bluuebunny/crossref_metadata_2025_split huggingface dataset:
Aspects and Intensity of Pediatric Palliative Case Management Provided by a Hospital-Based Case Management Team: A Comparative Study Between Children With Malignant and Nonmalignant Disease
Authors: Jagt-van Kampen Charissa T. , Colenbrander Derk A. , Bosman Diederik K. , Grootenhuis Martha A. , Kars Marijke C. , Schouten-van Meeteren Antoinette YN 
Published: November 2017

Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children’s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. Methods: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT. Results: Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases). Significance of Results: This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT.
Single Institute Experience With Methylphenidate and American Ginseng in Cancer-Related Fatigue
Authors: Chang Young D. , Smith Joshua , Portman Diane , Kim Richard , Oberoi-Jassal Ritika , Rajasekhara Sahana , Davis Mellar 
Published: November 2017

Background: Single therapy with methylphenidate or American ginseng contributes to the reduction in cancer-related fatigue (CRF) with different pharmacologic mechanisms and is relatively safe. However, the safety and efficacy of treating CRF with methylphenidate and AG combination therapy is unknown. Aim: The primary objective was to assess the clinical safety and the change in fatigue with numerical rating scale (NRS) on the Edmonton Symptom Assessment Scale (ESAS) after intervention with methylphenidate and AG combination therapy. Methods: We reviewed the electronic medical records of 857 patients seen in our Palliative Medicine outpatient clinic between February 1, 2015, and December 31, 2015. Fatigue was assessed by NRS on ESAS. Toxicity was reviewed on clinician’s documents. Results: We identified 28 patients who were prescribed a combination of methylphenidate (10-40 mg/d) and AG (2000 mg/d). Ten patients did not comply with the combination therapy. Three patients had stage 2 adverse effects. Fifteen patients completed prescribed combination therapy per instructions. The mean time interval between pre- and postintervention follow-up was 30.5 days (standard deviation [SD]: 7.78). There was a significant reduction in the fatigue score (mean score 6.93-4.13) from the pre- to postscore records (mean: −2.8; SD: 1.61; P < .0002* [*refers to statistically significant]). Sixty percent of patients reported significant reduction in fatigue (cutoff value: ≥3; reduction in fatigue score from baseline: 80% ≥2, 60% ≥3, and 46.7% ≥4). Conclusion: In our retrospective medical record review, the combination treatment of methylphenidate and AG had no discernible associated toxicities and showed potential clinical benefit in CRF.
End-of-Life Care and Discussions in Japanese Geriatric Health Service Facilities: A Nationwide Survey of Managing Directors’ Viewpoints
Authors: Kanoh Asako , Kizawa Yoshiyuki , Tsuneto Satoru , Yokoya Shoji 
Published: November 2017

Background: Geriatric health service facilities (GHSFs) play important roles as intermediate care facilities for elderly individuals temporarily when they need rehabilitation before returning home. However, the number of residents spending their end-of-life (EOL) period in such facilities is increasing. To improve the quality of EOL care, end-of-life discussions (EOLDs) are recommended by some guidelines and studies. Aim: This study aimed to clarify the current practice of EOL care and EOLDs in GHSFs in Japan. Methods: We conducted a nationwide cross-sectional survey by mailing questionnaires about EOL care and EOLDs to 3437 GHSF managing directors. The questionnaire was developed through a literature review and discussion among the researchers and experts. Descriptive statistics summarized the data. We also analyzed the factors related to GHSFs conducting EOLDs using Fisher exact tests. Results: The response rate was 20.7% (713 of 3437). Among the respondents, 75.2% (536 of 713) of GHSFs provided EOL care and 73.1% (521 of 713) conducted EOLDs. The most common reasons for difficulties in providing EOL care included the lack of EOL education for nurses and care workers, and their fear about caring for dying residents. End-of-life discussions were mostly initiated after the deterioration of a resident’s condition and were conducted with families by physicians. Statistically significant factors of GHSFs conducting EOLDs included providing EOL education for nurses and care workers, availability of private room for critically ill residents, emergency on-call doctors, and EOL care. Conclusion: Adequate practical staff education programs for EOL care including EOLDs may be crucial for quality of end-of-life care in aged care facilities.
Outcomes of Music Therapy Interventions on Symptom Management in Palliative Medicine Patients
Authors: Gallagher Lisa M. , Lagman Ruth , Rybicki Lisa 
Published: November 2017

