A cluster randomized trial of a primary palliative care intervention (CONNECT) for patients with advanced cancer: Protocol and key design considerations

BackgroundThe addition of specialty palliative care to standard oncology care improves outcomes for patients with advanced cancer and their caregivers, but many lack access to specialty care services. Primary palliative care—meaning basic palliative care services provided by clinicians who are not palliative care specialists—is an alternative approach that has not been rigorously evaluated.MethodsA cluster randomized, controlled trial of the CONNECT (Care management by Oncology Nurses to address supportive care needs) intervention, an oncology nurse-led care management approach to providing primary palliative care for patients with advanced cancer and their family caregivers, is currently underway at 16 oncology practices in Western Pennsylvania. Existing oncology nurses are trained to provide symptom management and emotional support, engage patients and families in advance care planning, and coordinate appropriate care using evidence-based care management strategies. The trial will assess the impact of CONNECT versus standard oncology care on patient quality of life (primary outcome), symptom burden, and mood; caregiver burden and mood; and healthcare resource use.DiscussionThis trial addresses the need for more accessible models of palliative care by evaluating an intervention led by oncology nurses that can be widely disseminated in community oncology settings. The design confronts potential biases in palliative care research by randomizing at the practice level to avoid contamination, enrolling patients prior to informing them of group allocation, and conducting blinded outcome assessments. By collecting patient, caregiver, and healthcare utilization outcomes, the trial will enable understanding of the full range of a primary palliative care intervention's impact.     

Overcoming communication challenges in integrative supportive cancer care: The integrative physician,the psycho-oncologist,and the patient

BackgroundComplementary/integrative medicine (CIM) services are increasingly being integrated into conventional supportive cancer care, presenting a number of challenges to communication between healthcare professionals (HCPs). The purpose of the present study was to explore the impact of the communication between integrative physicians (IPs) trained in CIM and social workers (SWs) working as psycho-oncologists in the same oncology setting. We examine whether IP-SW communication correlates with the number of patient-SW sessions, as provided within the oncology department.MethodsSW-IP communication, defined as a summary of the IP consultation sent to the patient's SW, was compared to SW-patient communication, defined as the number of psycho-oncology treatment sessions.ResultsOf 344 patients referred by their oncology HCP for IP consultation, 91 were referred by an SW and 253 by an oncologist or nurse. IP-to-SW summaries were provided for 150 patients referred by a non-SW HCP (43.6%), and for 91 of SW-referred patients (26.5%). In all, 32 patients referred to the IP had no psycho-oncology interaction with an SW; 58 only one meeting; and 254 with ≥2 interactions, with 119 having >6 sessions. SW-patient interactions were greater with higher rates of IP-SW communication, for both patients referred by an SW (79.1%) and those referred by a non-SW HCP (77.3%) when compared to patients for whom no summary was provided (64.1%; p =  0.02).ConclusionA greater level of IP-SW communication, measured by the provision of an IP summary to the patient's SW, was found to correlate with a higher rate of SW-patient interactions. The use of a structured two-way referral-summary between IPs and SWs has the potential to advance the SW-patient psycho-oncology interaction, within an integrative supportive cancer care setting.     

The lack of standard definitions in the supportive and palliative oncology literature

ContextMultiple organizations have raised concerns about the lack of standard definitions for terminology in the supportive and palliative oncology literature.ObjectivesWe aimed to determine 1) the frequency of 10 commonly used terms in the supportive and palliative oncology literature, 2) the proportion of articles that provided definitions for each term, and 3) how each term was defined.MethodsWe systematically searched MEDLINE, PubMed, PsycINFO, the Cochrane Library, Embase, ISI Web of Science, and Cumulative Index to Nursing and Allied Health Literature for original studies, review articles, and systematic reviews related to palliative care and cancer in the first six months of 2004 and 2009. We counted the number of occurrences for “palliative care,” “supportive care,” “best supportive care,” “hospice care,” “terminal care,” “end-of-life,” “terminally ill,” “goals of care,” “actively dying,” and “transition of care” in each article, reviewed them for the presence of definitions, and documented the journal characteristics.ResultsAmong the 1213 articles found, 678 (56%) were from 2009. “Palliative care” and “end-of-life” were the most frequently used terms. “Palliative care,” “end-of-life,” and “terminally ill” appeared more frequently in palliative care journals, whereas “supportive care” and “best supportive care” were used more often in oncology journals (P < 0.001). Among 35 of 601 (6%) articles with a definition for “palliative care,” there were 16 different variations (21 of 35 articles used the World Health Organization definition). “Hospice care” had 13 definitions among 13 of 151 (9%) articles. “Supportive care” and other terms were rarely defined (less than 5% of articles that used the term).ConclusionOur findings highlight the lack of definitional clarity for many important terms in the supportive and palliative oncology literature. Standard definitions are needed to improve administrative, clinical, and research operations.     

