bluuebunny/crossref_metadata_2025 huggingface dataset:
How do parents with advanced cancer communicate with their children? A qualitative study.
Authors: Hailey Claire Emery , Yopp Justin M , Mayer Deborah , Park Eliza M
Published: February 2017

241

Background: Parents with advanced or incurable cancer may struggle when communicating with their children about their illness. Most literature on family communication about cancer reflects the opinions of parents with early-stage cancer or the experiences of children. The life-limiting nature of incurable illness distinguishes the experiences of parents with advanced cancer. Therefore, the aim of this study was to describe how parents with advanced cancer communicated about their illness with their dependent children. Methods: We conducted semi-structured interviews with 46 patients with stage IV solid tumor malignancies who had at least one child under 18 years of age. Interviews addressed illness-related communication with children as well as other topics related to the experience of parenting with advanced cancer. Data were analyzed using thematic content analysis. Results: Parents usually sought to protect their children by limiting details about their illness or framing discussions in an optimistic manner. Age and developmental stage of children greatly influenced how parents communicated and what information was divulged. Disclosure about the life-limiting nature of their illness varied significantly. Parents identified several barriers to communication including children’s avoidance of discussion, personal difficulty accepting the terminal nature of their illness, uncertainty about prognosis, and concerns about how to communicate with their children. Despite these barriers, many parents had not received professional guidance to facilitate their communication. Conclusions: Parents with advanced cancer reported a wide diversity in motivations and techniques in discussing their illness with their children. Despite the availability of child-focused communication resources, parents identified several barriers to illness-related communication with their children. Results from this study can provide guidance for clinicians to help patients overcome these challenges and to assist parents with the difficult task of communicating with children about their illness. Future research interventions to address communication barriers may lead to improved outcomes for patients and their families.
Caregiver time burden in newly diagnosed glioblastoma: A prospective analysis.
Authors: Hemminger Lauryn , Pittman Christine , Mohile Nimish
Published: February 2017

242

Background: Caregiver (CG) burden is particularly high in glioblastoma (GBM) because neurologic deficits lead to cognitive dysfunction and physical dependence. The amount of time that CGs devote to GBM pts is not well described. The extent to which time burden impacts CG quality of life and perceived burden is unknown. Methods: We performed an IRB-approved prospective analysis of 38 CGs of pts with newly diagnosed GBM enrolled over 8 mo. at a single academic institution. CGs were defined as individuals responsible for any aspect of pt support, and multiple CGs were allowed for each pt. CGs completed the Caregiver Quality of Life in Cancer (CQOLC) survey plus questions about CG role and time dedicated to pt care within 2 mo. of initial neuro-oncology visit. We described time burden and correlated this with 3 CQOLC questions addressing CG stress, emotional well-being, and perceived burden. Results: 30/38 CGs completed the surveys. The 30 CGs (21 female) included 16 spouses, 8 children, 3 parents, 2 siblings and 1 friend. 21 were primary CGs (13 female). 21 CG spent > 40 hrs/wk with pt, 10 spent > 40 hrs/wk on direct pt care, and 7 spent > 40 work hrs/wk caring for the pt. Table 1 illustrates CG time burden stratified by primary vs non-primary CG. CG time spent on direct pt care positively correlated with CGs feeling overwhelmed by their responsibilities as assessed by the CQOLC (p < 0.0001, spearman coefficient 0.66). Amount of work hrs spent on pt care also correlated with the CG feeling overwhelmed. (p = 0.0003, spearman coefficient 0.61). Conclusions: CG time burden in GBM is substantial even at the time of diagnosis, and is most notable in primary CGs. CG time burden correlates with signs of emotional distress as measured by the CQOLC. Assessing time burden for individual CGs may help identify early risk for distress and develop interventions to improve CG quality of life. [Table: see text]
The influence of spirituality and religiosity on the personal use and practice patterns with complementary and alternative medicine (CAM): A national survey of US oncologists.
Authors: Lee Richard T. , Powers-James Catherine , Alvarez Adriana L. , Milbury Kathrin , Adan Francoise , Lopez Gabriel , Cohen Lorenzo , Delgado-Guay Marvin , Olopade Olufunmilayo I. , Curlin Farr A
Published: February 2017

