Perspectives of hematology oncology clinicians about integrating palliative care in oncology

Patients with hematologic malignancies receive palliative care (pc) less frequently and later than patients with solid tumours. We compared survey responses of hematology oncology clinicians with other oncology clinicians to better understand their challenges with providing primary pc or using secondary pc. Patients’ negative perceptions of pc and limited time or competing priorities were challenges for all clinicians. Compared with other oncology clinicians, more hematology oncology clinicians perceived pc referral criteria as too restrictive (40% vs. 22%, p = 0.021) and anticipated that integrating pc supports into their practice would require substantial change (53% vs. 28%, p = 0.014). This study highlights barriers that may need targeted interventions to better integrate pc into the care of patients with hematologic malignancies.     

Recommendations for Palliative and Hospice Care in NCCN Guidelines for Treatment of Cancer

BackgroundIntegration of specialist palliative care into routine oncologic care improves patients’ quality of life and survival. National Comprehensive Cancer Network (NCCN) cancer treatment guidelines are instrumental in standardizing cancer care, yet it is unclear how palliative and hospice care are integrated in these guidelines. In this study, we examined the frequency of occurrence of “palliative care” and “hospice care” in NCCN guidelines and compared between solid tumor and hematologic malignancy guidelines.Materials and MethodsWe reviewed all 53 updated NCCN Guidelines for Treatment of Cancer. We documented the frequency of occurrence of “palliative care” and “hospice care,” the definitions for these terms if available, and the recommended timing for these services.ResultsWe identified a total of 37 solid tumor and 16 hematologic malignancy guidelines. Palliative care was mentioned in 30 (57%) guidelines (24 solid tumor, 6 hematologic). Palliative care was mentioned more frequently in solid tumor than hematologic guidelines (median, 2 vs. 0; p = .04). Among the guidelines that included palliative care in the treatment recommendation, 25 (83%) only referred to NCCN palliative care guideline. Specialist palliative care referral was specifically mentioned in 5 of 30 (17%) guidelines. Only 14 of 24 (58%) solid tumor guidelines and 2 of 6 (33%) hematologic guidelines recommended palliative care in the front line setting for advanced malignancy. Few guidelines (n = 3/53, 6%) mentioned hospice care.Conclusion“Palliative care” was absent in almost half of NCCN cancer treatment guidelines and was rarely discussed in guidelines for hematologic malignancies. Our findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.Implications for PracticeIntegration of specialist palliative care into routine oncologic care is associated with improved patient outcomes. National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology have an important role to standardize palliative care involvement for cancer patients. It is unclear how often palliative care referral is recommended in these guidelines. In this study involving 53 NCCN Guidelines for Treatment of Cancer, the researchers found that palliative care was not mentioned in over 40% of NCCN guidelines and was rarely discussed in guidelines for hematologic malignancies. These findings underscored opportunities to standardize timely palliative care access across NCCN guidelines.     

A Cross-Sectional Analysis of Ambulatory Oncology Experience by Treatment Intent

The Ambulatory Oncology Patient Satisfaction Survey (AOPSS) is a standardized instrument to assess the overall cancer patient experience. This study retrospectively investigated differences in care experiences and satisfaction among ambulatory oncology patients who self-identified as receiving outpatient therapies for curative intent or for symptom or disease control. This cross-sectional study analyzed data from the AOPSS collected between February and April 2019 within the provincial cancer program in Alberta, Canada. There were 2104 participants who returned the survey, representing a 52.7% response rate. This nationally validated survey gathers patient care experiences and satisfaction across six domains of person-centred care. Treatment intent was characterized by adding a new “goal of treatment” question. Statistical analysis was performed using Mann–Whitney U tests and analysis of covariance (ANCOVAs). Cancer patients’ treatment goals were found to be significantly associated with key patient characteristics like age, sex, tumour group, and the locations where they received care. Patients whose self-identified goal of treatment was to cure their cancer reported significantly higher levels of satisfaction and a more positive experience in five out of the six person-centred care domains. Results identify marked differences in satisfaction and experience between these two patient groups even though they both received care in the same ambulatory environments. A better understanding of the experience and satisfaction of non-curative cancer patients could allow for a more holistic and supportive approach to patient care. In addition, an early palliative approach to care is recommended for improved patient outcomes.     

