Specialist Palliative Care Intervention Research Articles

Effects of Specialist Palliative Care for Patients Undergoing Major Abdominal Surgery for Cancer

Specialist palliative care benefits patients undergoing medical treatment of cancer; however, data are lacking on whether patients undergoing surgery for cancer similarly benefit from specialist palliative care. To determine the effect of a specialist palliative care intervention on patients undergoing surgery for cure or durable control of cancer. This was a single-center randomized clinical trial conducted from March 1, 2018, to October 28, 2021. Patients scheduled for specified intra-abdominal cancer operations were recruited from an academic urban referral center in the Southeastern US. Preoperative consultation with palliative care specialists and postoperative inpatient and outpatient palliative care follow-up for 90 days. The prespecified primary end point was physical and functional quality of life (QoL) at postoperative day (POD) 90, measured by the Functional Assessment of Cancer Therapy-General (FACT-G) Trial Outcome Index (TOI), which is scored on a range of 0 to 56 with higher scores representing higher physical and functional QoL. Prespecified secondary end points included overall QoL at POD 90 measured by FACT-G, days alive at home until POD 90, and 1-year overall survival. Multivariable proportional odds logistic regression and Cox proportional hazards regression models were used to test the hypothesis that the intervention improved each of these end points relative to usual care in an intention-to-treat analysis. A total of 235 eligible patients (median [IQR] age, 65.0 [56.8-71.1] years; 141 male [60.0%]) were randomly assigned to the intervention or usual care group in a 1:1 ratio. Specialist palliative care was received by 114 patients (97%) in the intervention group and 1 patient (1%) in the usual care group. Adjusted median scores on the FACT-G TOI measure of physical and functional QoL did not differ between groups (intervention score, 46.77; 95% CI, 44.18-49.04; usual care score, 46.23; 95% CI, 43.08-48.14; P = .46). Intervention vs usual care group odds ratio (OR) was 1.17 (95% CI, 0.77-1.80). Palliative care did not improve overall QoL measured by the FACT-G score (intervention vs usual care OR, 1.09; 95% CI, 0.75-1.58), days alive at home (OR, 0.87; 95% CI, 0.69-1.11), or 1-year overall survival (hazard ratio, 0.97; 95% CI, 0.50-1.88). This randomized clinical trial showed no evidence that early specialist palliative care improves the QoL of patients undergoing nonpalliative cancer operations. ClinicalTrials.gov Identifier: NCT03436290.

Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers.

