bluuebunny/crossref_metadata_2025_split huggingface dataset:
Developing a conceptual framework of optimal spiritual care: Clergy perspectives.
Authors: LeBaron Virginia T. , Quinones Rebecca , Nibecker Callie , White-Hammond Gloria , Smith Patrick T. , Balboni Tracy A. , Balboni Michael 
Published: February 2017

234 Background: An intriguing finding from previous research is that spiritual support by clergy led to more aggressive care at the end-of-life (EOL), particularly for Black and Latino patients. A better understanding of this phenomenon is critical as aggressive EOL care results in poorer patient and caregiver quality of life, and can significantly impact the death experience. Methods: This was a qualitative, descriptive study. The purpose was to develop a conceptual framework regarding clergy perspectives of optimal spiritual care provision to inform an EOL educational curriculum for clergy. Clergy from varying spiritual backgrounds, geographical locations in the U.S., and race/ethnicities were recruited. Semi-structured interview guides were developed by an interdisciplinary panel of medical educators and religious experts. Interviews were audio-taped, transcribed verbatim, and de-identified. Following principles of grounded theory, a final set of themes and sub-themes were identified through an iterative process of constant comparison. Results: A total of 35 clergy participated in one-on-one interviews (N = 14) and two focus groups. 43% of clergy were Black/African-American, 50% Caucasian and 7% Asian. 7% self-identified as Latino/Hispanic; most reported affiliation with a Christian denomination (96%). Primary themes included Patient Spiritual Struggles, Who Clergy Are (‘Being’), What Clergy Do (‘Doing’) and What Clergy Believe (‘Believing’). Spiritual struggles focused on existential questions, practical questions and difficult emotions. ‘Being” was supported by subthemes related to various manifestations of Presence; “Doing” by subthemes of religious activities, pastoral support, meeting the needs of patient/families, and mistakes to avoid; “Believing” by subthemes of having a relationship with God, virtues, and eternal life. Conclusions: Understanding clergy perspectives regarding optimal spiritual care provision is crucial to improve EOL care, especially for patient populations highly engaged with faith communities. This conceptual framework can help inform the design of educational EOL care initiatives for clergy and foster productive dialogue among clergy, clinicians, and patients.
Effect of a spiritual care training program on patient quality of life and spiritual well-being.
Authors: Yang Grace Meijuan , Tan Yung Ying , Cheung Yin Bun , Dignadice Dennis , Lim Amy , Lye Weng Kit , Ng Lola , Peh Tan Ying , Ramaswamy Akhileswaran , Suppiah Sarasvathy , Tan Angela , Tan Yee Pin , Xu Zhi Zhen , Yee Alethea , Zhu Xia , Neo Patricia 
Published: February 2017

235 Background: Spiritual care (SC) is a vital part of palliative care (PC) but its provision is still not routine. We studied the effect of a SC training program for staff on patient quality of life (QOL) and spiritual wellbeing (SPS), as measured by the Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being (FACIT-Sp). Methods: This study was conducted at two sites: a PC consultative service in an acute hospital and a home PC service. The program comprised a 30 min training session for nurses and doctors on using the FICA tool for spiritual assessment and subsequent referral to a medical social worker (MSW) if needed, and a 60min training session with the MSWs on how to manage spiritual problems. A prospective cluster-controlled trial was done across 7 clusters. FACIT-Sp comprises 27 items for QOL (FACT-G) in the 4 domains and 12 items for SPS. This was administered at T1: upon referral to the palliative care service and T2: after 3 clinical visits by the PC team (doctor, nurse or MSW visits). Results: QOL data from 142 participants (69 intervention and 73 control) were analyzed. There appeared to be some benefit of the program on all domains of QOL as well as SPS, although only the FACT-G score achieved statistical significance. After further statistical adjustment for scores at T1 (to account for any regression to the mean), FACT-G score remained practically significant (p value 0.076). Conclusions: A brief SC training program for staff (30 min for nurses and doctors, 60 min for MSWs) appeared to result in some improved QOL and SPS for patients. However, a larger sample size will be needed to estimate the degree of benefit more accurately. [Table: see text]
Patient and provider perceptions about exercise in cancer care, excluding breast: Are we on the same page?
Authors: Smaradottir Agnes , Oettel Kurt R. , Smith Angela , Borgert Andrew 
Published: February 2017