CRAFT—A Proposed Framework for Decentralized Clinical Trials Participation in Canada

Canada’s vast geography, and centralized delivery of cancer care and clinical trials create barriers for trial participation for patients in remote and rural settings. The development and implementation of a framework that enables safe and regulatory compliant trial participation through local healthcare providers would benefit Canadian patients, clinicians, trial sponsors and the health care system. To address this issue, representatives of Canada’s cancer clinical trial community met to identify key challenges and develop recommendations for remote patient participation in trials. A structured literature review identified remote/rural trial delivery models. A panel of expert stakeholders reviewed the models and participated in a workshop to assess health system readiness, identify needed processes, tools and mechanisms, and develop recommendations for a Canadian framework for decentralized clinical trial conduct. The Canadian Remote Access Framework for clinical Trials (CRAFT) represents a risk-based approach used by site investigators to delegate responsibilities for a given trial to satellite health centres within a hub-and-spoke “trial cluster”. The Framework includes specific recommendations to ensure research experience, capacity, regulatory compliance and patient safety. Canada’s cancer care and telemedicine systems can be leveraged to enable broader access to clinical trials for patients who are geographically remote from cancer centres. CRAFT’s risk-based framework is based on other successful models of remote trial patient management and is in the pilot implementation phase in Canada.     

Attitudes and Beliefs Toward Supportive and Palliative Care Referral Among Hematologic and Solid Tumor Oncology Specialists

Background.

Palliative care (PC) referrals are often delayed for patients with hematologic malignancies. We examined the differences in attitudes and beliefs toward PC referral between hematologic and solid tumor specialists and how their perception changed with use of the service name “supportive care” (SC).

Materials and Methods.

We randomly surveyed 120 hematologic and 120 solid tumor oncology specialists at our tertiary care cancer center to examine their attitudes and beliefs toward PC and SC referral.

Results.

Of the 240 specialists, 182 (76%) responded. Compared with solid tumor specialists, hematologic specialists were less likely to report that they would refer symptomatic patients with newly diagnosed cancer to PC (solid tumor, 43% vs. hematology, 21%; p = .002). A significantly greater proportion of specialists expressed that they would refer a patient with newly diagnosed cancer to SC than PC (solid tumor specialists: SC, 81% vs. PC, 43%; p < .001; hematology specialists: SC, 66% vs. PC, 21%; p < .001). The specialists perceived that PC was more likely than SC to be a barrier for referral (PC, 36% vs. SC, 3%; p < .001), to be synonymous with hospice (PC, 53% vs. SC, 6%; p < .001), to decrease hope (PC, 58% vs. SC, 8%; p < .001), and to be less appropriate for treatment of chemotherapy side effects (PC, 64% vs. SC, 19%; p < .001). On multivariate analysis, female clinicians (odds ratio [OR], 4.5; 95% confidence interval [CI], 1.3-15.2; p = .02) and the perception that PC is a barrier for referral (OR, 3.0; 95% CI, 1.2-7.6; p = .02) were associated with PC referral if the service name “SC” was used.

Conclusion.

Hematologic specialists were less likely to refer patients early in the disease trajectory and were conducive to referral with the service name SC instead of PC.

Implications for Practice:

The present survey of oncology specialists found that hematologic specialists were less likely than solid tumor specialists to report that they would refer symptomatic patients with newly diagnosed cancer to palliative care. However, both groups were significantly more willing to refer patients early in the disease trajectory if the service name “supportive care” were used instead of “palliative care.” These findings suggest that rebranding might help to overcome the stigma associated with palliative care and improve patient access to palliative care services.     

