bluuebunny/crossref_metadata_2025_split huggingface dataset:
Oncology nurse perspectives on the nature and meaning of their positive relationships with seriously ill patients.
Authors: Wright Emily M. , Carr Alaina , Cashavelly Barbara J. , Pirl William F. , Traeger Lara 
Published: November 2017

42 Background: Inpatient oncology nurses regularly care for patients at or near the end of life. Given increasing attention to risk of compassion fatigue in this setting, we conducted a qualitative study to explore nurses’ perspectives on the nature and meaning of their positive relationships with patients who were seriously ill or dying. Methods: We conducted in-depth interviews with 24 registered nurses (RN)s working on an inpatient medical oncology unit at an academic medical center. We used a semi-structured interview guide to elicit RNs’ descriptions of ‘good’ relationships they had with patients/families with attention to aspects that made these relationships meaningful. Using a framework approach, including an iterative coding process, two team members independently coded all interview data (Kappa = .80) and worked with a multidisciplinary team to identify themes. Results: RNs (95.8% female; 95.8% non-Hispanic white, M age = 32.7 yrs [SD = 10.8 yrs], median yrs as RN = 4.0 [range: 1.5-35.0 yrs]) described specific cases in which they felt they had developed ‘good’ relationships with patients and families. RN descriptions centered on highly intimate and transformative moments in patient/family care. These unique moments occurred in the context of longitudinal nurse-patient relationships in which RNs felt able to 1) facilitate patient/family processing of emotions and disclosure of treatment preferences that they otherwise were not able to process or disclose to other loved ones or clinicians; 2) provide highly-skilled patient-centered care to reduce patient suffering; and/or 3) facilitate patient/family prognostic understanding and peace at the end of life. RNs felt privileged to serve these roles. Memorable transformative moments enriched RNs’ professional identities and inspired their continued work. Conclusions: Inpatient oncology nurse-patient relationships serve distinctive functions for both patient-centered care and RN well being. Results underscore the importance of assisting RNs in managing patient symptoms, forming longitudinal relationships with patients/families, and coping with factors that impede ‘good’ relationships.
Four Conversations: A randomized control trial of an online, shared decision making curriculum among the metastatic breast cancer community.
Authors: Smith Sophia Kustas , Westbrook Kelly E. , MacDermott Kristin , LeBlanc Matthew Roger , Amarasekara Sathya , Pan Wei 
Published: November 2017

47 Background: Evidence shows that shared decision making is effective in improving the quality of end of life care, and that it rarely happens; new interventions are needed. Four Conversations is an evidence-based, online curriculum that facilitates shared decision making. This presentation will report the impact of Four Conversations on key outcomes. Methods: Individuals with metastatic breast cancer and caregivers are being recruited nationally. Consenting participants are randomized 1:1 to the treatment or wait-listed control arm. Treatment arm participants access content online; required activities included viewing interactive videos and completing workbook activities. Surveys are administered at Baseline, Week-4, and Week-8 via REDCap to assess for: decision making self-efficacy and conflict; and program satisfaction. An independent-samples t-test was conducted to compare change in decision making outcomes in treatment and usual care conditions at Week-4. A paired-samples t-test was used to access for changes in outcomes from Baseline to Week-8 among the treatment arm. Results: Participants (n = 138) were: mean age 53.2 (11.8) years; 96% female; 91% white; 72% married. There was significant improvement in decision making self-efficacy and reduction in conflict among the treatment arm at follow-up (p < .05). There was no significant change in decision making self-efficacy and conflict scores for treatment and wait-listed control conditions at the end of the intervention (p > .05). Among treatment arm participants who did not already have an advanced care directive, most (56%) completed one. Most participants (88%) would recommend Four Conversations to others and felt that the program better prepared them to make better decisions. Conclusions: While these results are preliminary (i.e., data collection continues through 9/2017), they suggest that Four Conversations may effect decision-making outcomes for metastatic breast cancer patients and caregivers. Additional research is recommended with larger and more diverse samples following completion of this study. Clinical trial information: NCT02944344.
Exploring racial differences in patient centeredness of care (PCC) during breast cancer (BC) chemotherapy clinic visits.
Authors: Robertson-Jones Tinnikka Angel , Rosenzweig Margaret Quinn , Bender Catherine M. , Connolly Mary , Tissue Madison 
Published: November 2017