238 Background: Cancer organizations recommend physical activity as part of therapy to aid in symptom management, reduce recurrence and improve overall quality of life. What the optimal exercise program should look like and what stakeholder barriers exist are unclear. Methods: We convened three focus groups, one with metastatic patients, one with non-metastatic patients, one with the providers in the Cancer Center and conducted individual interviews at Gundersen Health System in La Crosse, Wisconsin. The constant comparative method was used to identify themes about exercise as part of cancer treatment. Results: No statistical differences in demographic characteristics exist between metastatic (N = 9) and non-metastatic (N = 11) patients. Impacts of exercise on cancer, who should instruct patients about exercise and how/where the exercise should take place emerged as the main themes. Discordance between patients and providers (N = 10) was identified in these areas. Patients felt that exercise during treatment provided intrinsic value (“Exercise mentally is important”) whereas providers connect exercise to positive disease outcome (“There are decreased recurrence rates for multiple different malignancies that have been proven in large studies”). Patients resoundingly expressed a desire to receive instructions for exercise from their oncologist (“I rely a lot on my oncologist...they are tuned into you”). Providers expressed a desire for a referral process to a cancer trained physical therapist or trainer who would guide patients through an exercise program (“to have assistance from someone who is trained… would be really beneficial”). Conclusions: Providers recognize the importance of exercise as part of a cancer treatment plan, yet they agree that time constraints associated with a busy practice impacts the priority of exercise instructions. Bridging the gap we identified between patient and providers’ perceptions has potential for cancer care across the nation. We plan to further study the discord after designing standard exercise recommendations at varied levels of intensity through collaboration with oncology providers, physical therapy and Livestrong personnel utilizing venues in our region.
Fatigue in long-term non-Hodgkin lymphoma survivors.
Authors: Hudson Kathryn Elizabeth , Benecha Habtamu Kassa , Houck Kevin Leo , LeBlanc Thomas William , Abernethy Amy P , Zimmerman Sheryl , Ganz Patricia A. , Smith Sophia Kustas 
Published: February 2017

239 Background: Fatigue is a common and distressing effect of cancer and its treatment, potentially affecting quality of life (QOL) for years after treatment. However, the prevalence and persistence of fatigue among long-term survivors of non-Hodgkin lymphoma (NHL) remains unknown. We aimed to identify demographic, clinical, and psychosocial risk factors for persistent fatigue in this population. Methods: In 2010, surveys were mailed to 682 NHL survivors who participated in a study 5 years earlier; respondents were, on average, 10.4 years post diagnosis. Standardized measures of QOL, symptoms, medical history, and demographic variables were reported at both time points. We defined significant fatigue conservatively as 0.5 standard deviations below the SF-36 scale’s cutoff for fatigue, and we defined persistent fatigue as significant fatigue at both time points. Chi-square, t-tests, and logistic regression were used to determine risk factors and predictors for persistent fatigue. Results: 30.8% (n = 172) and 33.0% (n = 186) of patients reported significant fatigue at time point 1 and 2, respectively; 20% of patients had persistent fatigue. Patients with persistent fatigue were more likely to report: female gender, income < $30,000, less than college education, less exercise, active disease, chemotherapy, at least one recurrence of their disease, less social support, an average of 3.8 more comorbidities, and significantly more posttraumatic stress than those without persistent fatigue (all p < .05). Logistic regression showed that education less than college, more comorbidities, less exercise, and more posttraumatic stress were independent predictors of persistent fatigue (all p < .05). Conclusions: Fatigue plagues one-third of NHL survivors and persists in one-fifth of this population even years after diagnosis. These findings could inform clinical practice in NHL survivorship and highlight targets for intervention.
Assessing associations between symptoms and survivorship care plans among long-term cancer survivors.
Authors: Tisnado Diana , Steers Neil , Peirce Katelynn , Walling Anne M. 
Published: February 2017