Primary malignant brain tumours can have an unpredictable course, but high-grade gliomas typically have a relentlessly progressive disease trajectory. They can cause profound symptom burden, affecting physical, neurocognitive, and social functioning from an early stage in the illness. This can significantly impact on role function and on the experiences and needs of informal caregivers. Access to specialist palliative and supportive care early in the disease trajectory, for those with high-grade tumours in particular, has the potential to improve patients' and caregivers' quality of life. However, provision of palliative and supportive care for people with primary brain tumours - and their informal caregivers - is historically ill-defined and ad hoc, and the benefits of early palliative interventions have not been confirmed. It is therefore important to define the role and effectiveness of early referral to specialist palliative care services and/or the effectiveness of other interventions focused on palliating disease impact on people and their informal caregivers. This would help guide improvement to service provision, by defining those interventions which are effective across a range of domains, and developing an evidence-based model of integrated supportive and palliative care for this population. To assess the evidence base for early palliative care interventions, including referral to specialist palliative care services compared to usual care, for improving outcomes in adults diagnosed with a primary brain tumour and their carers. We conducted searches of electronic databases, CENTRAL, MEDLINE, CINAHL, Web of Science, and PsycINFO (last searched 16 November 2021). We conducted searches to incorporate both qualitative and quantitative search terms. In addition to this, we searched for any currently recruiting trials in ClinicalTrials.gov and in the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) search portal, and undertook citation tracking via Scopus. We also handsearched reference lists of potentially eligible systematic review articles to identify any other relevant studies, contacted experts in the field and searched key authors via Web of Science and searched SIGLE (System of Information on Grey Literature in Europe). We included studies looking at early referral to specialist palliative care services - or early targeted palliative interventions by other healthcare professionals - for improving quality of life, symptom control, psychological outcomes, or overall survival as a primary or secondary outcome measure. Studies included randomised controlled trials (RCTs), non-randomised studies (NRS), as well as qualitative and mixed-methods studies where both qualitative and quantitative data were included. Participants were adults with a confirmed radiological and/or histological diagnosis of a primary malignant brain tumour, and/or informal adult carers (either at individual or family level) of people with a primary malignant brain tumour. We followed standard Cochrane methodological procedures for data extraction, management, and analysis. We used GRADE to assess the certainty of the evidence for symptom control, i.e. cognitive function. We identified 9748 references from the searches, with 8337 remaining after duplicates were removed. After full-text review, we included one trial. There were no studies of early specialist palliative care interventions or of early, co-ordinated generalist palliative care approaches. The included randomised trial addressed a single symptom area, focusing on early cognitive rehabilitation, administered within two weeks of surgery in a mixed brain tumour population, of whom approximately half had a high-grade glioma. The intervention was administered individually as therapist-led computerised exercises over 16 one-hour sessions, four times/week for four weeks. Sessions addressed several cognitive domains including time orientation, spatial orientation, visual attention, logical reasoning, memory, and executive function. There were no between-group differences in outcome for tests of logical-executive function, but differences were observed in the domains of visual attention and verbal memory. Risk of bias was assessed and stated as high for performance bias and attrition bias but for selective reporting it was unclear whether all outcomes were reported. We considered the certainty of the evidence, as assessed by GRADE, to be very low. Currently there is a lack of research focusing on the introduction of early palliative interventions specifically for people with primary brain tumours, either as co-ordinated specialist palliative care approaches or interventions focusing on a specific aspect of palliation. Future research should address the methodological shortcomings described in early palliative intervention studies in other cancers and chronic conditions. In particular, the specific population under investigation, the timing and the setting of the intervention should be clearly described and the standardised palliative care-specific components of the intervention should be defined in detail.

Comparing two models of outpatient specialised palliative care

BackgroundIdeally, patients with life-threatening illness who are suffering from multiple symptoms and reduced quality of life should receive palliative care that addresses their specific needs. The many well-defined clinical pathways may not always leave room for a person-centred and individual approach with respect to symptom control, psychosocial and spiritual support, and practical issues. In deciding how to organize outpatient specialist palliative care (SPC), it is relevant to include the perspectives of both patients and families. Thus, the aim of this study was to compare two models for outpatient SPC: first contact between patient, next-of-kin and doctor/nurse in the form of a home visit; and first visit in the hospital setting.MethodThe study was a comparative mixed methods study with follow-up at one and 3 months. It started with a quantitative strand in the form of a 38-item questionnaire. Data were analysed using linear mixed effects models, with maximum likelihood estimation for each outcome variable. The repeated measurements on patient level were modelled by including random intercepts of patients in the mixed model.ResultsIn total, 190 participants were enrolled, of whom 102 answered the first questionnaire.No differences were found between the two SPC interventions when development in satisfaction with care, communication or overall quality of life were compared. At baseline, a significantly higher score for satisfaction was found, in favour of first visit taking place in the hospital setting (65.91 vs. 55.83; p = 0.03) measured by FAMCARE-P16, and more patients were satisfied with availability of nurses and their abilities to listen and communicate than of doctors.ConclusionSpecialist palliative care is in request for many patients in the late phase of their disease. We found no significant differences in satisfaction with care, communication with health professionals or in overall quality of life between the two models. This may imply that access to SPC is more important than the model that is applied, and that a person-centred approach together with time available may matter more than the context. These two factors should be considered when implementing SPC.

Patient-reported distress and healthcare utilization in patients with advanced cancer.