248

Background: Although cancer patients frequently use CAM, it is uncertain how oncologists’ spirituality and religiosity impact their decisions to use or recommend CAM with their patients. Methods: A US probability sample of 1,000 ASCO members was contacted by mail and email to complete a survey regarding clinical approaches to herb and supplement (HS) use by cancer patients. Results: Of 927 deliverable surveys, 423 surveys were returned for a response rate of 46%. Respondents were mostly men (72%), Caucasian (76%), with a median age of 48. Approximately 16% reported no religion, 19% Jewish, 24% Catholic, 28% Christian, and 13% other religions. Eighteen percent reported attending religious services at least once a week including 15% who attend several times per week. Twenty-eight percent reported high theological pluralism (skepticism regarding whether one religion is the only true religion). Fifty-eight percent self-described themselves as very or moderately spiritual. Univariate analyses indicated significant correlations with self-reported spirituality and religious service attendance and the likelihood of personal CAM use, recommending any CAM, and recommending HS. In multivariate analyses, predictors of personal CAM use were: female gender (OR = 5.6, CI 0.09-0.37), non-Caucasian (OR = 3.0, CI 0.16-0.70), educated in HS (OR = 2.6, CI 1.37-5.08), attending religious services less than monthly (OR = 3.0, CI 0.17-0.65), and self –reported high or moderate spirituality (OR = 3.2, CI 1.5-6.6). Physician predictors for sometimes or often recommending HS were male gender (OR = 1.85, CI 0.92-3.75) and self–reported low spirituality (OR = 2.9, CI, 0.15-0.77). Recommending CAM was associated with female gender (OR = 2.6, CI 0.15-0.97), educated in HS (OR = 3.4, CI 1.46-7.78), and self–reported high or moderate spirituality (OR = 2.8, CI 1.26-6.31). No correlations were found with religious affiliation. Conclusions: This is the first study to identify self-reported spirituality as a significant factor among US oncologists’ decision to use CAM and recommend CAM to patients, and further studies are needed to explore this potential influence.
The level of soluble programmed death ligand-1 in lung cancer: An exploratory biomarker study.
Authors: Geng Rui , Pan Li , Guo Sutang , Jing Jiexian , Zhang Xu Dong , Song Xia
Published: February 2017

249

Background: A new approach to immunotherapy based on programmed death 1 (PD-1) and programmed death ligand-1 (PD-L1) pathway represents a remarkable innovation in lung cancer treatment. There is growing evidence that lung cancer cells exploit the PD-L1 to cause local immune-suppression. The aim of this prospective study was to investigate the prevalence and prognostic roles of soluble PD-L1 (sPD-L1) protein in the blood of patients with lung cancer. Methods: A total of 159 patients with lung cancer who were diagnosed by histopathology or cytopathology between July 2013 and October 2015 were enrolled. Blood samples plasma were collected at the time of diagnosis. 85 samples of healthy subjects matching in sex and age from the Health care Center of the hospital were also studied as control. The level of sPD-L1 protein in the blood was measured using an enzyme-linked immunosorbent assay (ELISA). 64 cases of patients with lung cancer who were treated with platinum based chemotherapy for 4-6 cycles were followed up. The median follow-up duration since the time of diagnosis was 18.6 months (range, 4-26.6 months). The associations between the level of sPD-L1 expression and clinicopathologic features and prognosis were statistically analyzed. Results: Expression of sPD-L1 in patients with lung cancer was significantly up-regulated compared with health people (P < 0.001). A cut-off value of 2.37ng/ml was distinguished in patients according to Receiver operating characteristic curve (ROC). The expression of sPD-L1 was associated with abdominal organ metastasis (P = 0.015). A high sPD-L1 expression had a worse prognosis than a low expression in patients (13.4 months vs 19.8 months, P = 0.001). Conclusions: Our results indicated that plasma sPD-L1 protein was elevated in patients with lung cancer and was associated with a poor prognosis. Plasma sPD-L1 protein is a potent predicting biomarker in lung cancer and may play a pivotal role in tumor immune evasion.
Perception of helpfulness of a question prompt sheet among cancer patients attending outpatient palliative care.
Authors: Arthur Joseph Anthony , Yennu Sriram , Perez Zapata Kresnier , Cantu Hilda , Liu Diane D , Wu Jimin , Bruera Eduardo
Published: February 2017

25

Background: Data on the use of question prompt sheets (QPS) in palliative care is limited. Our team previously developed a single page QPS using a Delphi process. The main objective of this study was to determine the perception of helpfulness of a QPS in patient-physician communication among advanced cancer outpatients. Methods: 104 eligible patients received the QPS for use during their first palliative care clinic. Patient and physician perceptions about the QPS were assessed at the end of the visit. Patients’ anxiety was also measured pre- and post-consultation using the Spielberger State Anxiety Inventory. Results: 100/104 (96%) patients completed the study. Among those responders, most agreed that the material was helpful in communicating with their doctor (77%), clear to understand (90%), had the right amount of information (87%), and they would use a similar material in the future (76%) and recommend it to other patients(70%). Overall, 92% were satisfied with their consultation visit. Physicians perceived that the QPS was helpful to 68% of the encounters and it did not prolong the consultation in 73% of the encounters. Physician agreement on helpfulness of the QPS was not significantly different from the patients (p = 0.3). Patient anxiety improved after consultation from a mean (SD) STAI score of 39.2 (12.8) to 33.8 (10.7), p ≤ 0.0001. Conclusions: The QPS was perceived as helpful in patient-physician communication among advanced cancer outpatients and it did not increase patient anxiety. Physicians similarly reported that the QPS was helpful and it did not prolong clinic visits. Further research is needed for its widespread adoption and integration into routine clinical practice.
Symptom burdens and coping strategies in adolescent and young adult (AYA) cancer survivors with hematologic malignancies.
Authors: Hlubocky Fay J. , Muffly Lori S. , Gomez Joseline X. , Breitenbach Kate , McNeer Jennifer Lynn , Stock Wendy , Daugherty Christopher
Published: February 2017