246 Background: Nearly 14 million Americans are cancer survivors, and numbers are increasing. Common long-term and late effects reported by survivors include anxiety, depression, fatigue, pain, and others. In order to address potential long-term and late effects of cancer and its treatment, the IOM recommends that patients receive a Survivorship Care Plan (SCP), a record of care received and important disease characteristics and a follow-up care plan incorporating available evidence-based standards of care. Our aims were to assess prevalence of self-reported moderate-severe symptoms and worry, and test for associations with SCP receipt. Methods: We used data from CanCORS II, a national study of lung and colorectal cancer patients. Long term survivors were diagnosed in 2004, and showed no sign of disease seven years post-diagnosis. We included 888 lung and colorectal cancer survivor respondents to the CanCORS II Long Term Survivor Survey. We examined moderate-severe pain (3, 4, or 5 on the SF-36 pain interference item), fatigue (less than 40 on the SF-36 vitality score), depressive symptoms ( > 6 on CESD-8), and worry about recurrence. SCP receipt was defined as receipt of a treatment summary, follow-up care plan, or both. Multivariable logistic regression was used to test for associations between SCP and symptoms and worry. Results: In all, 27% of survivors had 0, and 26% had both SCP components. Moderate-severe pain was reported by 32% of colorectal and 42% of lung cancer survivors, and fatigue by 15% of colorectal and 30% of lung cancer survivors. Moderate-severe depressive symptoms were reported by 12% of colorectal cancer and 16% of lung cancer survivors. Less than ¼ (23%) reported worry about recurrence sometimes, often or always. In analyses adjusting for demographics and health status, receipt of both SCP components was associated with lower odds of moderate-severe pain (OR = 0.78, p = 0.004), fatigue OR = 0.42, p = 0.006), and depressive symptoms (OR = 0.48, p = 0.03). Conclusions: Receipt of a complete SCP was associated with lower odds of moderate-severe pain, fatigue, and depressive symptoms. We found no association with worry. However, only 26% of survivors reported receipt of both SCP components as recommended.
Using standardized patients to improve delivery of bad news by pediatric hematology-oncology fellows.
Authors: Brackett Julienne , Frugé Ernest , Lorin Martin 
Published: February 2017

29 Background: First-year pediatric hematology-oncology fellows frequently must deliver difficult news to patients and families, possibly with little prior experience. Training in this area is often via didactic lectures and by “trial and error”. This can lead to significant discomfort on the part of fellows and potentially increased distress on the part of families if information is poorly communicated. Standardized patient (SP) encounters provide a safe environment for fellows to practice effective and compassionate communication skills. SPs can provide feedback to the fellows that may not otherwise be available from patients, families or peers. Methods: During the 4 hour course, fellows receive didactic sessions on delivery of bad news, disclosure of medical errors, and discussion of prognosis and goals of care. Half of the fellows receive the didactic sessions, while the other half participate in the SP cases involving 7-10 minute encounters followed by 10-15 minute confidential debriefings including the fellow, SP and a faculty member. Three cases are completed by each fellow: new diagnosis of an incurable brain tumor, tumor progression and goals of care discussion regarding the same patient 6 months later, and disclosure of a chemotherapy error. At the end, fellows complete an evaluation of the course and their perceived post-course skills. Results: Fellows in the first course (n = 8) strongly agreed that the course improved their ability to deliver bad news (mean = 5 on 5 point scale), was an appropriate method for this material (mean = 4.6) and that the confidential debriefing was useful without being stressful (mean = 4.7). Most comments supported the utility of receiving immediate feedback from the SPs and faculty. The didactic sessions were listed as the least helpful part of the course. Conclusions: Simulated encounters with immediate feedback from SPs and faculty can improve perceived competence in the delivery of bad news. Like many adult learners, course participants did not find the didactic sessions to be as helpful as interactive experiences. Follow-up surveys after the fellows complete the first year of training will further assess the utility of this instructional method.
“Months, not years”: Impact of clinical discussions of advanced cancer life-expectancy on patient illness understanding.
Authors: Epstein Andrew S. , Prigerson Holly Gwen , Saltz Leonard , O'Reilly Eileen Mary , Shah Manish A. , Maciejewski Paul K 
Published: February 2017

