Michelle M. , Nemesure Barbara 
Published: February 2017

240 Background: Although elevated levels of distress have been well documented among cancer patients receiving active treatment, the magnitude of and contributors to distress in cancer survivors are yet to be well established. The purpose of this investigation was to evaluate the presence of distress among breast cancer survivors (BCS) and to investigate demographic, psychosocial, tumor and treatment related variables that may be associated with distress in this population. Methods: A retrospective chart review was done that includes 81 female BCS, 21 years or older, who received care at the Stony Brook Cancer Center Survivorship Clinic and completed the National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT) form between October 2012 and June 2014. Descriptive statistics were used to describe the demographic, psychosocial, tumor and treatment characteristics for the study sample and logistic regression models were used to evaluate the relationship between elevated distress and the factors outlined above. The regression results are presented as odds ratios (ORs) and 95% confidence intervals (CIs). Data were analyzed using SPSS version 21. Results: Approximately one-half of BCS (50.6%) reported a clinically significant distress level (4 or higher). Those who were on an anxiolytic or anti-depressant medication tended to have higher levels of distress (OR: 3.10; 95% CI: 0.90-10.74; P = 0.07) and age greater than 60 years at the time of diagnosis was negatively correlated with distress (OR: 0.24; 95% CI: 0.07-0.84; P = 0.03). BCS with clinically significant distress (4 or greater) reported more problems in the emotional domain components of the DT, whereas patients with low distress (less than 4) reported more problems on the physical domains. Conclusions: Findings from this study indicate that more than half of BCS experienced distress during the survivorship phase, which frequently manifested as emotional and physical problems. Although preliminary, these data suggest the need to develop targeted screening strategies for early recognition and interventions to alleviate distress in this population.
Prospective study to evaluate impact of support group participation in women with gynecological cancer.
Authors: Garrick Andrea , Pyrzak Adam , Campbell Jeff , Rungruang Bunja Jane , Sadek Ramses F. , Ghamande Sharad A. 
Published: February 2017

243 Background: Unlike breast cancer support group literature, there is no data in women with gynecologic cancers who have different perspective about their disease and therapy. We have a well-established (10 years old) active grass root level support group unique to women with gynecologic cancers that meets monthly. Our goal was to investigate perceived benefits of support group participation. Methods: We developed a prospective questionnaire to evaluate the CSRA Gynecologic Oncology Support Group (CGOSG) participant’s perceived effects of attending the group on their side effects and disease status. The questionnaire was distributed to patients attending CGOSG meetings over a 4 month period. 47 surveys were collected for analysis; Wilcox rank sum test was used as appropriate. Results: The common cancers were 52% ovarian, 26% endometrial and 62% were currently on therapy. The 3 top reasons that patients attended CGOSG were physician driven (28%), to meet other women with the same diagnosis (26%) and to learn more about their cancer (22%). The top 3 expectations of patients were emotional support (28%), bonding/companionship (21%), and cancer education (14%). The top 3 concerning physical side effects from their cancer or therapy were fatigue (21%), memory loss (14%), and peripheral neuropathy (14%). Patients with more than 5 visits reported that CGOSG participation improved their most concerning physical side effect (fatigue) with a median score of 7.5 ± 4 out of 10. The top 3 concerning emotional side effects identified were fear of recurrence (26%), living with uncertainty (20%) and defining a new sense of normal (15%). Patients reported the CGOSG improved their most concerning emotional side effect (fear of recurrence) with a median score of 9 ± 2 out of 10. Patients with more than one visit, not on treatment reported a higher quality of life score (p = 0.001) and perceived a positive impact on cancer therapy (p = 0.02) compared to patients on treatment. Conclusions: This is a first of a kind attempt to understand the impact of a well-organized support group on women with gynecological cancers which indicates that these women struggle with fear of recurrence and uncertainty, but are able to find some solace.
Housestaff perspectives on end-of-life training during medical school and residency.
Authors: Schmit Jessica Marie , Meyer Lynne , Duff Jennifer Michelle , Close Julia Lee 
Published: February 2017

27 Background: Participating in end-of-life discussions and delivering bad news is integral to oncology practice. Poor communication skills can negatively impact a patient’s understanding and acceptance of their disease process, increase their anxiety, and lead to anger and depression. Hematology/Oncology fellowship training (HOFT) programs may assume incoming fellows are capable of doing this well. A study by Hebert et al. revealed 37% of HOFT programs provide little to no formal training in this area. Our study sought to assess housestaff preparedness and comfort with end-of-life (EOL) discussions. Methods: An email survey was sent to 787 residents and fellows at a single institution in February 2015. Housestaff were queried as to extent of training, experience, supervision and comfort with EOL communication in both medical school and residency. Results: 176 surveys (22.4 %) were returned.During Medical School: Many housestaff (55.1%) reported “little” to “no” classroom training on EOL discussions. Most, 85.1%, reported having five or fewer EOL discussions. Most encounters (78.6%) were supervised by an attending or resident. Only 45.5% felt “somewhat” to “fully prepared” to have EOL discussions when graduating medical school. During Residency: Housestaff reported even less classroom training on EOL discussions: 88.2% reported “little” to “no training”. EOL discussions were more common: 51% reported more than 10 EOL conversations with patients. The level of supervision decreased: only 38.6% reported encounters were mostly supervised. Most housestaff (75%) feel comfortable with having EOL discussions at their current level of training. Conclusions: Despite increased awareness regarding the importance of EOL discussion education, it remains an area that a significant number of medical students and housestaff receive little to no training. EOL discussions by housestaff are frequently unsupervised, reducing opportunities for improvement via feedback. Competence in delivering bad news is an important skill for hematologists/oncologists. Our findings support the previously published perception of HOFT program directors that additional training and resources in delivering bad news is needed.