12093 Background: The National Comprehensive Cancer Network (NCCN) defines distress as an unpleasant, multidimensional experience that may interfere with patient behavior, emotions, and ability to cope with illness. Distress screening is a critical aspect of comprehensive cancer treatment, but the relationship between patient-reported distress and healthcare utilization remains unclear. We assessed this relationship in patients with advanced cancers historically associated with high utilization, specifically non-small cell lung cancer (NSCLC) and non-colorectal gastrointestinal (NCRGI) cancer. Methods: We extracted data from the electronic medical record of adult patients with metastatic NSCLC and NCRGI cancers who were receiving active treatment, visited outpatient Duke Cancer Institute clinics between July 2013 and January 2017, and completed at least two self-report NCCN Distress Thermometer (DT) and Problem List (PL) surveys as part of routine clinical care between July 2013 and March 2019. Mixed effects logistic regression was used to estimate the odds of hospitalization or emergency room (ER) visit within either 3 or 6 months after each self-reported DT, with adjustment for age at first distress score, sex, primary tumor site, race (white vs. non-white) and duration of participation (i.e., time from first distress score to 3 months after the last distress score) information from the EMR. Results: A total of 11,027 DT scores were collected from 848 patients, with 508 (60%) having NSCLC, 340 (40%) having NCRGI cancer, and 192 (23%) reporting actionable distress (i.e., DT score ≥4). Actionable distress was associated with higher odds of hospitalization or visiting the ER within 3 months (OR = 1.37; 95% CI = 1.19, 1.58; p < 0.001) and 6 months (OR = 1.19; 95% CI = 1.03, 1.37; p = 0.019) after DT self-report. Patients who had an average DT score of ≥4 were more likely to report the following problems at least once: worry (89% of patients), nervousness (79%), fatigue (95%), pain (92%), sleep problems (79%), and eating problems (79%). Conclusions: Patient-reported distress is associated with greater healthcare utilization in patients with advanced NSCLC and NCRGI cancers who are receiving active treatment. These patients report high burden of physical and emotional problems. Actionable distress may be a useful indicator of patients in need of specialist palliative care interventions.

Effects of Early and Systematic Integration of Specialist Palliative Care in Patients with Advanced Cancer: Randomized Controlled Trial PALINT.

Background: A broad consensus on the optimal structure, intensity, and timing of early specialist palliative care (SPC) intervention is lacking. Objective: To evaluate the benefit of an early and systematic palliative intervention alongside standard oncology care compared with standard oncology care alone in patients with advanced solid tumors. Design: PALINT, a single-center RCT, conducted at the Masaryk Memorial Cancer Institute, the largest comprehensive cancer center in the Czech Republic (CR). Setting/Subjects/Measurements: Patients with newly diagnosed advanced cancer within six weeks from the start of the palliative systemic therapy were randomly assigned to the integration of SPC (intervention; a consultation with a PC physician every six to eight weeks) or to the standard oncology care (control). The primary endpoint was the quality of life (QOL) assessed by EORTC QLQ C30 and Hospital Anxiety and Depression Scale (HADS) at three and six months. Results: From 2015 to 2017, a total of 126 patients were randomly assigned to intervention (60) or to control (66) arm. At baseline, at three and six months, the global QOL scores (mean, 95% CI) in the intervention and control arm were 58.6 (53.9-63.3), 61.9 (56.4-67.4) and 66.7 (60.2-73.2) versus 54.2 (49.4-58.9), 59.0 (53.7-64.3), and 62.8 (56.7-68.9), respectively. The prevalence of anxiety (HADS-A; value >7) was 36.7%, 27.5%, and 18.9% versus 34.8%, 23.5%, and 16.3% and the prevalence of depression (HADS-D; value >7) was 28.3%, 25.4%, and 29.7% versus 28.8%, 29.4%, and 27.9%, respectively. There was no significant difference between the two arms. The overall survival was similar in both arms (347 vs. 310 days; p = 0.203). Conclusions: A model of early integration of SPC consisting of a consultation with a PC physician alone every six to eight weeks did not increase the QOL of patients with advanced cancer compared with routine oncology care in a center with widely available supportive services. These negative results underline the importance of the multidisciplinary patient centered approach in the early SPC.