Purpose: Evidence has demonstrated the positive effects of music therapy on symptom management for palliative medicine patients. Previous studies have addressed patient needs, with limited discussion involving the relationship between interventions utilized to improve symptoms. The purpose of this study was to understand the impact of music therapy sessions; identify common music therapy goals and interventions and assess their effect; and investigate the effects of gender, age, and type of cancer on symptoms in patients who experienced music therapy. Methods: This was a retrospective study of data collected during music therapy sessions. Patients scored their symptoms (pain, anxiety, depression, shortness of breath, and mood) before and after sessions. Data collected from over 1500 patients included symptom evaluation, goals, interventions, music used, patient/family reactions, and narratives. Results: Among 293 patients who met all study inclusion criteria, significant improvement in pain, anxiety, depression, shortness of breath, mood, facial expression, and vocalization scores was noted. In addition, 96% of patients had positive responses to participating in music therapy. Vocal and emotional were the 2 most effective interventions in improving symptoms. All 5 patient-reported symptoms improved when the therapist focused on these symptoms as goals. Age, gender, and diagnosis had no impact on symptom improvement. Conclusions: This study demonstrated the importance of music therapy for addressing symptoms and behaviors of palliative medicine patients. Statistically and clinically significant effects were noted. The most effective interventions were identified. More research needs to be conducted to better understand the benefits of music therapy for palliative medicine patients.
“It Has Changed My Life”: An Exploration of Caregiver Experiences in Serious Illness
Authors: Anderson Eric W. , White Katie M. 
Published: November 2017

Background: Informal, unpaid caregivers shoulder much of the care burden for individuals with serious illness. As part of a project to create an innovative model of supportive care for serious illness, a series of user interviews were conducted, forming the basis for this article. Objective: To understand both individual and interpersonal aspects of caregiving for serious illness. Methods: Twelve semistructured group interviews were conducted with patients, families, and professionals as part of a larger study of late-life serious illness. Transcript data were analyzed with descriptive coding, and then coded material was analyzed to elicit major themes and subthemes. Results: A total of 73 individuals participated in group interview sessions. Using descriptive coding, quotes were assigned to first-order codes of rewards, challenges, and a category of learnings and adaptations. Subthemes of reward included gratitude, a sense of accomplishment or mastery, and closeness in personal relationships. The most oft-cited challenges included emotional and physical stresses of caregiving and feeling unprepared or unsupported in caregiving. Reflecting on their experiences, caregivers cited new ways in which they had learned to be creative, to show assertiveness and advocacy, and to create personal balance in a demanding situation. Conclusions: The experience of caregiving is a life-altering journey as individuals rise to challenges and reflect on the rewards. Caregivers described intensive caregiving, often without acknowledgment or understanding of their role from the health-care system. This invisibility created its own iatrogenic caregiving challenge. The identified themes suggest avenues of meaningful caregiver support that bear further exploration.
Sleep Problems, Anxiety, and Global Self-Rated Health Among Hospice Family Caregivers
Authors: Washington Karla T. , Parker Oliver Debra , Smith Jamie B. , McCrae Christina S. , Balchandani Shanky M. , Demiris George 
Published: November 2017

Background: Although research has linked sleep problems, anxiety, and poor health outcomes among patients’ family members in nonhospice settings, little is known about these often interrelated issues among hospice family caregivers. Objectives: We sought to examine the relationships between sleep problems, anxiety, and global self-rated health among hospice family caregivers. Methods, Setting, and Patients: We conducted a secondary analysis of quantitative data from 395 family caregivers of hospice patients in the Midwest and Southeastern United States. Results: Nearly one-third of the hospice family caregivers who participated in this study experienced clinically noteworthy levels of sleep problems and/or anxiety. Caregivers’ symptoms of anxiety and sleep problems were strongly correlated. Caregivers who reported more frequent sleep problems and higher levels of anxiety reported poorer overall health. Conclusion: Hospice providers, who are charged with attending to the needs of both patients and their family caregivers, may improve their practice by regularly assessing for sleep problems and anxiety among family caregivers and providing appropriate interventions or referrals.
Pneumonia in Nursing Home Patients With Advanced Dementia: Decisions, Intravenous Rehydration Therapy, and Discomfort
Authors: van der Steen Jenny T. , Di Giulio Paola , Giunco Fabrizio , Monti Massimo , Gentile Simona , Villani Daniele , Finetti Silvia , Pettenati Francesca , Charrier Lorena , Toscani Franco 
Published: November 2017