“We’re on a Merry-Go-Round”: Reflections of Patients and Carers after Completing Treatment for Sarcoma

Sarcoma is a rare cancer that has a significant impact on patients’ and carers’ quality of life. Despite this, there has been a paucity of research exploring the diverse experiences of patients and carers following sarcoma treatment. The aim of this study was to explore patients’ and carers’ reflections on life after treatment for sarcoma. A qualitative research design with a social constructionist epistemology was used. Participants included patients previously treated for sarcoma (n = 21) and family carers of patients treated for sarcoma (n = 16). Participants completed semi-structured interviews which were analysed using thematic analysis. Three primary themes were identified: “This journey is never going to be over”, “But what happens when I am better?”, and finding a silver lining. Participants represented sarcoma as having a long-term, and sometimes indefinite, threat on their life that they had limited control over. Conclusions: This study highlight the heterogeneous and ongoing needs of sarcoma survivors and their families. Patients and carers strove to translate their experiences in a meaningful way, such as by improving outcomes for other people affected by sarcoma. Parental carers in particular attempted to protect the patient from the ongoing stress of managing the disease.     

Scout – sarcoidosis outcomes taskforce. A systematic review of outcomes to inform the development of a core outcome set for pulmonary sarcoidosis

Background:Clinical trials evaluating different management strategies for pulmonary sarcoidosis may measure different outcomes. This heterogeneity in outcomes can lead to waste in research due to the inability to compare and combine data. Core outcome sets (COS) have the potential to address this issue and here we describe a systematic review of outcomes as the first step in the development of a COS for pulmonary sarcoidosis research.Methods:A search of clinical trial registries for phase II, III and IV trials of pulmonary sarcoidosis was undertaken along with a rapid review of the patient perspective literature. Each study was screened for eligibility and outcomes extracted verbatim from the registry entry or publication then reviewed, grouped and categorised using the COMET taxonomy.Results:36 trial registry entries and 6 studies on patients’ perspective of pulmonary sarcoidosis were included reporting 56 and 82 unique outcomes respectively across 23 domains. The most frequently reported outcome domain was “respiratory, thoracic and mediastinal outcomes”. However, the patients’ perspective literature identified outcomes in the “personal circumstances” and “societal/carer burden” domains that were not reported in any of the included trial registrations.Conclusions:Using both clinical trial registry data and published literature on patients’ perspective has allowed rapid review of outcomes measured and reported in pulmonary sarcoidosis research. The use of multiple sources has led to the development of a comprehensive list of outcomes that represents the first step in the development of a COS for use in future pulmonary sarcoidosis research.     

Missing in Action: Reports of Interdisciplinary Integration in Canadian Palliative Care

Palliative care has an interdisciplinary tradition and Canada is a leader in its research and practice. Yet even in Canada, a full interdisciplinary complement is often lacking, with psychosocial presence ranging from 0–67.4% depending on the discipline and region. We sought to examine the most notable gaps in care from the perspective of Canadian palliative professionals. Canadian directors of palliative care programs were surveyed with respect to interdisciplinary integration. Participants responded in writing or by phone interview. We operationalized reports of interdisciplinary professions as either “present” or “under/not-represented”. The Vaismoradi, Turunen, and Bondas’ procedure was used for content analysis. Our 14 participants consisted of physicians (85.7%), nurses (14.3%), and a social worker (7.1%) from Ontario (35.7%), British Columbia (14.3%), Alberta (14.3%), Quebec (14.3%), Nova Scotia (14.3%), and New Brunswick (7.1%). Psychology and social work were equally and most frequently reported as “under/not represented” (5/14, each). All participants reported the presence of medical professionals (physicians and nurses) and these groups were not reported as under/not represented. Spiritual care and others (e.g., rehabilitation and volunteers) were infrequently reported as “under/not represented”. Qualitative themes included Commonly Represented Disciplines, Quality of Multidisciplinary Collaboration, Commonly Under-Represented Disciplines, and Special Concern: Psychosocial Care. Similar to previous reports, we found that (1) psychology was under-represented yet highly valued and (2) despite social work’s relative high presence in care, our participants reported a higher need for more. These finding highlight those psychosocial gaps in care are most frequently noted by palliative care professionals, especially psychology and social work. We speculate on barriers and enablers to addressing this need.     