30 Background: Patients’ understanding of their illness often guides best practice, and this is no less true at the end of life. Data showing the influence of patients’ acknowledgment of prognostic discussions on the accuracy of patients’ illness understanding could inform the debate regarding how to engage in these difficult discussions. Methods: To evaluate the effects of recent and past oncologist-patient discussions about prognosis/life-expectancy (P/LE) on changes in advanced cancer patents’ illness understanding (acknowledgement of their illness as 1. terminal; 2. incurable; 3. advance staged; and 4. associated with an estimated life-expectancy in months, not years), 208 patients (with advanced lung or upper gastrointestinal cancers that progressed on 1 chemotherapy regimen, or advanced colorectal cancers that progressed on 2) from Coping with Cancer II, a prospective observational cohort study, were interviewed before and after a visit with their oncologists who discussed scan results regarding potential additional progression. Results: Median time between pre- and post-scan interviews was 38 days. Controlling for potential confounds (i.e., patients’ race) and adjusting for patients’ pre-scan illness understanding, patients who acknowledged ever having discussions of P/LE with their oncologists were more likely to recognize that their disease was incurable (Adjusted Odds Ratio [AOR] = 2.97, p = 0.009) than those who did not. Compared to patients who denied ever having a discussion of P/LE, those who reported having both recent and past discussions of P/LE were more likely to recognize that their disease was at an advanced stage (AOR = 4.88, p = 0.012), and those who reported having only recent discussions, or both recent and past discussions, of P/LE were more likely to estimate their life-expectancy in terms of months as opposed to years (AOR = 10.1, p = 0.050, and AOR = 17.5, p = 0.006, respectively). Conclusions: Advanced cancer patients who acknowledge having discussions of P/LE with their oncologists have a better understanding of the terminal nature of their illnesses as compared to those who do not, and thus may be better prepared to make informed end-of-life care decisions.
Discussing goals of care preoperatively in high-risk oncologic surgery.
Authors: McGreevy Chris , Kunac Anastasia , Chokshi Ravi , Smith Janet Harris , Mazza Debra , Mosenthal Anne C 
Published: February 2017

38 Background: Major oncologic surgery has a high incidence of perioperative morbidity. Despite these risks, most surgeons do not discuss goals of care prior to surgery. This study assessed the feasibility of a preoperative goals of care discussion for high risk oncologic surgery. Methods: Observational study of patients undergoing high risk surgery. Prior to surgery, patients were referred for consultation with a surgeon certified in both Palliative and Critical Care. Consultations followed a semi-structured template (table). Patient and conversation outcomes were assessed, and qualitative analysis of consult notes was performed to identify themes. Results: Twelve patients were approached and 11 participated. Mean time between consultation and surgery was 7 days (1-36). All patients named a health care proxy and expressed goals of care. Most (8/11) specified their preferences for life support. Themes included hope –surgery will return them to independence/home; fear – pain, anxiety; and faith–“it is up to God” as reason for not discussing suboptimal surgical outcomes. One patient declined surgery after discussion and transitioned to hospice. Ten survived to discharge: 6 to home (2 with hospice), 4 to rehab. Conclusions: Preoperative goals of care discussions are feasible for high risk oncologic surgery patients. Eliciting goals of care helped clarify wishes for life sustaining therapy. Goals of care discussions do not destroy hope, but can reveal unrealistic expectations for surgery and outcomes. [Table: see text]
Advanced cancer patients' priorities regarding wishes at the end of life: A randomized controlled study.
Authors: Delgado-Guay Marvin Omar , Rodriguez-Nunez Alfredo , De la Cruz Vera J , Frisbee-Hume Susan , Williams Janet L. , Wu Jimin , Liu Diane D , Fisch Michael , Bruera Eduardo 
Published: February 2017