256

Background: Prior research reveals that AYA survivors face significant short-term and long-term physical and psychological symptom burdens (SB) as a result of disease and treatment. Yet, the prevalence of SB and their effect on AYA coping in hematologic survivors has not been described. Methods: AYA patients (15-40 years at diagnosis) of acute leukemia, aggressive non-Hodgkin lymphoma, and Hodgkin lymphoma undergoing curative intent therapy (on-treatment cohort) or 2 year completion of therapy and in remission (early survivor cohort) completed following measures: depression (CES-D), state anxiety (STAI-S), PTSD (PCL-C), HRQOL (FACIT-G), Coping (Brief COPE). Semi-structured interviews evaluated symptom burdens. Results: To date, 60 AYA subjects (26 on-treatment, 34 early survivors) were interviewed. For total population: median age at diagnosis 25y (15-40); 63% male; 58% Ca; 79% college/postgrad educated; 40% income < $75,000yr; 51% and 48% lymphoma or leukemia dx, respectively. Median time from diagnosis to interview was 13 months (1-102). In general, 56% AYA reported experiencing current physical (e.g. pain, sleep) SB and 58% AYA experienced psychological (e.g. anxiety) SB. AYA on treatment reported moderate STAI-S anxiety (35.0 ± 10.3 v 31 ± 10.2, p = 0.03); and CES-D depression (21 ± 12.1 v 10.4 ± 8.0, p = 0.01). AYA on treatment had poorer overall FACT-G health-related QOL (76.5 ± 12.8 v 82.3 ± 17.0, p = 0.02). Re coping, AYA on-treatment with depression scored highest on self-blame (5.2 ± 2.7; range: 3.5-6.8). AYA on-treatment with anxiety scored highest on denial (4.3 ± 2.1; range: 1-6). AYA in remission reported severe illness-related PTSD symptoms (58 ± 24.3 v 29.4 ± 9.5, p = 0.01). Re coping strategies, AYA in remission with PTSD scored on average significantly higher on: denial (6.5 ± 3.2; range 4.6-8.0); self-blame (6.6 ± 2.3; range: 4.2-7.9) and substance use (5.9 ± 2.1; range: 2.9-8.0). Conclusions: AYAs with hematologic malignancies report experiencing significant physical and psychological SB in the short and long-term. Early integration of palliative care targeting these SB should be incorporated into routine cancer as well as survivor care.
Coping with moderate to severe chronic graft-versus-host disease (cGVHD) among hematopoietic stem cell transplant (HCT) survivors: A qualitative analysis.
Authors: Fishman Sarah , El-Jawahri Areej , Traeger Lara , VanDusen Harry , Chen Yi-Bin Albert , Temel Jennifer S. , Driscoll Jessica
Published: February 2017

257

Background: HCT survivors with moderate to severe cGVHD experience substantial symptoms, which negatively impact their quality of life. However, data are lacking on how patients cope with their illness. We aimed to achieve a deeper understanding of patients’ illness perception and how they cope with their cGVHD. Methods: We conducted qualitative interviews with 14 HCT survivors with moderate to severe cGVHD as defined by NIH Consensus Criteria. We used a semi-structured interview guide to elicit patients’ illness perception and coping strategies. Two raters coded interviews independently. We used content analysis to identify themes. Results: Patients highlighted two key themes in their efforts to cope with what they perceived as a “full time job” dealing with their cGVHD: personal transformation and empowerment. With respect to transformation, patients expressed the importance of (1) changing the goal of care from recovery to coping with a chronic condition, and (2) seeking new sources of support and connectedness specifically from other patients and caregivers affected by cGVHD. With respect to empowerment, patients sought more information and understanding about cGVHD in order to gain more control over their symptoms and illness experiences. Patients also noted the importance of knowledge and control in coping with their disease. By seeking knowledge and a greater understanding of their disease, patients explained that they felt that they were gaining control and feeling more empowered. Through the lens of change, it is clear that all patients sought an evolution in their care perspective by increasing care motivation, creating active support webs, and seeking further involvement in their own care. Conclusions: The diagnosis and course of cGVHD is psychologically transformative for patients. Although patients demonstrated an understanding of how they cope with the psychological and physical burden, they also expressed a wish for more education, support and a method of connecting with other HCT survivors. Future interventions should focus on enhancing patients’ coping strategies, knowledge of their illness and connections with other HCT survivors.
Benefits of cover makeup for survivors.
Authors: Wakeda Takako , Heike Yuji
Published: February 2017

259

Background: Cancer therapy causes various appearance changes, such as chemotherapy-induced alopecia and skin pigmentation. These events decrease cancer survivors’ QoL (quality of life), and sometimes deprive them of social life and work opportunities. Even though wigs are commonly accessible to care hair loss, the way has not been established to care visual changes in skin. Our previous interview survey revealed that visual changes in skin depressed cancer survivors and their daily life were also interrupted, e.g., “I cannot go swimming with this wound” and “I don’t like to see anyone due to the pigmented face.” Therefore, we decided to try to adapt cover makeup technique for survivors in order to increase their QoL and recover their confident. This study was performed to examine whether “cover makeup” on the skin appearance changes could contribute to the patient with cancer’s QoL. Methods: Cover makeup was supplied for the cancer survivors, including a special cream that matched each individual’s skin color. The QoL values (Skindex-16 and visual analog scale) were compared before and 2–3 months after the first makeup instruction. The participants used cover makeup in this follow-up period freely. Results: Almost all visible changes in skin were completely concealed with cover makeup among 43 participants (breast, 23; thyroid, 11; stomach, five; leukemia, two; others, two), including only two male patients. Skindex-16 and visual analog scale values improved in all participants, regardless of the diagnosis, cause or site of skin problems. Conclusions: Using subjective scales, this study showed that cover makeup can improve patients with cancer’s QoL. Appearance changes caused by life-saving treatments tend to be dismissed but more attention should be paid to appearance care to enable patients with cancer to experience better QoL. Our results suggest that cover makeup is helpful and important for survivors’ daily living. Clinical trial information: UMIN000011652.
Is empathy associated with a derived sense of meaning among resident physicians working with patients nearing the end of life on a hematology-oncology ward?
Authors: McFarland Daniel Curtis , Komisar Jonathan
Published: February 2017

