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.     

Registered nurses’ knowledge,attitudes and beliefs about end-of-life care in non-specialist palliative care settings: A mixed studies review

AimThe aim of this study was to describe, evaluate and synthesise the literature on registered nurses’ knowledge, attitudes and beliefs towards end-of-life care in adult non-specialist palliative care settings.BackgroundLittle is known about the knowledge, attitudes and beliefs of Registered Nurses working in non-specialist palliative care settings about end-of-life care.DesignA mixed-methods systematic review and narrative synthesis was conducted (PROSPERO Registration No: CRD4202148114). Five databases (Medline, CINAHL, PubMed, PsycINFO and Web of Science) were searched from inception to August 2020. Study quality was assessed using the Mixed Methods Appraisal Tool.ResultsNineteen studies met the inclusion criteria. Registered nurses in non-specialist palliative care settings demonstrated good knowledge of pain symptoms and management and positive attitudes towards caring for dying patients and their families. Knowledge deficits were identified in the psychosocial and spiritual aspects of end-of-life care and registered nurses reported negative attitudes towards communication about death. Only five of the included studies explored registered nurses’ beliefs towards end-of-life care.ConclusionsThere is a need to enhance palliative care education in clinical practice settings and in undergraduate programs to improve registered nurses’ knowledge, attitudes and beliefs about end-of-life care. Future studies that use reliable and validated methods to measure registered nurses’ beliefs about end-of-life care should be conducted.Tweetable abstractRNs in non-specialist palliative care settings want more education on pain management & greater knowledge on communicating about death/dying.     

Transitions and shifting goals of care for palliative patients and their families

Terminally ill patients and their families experience many confusing and, at times, traumatic transitions. Examples of such transitions include transitions from cure to comfort care, transitions related to loss, changes in care settings, and psychosocial and spiritual transitions. The purpose of this article is to discuss the experiences of palliative patients and their families as they journey through transitions and how oncology nurses can provide support. Using a composite case study from actual clinical cases as a framework for discussion, the authors present examples of evidence-based strategies that can be used by oncology nurses. Critical points from the case study are Adjustment to death is a process and cannot be rushed. The needs of a palliative patient and family should be heard, honored, and not questioned or challenged. A patient and family should remain in control of decision making, with the hospice and palliative care team acting as guides and facilitators.     

Patient satisfaction measurement: current issues and implications

Healthcare consumers are demanding excellence in care and services from care providers, and payors are following in their expectations. Demonstration of quality outcomes and consumer satisfaction with services are now a priority and the primary competitive edge in healthcare. Hospitals and healthcare systems that invest in programs to determine how patients evaluate their experiences will have valuable information to make transformational changes in care delivery and services. The purpose of this article is to present an overview of consumer/patient satisfaction instruments, satisfaction measurement issues, research instruments, and commonly used vendor patient satisfaction survey programs.     

Patient satisfaction measurement: current issues and implications

Healthcare consumers are demanding excellence in care and services from care providers, and payors are following in their expectations. Demonstration of quality outcomes and consumer satisfaction with services are now a priority and the primary competitive edge in healthcare. Hospitals and healthcare systems that invest in programs to determine how patients evaluate their experiences will have valuable information to make transformational changes in care delivery and services. The purpose of this article is to present an overview of consumer/patient satisfaction instruments, satisfaction measurement issues, research instruments, and commonly used vendor patient satisfaction survey programs.     

Quality of life assessment in cancer palliative care

In the palliative cancer care field, few qualified evidences about health outcomes, e.g., quality of life (QOL), have been produced and applied to daily care. This article firstly describes the reality of qualified evidences in this field examined by MEDLINE search, and introduces some of the recently published qualified papers. Secondly, this article introduces some of the standard methods how to select appropriate QOL instruments. Finally, this article reviews recent topics about concepts and theories for health outcomes assessments.     

Modernising cancer and palliative care education in the UK: insights from one Cancer Network.

This article reports on a scoping study into cancer education provision in one UK Cancer Network. A range of professionals (nurses, allied health professionals (AHPs), health care support workers and educationalists) were invited to participate in focus group or individual interviews, or to return questionnaires regarding their perceptions of training needs and current opportunities. This yielded data from a total of 94 participants. In addition, curriculum documents from local universities were subjected to thematic analysis. Findings from the relevant section of The National Cancer Patient Survey were also considered to provide insight into the expressed needs of local service users. Most cancer and palliative care education was directed towards nurses employed in specialist oncology settings. Some groups appeared to be poorly served (including community nurses, senior nurses and AHPs). No evidence could be found of inter-professional cancer or palliative care education within the university sector. Curriculum content did not appear to reflect the ethnic diversity or socio-economic deprivation that characterised the local heath economy. Further research is needed to determine how best to ensure that continuing professional education reflects the needs of all practitioners involved in cancer and palliative care.     