Integration of Palliative Care into Acute Myeloid Leukemia Care

ObjectiveTo provide an overview of the past, present, and future of the integration of palliative care services for patients with hematologic malignancies, such as acute myeloid leukemia (AML).Data SourcesPublished literature as indexed in Medline, relevant guideline documents, textbooks, and clinical experience.ConclusionPatients with acute leukemias have substantial palliative care needs that often go unmet with standard oncology care. Evidence shows that the early integration of specialist palliative care into standard oncology care improves patient-centered outcomes among those with advanced solid tumors. Emerging evidence supports similar benefits among hospitalized patients with hematologic malignancies undergoing stem cell transplantation, and additional trials are underway to further test palliative care interventions in patients with AML.Implications for Nursing PracticeBy better understanding the palliative care needs of patients with AML and the evidence of integration with standard oncologic care, patients with leukemias may be more likely to receive early integrated palliative care.     

Spiritual care in the intensive care unit: An integrative literature research

PurposeThe aim of this study is to review the literature for three major domains in relation to spiritual care in the ICU, namely Quality of Life (QoL), Quality of Care (QoC), and Education (E).MethodAn integrative literature research.ResultsThe 113 selected articles reveal that spirituality is an essential component of QoL and that complementary and effective spiritual care (SC) relieves distress of patients and their relatives. Furthermore, the contribution of SC to quality of care is: 1) diagnosing and addressing spiritual and emotional needs among patients and their relatives; 2) offering spiritual comfort to the patient in distress; 3) increased spiritual well-being of both patients and their relatives; 4) increased family satisfaction in general and by shared decision-making.Finally, the literature reveals the necessity to improve SC knowledge and skills of ICU healthcare professionals (IC HCPs) through relevant training courses.ConclusionSC contributes to QoL and QoC. The literature indicates that IC HCPs acknowledge the need to improve their SC knowledge and skills to enhance complementary, effective SC. Further research on SC as an integrated part of daily ICU care is necessary to improve QoL and QoC of patients and their relatives.     

Limitations of Current Rehabilitation Practices in Pediatric Oncology: Implications for Improving Comprehensive Clinical Care

ObjectiveTo identify the proportion of hospitals/clinics in the United States (US) that have a comprehensive pediatric oncology rehabilitation program and characterize current practices.DesignCross-sectional survey of rehabilitation providers in the US and internationally.SettingElectronic or telephone survey.ParticipantsRehabilitation or supportive care practitioners employed at a hospital, outpatient clinic, or medical university (N=231).InterventionsElectronic and telephone survey. The full electronic survey contained 39 questions, provided opportunities for open-ended responses, and covered 3 main categories specific to pediatric cancer rehabilitation: service delivery, rehabilitation program practices, and education/training. The short telephone survey included 4 questions from the full survey and was designed to answer the primary study objective.Main Outcome MeasuresProportion of hospitals/clinics with a comprehensive pediatric oncology rehabilitation program.ResultsThis cohort includes rehabilitation providers from 191 hospitals/clinics, 49 states within the US, and 5 countries outside of the US. Of hospitals/clinics represented from the full and short survey, 145 (76%) do not have an established pediatric oncology rehabilitation program. Nearly half of full survey respondents reported no knowledge of the prospective surveillance model, and 65% reported no education was provided to them regarding pediatric cancer rehabilitation. Qualitative survey responses fell into 3 major themes: variability in approach to rehabilitation service delivery, program gaps, and need for additional educational opportunities.ConclusionsThere is evidence of limited comprehensive rehabilitation programming for children with cancer as demonstrated by the lack of programs with coordinated interdisciplinary care, variability in long-term follow-up, and absence of education and training. Research is needed to support the development and implementation of comprehensive pediatric oncology rehabilitation programs.     

Prostate Cancer with Bone Metastases: Addressing Chronic Pain from the Perspective of the Radiation Oncology Nurse Practitioner

ObjectivesTo discuss the symptom burden experienced among patients with castrate-resistant prostate cancer and bone metastases and the role of the oncology nurse practitioner in evaluation for palliative radiotherapy.Data SourcesThese include PubMed, international consensus documents, and clinician experience.ConclusionMen with advanced prostate cancer may live for several years after diagnosis of bone metastases; however, pain and other difficult symptoms are problematic. Pain is effectively treated with palliative radiotherapy, but careful assessment and intervention of other difficult symptoms must be addressed over time.Implications for Nursing PracticeNurse practitioners in radiation oncology should be well-versed in the disease trajectory of this patient population. Careful symptom inquiry and comprehensive physical examination is a key responsibility. Palliative radiotherapy, alongside analgesics and supportive care measures, can effectively reduce symptoms and improve quality of life in men with prostate cancer metastatic to bone.     