Reducing time in acute hospitals: A stepped-wedge randomised control trial of a specialist palliative care intervention in residential care homes

Background: Care home residents are frequently transferred to hospital, rather than provided with appropriate and timely specialist care in the care home. Aim: To determine whether a model of care providing specialist palliative care in care homes, called Specialist Palliative Care Needs Rounds, could reduce length of stay in hospital. Design: Stepped-wedge randomised control trial. The primary outcome was length of stay in acute care (over 24-h duration), with secondary outcomes being the number and cost of hospitalisations. Care homes were randomly assigned to cross over from control to intervention using a random number generator; masking was not possible due to the nature of the intervention. Analyses were by intention to treat. The trial was registered with ANZCTR: ACTRN12617000080325. Data were collected between 1 February 2017 and 30 June 2018. Setting/participants: 1700 residents in 12 Australian care homes for older people. Results: Specialist Palliative Care Needs Rounds led to reduced length of stay in hospital (unadjusted difference: 0.5 days; adjusted difference: 0.22 days with 95% confidence interval: −0.44, −0.01 and p = 0.038). The intervention also provided a clinically significant reduction in the number of hospitalisations by 23%, from 5.6 to 4.3 per facility-month. A conservative estimate of annual net cost-saving from reduced admissions was A$1,759,011 (US$1.3 m; UK£0.98 m). Conclusion: The model of care significantly reduces hospitalisations through provision of outreach by specialist palliative care clinicians. The data offer substantial evidence for Specialist Palliative Care Needs Rounds to reduce hospitalisations in older people approaching end of life, living in care homes.

A randomized trial of a specialist palliative care intervention for patients undergoing surgery for cancer: rationale and design of the Surgery for Cancer with Option of Palliative Care Expert (SCOPE) Trial

BackgroundIn medical oncology settings, early specialist palliative care interventions have demonstrated improvements in patient quality of life and survival compared with usual oncologic care. However, the effect of early specialist palliative care interventions in surgical oncology settings is not well studied.MethodsThe Surgery for Cancer with Option for Palliative Care Expert (SCOPE) Trial is a single-center, prospective, single-blind, randomized controlled trial of a specialist palliative care intervention for cancer patients undergoing non-palliative surgery. It will enroll 236 patients scheduled for major abdominal operations for malignancy, who will be randomized 1:1 at enrollment to receive usual care (control arm) or specialist palliative care consultation (intervention arm). Intervention arm patients will receive consultations from a palliative care specialist (physician or nurse practitioner) preoperatively and postoperatively. The primary outcome is physical and functional wellbeing at 90 days postoperatively. Secondary outcomes are quality of life at 90 days postoperatively, posttraumatic stress disorder symptoms at 180 days postoperatively, days alive at home without an emergency room visit in the first 90 postoperative days, and overall survival at 1 year postoperatively. Participants will be followed for 3 years after surgery for exploratory analyses of their ongoing quality of life, healthcare utilization, and mortality.DiscussionSCOPE is an ongoing randomized controlled trial evaluating specialist palliative care interventions for cancer patients undergoing non-palliative oncologic surgery. Findings from the study will inform ways to identify and improve care of surgical patients who will likely benefit from specialist palliative care services.Trial registrationClinicalTrials.gov Identifier: NCT03436290First Registered: 16 February 2018Enrollment Began: 1 March 2018Last Update: 20 December 2018

Multi-disciplinary palliative care is effective in people with symptomatic heart failure: A systematic review and narrative synthesis