44 Background: Conversations about wishes around the end-of-life(EOL) are challenging for clinicians. There is limited literature about the type and stability of patient’s reported EOL planning priorities. We compared a set of 36 cards (“Go-wish-Game”: GWG) v. a paper list of statements (LOS) to assist patients in establishing priorities. Methods: Randomized controlled study. Pts. were randomized to the GWG or to 36 LOS and were asked to categorize them as very, somewhat, or not important; Group A received LOS followed by LOS 4-24 hours later; group B: GWG-GWG; group C: GWG-LOS, and group D: LOS-GWG. The State-Trait Anxiety inventory for Adults(STAI) was done after the first set of questionnaires. Results: 100 pts. Median age (IQR): 56 (27-83) years. 60% female. 68% White, 17% Hispanic, and 9% African-American. 62% married. Age, marital status, religion, education and cancer diagnosis were not significant different among groups. All pts. were able to complete the GWG. 43/50 (88%) agreed that instructions of GWG were clear. 45/50 (92%) agreed that GWG was easy to understand. 31/50 (64%) patients exposed to both tools, preferred GWG. 39/50 (79%) expressed that GWG did not increased their anxiety. 31/50 (63%) expressed that having conversations about priorities near EOL is beneficial to them (p=NS). STAI median (IQR) score after GWG was 48 (39-59) v. 47 (27-63) for LOS, p=0.2952. The 10 most common “Very important” wishes expressed by pts. the first and second time they received the test (%; Spearman, p-value) were: to be at peace with God(74% v. 71%; r=0.73, p<0.0001), to pray(62% v. 61%, r=0.53, p<0.0001), to have my family with me(57% v. 61%; r=0.23, p=0.02), to be free from pain(54% v. 60%, r=0.31, p=0.001), not being a burden to my family(48% v. 49%, r=0.23, p=0.02), to trust my doctor(44% v. 45%; r=0.49, p<0.0001), to keep my sense of humor(41% v. 45%; r=0.53, p<0.0001), to say goodbye to important people in my life(41% v. 37%; r=0.46, p<0.0001); to have my family prepared for my death(40% v. 49%; r=0.48, p<0.0001). Conclusions: EOL wishes were similar and persistent using both GWG and LOS. Completing both GWG and LOS did not increase anxiety. All patients were able to complete and most preferred GWG.
Associations between hospice use and end-of-life (EOL) care outcomes in patients with advanced cancer.
Authors: Kumar Pallavi , Hatfield Laura , Wright Alexi A. , Temel Jennifer S. , Keating Nancy Lynn 
Published: February 2017

53 Background: There are few data examining the association between hospice care (HC) and the quality of advanced cancer patients’ EOL care. We explored associations between HC and family-reported relief of patients’ symptoms, quality of EOL care, and concordance with patients’ previously expressed wishes for EOL care and place of death. Methods: We surveyed 2,307 family members of deceased patients with advanced lung cancer (LC) or colorectal cancer (CRC) who were enrolled in the Cancer Care Outcomes Research and Surveillance (CanCORS) study (a national prospective, observational cohort study). We used propensity score matching to compare family-reported outcomes for patients who did or did not receive HC, including prevalence and relief of common symptoms (pain, dyspnea, depression or anxiety), quality of EOL care, and concordance with wishes for EOL care and place of death. Results: In 985 matched pairs, patients with LC or CRC who received HC had higher pain, distress from pain, and depression and/or anxiety, but more appropriate relief of pain and dyspnea (Table). HC was associated with a higher family-reported quality of EOL care, greater concordance with patients’ EOL care wishes, and higher likelihood of death in a preferred place. Conclusions: Patients receiving HC had greater symptoms compared to non-hospice enrollees, but had more appropriate symptom relief. HC for patients with LC or CRC is also associated with higher quality of EOL care, and concordance with wishes for EOL care and place of death as reported by bereaved family members. These data demonstrate the need to improve hospice utilization for advanced cancer patients. [Table: see text]