Communications and Coping Tools Improve End-of-Life Planning
Having accurate information about prognosis is crucial for patients with late-stage cancer. Having conversations about the end of life help patients set appropriate goals and potentially avoid intensive medical treatments and hospital death.
However, many patients are misinformed about or misunderstand their prognosis, and others have difficulty coping with the realization that their illness is terminal. Recent research has focused on interventions and tools that may help overcome this gap in patient–doctor communication.
In one study, a communication coaching intervention helped patients with late-stage cancer actively seek information and express preferences about their care (this study was funded, in part, by a grant from the NCI).87 Oncologists in the intervention group received brief, individualized, skill-based communication training that focused on being receptive to patient questions and concerns. Patients received individualized communication coaching that incorporated a list of questions related to cancer care and end-of-life issues. Oncologists and patients in the control group did not receive any communication training or prompting.
During a subsequent office visit, nearly three times as many patients in the intervention group than in the control group (17% v 6%, respectively) asked about prognosis, and more than twice as many (70% v 33%, respectively) brought up topics that were covered by the communication coaching, such as cancer treatment, current cancer state, and preferences about care at the end of life. Whereas validation of these results in other settings is necessary, they underscore the value of combined patient–doctor interventions to enhance communication.
New online tools are another way of helping patients plan for the end of life. In a recent study of elderly patients with chronic and/or serious conditions, 35% of those who used the interactive, patient-centered advance care planning Web site, PREPARE, along with an easy-to-read advance directive, succeeded in assembling advance planning documentation compared with 25% of those who used the advance directive alone (this study was funded by a grant from the US Department of Veterans Affairs Office of Research and Development).88 Given that the Web site used in this study is free to the public and requires no physician involvement, it represents a method of improving end-of-life care with minimal health care system resource expenditure.
Research shows that certain coping strategies can help patients with incurable cancer who accurately understand their diagnosis to be terminal (this study was funded, in part, by grants from the NIH, NCI, and the National Institute of Nursing Research).89 For example, patients who used positive reframing (ie, looking for something good in their situation) and active coping (ie, taking action to try to make their situation better) had improved quality of life and less depression.
It is important that doctors communicate the availability of these tools and help patients both understand and cope with advanced cancer and a terminal prognosis. A new ASCO guideline provides oncologists with recommendations regarding core communication skills that apply across the continuum of cancer care, including discussion of goals of care and prognosis, treatment selection, and end-of-life care.90 For more information on coping with cancer, visit Cancer.Net.
Voices of Cancer Research: Rhonda Kokot
Rhonda was 29 years old when she was diagnosed with acute myeloid leukemia. She eventually needed a stem cell transplant and faced for the possibility of major side effects, including life-threatening infections. A clinical trial using umbilical cord blood for the transplant, however, spared Rhonda many of the expected toxicities. “Today, I live a pretty healthy life with no major side effects,” says Rhonda. She credits the trial for keeping her alive. Since participating in the study, she has run several half marathons and volunteers her time in support of cancer research.
Rhonda is a board member at the Gateway for Cancer Research.
Managing Common Adverse Effects and Complications
Radiation therapy for lung cancer increases the risk for heart problems.
Radiation has been the backbone of treatment of stage III NSCLC for three decades. Despite the known harmful effects that chest radiation can have on the heart, patients with stage III NSCLC still receive high doses of radiation because it is believed that few live long enough to experience heart complications (life expectancy is less than 2 years). A pair of studies published in 2017 challenge this notion by showing that heart problems are relatively common in this patient population and occur earlier than historically understood.
In an analysis of patients who were treated in six clinical trials from 1996 to 2009, 21% of those who received a high dose of radiation (≥ 20 Gy) developed symptomatic heart problems within 2 years (this study was funded by a grant from the NIH).91 Heart problems were independently linked to high doses of radiation and underlying risk (eg, smoking and cardiovascular disease).
A second analysis of patients who were treated in four clinical trials from 2004 to 2013 demonstrated similar results; 11% developed severe heart problems within 2 years (this study was funded by a grant from the NIH).92 As in the other study, patients who received a higher radiation dose and/or had pre-existing heart disease were more likely to develop heart problems. Furthermore, both cancer worsening and heart problems were linked to shorter survival.
These findings will inform treatment and survivorship discussions between physicians and patients with stage III NSCLC. When selecting radiation dose, controlling tumor growth should be balanced with minimizing the risk for heart problems, particularly in patients with an underlying risk of heart disease.