Background: Despite recommendations, people with heart failure have poor access to palliative care. Aim: To identify the evidence in relation to palliative care for people with symptomatic heart failure. Design: Systematic review and narrative synthesis. (PROSPERO CRD42016029911) Data sources: Databases (Medline, Cochrane database, CINAHL, PsycINFO, HMIC, CareSearch Grey Literature), reference lists and citations were searched and experts contacted. Two independent reviewers screened titles and abstracts and retrieved papers against inclusion criteria. Data were extracted from included papers and studies were critically assessed using a risk of bias tool according to design. Results: Thirteen interventional and 10 observational studies were included. Studies were heterogeneous in terms of population, intervention, comparator, outcomes and design rendering combination inappropriate. The evaluation phase studies, with lower risk of bias, using a multi-disciplinary specialist palliative care intervention showed statistically significant benefit for patient-reported outcomes (symptom burden, depression, functional status, quality of life), resource use and costs of care. Benefit was not seen in studies with a single component/discipline intervention or with higher risk of bias. Possible contamination in some studies may have caused under-estimation of effect and missing data may have introduced bias. There was no apparent effect on survival. Conclusion: Overall, the results support the use of multi-disciplinary palliative care in people with advanced heart failure but trials do not identify who would benefit most from specialist palliative referral. There are no sufficiently robust multi-centre evaluation phase trials to provide generalisable findings. Use of common population, intervention and outcomes in future research would allow meta-analysis.

Improving patient and caregiver outcomes in oncology: Team-based, timely, and targeted palliative care.

Over the past decade, a large body of evidence has accumulated supporting the integration of palliative care into oncology practice for patients with advanced cancer. The question is no longer whether palliative care should be offered, but what is the optimal model of delivery, when is the ideal time to refer, who is in greatest need of a referral, and how much palliative care should oncologists themselves be providing. These questions are particularly relevant given the scarcity of palliative care resources internationally. In this state-of-the-science review directed at the practicing cancer clinician, the authors first discuss the contemporary literature examining the impact of specialist palliative care on various health outcomes. Then, conceptual models are provided to support team-based, timely, and targeted palliative care. Team-based palliative care allows the interdisciplinary members to address comprehensively the multidimensional care needs of patients and their caregivers. Timely palliative care, at its best, is preventive care to minimize crises at the end of life. Targeted palliative care involves identifying the patients most likely to benefit from specialist palliative care interventions, akin to the concept of targeted cancer therapies. Finally, the strengths and weaknesses of innovative care models, such as outpatient clinics, embedded clinics, nurse-led palliative care, primary palliative care provided by oncology teams, and automatic referral, are summarized. Moving forward, more research is needed to determine how different health systems can best personalize palliative care to provide the right level of intervention, for the right patient, in the right setting, at the right time. CA Cancer J Clin. 2018;680:00-00. 2018 American Cancer Society, Inc.

The evidence of early specialist palliative care on patient and caregiver outcomes.

Although there are many differences regarding what palliative care is and to whom it should be delivered, its delivery and integration earlier in the disease trajectory have been advocated since 1990. More recently, there has been a heightened interest in early access to specialist palliative care through its provision earlier in the disease trajectory to improve patient and caregiver outcomes. This article explores the challenges in understanding and defining 'early' specialist palliative care. It also examines the available evidence on early specialist palliative care interventions and their association with patient and caregiver outcomes. Finally, recommendations for future direction of research and practice are discussed.

Preliminary results of a randomized controlled trial of early integration of specialist palliative care within a tertiary cancer center in the Czech Republic.

113 Background: Clinical trials in the U.S. and Canada have shown the benefit for patients and the health care system of early integration of palliative care into oncological practice. Nevertheless the practical realisation and the timing of this integration may be controversial. The optimal model of specialist palliative care (SPC) involvement may depend on the quality of standard cancer care in the given country. Methods: We present preliminary results of a randomised controlled trial of early integration of SPC conducted in the largest tertiary cancer center in Czech Republic. The trial compares standard oncology care with integrated SPC to standard oncology care alone in patients with advanced solid tumors treated with palliative antineoplastic therapy. The design of the study is inspired by the study of early PC for patients with advanced NSCLC byTemel et al. (2010). The SPC intervention consists of consultations with palliative care team every 6 weeks. Outcomes assessed at baseline and at 3 and 6 months after enrollment are quality of life (EORTC-QoL-Q30), anxiety and depression (HADS) and structure and cost of end of life care. Results: 100 patients have been randomisd between September 2015 and January 2017 (integrated PC 51 pts, conotrole 49pts). There were differences at 3 and 6 months in QoL (66% vs. 55%, p > 0,05; 63% vs. 49% p > 0,05), prevalence of anxiety (37% vs. 43%, p > 0,05; 32% vs. 54%, p > 0,05) and depression (19% vs. 29% p = 0,02; 20% vs. 27% p > 0,05) in intergated and control arm respectively. The mean time from the last chemotherapy to death was 66 days vs.52 days (p = 0,04) and the enrollment rate to hospice programme was 63% vs. 43% (p = 0,02) at the end of life in favour of integrated palliative care. Conclusions: There seem to be a trend for better results in patient reported outcomes and reasonable resource utilisation in favour of integrated care model in the context of advanced cancer care in Czech Republic. But differences between study arms did not reach statistical significance in patient reported outcomes, probably due to small number of patients. We hope to enrol enough patients within next 6 months to overcome this limitation.