49 Background: Racial disparity in breast cancer survival may be attributed to racial differences in BC treatment dose intensity (dose received/dose prescribed within specific time frame). Poor dose intensity is associated with symptom distress among Black women. Chemotherapy associated symptoms and distress are traditionally assessed by the clinician and reported by the patient during the clinical visit. Poor communication patterns between clinician and patient that do not reflect care that is patient centered may be an important etiology of poor symptom reporting and management influencing BC racial treatment disparity. The purpose of this prospective, comparative pilot study was to qualitatively explore and code for the PCC during the chemotherapy clinical visit of women undergoing BC chemotherapy and compare by race. Methods: Dyads consisting of age-matched Black and White women were recruited. Audio recordings of clinical visits conducted prior to any chemotherapy cycle (except first) infusion were obtained and transcribed. The transcripts were reviewed blindly by two independent coders assigning scores using the Four Habits Coding Scheme, a measure of PCC which includes 23 items coded on five-point scale; lower scores indicate better PCC. Mean scores were tabulated from both coders’ scores and then compared by racial groups using t-test. Results: Matched dyads consisting of 6 Black and 5 White patients undergoing breast cancer chemotherapy were recruited from 1/15/2014 to 12/4/2014 at a 90% recruitment rate. Attrition of one black patient left groups of 5 White (mean age 45) and 5 Black (mean age 47) patients. A total of 15 recordings were analyzed for White and 14 for Black participants. All of the 23 PCC scores were better for White vs. Black women. Black women had worse scores (p < .05) for 6/22 or (27%) of the PCC scores. Conclusions: Qualitatively exploring the PCC during the chemotherapy clinical visits may elucidate reasons for racial disparity in symptom assessment, reporting, management and subsequent distress. These preliminary findings inform future research exploring racial disparity in symptom communication as an etiology of disparity in cancer treatment intensity.
Assessing caregiver satisfaction with care on an acute palliative care unit.
Authors: Mak Ernie , Murphy-Kane Patricia , Zimmermann Camilla 
Published: November 2017

51 Background: Accreditation Canada has adopted four main values for hospice, palliative, and end-of-life services: dignity and respect; information sharing; partnership and participation; and collaboration . These domains, as well as communication and joint decision-making, are important for satisfaction of caregivers for patients with cancer, and can be measured using the FAMCARE questionnaire. We aimed to assess satisfaction of caregivers for patient admitted to an acute palliative care unit at a comprehensive cancer center in Toronto, Canada. Methods: The FAMCARE questionnaire was administered by a trained volunteer to self-identified caregivers of patients who were admitted for more than five days on the acute palliative care unit. A short, anonymous demographic survey accompanied the FAMCARE questionnaire to gather information on relationship to patient, ethnicity, patient length of stay, and location of residence. The survey package either was completed in the presence of the volunteer, or was left to be completed by the caregiver alone and collected later by the volunteer. Results were reviewed regularly at the quality committee of the palliative care service. Results: From September 2014 to March 2017, 90 caregivers completed the questionnaire. Most caregivers were female (69%), identified as Canadian or Caucasian (57%), and lived in Toronto (63%). In all, 57% were spouses while 31% were children of the patient. Most patients had been admitted between a week and a month (67%). Care was rated as “Satisfied” or “Very satisfied” most of the time on all items (range 81-100%). The availability of nurses and doctors (100% satisfied/very satisfied) and the way tests and treatments were followed-up (99%) were rated highest. Information given about side effects (81%) and referral to specialists (83%) were rated lowest. Conclusions: Despite the nature of the acute palliative care unit, where patients admitted tend to be very ill with complex symptoms and psychosocial issues, caregiver satisfaction was high. Future research will examine whether caregivers of different ethnicities value different aspects of cancer care.
Discussions about hospice among patients with advanced cancer.
Authors: Traeger Lara , Wright Emily M. , El-Jawahri Areej , Gallagher Emily R. , Greer Joseph , Temel Jennifer S. 
Published: November 2017