Cancer Patients’ Experiences with Telehealth before and during the COVID-19 Pandemic in British Columbia

Background: Patients have had their cancer care either postponed or changed to telehealth visits to reduce exposure to COVID-19. However, it is unclear how these changes may have affected their experiences. We aim to identify patient characteristics that affect telehealth experiences and evaluate their preferences for using telehealth in the future. Methods: Patients who completed the Outpatient Cancer Care (OCC) Patient Experience Survey were invited to participate. They comepleted the modified OCC Survey, which focused on telehealth during the pandemic. Linear and logistic regression analyses were used to identify patient characteristics that influenced telehealth experiences and preferences for future telehealth use. Results: Perceived ease of participation in telehealth is a significant predictor of the change in patients’ ratings of their telehealth experience. We found that cancer patients had lower preferences for using telehealth in the future if they were older, female, or non-white; resided in an urban area; had no previous telehealth experience; had lower education; and had poorer mental health. Conclusions: To optimize cancer care and improve equitable access to high-quality telehealth care during the pandemic and beyond, clinicians and policymakers will need to consider patients’ self-reported experiences and their personal characteristics.     

Results of a Quantitative Survey to Explore Both Perceptions of the Purposes of Follow-up and Preferences for Methods of Follow-up Delivery Among Service Users,Primary Care Practitioners and Specialist Clinicians after Cancer Treatment

AimsTo ascertain perceptions of reasons for follow-up after cancer treatment among service users (patients and carers), primary care practitioners and specialist clinicians (doctors and specialist nurses) and to identify levels of preference for different models of follow-up and the effect of an individual’s experience on preferred models.Materials and methodsA national survey designed to meet the needs of each key respondent group was carried out after a structured literature review, an extensive consultation process and a pilot scheme. Respondents were asked to assess their degree of preference for 10 pre-selected indications for follow-up. Eight models of follow-up were also identified and respondents were asked to state their experience and preference for each type. The questionnaire was distributed nationally via the 34 cancer networks in England and was available both online and in hard copy (postal). The uptake for the electronic format was in the main by primary care practitioners and specialist clinicians. Service users preferred the paper (postal) format. The survey was also publicised through the primary care and patient partnership forums at a Cancer Network Development event.ResultsIn total, 2928 responses were received, comprising service users (21% of the sample), primary care practitioners (32%) and specialist clinicians (47%). Eighty-six per cent of responses were received from the 10 strategic health authorities in England, with the remaining 14% from Scotland, Wales and The Isle of Man. The responses from Scotland, Wales and the Isle of Man generally occurred where they interfaced with English cancer networks or had been engaged through word of mouth by colleagues. Among all respondents the main aims of cancer follow-up were considered to be: (1) to monitor for early complications after treatment; (2) to detect recurrences early; (3) to detect late effects of treatment. The most commonly experienced method of follow-up among all respondent groups was outpatient review with a doctor. This was considered to be the most preferred follow-up option among service users (86%). The least preferred option among service users was postal follow-up (32%). Primary care practitioners and specialist clinicians were more likely than service users to have experienced alternative methods of follow-up, such as telephone follow-up, self-triggered referral and non-specialist follow-up. These models were highly rated by those who had experience of them.ConclusionsThere was a reasonable level of consensus between service users, primary care practitioners and specialist clinicians as to the reasons for follow-up. Service users seemed to have higher expectations of follow-up, particularly in relation to detecting recurrences early. As respondents were more likely to prefer a method of follow-up delivery that they had experienced than one they had not; there could be resistance to change from established methods to new methods without adequate explanation. This suggests that the communication of new methods could be critical to their successful introduction.     