28

Background: An association between empathy and physician-in-training based meaning derived from patient deaths has not been explored previously. If meaning is associated with empathy, an intervention to enhance meaning may counteract empathy decline and promote clinician resilience. This study sought to understand if empathy might be associated with the ability to find meaning in the clinical situations that residents face in oncology. Methods: Internal Medicine residents rotating on a Hematology/Oncology ward were asked “Do you derive a sense of meaning from working with dying patients? Yes or No.” The Interpersonal-Reactivity Index (IRI) was used to measure empathy and demographic information. Results: 64 responded (66.7% response rate). 43 (67.2%) derived a sense of meaning while 21 (32.8%) did not. The ‘meaning’ group empathy score (IRI) was 60.7 (SD 10.8) and the ‘no meaning’ group empathy score (IRI) was 51.7 (SD 11.5) (p < .01). Empathy subscale differences were notable for decreased cognitive empathy via the Fantasy Score (14.0 versus 9.9) (p < .01) and decreased affective empathy via the Empathic Concern scale (18.8 versus 15.9) (p < .05). Conclusions: The majority of physicians-in-training derived a sense of meaning from working with patients at the end of life and had significantly higher levels of empathy. The ability to impart meaning-finding has been demonstrated in patients and could be taught to physicians-in-training and lead to higher empathy levels. [Table: see text]
End-of-life discussions with advanced cancer patients and their effects on bereaved families’ mental health.
Authors: Yamaguchi Takashi , Maeda Isseki , Hatano Yutaka , Mori Masanori , Shima Yasuo , Tsuneto Satoru , Kizawa Yoshiyuki , Morita Tatsuya , Yamaguchi Takuhiro , Aoyama Maho , Miyashita Mitsunori
Published: February 2017

3

Background: End-of-life (EOL) discussions are important for providing appropriate care to patients with advanced cancer at the end of their life. To explore the relationship between EOL discussions and bereaved families’ mental health, as well as the quality of the patient’s death and quality of care at the end of life. Methods: This was a nationwide questionnaire survey of bereaved families of deceased cancer patients who died at 75 sites (20 inpatient palliative care teams in acute hospitals, 33 palliative care units/inpatient hospices, and 22 outpatient clinics that provide home palliative care service) in Japan. 13,711 bereaved family members of cancer patients who died before January 2014 in each of the participating institutions were potential participants. We evaluated the prevalence and details of EOL discussions which were defined as “a discussion with physicians about the preferred place of death or resuscitation”. We also evaluated the prevalence of depression (defined as the Patient Health Questionnaire-9 ≥ 10) and complicated grief (defined as the Brief Grief Questionnaire ≥ 8) in bereaved families. Results: 9123 questionnaires returned (response rate 67%). Of those, 80.6% had EOL discussions. After propensity score weighted adjustment, bereaved families with EOL discussion less frequently developed depression (17.3% and 21.6% ; P < 0.001) and complicated grief (13.7% and 15.9% ; P = 0.03) than without. There were significant differences in the trend test among families without and in those with EOL discussions < 1, 1–3, and > 3 months before the patient’s death, for the prevalence of depression (21.6%, 20.6%, 16.8%, and 15.5%, respectively; P trend < 0.001) and complicated grief (15.9%, 16.4%, 12.8%, and 12.9%, respectively; P trend < 0.001). Conclusions: EOL discussions may contribute to decrease depression and complicated grief in bereaved families. EOL discussions should be initiated with advanced cancer patients when physicians expect a patient’s prognosis is limited to several months.
When 'home' means another nation: The power and pitfalls of repatriation at the end of life from a tertiary cancer centre.
Authors: Taylor Ros
Published: February 2017

46

Background: How people die lives on in the memory of those who survive. It is therefore pivotal for palliative teams to help craft an ending in line with patient and family goals. It has been observed in a tertiary cancer centre that there is often a spiritual imperative for patients to return to their nation of birth, once treatment is stopped and mortality accepted. Methods: Retrospective chart review of 3 patients repatriated for end of life care to their nation of birth (Romania, Portugal, Ireland), focusing on: the conversations about the goal of repatriation and its meaning to the patient; the practical barriers and enablers of repatriation of patients with advanced cancer. Follow-up interview with bereaved families to establish impact of repatriation. Results: Chart review revealed multi-layered hesitant conversations, often facilitated by the palliative care team, to establish that getting ‘home’ meant returning to the country of birth. This became an overarching pre-occupation for the patient, family and team. Patients were not concerned whether they were transferred to a hospital, hospice or family home – it was the country that mattered. There was huge anxiety and little objectivity about fitness to travel. Nurses were more anxious than doctors. Patient and family expressed least anxiety. There was a knowledge deficit regarding fitness to fly, whether an escort was needed, the respiratory and metabolic effects of flight, and how to maximize wellbeing on the journey. Reassurance was gained if the transfer was to a hospital, with greater concern if the transfer was to a community setting. Follow-up interviews with bereaved families are still in progress. Initial findings suggest no regrets in terms of the decision to fly home, and that self-esteem improved with familiarity and social connection. Conclusions: The practical anxieties of health professionals often act as delays to repatriation at the end of life. Checklists to facilitate these journeys would ensure that the process does not need to be learnt each time, and that windows of opportunity are not missed. Achievement of spiritual goals for a loved one is hugely important to those who live on.
Management of the primary site in stage IV non-small cell lung cancer: SEER analysis.
Authors: Szeja Sean , Dandapani Savita V.
Published: February 2017