Background: Comfort may be an appropriate goal in advanced dementia. Longitudinal studies on physician decision-making and discomfort assessed by direct observation are rare, and intravenous rehydration therapy is controversial. Methods: To assess treatment decisions and discomfort in patients with advanced dementia and pneumonia and to compare by intravenous rehydration therapy, we used data from the observational multicenter Italian End of Life Observatory–Prospective Study On DEmentia patients Care. We analyzed 109 episodes of pneumonia, which involved decisions in 77 nursing home patients with Functional Assessment Staging Tool stage 7. We assessed decisions, decision-making, and treatments every fortnight. Trained observers assessed discomfort with the Discomfort Scale–Dementia Alzheimer Type (DS-DAT). Results: Most decisions referred to treatment with antibiotics (90%; 98 of 109) and intravenous rehydration therapy (53%; 58 of 109), but hospitalization was rare (1%). Selecting decisions with antibiotics, with rehydration therapy, the prognosis was more frequently <15 days (34% vs 5% without rehydration therapy; P = .001), and a goal to reduce symptoms/suffering was more common (96% vs 74%; P = .005) while there was no difference in striving for life prolongation (a minority). With rehydration therapy, the decision was more often discussed with family rather than communicated only. Mean DS-DAT scores over time proximate to the first decision ranged between 9.2 and 10.5. Conclusions: Italian nursing home patients with advanced dementia and pneumonia frequently received invasive rehydration therapy in addition to antibiotics, however, mostly with a palliative intent. Discomfort was high overall and symptom relief may be improved. Relations between invasive rehydration therapy and discomfort need further study.
“This Is What Family Does”: The Family Experience of Caring for Serious Illness
Authors: Anderson Eric W. , White Katie M. 
Published: November 2017

Background: As the demographics of caregiving in United States evolve toward multigenerational, distributed family structures, the ways in which individuals and their families experience serious illness are changing. As part of a project to create an innovative model of supportive care for serious illness, a series of user interviews were conducted, forming the basis for this article. Objective: To understand the experience of caregiving for individuals with serious illness from an intergenerational family perspective. Methods: Twelve semistructured group interviews were conducted with patients, families, and professionals. Transcript data were analyzed with descriptive coding, looking for major themes and subthemes related to family experiences. Results: Seventy-three individuals participated in group interview sessions. While both families and individuals encountered caregiving challenges, the family unit experienced care in several unique ways. It accommodated differences in temperament and readiness, managed internal conflict, and strived to emerge as a cohesive unit. Individual struggles were often magnified or, more often, ameliorated by family context. Caregiving itself formed a legacy for future generations. Finally, care was seen as bidirectional, being tendered both by the family caregivers and in turn by the patient. Conclusions: When talking about care for serious illness, individuals report both rewards and challenges, often in a family context. The family enterprise manages a loved one’s care, negotiates the health-care system, and adjusts its own internal dynamics. Integrating the family narrative provides a more balanced view of the family system that provides the day-to-day care for individuals with serious illness.
Preliminary Analysis of a Modified Screening Tool to Increase the Frequency of Palliative Care Consults
Authors: Hurst Emily , Yessayan Lenar , Mendez Michael , Hammad Aws , Jennings Jeffrey 
Published: November 2017

Purpose: Palliative care interventions have been shown to improve patient quality of life but the benefit may be less if interventions occur late in the patient’s disease process. The objective of this study was to evaluate whether an objective screening tool could improve the frequency and timeliness of palliative care consultation. Methods: Using a quasi-experimental design with 2 geographically separate medical intensive care units (MICUs), the control MICU continued existing consultation practice and the intervention MICU implemented a screening tool with each new admission. Any item checked on the screening tool triggered a palliative care consult within 24 hours of admission to the MICU. Results: A total of 223 MICU admissions were evaluated: 156 patients in the control group and 67 patients in the intervention group. More consults were generated in the intervention group (22.39%) compared to the control group (7.05%; P < .001). The median time to consultation was lower in the intervention group compared to the control group (1 day vs 2 days; P < .01). Conclusion: Implementing a simple, objective screening tool increased palliative consultation rates and decreased median time to palliative consultation in our institution’s MICU.
Access to Palliative Care for Patients Undergoing Mechanical Ventilation With Idiopathic Pulmonary Fibrosis in the United States
Authors: Rush Barret , Berger Landon , Anthony Celi Leo 
Published: November 2017