53 Background: Timely and effective patient-clinician communication about treatment options at the end of life (EOL) is considered essential to quality care. In this study we examined the timing and nature of first discussions about hospice. We hypothesized that earlier initiation of hospice discussions would be associated with longer hospice length of stay. Methods: We analyzed data from a randomized trial of early palliative care integrated with oncology care versus oncology care alone in patients with newly diagnosed incurable lung or non-colorectal gastrointestinal cancer at the Massachusetts General Hospital (n = 350, enrolled 5/11-7/15). Analysis included patients deceased at 1 year after last enrollment (n = 259). Electronic health records were reviewed to identify first documented hospice discussion with a medical oncology or palliative care clinician. Among hospice enrollees, we tested the association of first hospice discussion with hospice length of stay, adjusting for cancer type and randomized group. We used content analysis to explore the nature of first hospice discussions. Results: Prior to death, 79.9% of patients (54% male; M age = 64 yrs [SD = 11 yrs]) enrolled in hospice. Among hospice enrollees, 8.2% had no documented hospice discussion before enrollment. Range of time from first hospice discussion to hospice enrollment was ≤7 days (40.0%), 8-14 days (12.1%), 15-30 days (13.2%) or > 30 days (34.7%). Greater number of days between first hospice discussion and hospice enrollment was associated with more days on hospice (Beta = .14, SE = .04, p < .001). Almost half of first hospice discussions involved initiation of hospice referral. Discussions that occurred early ( > 30 days before enrollment) were varied, reflecting clinician’s provision of information; discussion of future hospice use; and initiation of dialog about patient/family areas of ambivalence or concern. Conclusions: Earlier initiation of hospice discussions was associated with more subsequent days on hospice and reflected attention to patient/family informational needs, perspectives and concerns about hospice and EOL care. Research is needed to help identify and address factors that facilitate earlier discussions with patients/families about EOL care options.
Autonomy Preference Index and advance care planning preference of patients with incurable cancer and their association with anxiety and depression.
Authors: Colombet Isabelle , Rouquette Alexandra , Urtizberea Miren , Vinant Pascale 
Published: November 2017

54 Background: Shared decision-making and informed patient choices are promoted in many countries. However, advances in antitumoral treatments are making decisions and communication more complex and the benefit of early discussions on end-of-life care is still unclear, especially in most distressed patients. Using a validated French version of the Autonomy Preference Index (API), we studied the factors associated with the level of preference for participation in medical decision-making (DM), information seeking (IS) and advanced care planning (ACP) in patients with incurable cancer. Methods: The API is a self-administered scale that measures both dimensions of DM and IS on a 0 - 100 scale (100 for maximum participation and desire for information). DM is also assessed against the illness severity, using 3 clinical vignettes of specific diseases of increasing severity, each on a 0 - 10 scale. We designed another clinical vignette, questioning patient’s preference for discussion on “Do Not Resuscitate” order (ACP). 187 consecutive patients visiting the general oncology clinic of a university hospital completed the questionnaire, as well as the anxiety and depression HADS 14-points scales. Results: Patients were aged 65±12, 46% male, 39% with high school level of education. Lung (25%), colorectal (14%), pancreas (12%) ovarian (12%) were the most frequent types of cancer. 175 (95%) patients were receiving chemotherapy, 60 (33%) had anxiety, and 49 (26%) depression. Median (1st-3rdquartiles) of IS and DM were 45.8 (33.3-58.3), 85.4 (78.1-96.9) respectively. According to the ACP vignette, 177 (95%) patients considered important to discuss such decision with their doctor, 130 (71%) considered it possible, and 127 (68%) preferred to decide together with physician, or him/herself after taking physician’s advice. Female, most educated patients had higher DM score. We find no significant correlation between IS or DM scores and HADS. Conclusions: Incurable cancer patients have high expectations of medical information but intermediate or low level of preference for participation in decision making. However, they value the discussion on ACP to express their informed choice.
Metastatic Breast Cancer Collateral Damage (MBCCD) project: Think tank of advocates and provider-survivors.
Authors: Eshraghi Leah , Cooper Ortner Heather , DeHart Jessica Noelle Clague , Stanton Annette , Williamson Timothy , Jorge Alexandra , Obidegwu Nwamaka , Love Susan M. 
Published: November 2017