A Systematic Review of Palliative Care Intervention Outcomes and Outcome Measures in Low-Resource Countries

Context

To meet the growing need for palliative care in low-resource countries, palliative care programs should be evidence based and contextually appropriate. This study was conducted to synthesize the current evidence to guide future programmatic and research efforts.

It just didn't work: the realities of quality assessment in the English health care context

AIMS: Assessment of care quality is integral to health and palliative care provision and there is a need to develop and implement outcome measures to assess quality. This study aimed to: (1) describe the implementation of a palliative care outcome measure in non-specialist palliative care settings and (2) to understand the implementation of the measure. METHOD: Twenty-five non-specialist palliative care settings were purposely sampled and invited to implement a palliative care outcome measure. Fifteen settings agreed to take part. The research team provided training and support in the use of the measure. Data were collected on actual use of the measure and, via interviews with patients and nurses, on their experiences. RESULTS: The number of assessments was low (21 patients assessed against an anticipated minimum of 240). The analysis of nurses' accounts identified important considerations in understanding the low response. Although nurses saw the implementation of the outcome measure as bringing opportunities for themselves, including their own professional development, and for the organisations they represent, including raising organisational profiles, there were a number of factors that acted as impediments. These include: perceived time to administer the paperwork; competence and confidence in recruiting patients and proceeding with informed consent; concerns about the effects of completing the measure with very ill patients; and the effects of nurses raising palliative care issues on their relationships with patients. CONCLUSIONS: It is difficult to integrate outcome measures into routine clinical practice. Future interventions should consider how to tailor the implementation of outcome measures within existing working structures and provide education and training to enable nurses to deal with potentially sensitive palliative care issues.     

Postdoctoral Research Training in Palliative Care: Lessons Learned From a T32 Program

Our aging population and advances in chronic disease management that prolong the time that patients live with a chronic illness have combined to create an enormous need for improved palliative care research across diverse diseases. In this article, we describe the structure and processes of a National Institutes of Health-funded T32 postdoctoral research fellowship at the University of Washington and our experiences in developing and implementing the program. We recognize a broad definition of palliative care research, including research focused on improving quality of life, minimizing symptoms, providing psychological and spiritual support, and improving communication about patients' values and goals of care, all in the context of a serious illness. We describe our four core principles for postdoctoral training in palliative care research, each with a number of specific approaches: 1) mastering a set of essential content and research skills; 2) structured mentoring and academic career development; 3) creating and supporting early success; and 4) interdisciplinary training and team science. In addition, we also describe our framework for the essential competencies necessary for a palliative care research training program, our methods for identification and selection of applicants, our outcomes to date, and our processes of continuous quality assessment and improvement. Our goal is to describe our successful postdoctoral research training program in palliative care to promote development of new programs and share information between programs to continue to build the field of collaborative and interdisciplinary palliative care research.     

Fall risk factors and the nature of falls in inpatient oncology and palliative care settings

Using a prospective design, this study examined falls risk factors and the nature of patient falls in oncology and palliative care settings. Two hundred and twenty seven patients admitted to the oncology and palliative care units at a private hospital participated in this study. Of these, 34 patients had a fall and 193 patients did not have a fall. Twenty-four nurses who attended to patients who fell were interviewed. Findings revealed that, when compared to patients who did not fall, fallers had a significantly higher mean age; were assessed as more physically dependent using the Eastern Cooperative Oncology Group scale; were less alert and more confused; were more likely to have responded incorrectly to orientation to person, time and place; were weaker pre-fall in arm muscle strength; and were more fatigued. These factors are worthy of further exploration to determine whether they are more sensitive than the currently used falls risk factors used in oncology and palliative care settIngs.     

How Important is Spirometry for Identifying Patients with COPD Appropriate for Palliative Care?