Objective: The utilization of palliative care (PC) in patients with end-stage idiopathic pulmonary fibrosis (IPF) is not well understood. Methods: The Nationwide Inpatient Sample (NIS) was utilized to examine the use of PC in mechanically ventilated (MV) patients with IPF. The NIS captures 20% of all US inpatient hospitalizations and is weighted to estimate 95% of all inpatient care. Results: A total of 55 208 382 hospital admissions from the 2006 to 2012 NIS samples were examined. There were 21 808 patients identified with pulmonary fibrosis, of which 3166 underwent mechanical ventilation and were included in the analysis. Of the 3166 patients in the main cohort, 408 (12.9%) had an encounter with PC, whereas 2758 (87.1%) did not. After multivariate logistic regression modeling, variables associated with increased access to PC referral were age (odds ratio [OR]: 1.02, 95% confidence interval [CI]: 1.01-1.03, P < .01), treatment in an urban teaching hospital (OR: 1.49, 95% CI: 1.27-3.58, P < .01), and do-not-resuscitate status (OR: 9.86, 95% CI: 7.48-13.00, P < .01). Factors associated with less access to PC were Hispanic race (OR: 0.64, 95% CI: 0.41-0.99, P = .04) and missing race (OR: 0.52, 95% CI: 0.34-0.79, P < .01), with white race serving as the reference. The use of PC has increased almost 10-fold from 2.3% in 2006 to 21.6% in 2012 ( P < .01). Conclusion: The utilization of PC in patients with IPF who undergo MV has increased dramatically between 2006 and 2012.
Toward Mentoring in Palliative Social Work: A Narrative Review of Mentoring Programs in Social Work
Authors: Toh Ying Pin , Karthik R. , Teo Chia Chia , Suppiah Sarasvathy , Cheung Siew Li , Krishna Lalit 
Published: November 2017

Background: Mentoring by an experienced practitioner enhances professional well-being, promotes resilience, and provides a means of addressing poor job satisfaction and high burnout rates among medical social workers. This is a crucial source of support for social workers working in fields with high risk of compassion fatigue and burnout like palliative care. Implementing such a program, however, is hindered by differences in understanding and application of mentoring practice. Aim: This narrative review of mentoring practice in social work seeks to identify key elements and common approaches within successful mentoring programs in social work that could be adapted to guide the design of new mentoring programs in medical social work. Methodology and Data Sources: A literature search of mentoring programs in social work between January 1, 2000, and December 31, 2015, using Pubmed, CINAHL, OVID, ERIC, Scopus, Cochrane and ScienceDirect databases, involving a senior experienced mentor and undergraduate and/or junior postgraduates, was carried out. A total of 1302 abstracts were retrieved, 22 full-text articles were analyzed, and 8 articles were included. Results: Thematic analysis of the included articles revealed 7 themes pertaining to the mentoring process, outcomes and barriers, and the characteristics of mentoring relationships, mentors, mentees, and host organizations. Discussion and Conclusion: Common themes in prevailing mentoring practices help identify key elements for the design of an effective mentoring program in medical social work. We conclude with a discussion of the implications of these findings upon clinical practice in palliative care and on sustaining such a program.
Severely Affected by Parkinson Disease: The Patient’s View and Implications for Palliative Care
Authors: Strupp Julia , Kunde Anne , Galushko Maren , Voltz Raymond , Golla Heidrun 
Published: November 2017

Introduction: People severely affected by Parkinson disease (PD)/atypical parkinsonism (AP) comprise a heterogeneous group with distinct needs, which so far remain largely unexamined. The aim of our study was to analyze reasons for feeling severely affected and document unmet needs in a patient subgroup severely affected by PD/AP using solely a subjective inclusion criterion. Methods: Patients feeling severely affected by PD/AP were recruited via a magazine published by the German Parkinson Association. A questionnaire was sent out nationwide. Besides analyzing the closed-ended questions, a subsample of 40% was analyzed regarding the open-ended questions using content analysis. Correlations between subjectively felt severe affectedness and objective criteria were calculated. Results: Eight hundred fourteen questionnaires were analyzed. Sample characteristics were: mean age 70 years; 60.3% male; time since diagnosis up to 37 years; and Hoehn and Yahr score (if known) 3 (44.6%), followed by 4 (23.9%). Significant associations were observed between subjectively felt severe affectedness and Hoehn and Yahr ( P ≤ .05), poorer health ( P ≤ .01), higher nursing care level ( P ≤ 0.01), and having no children ( P ≤ .05). Most common reasons for feeling severely affected were mobility impairment (34.9%), coordination problems (17.0%), speech problems (12.2%), and limited day-to-day activities (7.8%). Most often expressed unmet needs were support in everyday life (28.1%), medical treatment (15.2%), help with financial services (11.6%), and social integration (9.9%). Conclusions: To meet the complex needs, an integrated multidisciplinary and multiprofessional approach is indicated befitting palliative care principles. Herein, home-based services seem of special importance for patients in advanced disease stages.