Confronting Oncologists’ Emotions

The best and worst part of practicing oncology is the attachment to patients. Without this attachment, the work would be unbearable and unsatisfying. With this attachment, however, comes the pain of loss when patients die, suffer from a disabling loss of function, experience a “bad death,” or run into therapeutic failure. Health care professionals must begin to address this tension between attachment to patients and the pain it brings.I was exceptionally pleased to read Morgans and Schapira’s [1] paper, “Confronting Therapeutic Failure: A Conversation Guide,” in The Oncologist.As the authors document, the oncologist’s awareness of patient affect has been associated with increased patient satisfaction and better care. This point has been well documented in the medical literature, but what made Morgans and Schapira’s [1] paper innovative is the recognition that oncologists’ awareness of their own emotional responses to patients is crucially important in ensuring good quality patient care, particularly around end-of-life communication. This is a conversation that oncologists urgently need to be having. A recent study found, for example, that many patients do not receive the care they want at end of life due to lack of communication with the physician about their preferences [2]. The study found that patients who relied on designated health care proxies (compared with those who had end-of-life conversations with the physician) were frequently treated with aggressive interventions at end of life [2].In addition, my own research corroborates the authors’ views about the importance of acknowledging oncologists’ emotional reactions in clinical practice in the context of patient care. My work looked at oncologists’ responses to patient death in Canadian and Israeli adult and pediatric oncologists using mixed methods [3–12]. What was common across the patient populations and cultures was that the grief that resulted when patients died included emotional, physical, and cognitive symptoms. This grief had an impact on oncologists’ personal and professional lives, including affecting decisions about patient care and withdrawing emotionally and sometimes physically from patients at end of life. In essence, although this research examined grief in response to patient loss, the subtext of these studies is looking at relationships and attachments to patients. To my knowledge, Morgans and Schapira [1] are some of the few clinicians to openly acknowledge the issue of attachment in the context of patient communication. Their paper magnifies what all oncologists know and what my participants consistently tell me: the best and worst part of practicing oncology is the attachment to patients. Without this attachment, the work would be unbearable and unsatisfying. With this attachment, however, comes the pain of loss when patients die, suffer from a disabling loss of function, experience a “bad death,” or run into therapeutic failure.Morgans and Schapira’s [1] paper can serve as a catalyst for all oncologists and health care professionals to begin addressing this tension between attachment to patients and the pain that comes when they die or suffer. As the authors suggest, the SPIKES (setting, perception, invitation for information, knowledge, empathy, summarize and strategize) model, a patient-centered communication protocol for delivering bad news, can be an effective strategy for oncologists to use when facing this emotional labor in their work. In addition, given the significant challenges of dealing with physician emotion in the oncology context, oncologists need education and training about how to manage emotional responses throughout their careers. Such education would provide oncologists with both the necessary skills to deal with patient death and validation that these feelings are normal, expected, and part of the work involved with caring for oncology patients.     

A Catalyst for Change: The European Cancer Patient’s Bill of Rights

The European Cancer Concord is a unique patient-centered partnership that will act as a catalyst to achieve improved access to an optimal standard of cancer care and research for European citizens. In order to provide tangible benefits for European cancer patients, the partnership proposes the creation of a “European Cancer Patient’s Bill of Rights,” a patient charter that will underpin equitable access to an optimal standard of care for Europe’s citizens.     

