Acceptability of automatic referrals to supportive and palliative care by patients living with advanced lung cancer: qualitative interviews and a co-design process.

PURPOSE: Timely access to supportive and palliative care (PC) remains a challenge. A proposed solution is to trigger an automatic referral process to PC by pre-determined clinical criteria. This study sought to co-design with patients and providers an automatic PC referral process for patients newly diagnosed with stage IV lung cancer. METHODS: In Step 1 of this work, nine one on one phone interviews were conducted with advanced lung cancer patients on their perspectives on the acceptability of phone contact by a specialist PC provider triggered by an automatic referral process. Interviews were thematically analysed. Step 2: Patient advisors, healthcare providers (oncologists, nurses from oncology and PC, clinical social worker, psychologist), and researchers were invited to join a working group to provide input on the development and implementation of the automatic referral process. The group met biweekly (virtually) over the course of six months. RESULTS: From interviews, the concept of an automatic referral process was perceived to be acceptable and beneficial for patients. Participants emphasized the need for timely support, access to peer and community resources. Using these findings, the co-design working group identified eligibility criteria for identifying newly diagnosed stage IV lung cancer patients using the cancer centre electronic health record, co-developed a telephone script for specialist PC providers, handouts on supportive care, and interview and survey guides for evaluating the implemented automatic process. CONCLUSION: A co-design process ensures stakeholders are involved in program development and implementation from the very beginning, to make outputs relevant and acceptable for stage IV lung cancer patients.

Colorectal Cancer Patients' Reported Frequency, Content, and Satisfaction with Advance Care Planning Discussions.

(1) Background: This observational cohort study describes the frequency, content, and satisfaction with advance care planning (ACP) conversations with healthcare providers (HCPs), as reported by patients with advanced colorectal cancer. (2) Methods: The patients were recruited from two tertiary cancer centers in Alberta, Canada. Using the My Conversations survey with previously validated questions, the patients were asked about specific ACP elements discussed, with which HCPs these elements were discussed, their satisfaction with these conversations, and whether they had a goals of care designation (GCD) order. We surveyed and analyzed data from the following four time points: enrollment, months 1, 2, and 3. (3) Results: In total, 131 patients were recruited. At enrollment, 24% of patients reported discussing at least one ACP topic. From enrollment to month 3, patients reported a high frequency of discussions (80.2% discussed fears, 71.0% discussed prognosis, 54.2% discussed treatment preferences at least once); however, only 44.3% of patients reported discussing what is important to them in considering health care preferences. Patients reported having ACP conversations most often with their oncologists (84.7%) and cancer clinic nurses (61.8%). Patients reported a high level of satisfaction with their ACP conversations, with over 80% of patients reported feeling heard and understood. From enrollment to month 3, there was an increase in the number of patients with a GCD order from 53% to 74%. (4) Conclusions: Patients reported more frequent conversations compared to the literature and clinical documentation. While the satisfaction with these conversations is high, there is room for quality improvement, particularly in eliciting patients' personal goals for their treatment.

Association between Goals of Care Designation orders and health care resource use among seriously ill older adults in acute care: a multicentre prospective cohort study.

BACKGROUND: The Goals of Care Designation (GCD) is a medical order used to communicate the focus of a patient's care in Alberta, Canada. In this study, we aimed to determine the association between GCD type (resuscitative, medical or comfort) and resource use during hospitalization. METHODS: This was a prospective cohort study of newly hospitalized inpatients in Alberta conducted from January to September 2017. Participants were aged 55 years or older with chronic obstructive pulmonary disease, congestive heart failure, cirrhosis, cancer or renal failure; aged 55-79 years and their provider answered "no" to the "surprise question" (i.e., provider would not be surprised if the patient died in the next 6 months); or aged 80 years or older with any acute condition. The exposure of interest was GCD. The primary outcome was health care resource use during admission, measured by length of stay (LOS), intensive care unit hours, Resource Intensity Weights (RIWs), flagged interventions and palliative care referral. The secondary outcome was 30-day readmission. Adjusted regression analyses were performed (adjusted for age, sex, race and ethnicity, Clinical Frailty Scale score, comorbidities and city). RESULTS: We included 475 study participants. The median age was 83 (interquartile range 77-87) years, and 93.7% had a GCD at enrolment. Relative to patients with the resuscitative GCD type, patients with the medical GCD type had a longer LOS (1.42 times, 95% confidence interval [CI] 1.10-1.83) and a higher RIW (adjusted ratio 1.14, 95% CI 1.02-1.28). Patients with the comfort and medical GCD types had more palliative care referral (comfort GCD adjusted relative risk (RR) 9.32, 95% CI 4.32-20.08; medical GCD adjusted RR 3.58, 95% CI 1.75-7.33) but not flagged intervention use (comfort GCD adjusted RR 1.06, 95% CI 0.49-2.28; medical GCD adjusted RR 0.98, 95% CI 0.48-2.02) or 30-day readmission (comfort GCD adjusted RR 1.00, 95% CI 0.85-1.19; medical GCD adjusted RR 1.05, 95% CI 0.97-1.20). INTERPRETATION: Goals of Care Designation type early during admission was associated with LOS, RIW and palliative care referral. This suggests an alignment between health resource use and the focus of care communicated by each GCD.