A recent guideline from ASCO recommends that, before the start of therapy, doctors should discuss the potential for heart problems with patients who are at increased risk for such complications and establish a tailored and detailed plan to monitor them during and after cancer treatment.93
Single radiation treatment relieves symptoms of spinal cord compression.
As many as one in 10 people with advanced cancer develop spinal cord compression. This condition is a major detriment to quality of life, causing back pain, numbness, tingling, difficulty or inability to walk, and sometimes bowel or bladder incontinence. Radiation therapy can prevent or relieve these symptoms, but it typically requires multiple trips to the clinic for treatment.
Research presented in 2017 demonstrated that a single radiation treatment may be sufficient for patients with a short life expectancy.94 In a large clinical trial, one-time radiation treatment was as effective as 5 days of treatment in terms of helping patients stay mobile, and median survival was not different between the two groups (approximately 3 months). Shortening radiation therapy allows patients with cancer-related spinal cord compression to spend less time in the hospital and more time doing things they enjoy.
For cancer-related fatigue, exercise and psychological support work best.
Cancer-related fatigue is different from feeling tired after staying up too late. It is a persistent feeling of physical, emotional, or mental exhaustion that interferes with one's daily activities and does not improve with rest. Most people who receive cancer treatment experience fatigue, and approximately one-third of survivors of cancer experience fatigue that lasts for years after finishing treatment.
Numerous approaches for treating cancer-related fatigue have been tested, with variable outcomes; therefore, it has not been clear which treatments work best. An analysis of 113 randomized clinical trials compared the four most commonly recommended treatments, which are exercise, psychological intervention, combined exercise and psychological intervention, and medication (this study was funded in part by grants from the NIH).95
Exercise, psychological support, and the combination of the two approaches improved cancer-related fatigue during and after cancer treatment. Benefits of these treatments were greater for patients with nonmetastatic disease and varied by intervention mode and timing; however, medications were much less effective than behavioral interventions.
These findings confirm a large body of literature in the field and suggest that exercise and psychological interventions should be used before pharmaceutical interventions, which provide minimal benefit. These recommendations are relevant to many patients with cancer.
ASCO recommends that health care providers assess the patient's level of fatigue at diagnosis and repeat this assessment yearly and at any time there are symptoms of fatigue throughout treatment and into recovery.96 For more information about cancer-related fatigue, visit Cancer.Net.
ASCO Launches Center for Research and Analytics
In June 2017, ASCO announced the launch of its new Center for Research and Analytics (CENTRA) to make an array of cancer data available to the oncology community and provide consultation and support for research and analysis. The CENTRA team analyzes and builds an evidence base to support cancer policy development, advances the practice of oncology, and improves cancer care for patients. This supports ASCO's continuing commitment to helping to advance the field of oncology and improve cancer care through the generation and application of high-quality evidence.
Requests can be made through CENTRA for data from ASCO sources, such as our quality programs, an annual census of oncology practices, and scientific meeting abstracts and presentations. All research requests will be evaluated before being fulfilled.
Patient Engagement Leads to Improved Care
Web-based symptom reporting extends survival.
The value of patients reporting their own outcomes is increasingly recognized in oncology, and there is interest in integrating patient-reported outcomes into routine practice. A recent study demonstrated that a Web-based, patient-reported outcomes tool can help patients with advanced cancer live longer.97
With the standard approach of assessing symptoms only during office visits, the health care team can be unaware of patients’ symptoms up to half of the time. In a clinical trial, the Web-based tool enabled patients to report common symptoms in real time and triggered alerts to clinicians if symptoms worsened (this study was supported by ASCO’s Conquer Cancer Foundation). When appropriate, clinicians took action to relieve symptoms, such as lowering the chemotherapy dose or providing supportive care.
Patients with metastatic cancer who used the tool while receiving chemotherapy lived a median of 5 months longer than those who did not use the tool (31 months v 26 months, respectively). This improvement in survival was greater than that associated with nearly all cancer drugs that received FDA approval in 2016.
Researchers previously reported that the use of the same tool was associated with better quality of life and fewer visits to the emergency room and hospitalizations. The findings confirm that patient-reported outcomes should be the standard of care for patients with late-stage cancer. A nationwide clinical trial that uses an updated tool that works on both personal computers and mobile devices is underway in community practices across the United States.