55 Background: From The Health of Women (HOW) Study, we found that participants living with metastatic breast cancer (MBC) had a considerably diminished quality of life (QoL) compared to those with less advanced breast cancer. When faced with MBC, managing and minimizing collateral damage (CD) resulting from sequential and often continuous treatments is crucial to improving QoL. The aim of the MBCCD Project was to characterize the unique experience of MBC to identify and address potential areas of need in this underserved population. Methods: Findings from the MBCCD survey (515 MBC respondents) were presented and discussed at a two-day in-person Think Tank with our Advocate Task Force–10 women and men living with MBC–and 28 provider-survivors. Provider-survivors—consisting of healthcare providers who also had been treated for cancer—represented the full spectrum of providers that MBC patients may need, including nurses, oncologists, and surgeons, to physical therapists, psychologists, social workers, palliative care specialists, and faith leaders. The group was selected to address issues from both perspectives of care to ensure that recommendations would fully address patients’ needs and could be easily implemented in the current health care delivery system. Results: The Think Tank provided multiple opportunities to discuss the survey findings and develop recommendations on ways to educate providers about the needs of MBC patients and help alleviate the CD patients experience. A wide variety of unmet needs were discussed, including increased access to clinical trials, centralized resources for financial assistance, addressing sensitive or non-discussed issues, such as fertility and sexuality, and expanding awareness of palliative care programs. We are in the process of finalizing the recommendations and will disseminate widely to providers, MBC patients, and caregivers. Conclusions: Having a panel of people seated simultaneously on both sides of the cancer diagnosis and treatment conversation resulted in recommendations that did not shy away from addressing complex issues while simultaneously having a high probability for dissemination and implementation within the health care system.
Results of implementing a novel supportive oncology screening tool for comprehensive evaluation of distress and other supportive care needs.
Authors: Khosla Paramjeet , Trosman Julia Rachel , Gerhart James , Patel Urjeet , Lo Shelly S. , Penedo Frank J. , Robinson Patricia A. , Diaz Aidnag , Lillis Teresa , Miranda Harry , Radeke Erika K. , Roggenkamp Betty , Pasquinelli Mary , Feldman Lawrence Eric , Martin Joanna , Kircher Sheetal Mehta , Garcia Sofia F. , Berardi Rosa , Weldon Christine B. 
Published: November 2017

61 Background: The Institute of Medicine (IOM) 2013 Report recommends that supportive oncology care start at cancer diagnosis; the Commission on Cancer (CoC) Standard 3.2 requires distress screening and indicated action. Screening tools are not standardized and often address only a portion of patients’ supportive oncology needs. Methods: A collaborative of 100+ clinicians, funded by The Coleman Foundation, developed a patient-centric screening tool adapted from NCCN Distress Problem List, IOM report and CoC standards, with validated sub-tools: PHQ-4 for anxiety and depression and PROMIS short forms for pain, fatigue and physical function. Novel treatment/care and other concerns were included. The screening tool was implemented at 4 cancer centers (2 academic, 1 public & 1 safety-net). End points included correlation of PHQ-4 score with other supportive oncology needs. Descriptive statistics, Fisher’s exact test were used. Results: 2805 patients were screened. Average scores were: PHQ4 – Anxiety and Depression 1.8 (mild > 3), Pain 4.5 (mild > 4), Fatigue 8.8 (mild > 6), Physical Function 20.2 (mild < 20), see table for additional items. Higher scores on the PHQ-4 were significantly associated with each of the following: greater pain, fatigue, , nutritional and specific treatment/care concerns, and lower physical function (p<.0001). (See Table). Conclusions: Patients with higher anxiety and depression also have many other supportive oncology concerns. Our results support the use of a comprehensive tool capturing a spectrum of each patient’s unique concerns. This may enable earlier interventions and personalized delivery of supportive care. [Table: see text]
Disruption or innovation? A qualitative study on the use of electronic patient-physician communication in patients with advanced cancer.
Authors: Voruganti Teja , Husain Amna , Grunfeld Eva , Webster Fiona 
Published: November 2017