Oncology Clinicians' Challenges to Providing Palliative Cancer Care-A Theoretical Domains Framework, Pan-Cancer System Survey.

Despite the known benefits, healthcare systems struggle to provide early, integrated palliative care (PC) for advanced cancer patients. Understanding the barriers to providing PC from the perspective of oncology clinicians is an important first step in improving care. A 33-item online survey was emailed to all oncology clinicians working with all cancer types in Alberta, Canada, from November 2017 to January 2018. Questions were informed by Michie's Theoretical Domains Framework and Behaviour Change Wheel (BCW) and queried (a) PC provision in oncology clinics, (b) specialist PC consultation referrals, and (c) working with PC consultants and home care. Respondents (n = 263) were nurses (41%), physicians (25%), and allied healthcare professionals (18%). Barriers most frequently identified were "clinicians' limited time/competing priorities" (64%), "patients' negative perceptions of PC" (63%), and clinicians' capability to manage patients' social issues (63%). These factors mapped to all three BCW domains: motivation, opportunity, and capability. In contrast, the least frequently identified barriers were clinician motivation and perceived PC benefits. Oncology clinicians' perceptions of barriers to early PC were comparable across tumour types and specialties but varied by professional role. The main challenges to early integrated PC include all three BCW domains. Notably, motivation is not a barrier for oncology clinicians; however, opportunity and capability barriers were identified. Multifaceted interventions using these findings have been developed, such as tip sheets to enhance capability, reframing PC with patients, and earlier specialist PC nursing access, to enhance clinicians' use of and patients' benefits from an early PC approach.

Efficacy of Advance Care Planning Videos for Patients: A Randomized Controlled Trial in Cancer, Heart, and Kidney Failure Outpatient Settings.

BACKGROUND: Patient videos about advance care planning (ACP; hereafter "Videos"), were developed to support uptake of provincial policy and address the complexity of patients' decision-making process. We evaluate self-administered ACP Videos, compare the studies' choice of outcomes, show correlations between the patients' ACP actions, and discuss implications for health care policy. OBJECTIVE: To test the efficacy of the Videos on patients' ACP/goals of care designation conversations with a health care provider. DESIGN, SETTING, AND PARTICIPANTS: Using a 2-arm, 1:1 randomized controlled trial, we recruited outpatients with a diagnosis of kidney failure, heart failure, metastatic lung, gastrointestinal, or gynecological cancer from 22 sites. Analysis followed the intention-to-treat principle. INTERVENTIONS: Videos describing the ACP process and illustrating the resuscitative, medical, and comfort levels of care. MAIN OUTCOMES AND MEASURES: The primary outcome was the proportion of participants who reported having an ACP/goals of care designation (GCD) conversation with a health care provider by 3 mo. Outcomes were measured using the Behaviours in Advance Care Planning and Actions Survey, an online survey capturing ACP attitudes, processes, and actions. RESULTS: We analyzed 241 and 217 participants at baseline and 3 mo, respectively. The proportion of participants who had an ACP/GCD conversation with a health care provider by 3 mo was significantly different between study arms (46% intervention; 32% control; adjusted odds ratio, 1.83; P = 0.032). Adjusted for the quality of conversations, there was no significant difference. CONCLUSIONS: Videos as stand-alone tools do not engage individuals in high-quality ACP. Pragmatic trials are necessary to evaluate their impact on downstream outcomes when integrated into intentional, comprehensive conversations with a health care provider. Considering the strong correlation between 2 activities (physicians discussing options, patients telling health care providers preferences), policy should focus on empowering patients to initiate these conversations.