Toward Eubiosia: Bridging Oncology and Palliative Care

How can oncologists approach patients with advanced and progressive cancer and yet not rob them of hope? In this edition of The Oncologist, four articles lend context to the issues regarding the bridge between palliative care and oncology.Open in a separate windowDon S. DizonShe wasn’t my patient, but she was my friend. When she was diagnosed with breast cancer, I had to put aside the fact that I was an oncologist so I could support her. We talked about meetings with her doctors and what they said. She was very comfortable with her team, and the treatment plan laid out for her made sense to us both.Over the next few months she underwent neoadjuvant chemotherapy, bilateral mastectomies, postmastectomy radiation therapy. Then she was deemed to be in remission. Unfortunately, within 18 months, she had developed metastatic disease. Again, acting as friend and not as doctor, I quietly listened as she spoke of trying to remain hopeful but of fearing the future—what would become of her boys, her mother, her husband. She wanted to live, but she also knew the odds of her living more than a few years were not good.As months passed, treatment took its toll on her, and I wondered if her team talked with her about palliative care. She would tell me only of the next treatment planned and what the latest computed tomography scan showed. The conversations she had had with her doctors, as she related them to me, never seemed to touch on the elephant that was very clearly in that room.This situation illustrates a dilemma for many oncologists. How do we approach patients with advanced and progressive cancer and yet not rob them of hope? In addition, although there is widespread agreement that early integration of palliative care is important, the barriers that exist for oncology clinicians and their patients are ever present.In this edition of The Oncologist, four articles lend context to the issues regarding the bridge between palliative care and oncology. Hui et al. present a systematic review showing the lack of a universal definition of what, exactly, integration between these specialties entails. Furthermore, they identify a potential factor to explain why clinicians do not engage with patients early on. Our literature does not guide us clearly on what it means to do just that: although 65% of articles reported on early integration, only 20% actually provided specific timing that defined this concept.Beyond the procedural and institutional barriers, Winkler et al. report the findings of a qualitative study that involved 18 clinicians (12 oncologists, 6 nurses) and investigated how one group communicated with patients about the end of life. They describe two approaches: proactive facilitation (i.e., clinician-initiated discussion) and a more passive stance (i.e., wait until the patient brings it up). Each reflects a delicate balance of the objective data in oncology (the evidence basis of our recommendations) and the emotional stances that both clinician and patient bring to each visit. Some are willing to approach the elephant in the room head on, whereas others are more comfortable keeping it in the proverbial background, waiting to take the patient’s lead.Regardless of what one thinks “early integration” means, and regardless of how one approaches such difficult conversations, the importance of that information, that conversation, and that knowledge cannot be emphasized enough. Patients look to us as oncology professionals for guidance and truth—truth so they can make informed decisions about treatment for cancer and about their lives, because of cancer and despite it. Part of that truth is to help point out changes in prognosis: when the cancer is no longer curable; when treatment is no longer a good idea; when they have reached a terminal phase of their cancer; and, yes, when they are nearing death. The significance of these moments, for both our patients and ourselves, is illustrated in the two narratives published in this issue.Dr. Tanneberger reflects on his long experience in oncology, charting a career that has spanned four decades, and introduces us to the term eubiosia, which means dignity in life “until the last moment.” He shares his own experiences with two patients from very different parts of the world. In one experience, a woman with metastatic breast cancer shows us that one can live alone and not be lonely. She finds companionship with a bird that she had saved from death. It is pet therapy as eubiosia. The other is the experience of a man living in India who finds happiness and peace in the midst of family, despite the fact that he lies on a bed in the street. These anecdotes emphasize that, often, it is not technology and medicine that lead to good quality of life but rather the simple things—companionship, friendship, family.These themes are brought home by Dr. Ben-Arye, who writes of an experience caring for Vasily, a 51-year-old man with metastatic prostate cancer. Caring for him alongside his nurse, Bella, they share a memory of their ancestors from World War II. Intertwining stories are revealed, of Vasily’s grandfather as a German Gestapo agent, of Bella’s grandfather as a Soviet soldier, and of the author’s grandfather as a Jew in the British Army. That they would recount these memories together during the last moments of Vasily’s life seems shocking. However, the memories of the past had been replaced with safety for Vasily and enhanced care and compassion for his providers.Although different in their scope and objectives, these four papers provide a view into the complexity and importance of communication among oncologists and our patients, of palliative care, and of acknowledging the end of life. They illustrate the work that has been done toward earlier and wider access to integrated palliative and oncology care. In addition, they point a way forward for us by standardizing integration and concepts of early referral and valuing quality of life as much as any tumor response measurement.Within the narratives, the science finds a new voice; hopefully, it is one to which we all will listen. Ultimately, they remind us that our goals must be to help our patients achieve peace and joy, even at the end of life. The goal of eubiosia is what I wished for my friend and what I strive to achieve for each of my patients.     

Investigation of a Patient Reported Outcome tool to assess radiotherapy-related toxicity prospectively in patients with lung cancer

Background and purpose

There is a paucity of data regarding the feasibility and relevance of Patient Reported Outcome (PRO) tools to assess radiotherapy-related toxicity in lung cancer.

Material and methods

From January to June 2013, lung cancer patients undergoing thoracic radiotherapy/chemo-radiotherapy completed nine patient-adapted Common Terminology Criteria for Adverse Events (CTCAE), the European Organisation for Research and Treatment of Cancer Quality of Life (QoL) questionnaire and the Hospital Anxiety and Depression Scale (HADS) at baseline, the end of radiotherapy and at follow-up. Clinicians completed the same CTCAE items and agreement between patients’ and clinicians’ reporting was assessed using weighted kappa coefficients. QoL and HADS scores were correlated with the patients’ and clinicians’ reported toxicity.