Is There a Role for Palliative Services and Supportive Care in Managing Advanced Penile Cancer?

ObjectivesWe aim to review the benefits of palliative care, describe why a palliative approach to care is needed for patients with advanced penile squamous cell carcinoma and propose ways in which oncology nurses can improve access to and provision of palliative care.Data SourcesA review of the literature was performed and identified a range of randomized trials and systematic reviews regarding the benefits of palliative care in this patient group. Cohort studies of patients with penile cancer were used to describe the psychosocial and physical disease burden of penile cancer.ConclusionThroughout each phase of penile cancer and its treatment, oncology nurses can engage in care that goes beyond cancer-directed treatments to address the whole person, thereby improving quality of life by delivering person-centered palliative care in line with individual needs.Implications for Nursing PracticeOncology nurses are in key positions to explore many concerns that patients with penile cancer have for themselves or their caregivers. Through speaking directly with patients and caregivers, oncology nurses can uncover sources of distress, assess for unmet needs, and advocate for improved primary palliative care or early referral to specialty palliative care teams.     

Blended Oncology Nursing Training: A Quality Initiative in East Africa

PurposeLack of education and awareness about cancer treatment may result in suboptimal care of patients with cancer. Unlike high-income countries, resource-limited countries lack the standardized training and scope of practice in oncology nursing. This quality improvement project was conducted to assess nurses’ knowledge gain, retention of knowledge and clinical skill set, and feasibility of a blended learning approach in the care of adult oncology patients across four hospitals in Kenya and Tanzania.MethodWe used a combination of computer-led eLearning sessions and face-to-face interactions over 12 months for cancer education to oncology nurses. Pre- and posttests with each training session were combined with face-to-face clinical skills training at beginning and completion of the course. A comprehensive postassessment was conducted immediately after the training, and at 6, 9, and 12 months to evaluate knowledge gain and retention.ConclusionOf 21 participants across four sites, there was a statistically significant improvement in knowledge scores for 12 participants (P value < .05). The mean pre- and posttest results found significant differences across 10 sessions individually and cumulatively (P value < .01). Results from a one-way repeated measures analysis of variance (ANOVA) test on comprehensive test results suggested that there was no significant difference in knowledge retention across 9 months (F(2, 30) = 1.648412, P > .05).Implications for Nursing PracticeBlended learning is an effective tool in improving knowledge, skills, and self-efficacy for clinicians practicing in resource-limited countries. Developing a structured oncology training program has implications for bridging knowledge gaps among clinicians in resource-limited countries and promoting international knowledge exchange.     

Perception of integrative care in paediatric oncology—perspectives of parents and patients

PurposeFor some years now, a programme for the use of integrative care in paediatric oncology has been established in a German university hospital and offers patients and parents complementary treatment options. According to their medical condition and wishes. A variety of external applications such as medical wraps, warm oil compresses and rhythmic embrocations are offered. This article analyses how patients and parents perceived and experienced the integrative care program.MethodsIn this qualitative study, data consists of field notes conducted through participant observation, informal conversations and interviews with parents (n = 25) during the implementation phase of the program. Data was analysed on basis of thematic analysis and organized with the analysis software MAXQDA.ResultsParents and families intuitively developed strategies for dealing with crisis situations such as childhood cancer. In addition, many of the families brought with them a wealth of experience in complementary medicine. Parents perceived the integrative care treatments as soothing, relaxing and pain-relieving for their child. Patients could relax and side effects of chemotherapy were alleviated. However, children, who undergoing chemotherapy were not always open for physical touch and thus sometimes also rejected the treatments sometimes.ConclusionThe analysed integrative care programme is perceived as a strong patient and family-centred approach of support during the oncological paediatric treatment. From a salutogenetic viewpoint, this program aims to strengthen the dimension of manageability within the concept of sense of coherence. Parents are given supportive means to manage side effects and ease their child’s suffering, through touch and attention that can be very beneficial.     