Perspectives on advance care planning in haematopoietic stem cell transplantation: a qualitative study.

BACKGROUND: Advance care planning (ACP) engagement and completion of advance directives remain low in patients undergoing haematopoietic stem cell transplantation, despite the high risk of treatment-related mortality. AIM: To understand the barriers to and facilitators of ACP in haematopoietic stem cell transplantation. METHODS: This qualitative study used interpretive description methodology. The researchers conducted audio-recorded semi-structured interviews with participants. The constant comparative method was used to analyse data. RESULTS: A total of six patients, five family members and eight clinicians participated in the study. Perceived barriers to ACP included: lack of time, lack of process, lack of understanding of disease/treatment and ACP, need to keep positive and prognostic uncertainty. Potential facilitators of ACP included: early and frequent discussion of ACP, incorporating ACP into routine care, involvement of the multidisciplinary team and framing discussions on ACP as positive. CONCLUSIONS: Haematopoietic stem cell transplantation poses unique challenges for patients, families and clinicians when it comes to ACP. Introducing advance care planning as part of standard care and providing ongoing facilitation of ACP, including discussion of disease and treatment expectations at the outset and when complications arise may assist patients and families in recognising how ACP can fit into and enhance their care.

Development of a rural palliative care program in the Calgary Zone of Alberta Health Services.

Specialized rural models of palliative care are greatly needed to address the challenges rural communities face in providing palliative care services and to ensure that their unique strengths and needs are considered. In late 2005, a Rural Palliative Care Program was developed to support primary care providers in delivering palliative care to patients in rural communities outside of Calgary, Alberta, Canada. The program was grounded in the needs of individual communities, incorporated integral roles for local champions, and adopted pre-existing, accepted rural structures and processes. Needs and gaps in rural palliative care service delivery were identified and prioritized. The following actions were taken to address the top six priorities: 1) more accessible palliative care education opportunities with a rural focus were provided to health care professionals; 2) linkages with rural and urban resources were strengthened and access to specialists and procedures was improved; 3) strategies were implemented to improve psychosocial support for patients and families; 4) resources were developed to facilitate rural home deaths; 5) opportunities were expanded for education and utilization of volunteers; and 6) a mobile specialist consultation team was developed to support rural health care professionals and their patients in their rural communities. In its first four years, the team consulted on 640 patients, nearly three-quarters of whom died in their rural communities. Rather than imposing an urban outreach strategy, the development of a rural-based program through respectful engagement of local providers has proven to be crucial to the success of this rural palliative care program.

Assessment of study quality for systematic reviews: a comparison of the Cochrane Collaboration Risk of Bias Tool and the Effective Public Health Practice Project Quality Assessment Tool: methodological research.

BACKGROUND: The Cochrane Collaboration is strongly encouraging the use of a newly developed tool, the Cochrane Collaboration Risk of Bias Tool (CCRBT), for all review groups. However, the psychometric properties of this tool to date have yet to be described. Thus, the objective of this study was to add information about psychometric properties of the CCRBT including inter-rater reliability and concurrent validity, in comparison with the Effective Public Health Practice Project Quality Assessment Tool (EPHPP). METHODS: Both tools were used to assess the methodological quality of 20 randomized controlled trials included in our systematic review of the effectiveness of knowledge translation interventions to improve the management of cancer pain. Each study assessment was completed independently by two reviewers using each tool. We analysed the inter-rater reliability of each tool's individual domains, as well as final grade assigned to each study. RESULTS: The EPHPP had fair inter-rater agreement for individual domains and excellent agreement for the final grade. In contrast, the CCRBT had slight inter-rater agreement for individual domains and fair inter-rater agreement for final grade. Of interest, no agreement between the two tools was evident in their final grade assigned to each study. Although both tools were developed to assess 'quality of the evidence', they appear to measure different constructs. CONCLUSIONS: Both tools performed quite differently when evaluating the risk of bias or methodological quality of studies in knowledge translation interventions for cancer pain. The newly introduced CCRBT assigned these studies a higher risk of bias. Its psychometric properties need to be more thoroughly validated, in a range of research fields, to understand fully how to interpret results from its application.