Results

70/116 patients completed the questionnaires for at least one time point excluding baseline. Agreement between patients’ and clinicians’ reported toxicity ranged from slight to substantial. Most discrepancies were within one grade and patients reported greater severity than clinicians for most symptoms. QoL and HADS scores were more strongly correlated with the patients’ compared to clinicians’ matching toxicity reports. The PRO tool was found to be statistically reliable.

Conclusions

The use of a PRO tool in lung cancer radiotherapy is feasible, reliable and acceptable to patients. PROs should be integrated in future clinical trials evaluating new radiotherapy approaches to assess toxicity.     

Clinician Perspectives of COVID-19-Related Cancer Drug Funding Measures in Ontario

The COVID-19 pandemic has a significant impact on cancer patients and the delivery of cancer care. To allow clinicians to adapt treatment plans for patients, Ontario Health (Cancer Care Ontario) issued a series of interim funding measures for the province’s New Drug Funding Program (NDFP), which covers the cost of most hospital-delivered cancer drugs. To assess the utility of the measures and the need for their continuation, we conducted an online survey of Ontario oncology clinicians. The survey was open 3–25 September 2020 and generated 105 responses. Between April and June 2020, 46% of respondents changed treatment plans for more than 25% of their cancer patients due to the pandemic. Clinicians report broad use of interim funding measures. The most frequently reported strategies used were treatment breaks for stable patients (62%), extending dosing intervals (59%), and deferring routine imaging (56%). Most clinicians anticipate continuing to use these interim funding measures in the coming months. The survey showed that adapting cancer drug funding policies has supported clinical care in Ontario during the pandemic.     

Good Quality Care for Cancer Patients Dying in Hospitals,but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries

BackgroundRecognized disparities in quality of end‐of‐life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries.Materials and MethodsA postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i‐CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient''s last days of life.ResultsOf 1,683 potential participants, 914 i‐CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect “always” or “most of the time”; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase.ConclusionThis is the first study assessing quality of care for dying cancer patients from the bereaved relatives’ perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: {"type":"clinical-trial","attrs":{"text":"NCT03566732","term_id":"NCT03566732"}}NCT03566732).Implications for PracticePrevious studies have shown that bereaved relatives’ views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.     

Integration of Oncology and Palliative Care,a Forgotten Indicator: Shared Decision‐Making

A review article addressing the integration of oncology and palliative care is missing an important indicator: shared decision-making in patient care between oncologists and the palliative care team.Hui et al. [1] have published a review article addressing the integration of oncology and palliative care (PC). As described by the authors, integration is a heterogeneously defined concept, but since PC improves quality of life, quality of end-of-life care, satisfaction, costs of care, and survival, parameters to identify and improve integration are needed. This review identified 38 indicators related to structure and processes of clinical programs, education, research, and administration that could help define and measure integration. But we believe that the authors have missed one important indicator.In a case series study of metastatic cancer patients previously treated with chemotherapy, we studied the quality of end-of-life care [2] based on indicators such as location of death, number of emergency room visits in last month of life, and chemotherapy administration in last 14 days of life [3, 4]. In our study, PC team intervention, even when early, had no impact on indicators. Only patients’ case discussions at the dedicated weekly onco-palliative meetings independently decreased the odds of receiving chemotherapy in the last 14 days of life (odds ratio: 0.5; 95% confidence interval: 0.2–0.9) and of dying in an acute care setting (odds ratio: 0.3; 95% confidence interval: 0.1–0.5).In our opinion, this indicator is only partially captured by two indicators described in the review: communication, cooperation, and coordination between PC and oncology services (indicator 13); and involvement of PC in multidisciplinary tumor boards/patient care rounds (indicator 14). We propose that shared decision-making in patient care between oncologists and the PC team should be considered an indicator of integration of oncology and palliative care.     