Normalising and planning for death in residential care: findings from a qualitative focus group study of a specialist palliative care intervention

BackgroundImproving access to palliative care for older adults living in residential care is recognised internationally as a pressing clinical need. The integration of specialist palliative care in residential care for...

Integration of Early Specialist Palliative Care in Cancer Care and Patient Related Outcomes: A Critical Review of Evidence.

Introduction:World Health Organization and American Society of Clinical Oncology recommend early integration of specialist palliative care in patients with cancer. This paper focuses on critical review of evidence on integration of early specialist palliative care in cancer care and patient-related outcomes.Methods:The question for the literature search was – Does integration of early specialist palliative care in cancer care influences patient-related outcomes? 31 articles related to literature search review question were included in this paper.Results:Ten patient-related outcomes of early specialist palliative care in adult cancer care was studied. Studies by Temel et al. (2012), Bakitas et al. (2009), Zimmermann et al. (2014), Rugno et al. (2014), Lowery et al. (2013) and Walker et al. (2014) showed early specialist palliative care improves health-related quality of life (HRQOL). Studies by Pirl et al. (2012), Lowery et al. (2013), and Walker et al. (2014) showed early specialist palliative care improved mood depression and anxiety. Studies by Zimmermann et al. and Rugno et al. (2014) showed symptom control benefit of early specialist palliative care. Studies by Temel (2010), Bakitas (2015) and Rugno et al. (2014) showed survival improvement with early specialist palliative care. All these studies were carried in ambulatory palliative care setting. No survival benefit of palliative care intervention was seen in inpatient palliative care setting. The studies by Geer et al. (2012), Rugno et al. (2014), and Lowery et al. (2013) showed that early palliative care intervention positively influences treatment decision making. All the studies showed that palliative care intervention group received less intravenous chemotherapy in last few weeks of life. Studies by Yoong et al. and Temel et al. (2011) shows early specialist palliative care improves advanced care planning. Studies by Temel et al. (2010), Greer et al. (2012), McNamara et al. (2013), Hui et al. (2014), and Kwon et al.(2013) showed that early specialist palliative care improves health care utilization, planned discharge, less emergency room visits, and better hospice utilization. Studies by Wiese et al. (2013), Hui et al. (2014) and Temel et al. (2010) showed that early specialist palliative care improves end-of-life care outcomes. Study by Rugno et al. (2014) showed that early specialist palliative care improves health-related communication. Studies by Wallen et al. (2012) and Zimmermann et al. (2014) shows early specialist palliative care improves patient and family satisfaction. There is a lack of robust evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies have demonstrated few negative outcomes of early specialist palliative care intervention.Conclusions:In adult oncology, there is evidence to suggest early specialist palliative care improves HRQOL, mood, treatment decision-making, health care utilization, advanced care planning, patient satisfaction, and end-of-life care. There is moderate evidence to support the role of early specialist palliative care intervention in improvement of symptoms, survival, and health-related communication. There is limited evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies on barriers and negative patient outcomes may provide useful insights toward restructuring early specialist palliative care interventions.

Specialist palliative care services for adults with advanced, incurable illness in hospital, hospice, or community settings--protocol for a systematic review.