52

Background: One of every three non-small cell lung cancer (NSCLC) patients is diagnosed with terminal stage IV disease. As systemic treatments have evolved, other tumor sites such as kidney have demonstrated benefits of aggressive management of the primary location and oligo-metastases. The purpose of this study is to use the SEER database to evaluate survival outcomes associated with surgery (S) and radiation treatment (RT) of the primary site in stage IV NSCLC. Methods: Eligible patient cases had lung coded as the primary location. The analysis was limited to histology of squamous cell carcinoma or adenocarcinoma, M1 staging, had recorded extent of surgery and status of radiation, were taken from years 1998-2013 and grouped from 1998-00, 01-05, 06-10, 11-2013 for temporal analysis. Kaplan-Meier was used to estimate median overall survival (MOS) and lung cancer specific survival (CSS). Results: There were 41150 patients meeting inclusion criteria with median follow up of 4 months limited by survival. Treatment was S only to 494, RT only to 20346, S+RT to 731 and neither to 19579. Of the dual modality patients, 85 had RT before S, 525 after and 121 unknown order. Node negative surgical patients undergoing lobectomy had better median OS & CSS (30 & 35 m respectively) than all other surgical categories (eg. wedge resection with 13 & 17m, pneumonectomy with 10 & 15m). Median OS & CSS decreased slightly from 5 to 3 and 6 to 4 months over the time from 2000-2013. In the subset with N0 disease, those receiving both S+RT observed an increase of median OS & SS from 11 to greater than 35 months (median not reached in 2013) while no trend was seen for other treatment strategies, which were ~5 months in 2013. Conclusions: Potential sources of confounding and bias must be regarding when interpreting our findings. These include selection of patient for aggressive treatment, both local and systemic, the latter of which this database does not describe. Our findings demonstrate that, in stage IV NSCLC, aggressive management of the primary site with surgery and radiation in patients with limited local disease such as N0 lymph nodes is associated with prolonged survival.
A whole greater than the sum of the parts: Close collaboration between palliative care and clinical ethics.
Authors: Sederstrom Nneka Obiajulu
Published: February 2017

53

Background: The disciplines of palliative care (PC) and clinical ethics (CE) share common content but also important distinctions in method, skill set, and clinical role in a given patient encounter. Particularly in cases of advance care planning, complex decision-making, and clarifying goals oncology teams may be challenged to know which consultation service to involve. Methods: Case report and commentary. Results: A 60 year-old man with a 3-year history of glioblastoma multiforme presented with sudden onset right-sided weakness and altered mental status. In the emergency department, a computed tomography (CT) scan demonstrated a left-sided intracranial bleed with concomitant cerebral edema and left-to-right midline shift. The patient was admitted to a surgical intensive care unit (SICU) where neurosurgery declined to operate. Within hours of admission, while the patient’s son (also his durable healthcare power-of-attorney) was considering a do-not-resuscitate order, local police arrived at the hospital, having received a 911 call from the patient’s daughter who claimed her brother and medical providers were attempting to murder her father by shifting to comfort care. The SICU team urgently consulted PC and CE. Within an hour, PC and CE clinicians met with the patient’s family to review the patient’s advance directive, counsel regarding clinical management strategies and prognosis, broach comfort care, introduce hospice, and liaise with a hospice case manager. Additionally, PC collaborated with the SICU to provide best symptom management; CE worked with hospital risk management and security to ethically mitigate escalation of more reactive family members. Within 4 hours of the consults, the patient was being transferred to a local inpatient hospice facility, where he died several days later. Conclusions: As this case demonstrates, models of close collaboration between PC and CE consultative services may swiftly facilitate appropriate transitions in care for patients with advanced cancer and simultaneous de-escalation of hospital risk. Evolving models for quality supportive care should further examine such strategies.
End-of-life care for glioblastoma multiforme (GBM) patients at a large academic center.
Authors: Kuchinad Kamini , Wang Xiao , Wang Jiangxia , Evans Anne , Riley W. Anthony , Smith Thomas J.
Published: February 2017