Effectiveness of knowledge translation interventions to improve cancer pain management.

CONTEXT: Cancer pain is prevalent, yet patients do not receive best care despite widely available evidence. Although national cancer control policies call for education, effectiveness of such programs is unclear and best practices are not well defined. OBJECTIVES: To examine existing evidence on whether knowledge translation (KT) interventions targeting health care providers, patients, and caregivers improve cancer pain outcomes. METHODS: A systematic review and meta-analysis were undertaken to evaluate primary studies that examined effects of KT interventions on providers and patients. RESULTS: Twenty-six studies met the inclusion criteria. Five studies reported interventions targeting health care providers, four focused on patients or their families, one study examined patients and their significant others, and 16 studies examined patients only. Seven quantitative comparisons measured the statistical effects of interventions. A significant difference favoring the treatment group in least pain intensity (95% confidence interval [CI]: 0.44, 1.42) and in usual pain/average pain (95% CI: 0.13, 0.74) was observed. No other statistical differences were observed. However, most studies were assessed as having high risk of bias and failed to report sufficient information about the intervention dose, quality of educational material, fidelity, and other key factors required to evaluate effectiveness of intervention design. CONCLUSION: Trials that used a higher dose of KT intervention (characterized by extensive follow-up, comprehensive educational program, and higher resource allocation) were significantly more likely to have positive results than trials that did not use this approach. Further attention to methodological issues to improve educational interventions and research to clarify factors that lead to better pain control are urgently needed.

Design and implementation of an online course on research methods in palliative care: lessons learned.

BACKGROUND: Research capacity in palliative and end-of-life care is less than some other fields of medicine where there is a longer track record of biomedical research. Palliative medicine clinicians often receive little or no formal research training during their postgraduate education; hence, education efforts may prove pivotal to increasing palliative care research capacity. To that end, our group established a national online training program on palliative care research methodologies, called Foundations of Palliative Care Research. This report describes the development and implementation of the course, and its evaluation. To inform decisions on the overall course objectives, length, design, and implementation, formal needs assessments were conducted through surveys of Canadian palliative medicine residency program directors and of Canadian palliative medicine residents. METHODS: A 12-week, online, module-based course was designed. The first iteration of the course was offered to English-speaking palliative medicine residents from across Canada between October 2008 and March 2009. The course utilized Web-based communication methods, and was delivered using a combination of asynchronous and synchronous learning strategies and activities. RESULTS: Ten palliative care residents from different parts of the country registered and all completed the course with passing marks. Participants evaluated the course through a post course survey. The formal evaluation of the course, along with successes, challenges, and lessons applicable to future ventures, are discussed.

Formal feasibility studies in palliative care: why they are important and how to conduct them.

The concept of clinical trial feasibility is of great interest to the community of palliative care researchers, clinicians, and granting agencies. Significant allocation of resources is required in the form of funding, time, intellect, and motivation to carry out clinical research, and understandably, clinical investigators, institutions, and granting agencies are disappointed when funded trials are unsuccessfully conducted. We argue that for many trials conducted in palliative care, the feasibility of conducting the proposed trial should be formally explored before implementation. There is substantial information available within the literature on the topic of study feasibility but no singular guide on how one can pragmatically apply this advice in the palliative care setting. We suggest that a Formal Feasibility Study for palliative care trials should be commonly conducted before development of a larger pivotal trial, to prospectively identify barriers to research, develop strategies to address these barriers, and predict whether the larger study is feasible. If a Formal Feasibility Study is not required, elements of feasibility can be specifically tested before launching clinical trials. The purpose of this article is to offer a draft framework for the design and conduct of a Formal Feasibility Study that, if implemented, could concretely support successful completion of high-quality research in a timely fashion. Additionally, we hope to foster dialogue within the palliative care research community regarding the relevance of establishing feasibility before initiation of definitive trials in the palliative care population.

