An interdisciplinary and collaborative initiative in palliative care research

Outpatient Clinics Are a New Frontier for Palliative Care

Russia: The State-of-the-Art of Palliative Care

Palliative care (PC) education and research are essential to developing a skilled workforce and evidence base to support the delivery of quality cancer care. The current state of PC education and research at US cancer centers is unclear. In this national survey, the education and research programs of the National Cancer Institute (NCI)-designated and nondesignated cancer centers and the changes between 2009 and 2018 are compared. Between April and August 2018, PC program leaders at all NCI-designated cancer centers and a random sample of nondesignated centers were sent a survey to examine the structure, processes, and outcomes of their programs on the basis of questions from a 2009 national survey. This preplanned analysis focused on education and research. There were 52 of 61 (85%) NCI-designated and 27 of 38 (71%) nondesignated cancer centers that responded. NCI-designated centers were more likely than nondesignated centers to have a PC fellowship program (87% vs 30%; P < .001), training for advanced practice providers (71% vs 44%; P = .03), PC research program (58% vs 15%; P < .001), peer-reviewed funding (43% vs 11%; P = .005), and philanthropic grants (41% vs 7%; P = .002). There were few significant improvements in PC education or research between 2009 and 2018 for both groups, notable exceptions include an increase in PC fellowships (38% vs 87%; P < .001) and mandatory PC rotations for medical oncology fellows (29% vs 55%; P = .02) at NCI-designated cancer centers. PC education and research are more developed at NCI-designated cancer centers. Despite some progress over the past decade, it is relatively slow and suboptimal.

National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for Quality Palliative Care, Executive Summary

Palliative Care Research: Issues and Opportunities

Editorial introductions

Journal of Palliative MedicineVol. 12, No. 3 Guest EditorialThe Culture of Research in Palliative Care: You Probably Think This Song Is About YouHarvey Max ChochinovHarvey Max ChochinovSearch for more papers by this authorPublished Online:2 Mar 2009https://doi.org/10.1089/jpm.2009.9662AboutSectionsPDF/EPUB ToolsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail FiguresReferencesRelatedDetailsCited BySymptom Control Trials in Patients With Advanced Cancer: A Qualitative StudyJournal of Pain and Symptom Management, Vol. 50, No. 5The integration of a person-centered approach in palliative care7 February 2013 | Palliative and Supportive Care, Vol. 11, No. 6‘It makes me feel that I’m still relevant’: A qualitative study of the views of nursing home residents on dignity therapy and taking part in a phase II randomised controlled trial of a palliative care psychotherapy15 June 2012 | Palliative Medicine, Vol. 27, No. 4 Volume 12Issue 3Mar 2009 InformationCopyright 2009, Mary Ann Liebert, Inc.To cite this article:Harvey Max Chochinov.The Culture of Research in Palliative Care: You Probably Think This Song Is About You.Journal of Palliative Medicine.Mar 2009.215-217.http://doi.org/10.1089/jpm.2009.9662Published in Volume: 12 Issue 3: March 2, 2009PDF download

Palliative Care Training for the Generalist A Luxury or A Necessity

The Willingness of Palliative Care Patients to Participate in Research

THE SPECIALTY OF PALLIATIVE CARE has experienced substantial growth and development over the past 10 years. Strong clinical palliative care programs are now firmly established in multiple settings and venues, education in palliative care has seen strong advances with increasing penetration of palliative care content in medical school and residency curricula and continuing medical and nursing education programs, a rigorous certifying board examination for physicians has been developed, and there has been steady growth in the number of physicians who are certified in palliative medicine. Whereas we can point to these many successes in palliative care, palliative care research remains relatively underdeveloped. The evidence base for much of what we do in clinical practice remains sparse compared to more established medical specialties and important research questions in palliative care have yet to be adequately addressed or answered. Dr. Storey’s poignant account of his difficulties in conducting high-quality rigorous research in palliative care—particularly his difficulty in conducting randomized controlled trials—is emblematic of the problems facing palliative care researchers. If we are to conduct high-quality research in palliative care (and indeed we must if the field is to advance), then our efforts must be focused equally on answering the important clinical questions of interest (the what) and on using the appropriate research instruments, designs, and analytic techniques (the how). In this article, we identify key challenges in each of these three research areas and discuss approaches to overcoming them.

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services.

The early successes of hospital- and community-based hospice and palliative care programs have led to rapid growth of these services over the past several decades.1,2 This widespread adoption is generally seen as a positive addition to the care of patients with complex illness. However, the growth in palliative care and hospice programs creates challenges for research, especially in the use of randomized controlled trial (RCT) designs, which are deemed the gold standard of research methods because of their ability to control for biases in the estimates of treatment effects. As Carlson and Morrison3 noted in their introduction to this research methods series, sometimes RCTs can be impossible to conduct due to inherent challenges in recruiting seriously ill participants, or may not be ethically appropriate in the absence of clinical equipoise. To date, observational studies have provided much of the evidence demonstrating the effectiveness of palliative care interventions on outcomes including pain and symptom management,4–9 communication between clinicians, patients, and families,10–13 patient and family satisfaction with care,8,14 and on reducing the costs of care while maintaining or improving quality.8,15–20 Observational studies have been criticized for their methodological weaknesses, yet it would be a mistake to dismiss their use as they have and will continue to offer important insights into the real world of hospice and palliative care.

Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.

Background: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK. Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the ‘right’ people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the ‘right’ people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.

Opioids, pain, and fear