56

Background: GBM is a uniformly fatal disease with average survival of < 3 years and universal cognitive problems, making advance care planning paramount. End of life (EOL) patterns of GBM care in the US have not been studied. We examined care in a cohort of GBM and brain tumor (BT) patients as part of a program to provide individual provider feedback about EOL care. Methods: We reviewed the care of all GBM patients over 3 years with a random sample of 100, and a 5-yr subset of 45 who received their care at Gilchrist Hospice (GH), our largest provider. We queried EPIC EMR for markers of quality. We also reviewed all 452 advanced cancer pts of the Sidney Kimmel Comprehensive Cancer Center (SKCCC) referred to GH from 7/1/13 to 3/31/15 to find the median length of stay (LOS) and %LOS < 7 days for each division and each physician; 29 BT patients (most GBM) are included. Results: Few patients had documented Advance Directives or code status. Of the 100 pts, 37% were hospitalized in the last 4 weeks of life, and 17% received chemotherapy. Hospice referral and use was 76%. Of those in GH, 64% died at home with hospice and 20% died in inpatient hospice. Variability among physicians in hospice LOS was high (cv = 124.30%) ranging from 6 to 158 days with a median of 33.5 days, exceeding national averages, and 3 of 6 practitioners were below average LOS. Conclusions: In this snapshot of GBM EOL care in the US, improvements can be made in the use of advance care planning, code status, chemotherapy near death, and hospitalization rates. Hospice LOS is above national averages but varies by physician. [Table: see text]
Developing and piloting an electronic telephone triage application.
Authors: Ellis Peter G. , Carlisle Christine , Ford Colleen F. , Hartman Jan , Nikolajski Peggy , Reidmiller Carol , Rushford Justin S. , Stewart Leslie , Barry Amanda , Krebs Melinda
Published: February 2017

68

Background: Telephone triage is a vital part of today’s oncology practice and is often not standardized and measured to allow for quality improvement. UPMC CancerCenter (UPMC) has 31 outpatient clinics and is in need of a tool to streamline the current telephone triage process. UPMC and Via Oncology collaborated to develop and pilot a prototype of an electronic telephone triage application. The key components of the prototype were defined as decision support, EHR integration, reporting and workflow management. Methods: A prototype application, Symptom Manager (SM), was developed and piloted with 4 nurses at 3 outpatient clinics. Front office staff registered inbound calls in SM, which populated a phone triage queue. The nurse was prompted to enter information about the call. Decision support materials were displayed for reference, including algorithms for symptom assessment, adjudication and treatment. The output was a structured summary of the encounter that was copied to the patient’s chart. From the queue, the nurse was prompted to make outbound calls for symptom reassessment. A feedback session with nurse users and institution leadership was held following the pilot. Results: A total of 235 inbound calls were captured in the application, of which 74 (31.5%) were symptom-related. Additional data fields collected during the pilot included symptom, adjudication, time elapsed for callback, and symptom status at follow up. The ability to extract and report on data of this type was viewed as valuable for quality and process improvement. The nurse users praised SM’s ease of use, but prototype performance issues shortened the pilot. When referencing the decision support materials, nurses felt more confident consulting providers and during independent decision-making. They indicated that the standardized documentation increased efficiency. Requests for future enhancements included deeper EHR integration and additional fields for data capture. Conclusions: This prototype fulfilled the defined key components of a tool of this type. SM is currently being refined and incorporated into the Via Portal, Via Oncology’s decision support software. An update on the software and additional data captured during the pilot will be provided at presentation.
Feasibility of a physician-extender approach to increase advance care planning uptake.
Authors: Siegel Scott D , Fanning Cynthia
Published: February 2017

8

Background: Advanced care planning (ACP) for people with life-limiting cancer has been associated with improved patient quality of life and care more consistent with patient wishes. Nevertheless, even though approximately 70% of patients with a life-limiting illness will require the substituted judgment of a proxy, fewer than 25% of patients have documented goals of care. This poor uptake has been attributed to limits in physician time and ACP training. The current study evaluated the feasibility of utilizing a physician-extender trained in ACP best practices to overcome these barriers and improve ACP uptake. Methods: Patients who met criteria for a life-limiting cancer diagnosis were identified by support staff in Medical Oncology offices and the Emergency Department (ED) in a large North East community health care system. Pending physician approval, a Licensed Clinical Social Worker (LCSW) with training and experience in ACP was available to provide support and assistance to patients, which included but was not limited to ACP. The LCSW initially met patients in clinic and subsequently in whatever way was most convenient for the patient (at future appointments, by phone, inpatient, or at the patient’s home). The program was approved by the Medical Oncology section and the Emergency Department. Results: ACP uptake, calculated as the percentage of eligible patients who participated in the program, was 14.6% in the Medical Oncology practices (60/140) and 44.6% (41/92) in the ED. The difference in uptake between the two sites was significant, χ2(1, N = 502) = 41.88, p < .01, and was primarily the result of Medical Oncologists determining that ACP was not appropriate for a subset of eligible patients. Conclusions: The results of this feasibility evaluation suggest that limits in time and ACP training are not the primary barriers to ACP uptake in oncology. Instead, the type of physician and setting proved to be important correlates of uptake. We consider the implications of these findings and identify next steps to better understand the factors that influence physician participation in ACP.
Patient-reported distress in adults with myelodysplastic syndromes (MDS).
Authors: Troy Jesse D , deCastro Carlos , Pupa Mary Ruth , Samsa Greg P. , Abernethy Amy Pickar , LeBlanc Thomas William
Published: February 2017