A New Model for Reimbursing Genome‐Based Cancer Care

Molecularly targeted medicine poses substantial challenges for incorporation into the existing U.S. health care system. It is argued here that performance-based risk-sharing arrangements may be a promising approach to address the competing needs of patients, clinicians, and payers.The rapidly increasing number of targeted agents, biomarkers, and molecular diagnostics has greatly increased the complexity of cancer diagnosis, prognosis, and treatment. The U.S. Food and Drug Administration (FDA) lists nearly 40 indications for which molecular testing is used in oncology [1]. Several manufacturers are marketing single and multigene assays to predict outcomes, either to general treatments or specific agents. Perhaps more important, next-generation sequencing technologies, which are currently available at most comprehensive cancer centers, may soon enable inexpensive assessments of genomic disruptions in patients’ tumors on a wide scale. The ability of cancer care facilities to perform complete or near-complete assessments of tumor genes and gene products “in house,” combined with the U.S. Supreme Court’s unanimous ruling that human DNA sequences cannot be patented (Association for Molecular Pathology v. Myriad Genetics, Inc., 569 US, 12-398 [2013] [2]), may be disruptive to the emerging genomic testing industry because centers owning sequencing technologies can reproduce proprietary assays. Perhaps more important for clinicians is the possibility that the information provided by sequencing, combined with the growing literature cataloging how these disruptions affect the biological function of the cancer cells across tumor types, may lead to a time when cancer therapy will be defined not only by the site of the cancer (e.g., breast or lung) but also by matching the patient’s aberrant genomic morphology to one or more drugs that have been shown to be effective in targeting those disruptions in those tumors [3]. A roadmap has already outlined the process by which oncology will move from the current model of patients being managed through well-defined and referenced therapy “pathways” to highly variable individualized combinations of treatments that are based on a genomic signature specific to the patient’s tumor [4].Although holding tremendous promise, molecularly targeted medicine poses serious challenges to clinicians and payers. For clinicians, the challenge is in knowing when to apply these technologies to patients. For payers, the difficulty is determining when to pay (or not) for the tests and associated treatments. Inexpensive genomic sequencing, combined with laws (in most states) that mandate reimbursement for off-label uses of oncology drugs, creates a potentially problematic scenario in which drugs are prescribed based on targets rather than on evidence that “treating the target” is beneficial. Evidence is emerging that tumor responses to targeted agents are very context specific. BRAF inhibitors, for example, appear to have activity in melanoma and thyroid cancer with the associated variants but not in colorectal cancer [5–7]. We believe that this “evidence problem” in pharmacogenomics, combined with the very high cost of targeted drugs, will lead payers to develop radically different coverage policies for companion genomic tests and cancer drugs. The new policies will need to balance clinical flexibility in tailoring therapies against the need to ensure that patients are guided to cost-effective strategies. We assert that performance-based risk-sharing arrangements (PBRSAs) may be a promising approach to address these competing needs.     

Lung Cancer Pre-Diagnostic Pathways from First Presentation to Specialist Referral

Background: Lung cancer is often diagnosed at a late stage with high associated mortality. Timely diagnosis depends on timely referral to a respiratory specialist; however, in Canada, little is known about how patients move through primary care to get to a respiratory specialist. Accordingly, we aimed to identify and describe lung cancer pre-diagnostic pathways in primary care from first presentation to referral. Methods: In this retrospective cohort study, patients with primary lung cancer were recruited using consecutive sampling (n = 50) from a lung cancer center in Montréal, Québec. Data on healthcare service utilization in primary care were collected from chart reviews and structured patient interviews and analyzed using latent class analysis to identify groups of patients with similar pre-diagnostic pathways. Each group was described based on patient- and tumor-related characteristics and the sequence of utilization activities. Results: 68% of the patients followed a pathway where family physician (FP) visits were dominant (“FP-centric”) and 32% followed a pathway where walk-in clinic and emergency department (ED) visits were dominant (“ED-centric”). Time to referral in the FP group was double that of the ED group (45 days (IQR: 12–111) vs. 22 (IQR: 5–69)) with more advanced disease (65% vs. 50%). In the FP group, 29% of the patients saw their FP three times or more before being referred and 41% had an ED visit. Conclusions: Our findings may reflect the challenge of diagnosing lung cancer in primary care, missed opportunities for earlier diagnosis, and a lack of integration between primary and specialist care.