Can the global uptake of palliative care innovations be improved? Insights from a bibliometric analysis of the Edmonton Symptom Assessment System.

Clinical research is undertaken to improve care for palliative patients, but little is known about how to support the broad uptake of resultant innovations. The objectives of this paper are to: (1) explore the uptake of the Edmonton Symptom Assessment System throughout the global palliative care community through the lens of a bibliometric review - a research method that maps out the journey of new knowledge uptake by evaluating where key articles are cited in published literature; (2) construct hypotheses on attributes of the global community of palliative care learners; and (3) make inferences on approaches that could improve knowledge transfer. While preliminary, results of the study suggest several specific approaches that could support widespread uptake of innovations in palliative care: targeting publication in high impact, international journals; explicitly focusing on how the innovation is applied to best practice; encouraging additional research to expand on early studies; consciously targeting key professional groups and organizations to promote discussion in the grey literature; and early translation and promotion within multiple languages.

A formal feasibility study of sublingual methadone for breakthrough cancer pain.

We conducted a feasibility study of sublingual methadone for breakthrough cancer pain, to determine whether a larger, randomized trial was warranted, and to identify a study design that would be likely to succeed. From approximately 1930 patients in the initial pool, nine patients were enrolled. Five patients completed the study, generating data on 83 discrete episodes of breakthrough cancer pain at optimal dose. Mean pain intensity dropped by 1.7 points (on a 10 point numerical scale) within 10 min of sublingual methadone administration, and by 3.2 points after 15 min. No serious or severe toxicity was encountered. Based on the results of this feasibility study, a larger randomized clinical trial of sublingual methadone for breakthrough cancer pain using this trial model would not be successful. Extensive information obtained from small numbers of carefully studied patients provides proof of concept that sublingual methadone is effective, safe, and well tolerated.

Clinical trials focusing on cancer pain educational interventions: core components to include during planning and reporting.

CONTEXT: Robust recommendations on the reporting of methods and results of clinical trials such as therapeutic intervention trials are widely used, such as the Consolidated Standards of Reporting Trials (CONSORT) recommendation. There has not been agreement on analogous publication standards for educational intervention trials, making interpretation of educational intervention studies difficult. OBJECTIVES: The purpose of this report is to describe common deficiencies in reporting of educational intervention trials for cancer pain control, and to offer suggestions for authors to consider as they plan their studies, and report and publish research findings for educational interventions that use randomized controlled trials and other educational trial methodologies. METHODS: A systematic review of published knowledge translation intervention trials intended to improve cancer pain was undertaken, of which most were educational interventions. RESULTS: Many educational intervention clinical trials designed to improve management of cancer pain appeared methodologically weak, and their results were more difficult to interpret because of reporting deficiencies. In the course of the review, patterns of deficiencies in reporting of methods and trial results were documented. Deficiencies in reporting were compared with the CONSORT recommendations for reporting clinical trials, and parallel recommendations were drafted for educational intervention trials. Patterns of deficiency in reporting cancer pain educational intervention trials were synthesized into seven domains, generically applicable to a range of study designs. Draft recommendations intended to address these deficiencies were constructed to improve communication of educational research results. CONCLUSION: Development of a standardized reporting template for clinical trials in cancer pain educational interventions could advance knowledge transfer research and thereby increase effectiveness of national and international cancer control policy designed to support cancer pain control.

The potential for treatment with dietary long-chain polyunsaturated n-3 fatty acids during chemotherapy.

Dietary intake of long-chain omega-3 (or n-3) polyunsaturated fatty acids (PUFA), eicosapentaenoic acid (EPA), and docosahexaenoic acid (DHA) can affect numerous processes in the body, including cardiovascular, neurological and immune functions, as well as cancer. Studies on human cancer cell lines, animal models and preliminary trials with human subjects suggest that administration of EPA and DHA, found naturally in our diet in fatty fish, can alter toxicities and/or activity of many drugs used to treat cancer. Multiple mechanisms are proposed to explain how n-3 PUFA modulate the tumor cell response to chemotherapeutic drugs. n-3 PUFA are readily incorporated into cell membranes and lipid rafts, and their incorporation may affect membrane-associated signaling proteins such as Ras, Akt and Her-2/neu. Due to their high susceptibility to oxidation, it has also been proposed that n-3 PUFA may cause irreversible tumor cell damage through increased lipid peroxidation. n-3 PUFA may increase tumor cell susceptibility to apoptosis by altering expression or function of apoptotic proteins, or by modulating activity of survival-related transcription factors such as nuclear factor-kappaB. Some studies suggest n-3 PUFA may increase drug uptake or even enhance drug activation (e.g., in the case of some nucleoside analogue drugs). Further research is warranted to identify specific mechanisms by which n-3 PUFA increase chemotherapy efficacy and to determine the optimal cellular/membrane levels of n-3 PUFA required to promote these mechanisms, such that these fatty acids may be prescribed as adjuvants to chemotherapy.