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Background: MDS are hematopoietic malignancies that are incurable in most patients. The National Comprehensive Cancer Network (NCCN) defines distress as an unpleasant emotional experience associated with the psychosocial complications of cancer that may interfere with quality of life. Distress is not well described in MDS and may be useful to screen for palliative care needs. Methods: We conducted a retrospective review of distress in ambulatory adult MDS patients visiting our clinics from July 2013 to September 2015. We abstracted demographic, diagnostic, and comorbidity data from records along with the 10-point ordinal NCCN Distress Thermometer (DT) and its 39-item Problem List (PL). NCCN guidelines suggest DT scores ≥ 4 be evaluated for referral to psychosocial resources. Results: We included 119 patients (median age = 68, range = 30-88 years; 73.9% White; 67.2% male; 29.4% with prior cancer). Half were low-risk and 5 progressed to AML. Twenty-three (19.3%) had ≥ 1 hospitalization and 10.9% had > = 1 emergency department visit. Ten patients died; 1 was referred to counseling and 1 used hospice. Three others were referred to counseling and no patients had a palliative care consult. There were 366 DT (median distress = 1, range = 0-10) across 580 visits and 106 patients (median = 2 DT/patient, range = 1-16). Fifty-two patients had at least 1 DT ≥ 4 and 19 had 2 or more DT ≥ 4. With patients classified by their maximum DT (median = 3, interquartile range = 1-7) ever-use of therapy (hypomethylating agents/lenalidomide/growth factors/transfusions/chelation) was associated with greater maximum DT (median = 4, range = 0-10, N = 73) compared with no therapy (median = 2, range = 0-9, N = 33; P = 0.03, 2-sample Wilcoxon test). Ninety-five patients reported 1,335 problems during 22,846 person-days of follow-up (median = 4 problems/patient/visit, range = 1-23). The 5 most frequent problems were fatigue (176 times; 76 patients), pain (92 times; 44 patients), worry (77 times; 43 patients), sleep (75 times; 39 patients), and tingling hands/feet (68 times; 33 patients). Conclusions: MDS patients experience frequent and substantial distress yet referrals to counseling and use of palliative care are rare. These findings point to unmet palliative care needs in MDS.
Relationship between pain and depression among patients with cancer at a community teaching hospital.
Authors: Goldberg Uri , Safarpour Damoun , Aung Khin N. , Pasco Neil , Levron Benjamin , Fung Amy , Kalantary Atefah , Hernandez Mario , Cary Byron , Khillan Ratesh , Panigrahi Kalpana , Kalavar Madhumati R.
Published: February 2017

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Background: While depression is often under-diagnosed in the general population, the rate of under-diagnosis among patients with cancer may be far higher. The American Cancer Society reports that a quarter of all patients with cancer may suffer from depression. We seek to identify a link between pain and depression among patients with cancer which may signal an enhanced need both for the involvement of mental health services and for more effective pain management. Methods: This is an observational cross-sectional study evaluating depression among patients with cancer in an outpatient setting. From June of 2015 to January of 2016, 29 patients from our institution’s affiliated cancer clinics were interviewed by study staff members about their pain and various other cancer-related concerns. Subjects were also administered the depression screening tool Patient Health Questionnaire 9 (PHQ-9). Data was collected and analyzed using Spearman’s rho. Results: The inclusion criteria included a confirmed cancer diagnosis and willingness to participate in a clinical study. There were no exclusion criteria. Age ranged from 43 to 87 and women comprised 75% of participants. Of the 18 patients who complained of pain (62.1% of the total), 14 reported pain of at least 7 of 10 in severity (77.8%). Severity of pain was found to correlate positively with the questions of “Poor appetite or overeating” as well as “Moving or speaking so slowly...Or the opposite — being so fidgety or restless...” (R = 0.41, P = 0.03; R = 0.40, P = 0.03, respectively). Presence of pain likewise correlated positively with the latter question (R = 0.46, P = 0.01). Conclusions: The effects of depression on patients with cancer may contribute to life-shortening complications related to reduced compliance with treatment and lifestyle modifications, as well as the exacerbation of heart disease and other comorbid conditions. Our findings demonstrate that pain, particularly severe pain, may signal an elevated risk of depression and call for the swift involvement of mental health services. Likewise, the high proportion of patients complaining of pain in general and severe pain in particular suggests a need for more aggressive pain management among patients with cancer within our cohort.
Integrative oncology consultation and symptom palliation: Analysis of patient-reported outcomes at a comprehensive cancer center.
Authors: Lopez Gabriel , McQuade Jennifer Leigh , Lee Richard T. , Williams Jane , Spelman Amy , Fellman Bryan , Li Yisheng , Bruera Eduardo , Cohen Lorenzo
Published: February 2017