64 Background: Clinical management of patients with advanced cancer is complex, involving specialized treatment and multiple healthcare providers in different settings. In this context, care coordination and sharing of contextual information is often inadequate, leading to suboptimal continuity of care. Electronic communication has the potential to address these gaps and engage patients in their own care. We studied a web-based tool which assembles the patient, their caregivers and their healthcare providers in a virtual space for team-based communication. We sought to understand participant perceptions on electronic communication in general, and the added value of the new tool in particular. Methods: We conducted a qualitative descriptive study with participants (patients with advanced cancer, caregivers, cancer physicians) who participated in a 3-month pilot trial evaluating the tool. Interviews were thematically analyzed and the perspectives from patients, caregivers and cancer physicians were triangulated. Results: We identified five themes relating participants’ perspectives on electronic communication to their experience of care: 1) apparent gaps in care; 2) uncertainty in defining the circle of care; 3) relational aspects of communication; 4) incongruence between technology and social norms of patient-physician communication; and 5) appreciation but apprehension about the role of the electronic communication tool for improving the experience of care. Conclusions: The potential of tools for electronic communication to bring together a team of healthcare providers with the patient and caregivers is significant but may pose new challenges to existing team structure and interpersonal dynamics. Patients and physicians were worried about the impact that electronic communication may have on the patient-physician relationship. Implementation approaches which build on the relationship, and integrate the team as a whole, could positively position electronic communication to enhance team-based care.
Outcomes of patients receiving chemotherapy at the end of life.
Authors: Van Metre Laura Jennifer , Scarborough Bethann , Smith Cardinale B. 
Published: November 2017

70 Background: Chemotherapy within 14 days of death indicates poor quality end-of-life (EOL) care. Despite this, approximately 25% of patients receive EOL chemotherapy. This study identifies determinants of EOL chemotherapy. Methods: We identified patients who died in the hospital within 2 weeks of receipt of chemotherapy in 2012 and conducted a detailed chart review to identify demographic and clinical factors, clinical intent, and cause of death. Provider reasoning and assessments were collected. We identified and grouped cause of death into: treatment related, progression of disease, and sudden/unexpected. We used descriptive statistics to document factors associated with receipt of EOL chemotherapy. Results: Of 41 patients, 73% were male; mean age was 63 years; 71% had a hematological malignancy. Whereas solid tumor patients overwhelmingly died of progression of disease (83%), the majority of hematologic patients died of treatment related causes (62%) such as neutropenic sepsis and graft versus host disease. Furthermore, 41% of hematologic malignancy decedents were undergoing induction therapy. Similarly, though all solid tumor chemotherapy was palliative, 33% was for a new diagnosis. All solid tumor patients had a palliative care consultation, whereas 28% of hematologic malignancy patients did. Only 17% of induction chemotherapy patients received a palliative care consult. 76% of hematologic patients were DNR at time of death, while all solid tumor patients were DNR. Site of death varied with 52% of hematologic patients dying in ICU and 10% on the inpatient hospice unit. No solid tumor patients died in the ICU; 67% died on inpatient hospice. Only 10% of all patients had performance status documented. Clinical reasoning for chemotherapy included: disease modification, bridge to clinical trial or transplant, and palliation of symptoms. Conclusions: Patients with hematologic malignancies who received EOL chemotherapy had high ICU utilization and were less likely to have a palliative care consultation. Clinical intent, including early line therapy, may foster unrealistic clinician expectations. An improved understanding of avoidable causes of receipt of chemotherapy at EOL is important in addressing this gap in quality of care.