Providing Palliative and Hospice Care to Children,Adolescents and Young Adults with Cancer

ObjectivesTo describe palliative, concurrent, and hospice care in pediatric oncology in the United States (US), we present a clinical scenario illustrating palliative and hospice care, including eligibility for concurrent care, insurance coverage and billing, barriers to accessing quality pediatric palliative and hospice care, and implications for oncology nursing practice.Data SourcesPeer-reviewed articles, clinical practice guidelines, professional organizations, and expert clinical opinion examining pediatric oncology, palliative care, and hospice care.ConclusionUnderstanding the goals of palliative and hospice care and the differences between them is important in providing holistic, goal-directed care.Implications for Nursing PracticeOncology nurses play a pivotal role in supporting the goals of pediatric palliative care and hospice care and in educating patients and their families. Nurses form trusting relationships with pediatric oncology patients and their families and are in a position to advocate for best palliative care practices as disease progresses to end of life, including when appropriate concurrent care or hospice.     

Education / training in supportive and palliative care in central and eastern Europe

During the totalitarian era terminal care was excluded from the health care system, and oncology, including education in the field, was rather neglected. The political and economic reforms that started in the 1990s in the countries of eastern and central Europe enhanced the development of palliative care and improvements in cancer treatment standards. This survey was performed to assess the current status of education and training in supportive and palliative care. A questionnaire was prepared and distributed by the authors to national leaders in palliative/supportive care. Data obtained from 16 countries indicate progress in palliative care provision and education, though it is held up by economic difficulties and by the lack of regulations in countries engaged in reforms of their health care systems. Training in supportive care is deficient; the discipline is usually perceived as the management of side-effects of anticancer treatment, so that it is not separated from clinical oncology. Access to professional literature should be improved, and the creation of national literatures should be encouraged. The role of local leaders, NGOs and professional associations must be emphasized. The main goals are: improvement of education, and better quality and availability of palliative and supportive care, not only for patients with cancer but also in other progressive life-threatening diseases.     

Interprofessional simulation-based training in gynecologic oncology palliative care for students in the healthcare profession: A comparative randomized controlled trial

BackgroundPreprofessional palliative care education may be inadequate, leaving a gap in health professional students' knowledge and understanding of managing patients with gynecologic cancer and their families. Interprofessional simulation-based training may be useful in helping health professional students gain the necessary skills required for palliative care.ObjectiveThis study aimed to determine the effectiveness of different simulation methods used for interprofessional training on gynecologic oncology palliative care knowledge, interdisciplinary education perceptions, and teamwork attitudes of health professional students and to compare these methods.DesignA comparative randomized controlled trial was conducted with a pre-test and two post-tests.SettingsThis study was conducted at a university in Ankara, Turkey, in 2016–2017.ParticipantsA convenience sample of 84 interprofessional students (nursing, medical, nutrition-dietician, and social work) was used in the study.MethodsStudents were stratified by their profession and randomized by four blocks into high-fidelity simulation, hybrid simulation, and a control group. Data were collected using a semi-structured questionnaire form, palliative care knowledge test, interdisciplinary education perception scale, and teamwork attitudes questionnaire.ResultsThe high-fidelity simulation and hybrid simulation groups improved their palliative care knowledge, interdisciplinary education perception, and teamwork attitudes from pre-test to first and second post-tests compared to the control group.ConclusionThe introduction of high-fidelity simulation and hybrid simulation or hybrid simulation-based interprofessional training in undergraduate education can increase students' palliative care knowledge, interdisciplinary education perception, and teamwork attitudes. Training programs that are used together with high-fidelity simulation and hybrid simulation applications in interdisciplinary training should be integrated into the undergraduate curricula of future cooperating health professions.     

An?sthesiologie und Palliativmedizin

Background

Anesthesiology departments were often integrated into the primary formation of palliative activities in Germany. The aim of this study was to present the current integration of anesthesiology departments into palliative care activities in Germany.

Methods

The objective was to determine current activities of anesthesiology departments in in-hospital palliative care. A quantitative study was carried out based on a self-administered structured questionnaire used during telephone interviews.

Results

A total of 168 out of 244?hospitals consented to participate in the study and the response rate was 69%. In-hospital palliative care activities were reported for most of the surveyed hospitals. Only two hospitals in the maximum level of care reported no activities. Participation in these activities by anesthesiology departments was described in up to 92%. Historically, most activities are due to the commitment of individuals, whereas the development of palliative care of cancer pain services and hospital support teams took place in the university hospitals by 2005.

Conclusions

Until 2005 many university palliative care activities had their origins in cancer pain services. These were often integrated into anesthesiology departments. Currently, anesthesiology departments work as an integrative part of palliative medicine. However, it appears from the present results that there is a domination of internal medicine (especially hematology and oncology) in palliative activities in German hospitals. This allows the focus of palliative activities to be formed by subjective specialist interests. Such a state seems to be reduced by the integration of anesthesiology departments because of their neutrality with respect to faculty-specific medical interests. Advantages or disadvantages of these circumstances are not considered by the present investigation.