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Background: Patients (pts) receiving cancer care are increasingly interested in complementary health approaches to improve symptoms and quality of life. We report on demographics and patient reported outcomes in an integrative oncology (IO) clinic. Methods: Pts presenting for IO consultation or follow-up completed: Measure Yourself Concerns and Wellbeing (MYCaW), Edmonton Symptom Assessment Scale (ESAS), Short Form 12 (SF-12) quality of life (QOL) scale, and an overall satisfaction questionnaire. Consultations were provided by medical oncologists. Results: 2,474 consultations were conducted from 9/2009 to 12/2013; 26.0% (n = 643) had ≥ 1 follow-up visit (mean 3.2; SD1.8). Most were female (69%) and white (75%); most frequent cancer types was breast (29%); 29% of pts had advanced disease. At baseline, ESAS scores were highest for Sleep (4.2; SD 2.8), Fatigue (4.0; SD 2.8), Well-Being (3.8 SD 2.6) and Anxiety (3.1; SD 2.9). Those with advanced disease had significantly higher baseline ESAS scores for pain, nausea, shortness of breath, and appetite; higher ESAS subscale scores for physical and global distress; lower SF-12 physical health scores; and were more interested in developing an integrative/holistic approach and appetite. Those with loco-regional disease were more interested in overall health, hot flashes, and dry mouth. For ESAS baseline scores ≥ 4 and follow up within 30 days of the initial consult, we observed overall improvement in ESAS symptoms (38-60% of pts with ESAS decrease ≥ 1). Overall satisfaction was high at both initial encounter (9.4; SD 1.3) and first follow up (9.5; SD 1.2). Patients were satisfied to very satisfied with how well MYCaW concern 1 and 2 were addressed: 8.0 (SD 2.2) and 9.1 (SD 1.8). No difference in overall satisfaction was observed comparing those with advanced vs loco-regional disease. Conclusions: Most pts presenting for integrative oncology consultation have early stage disease, relatively low symptom burden, and are most interested in support for overall health. Patients were overall very satisfied with how well their top concerns were addressed, with significant improvements in symptom distress.
Are patients with cancer concerned about burdening their families?
Authors: Kaur Sukhi , Choi Kelly , Pe Benito Ruth , DeVincenzo Victoria , Sassano Emily , Gruman Brooke , DeMarco Katherine , Contreras Jose , Tanenbaum Kathryn , Covington Jennifer , Paramanathan Dhakshila , Goldberg Stuart L.
Published: February 2017

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Background: A diagnosis of advanced cancer frequently thrusts family members into the role of caregiver. Although caregiver burdens have been well documented, less is known about the level of concern borne by the patient (pt) with cancer in placing a family member in this role, known as self-perceived burden (SPB). Methods: As part of the larger “Living with Cancer” project we prospectively surveyed 1307 pts with advanced malignancies receiving treatment with non-curative intent at 17 New Jersey cancer programs within the Regional Cancer Care Associates network between Sept 2015 and Apr 2016. Pts were asked one question about SPB on family members (5-level Likert scale). Results: Pts felt that “Living with Cancer burdens my family” all day every day 68 pts (5%), part of each day 109 pts (8%), most days 136 pts (10%), occasionally 571 pts (44%) or not at all 423 pts (32%). Twenty-four percent of responses were flagged as concerned (rated most days or greater by 313 pts). In a logistic regression model, SPB was correlated with marital status (married and divorced more concerned than single) and younger age (both p < 0.05). Patients living in lower median income neighborhoods also appeared to have a higher frequency of concern (p < 0.1) Factors not correlating with the level of SPB included gender, race, solid vs liquid tumor type, and length of cancer diagnosis. SPB was also not influenced by DNR status, having developed a Living Will, or documentation of power of attorney. Distance from the pt’s home to the cancer center was not associated with SPB on the caregiver. For comparison, on the same LWC project 38% of pts with advanced cancer were concerned about the financial toxicity of their care and 33% were concerned about pain (both p < 0.01 compared to SPB). Conclusions: Self-perceived burden on a caregiver was identified in 24% of pts with advanced cancer, less than those concerned about financial toxicity or pain, in this NJ series. Divorced/married pts and younger pts with cancer are more likely to express concern. Developing an EOLC plan (DNR/Living will/POA) does not appear to influence SPB concerns.
Earlier access to palliative medicine: An experience of integration into a community oncology practice.
Authors: Burcham Sandra , Matthews Jacqueline
Published: February 2017

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Background: A growing body of evidence supports the integration of palliative care as a standard for comprehensive cancer care. Through our experience as an inpatient palliative care provider, with 50% of our population having advanced cancer, we recognized the value proposition to provide continuity in the outpatient setting. Innovative Care Solutions developed a partnership with a large, community oncology program late 2015 for a palliative care multidisciplinary team to be embedded into one location of their practice. Methods: A full-time palliative licensed independent social worker (LISW) was dedicated to educate and engage screening process development. Utilizing the NCCN Distress Thermometer, referrals for care provision were then directed by the LISW to the most appropriate palliative care provider. The LISW addressed communication, goals of care discussions and advance directives. Identification of symptoms, including high level distress or mental health needs, were scheduled to see the palliative physician or advanced practice nurse, available two half days per week within the cancer center. Results: In the first quarter of service, the LISW screened a total of 85 patients, with 54 requiring PC interventions. Complex symptom needs were identified in seventeen percent, thirty percent were seen for psychosocial needs, and twenty percent were seen for completion of an advance directive. Thirty-six percent were seen for medical decision making. Conclusions: Integrating palliative care services in a community-based oncology practice has realized numerous positive patient outcomes and opportunities for further design. Using an evidenced based screening tool, identification of needs in an early access model appear to enable the patient to improve adherence to the medical plan care and avoid ER utilization. Symptom management has shown improved quality of life scores and PPS, and patient’s seen for psychosocial needs are able to explore aspects of person, as opposed to illness, that has improved overall well-being. Further program design will focus on integration of screening for all patients with advanced solid tumor, recurrent/refractory, and formalization of quality data tracking benchmarked to a web-based registry.