Assessment and management of breakthrough pain in cancer patients: current approaches and emerging research.

Cancer pain is highly prevalent and often severe. Fortunately, most cancer pain can be readily managed, with up to 90% of patients responding well to standard interventions. However, breakthrough cancer pain-brief flares of severe pain superimposed on baseline pain-is common, difficult to manage, and often negatively impacts patients' quality of life. Breakthrough cancer pain is traditionally managed with oral, immediate-release opioids. However, because of its sudden onset and severity, oral opioids often fall short of providing adequate control. Research into novel approaches to pain management has identified several innovative strategies for this difficult cancer pain problem. We describe current approaches to assess, define, characterize, and treat breakthrough cancer pain, and summarize recent clinical research on novel agents, novel routes of drug delivery, and other advances in its management.

The Alberta Breakthrough Pain Assessment Tool for cancer patients: a validation study using a delphi process and patient think-aloud interviews.

Breakthrough pain is a prevalent cancer pain syndrome, and research is needed to identify more effective interventions to manage it. A validated tool to assess breakthrough pain in a standard and reliable manner is urgently needed to support the conduct of clinical trials in breakthrough pain. To address this need, we developed a breakthrough pain assessment tool for research purposes. The current study was undertaken to gather validity evidence for this breakthrough pain assessment tool, using a Delphi process involving an expert panel review, followed by a think-aloud process involving patients with cancer-related breakthrough pain. Two expert panels were formed: a national panel (within Canada; n=16) and an international panel (including experts from North America, UK, Europe, the Middle East, Australia, and New Zealand; n=22). Each panel participated in one anonymous survey round. Response rates were 56% (national panel) and 73% (international panel). The Delphi process revealed substantial consensus on the content of the tool, which increased between rounds of review. The overall level of agreement with the tool, averaged over the four evaluated aspects of all items, was 80% among national panelists and 88% among international panelists. Nine patients completed the think-aloud study. They were able to understand and complete the tool and provided specific direction on its improvement. The validity evidence gathered in this study suggests the Alberta Breakthrough Pain Assessment Tool is conceptually grounded and is understandable by patients and clinicians. Further validation of this tool as an assessment measure within clinical trials research is warranted.

Applying the Delphi process to palliative care tool development: lessons learned.

BACKGROUND: The Delphi technique is an effective method for collecting and synthesizing informed opinions on a highly focused task, from a diverse group of experts who have specialized knowledge in an area of interest. This method has been successfully applied to palliative care research but not commonly to palliative care tool development. The Delphi technique has recently been employed in the development of two palliative pain assessment tools: the Edmonton Classification System for Cancer Pain (ECS-CP) and the Alberta Breakthrough Pain Assessment Tool for Research (ABPAT-R). AIMS: The purpose of this paper is to: (a) report on our experience of using the Delphi technique for gathering validity evidence for the ECS-CP and ABPAT-R; (b) identify challenges in using this technique including sampling, study and survey design, consensus setting and response rates; and (c) suggest approaches that can add to its effectiveness in national and international collaborations in palliative care instrument development and research. CONCLUSIONS: Depending on the design, the Delphi technique can facilitate national or international cooperation both asynchronously (e.g., with mail-out or electronic surveys) and synchronously (e.g., with face-to-face meetings or videoconferencing). International input can assure palliative care tools are relevant in diverse clinical settings and practice cultures. The use of the Delphi technique in palliative care tool development may thereby facilitate international collaborations, rapid knowledge transfer, and effective uptake of novel tools across diverse palliative care settings.