BackgroundSpecialist palliative care (SPC) interventions aim to relieve and prevent suffering in the physical, psychological, social, and spiritual domain. Therefore, SPC is carried out by a multi-professional team with different occupations (e.g., physician, nurse, psychologist, and social worker). Remaining skepticism concerning the need for SPC may be based on the scarcity of high-quality evaluations about the external evidence for SPC. Therefore, we will conduct a systematic review according to Cochrane standards to examine the effects of SPC for adults with advanced illness.Methods/designThe comprehensive systematic literature search will include randomized controlled trials (RCTs) and cluster RCTs. We will search the databases MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL), and PsycINFO.Patients must be adults suffering from life-limiting diseases. Proxy and caregiver outcomes will not be assessed in order to ensure a clear and well-defined research question for this review. Interventions may be in an in- or outpatient setting, e.g., consulting service, palliative care ward, and palliative outpatient clinic. In line with the multi-dimensional scope of palliative care, the primary outcome is quality of life (QoL). Key secondary outcomes are patients’ symptom burden, place of death and survival, and health economic aspects. Subgroup analysis will assess results according to cancer type, age, early vs not early SPC, site of care, and setting.Analysis will be performed with the current RevMan software. We will use the Cochrane Collaboration risk of bias assessment tool. The quality of evidence will be judged according to the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach.DiscussionThe available evidence will be summarized and discussed to provide a basis for decision-making among health care professionals and policy makers. For SPC, we believe that multi-professional care is of utmost importance. Therefore, single-profession interventions such as physician consultations will not be included. Based on the multi-dimensional scope of palliative care, we chose QoL as the primary outcome, despite an expected heterogeneity among the QoL outcomes. We consider unidimensional endpoints such as “pain” for the physical domain to be inadequate for capturing the true scope of (S)PC (i.e., QoL) as defined by the World Health Organization.Systematic review registrationPROSPERO CRD42015020674Electronic supplementary materialThe online version of this article (doi:10.1186/s13643-015-0121-4) contains supplementary material, which is available to authorized users.

Challenges in defining ‘palliative care’ for the purposes of clinical trials

Palliative care has become part of mainstream medicine with increasing evidence about the effectiveness of specialist palliative care (SPC) on patient and family outcomes. Comparison of studies testing SPC interventions is challenging as types of interventions and reporting of components of the intervention vary. In consequence, study results are difficult to interpret. There is a continuous lack of clarity in palliative care definitions. For clinical trials, multidisciplinary care, supportive care documentation, symptom assessment and symptom management are suggested as key domains. In recent studies testing palliative care as an intervention SPC physicians and palliative care nurses were core members of multiprofessional teams, but integration of other team members varied. Management of symptoms and psychosocial issues were central to SPC with various other areas described. Services were delivered by hospital and community support teams, in palliative care units, outpatient clinics and hospital. Cost information was only provided by a few studies. Due to the lack of an agreed definition of palliative care and heterogeneity in reporting of components of an SPC intervention comparison of studies remains challenging. Key aspects of palliative care interventions are incurable disease, multidisciplinary approach, focus on symptom management including standardized assessment, psychosocial and family support, and (advance) care planning. Detailed information about all aspects of the intervention should be provided.

Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care.

This study aimed to define and prioritize the need for specialist palliative care (SPC) in cancer outpatient clinics. A validated assessment tool, the Symptoms and Concerns Checklist, was used to determine the prevalence and severity of symptoms and concerns. The checklist was completed by 480 outpatients with a cancer diagnosis. Sixty patients from each of eight primary tumour groups (lung, breast, gastrointestinal, gynaecological, urological, head and neck, brain and lymphoma) were recruited. The majority of patients (over 90%) rated 27 of the 29 checklist items, reporting a mean of 10 items as current problems. The influences of disease site and status, demographic factors and treatment on the number and type of symptoms and concerns reported were investigated. The highest number of symptoms and concerns and most severe problems were reported by patients with lung cancer, followed by those with brain tumours; the lowest by those with lymphoma and urological tumours. A high proportion of patients (83%) reported one or more items likely to benefit from SPC intervention. The results of this study suggest an extensive need for better symptom control in all cancer outpatients and in centres where SPC resources are limited, priority could be given to patients attending lung and brain tumour clinics.