BackgroundProviding palliative care to patients with chronic obstructive pulmonary disease (COPD) is a priority. Spirometry demonstrating airflow limitation is a diagnostic test for COPD and a common inclusion criterion for palliative care research. However, requiring spirometry with airflow limitation may exclude appropriate patients unable to complete spirometry, or patients with preserved-ratio impaired spirometry and symptoms or imaging consistent with COPD.MeasuresTo determine differences in quality of life (QOL) and symptoms between patients with COPD identified based on International Classification of Diseases (ICD) codes and spirometry with airflow limitation compared to ICD codes only.InterventionPatients with COPD enrolled in a palliative care trial were included. Patients were at high risk of hospitalization and death and reported poor QOL. Baseline measures of QOL (Functional Assessment of Cancer Therapy–General (FACT-G), the Clinical COPD Questionnaire, and Quality of Life at the End of Life), and symptoms (Patient Health Questionnaire-8, Generalized Anxiety Disorder-7, fatigue, Insomnia Severity Index) were compared.OutcomesTwo hundred eight patients with COPD were predominantly male, White, and average age was 68.4. Between patients with ICD codes and spirometry with airflow limitation compared to patients with ICD codes only, there were no significant differences in FACT-G (59.0 vs. 55.0, P = 0.33), other measures of QOL, or symptoms between groups.ConclusionThese results imply that spirometry may not need to be a requirement for inclusion into palliative care research or clinical care for patients with poor quality of life and at high risk for adverse outcomes.     

Oncology patients’ and oncology nurses’ views on palliative chemotherapy: A cross-sectional comparison

BackgroundPalliative chemotherapy may be offered to patients with incurable cancer with the goal of extending life and improving quality of life. However, the adverse effects that may be associated with chemotherapy can negatively impact patients’ quality of life. Oncology nurses have an integral role in caring for patients during the decision-making process and may understand the potential implications of treatment options being offered to patients.Objectives(1) To compare the views of medical oncology outpatients and oncology nurses about palliative chemotherapy near the end of life. (2) To examine the reasons oncology nurses gave for choosing not to receive palliative chemotherapy.DesignCross-sectional comparison study.Settings and participantsA total of 194 patients, aged 18 years or over with a confirmed diagnosis of cancer who were attending a medical oncology outpatient clinic for their second or subsequent appointment completed a pen and paper survey between September 2015 and January 2016. One hundred and seven nurses who were members of an oncology nursing society or employed in an oncology setting in a participating metropolitan hospital completed an online survey between May 2018 and July 2019.Outcome measuresParticipants were presented with data derived from the Coping with Cancer study comparing six quality of life and care outcomes for patients who received, or did not receive, palliative chemotherapy in the last 6 months of life. Participants were asked to consider the data and indicate what option they would choose if they were in the same situation. Choices included: have chemotherapy; do not have chemotherapy; and unsure. Participating nurses were also asked to provide reasons for their choices.ResultsThree-quarters of participating nurses indicted they would not have palliative chemotherapy if it was offered to them, compared to just over one-third of people with cancer (p < 0.001). The top three reasons participating nurses gave for not having palliative chemotherapy were: wanting to make the most of their remaining time; increasing the chance of dying in the location of their choice; and the limited benefit of palliative chemotherapy in the last 6 months of life.ConclusionNurses in this study were significantly less likely than patients to indicate a willingness to have palliative chemotherapy if they were in the last 6 months of life. Further research is needed to examine how nurses’ knowledge and experience can help patients to make informed decisions about their care with the goal of achieving an end-of-life experience that best aligns with their wishes.     

Enhancing Palliative Care With Mindful Touch: Impact of a Manual and Movement Therapy Training Program in an International Multidisciplinary Integrative Oncology Setting

ContextManual and movement therapies (MMTs) play a central role in the integrative oncology setting, significantly improving patients' quality of life (QOL). Despite research supporting the effectiveness and safety of these modalities, most oncology health care providers (HCPs) lack any MMT training.ObjectivesIn this study, we examine the impact of an MMT-based integrative oncology training program with the participation of an international and multidisciplinary group of oncology HCPs. The feasibility of implementing these skills in palliative cancer care is examined.MethodsA three-day evidence-based hands-on teaching program was designed to train oncology HCPs working in supportive cancer care MMT modalities from traditional Chinese and anthroposophic medicine. Prequalitative and postqualitative assessments of the trainees' narratives were analyzed using ATLAS.Ti software (Scientific Software Development GmbH, Berlin, Germany) for systematic coding.ResultsThe training program was attended by 30 participants from Israel (15), Germany (7), Italy (6), Turkey (1), and Cyprus (1). The group included 13 nurses, 10 physicians, 6 complementary/integrative HCPs, and 1 psycho-oncologist. The pretraining expectations that were met at post-training included gaining knowledge and practical QOL-oriented skills, which could be implemented in the palliative and supportive care setting. A significant change in the attitude of trainees to touch therapy was also identified, with respondents seeing MMTs promoting patient-centered palliative care, including nonverbal communication.ConclusionAn MMT training program for oncology HCPs for QOL-related indications is both feasible and likely to be implemented in palliative and supportive cancer care. Nonspecific effects of MMTs were also recognized for their ability to facilitate patient-centered care.