Voices of Cancer Research: Andrew Schorr
Without clinical trials, says Andrew Schorr, “I think I would have died long ago.”
Andrew was diagnosed at age 45 with chronic lymphocytic leukemia and then again at age 61 with myelofibrosis, a rare type of bone marrow cancer. He has participated in multiple clinical trials over the years, including a trial for a regimen that combines chemotherapy with a monoclonal antibody.
Today, Andrew is being treated for a recurrence of leukemia, but he says the treatment allows him to live a normal, active life. He feels grateful for the care he has received and the studies he has participated in.
Andrew Schorr is the founder of Patient Empowerment Network and Patient Empowerment Foundation, as well as the co-founder of Patient Power.
After a cancer diagnosis, an online support program lowers distress.
Patients experience major distress when they first learn of their cancer diagnosis. Yet amid all the tests, treatment appointments, and family or work decisions, little attention is paid to one’s psychological and emotional well-being. In fact, as a result of patients’ time constraints and the lack of availability and resources for psychological support, few patients who are newly diagnosed with cancer receive any psychological support.
To address this need, researchers are looking into leveraging Internet-based technologies to provide support to more patients and improve their quality of life. In a recent study, an 8-week Web-based stress management program that was designed by psychologists and oncologists, improved quality of life and lowered distress for patients who were newly diagnosed with cancer.98
The program covered different topics, such as bodily reaction to stress, cognitive stress reduction, feelings, and social interactions. For each weekly topic, participants received written and audio information, then completed exercises and questionnaires.
The study demonstrated that delivering psychological support via an Internet-based program is feasible, but more research is needed to refine and scale up such an approach for broad use. Researchers already have plans to translate the program into other languages (it is currently available only in German).
Crowdsourcing advances cancer research.
Progress against rare cancers is often slow because of a combination of scarce funding and a limited availability of patients and tumor samples for research. An attractive solution to this problem is crowdsourcing. More and more people with rare and common cancers today have the opportunity to rapidly and directly affect research by sharing their tumor tissue samples and medical and/or genetic information to help others with the same or similar diseases. In return, researchers share what they learn with participants.
The Metastatic Breast Cancer Project collects health records and tumor and saliva samples to learn why some patients respond differently to cancer treatments than others. The project engages patients to participate via social media, newsletters, blogs, and advocacy organizations.
Two other such projects focused on sarcoma are run by researchers with the support of patient advocacy organizations, the Angiosarcoma Project and the Leiomyosarcoma Direct Research.
Another emerging type of crowdsourced research engages members of the general public, so-called citizen scientists, to gather ideas, design studies, and perform research-related tasks, such as analysis of scientific images or quantitative data. This approach is particularly helpful in pathology research studies that require manual review of a large quantity of images. The Cell Slider project recruited approximately 100,000 people to classify images of breast tumor tissue according to estrogen receptor status. To assess the volunteers' performance, researchers compared their classification with that of trained pathologists and found that citizen scientists were able to classify tumors with high accuracy.99 For additional notable advances in patient care, please see Appendix Table A1.
CancerLinQ Partners With Federal Agencies and Medical Specialty Societies
In 2017, one of the main focus areas for CancerLinQ was partnering with federal agencies, professional societies, and life sciences companies. The goal of these collaborations was to convene the cancer community around solutions for improving the quality of care for patients with cancer. By leveraging the expertise of the many stakeholders that span the care continuum, all of whom affect key decision points in a patient's care, we can help make CancerLinQ a system that encompasses all of cancer care. The effort was successful, with 10 collaborations formally signed and announced between June 2016 and June 2017 with the following organizations:
- American Academy of Physician Assistants
- American Society of Radiation Oncology
- Cancer Informatics for Cancer Centers
- College of American Pathologists
- US Food and Drug Administration
- Hematology/Oncology Pharmacy Association
- National Comprehensive Cancer Network
- National Cancer Institute
- Oncology Nursing Society
- Society of Gynecologic Oncology
The organizations with which CancerLinQ has partnered are invited to participate in the CancerLinQ Oncology Leadership Council, the official body of strategic advisors that comprise member representatives from CancerLinQ’s official partner organizations and advisory groups. This is the first time that a coalition of this nature has been created and convened. As CancerLinQ creates this community of learning in cancer, these foundational partners offer incredible thought leadership and represent the importance of a team-based approach to delivering high-quality care.