Patient-Centered Cancer Treatment Planning Improving the Quality of Oncology Care: Workshop Summary (2011) / Chapter Skim
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Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care
Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care
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and the National Cancer Policy Forum (NCPF) of the Institute of Medicine hosted a public workshop in Washington, DC, on February 28 and March 1, 2011, titled Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care.
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work has focused on the challenges of cancer care planning for individuals who have completed their treatment (sometimes referred to as follow-up or survivorship care planning) , this workshop focused on treatment planning for patients with cancer at the time of diagnosis.
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Workshop participants also suggested a variety of mitigation strategies to address these many obstacles, including improved training of physicians, nurses, and other healthcare providers in the components of optimal communication with patients and families, and improved education of patients and families about how to be more proactive and assertive to optimize interactions with healthcare providers. Many participants advocated for greater use of support services, such as mental health services, social work, and nutrition counseling, as well as greater involvement of patient navigators who can help coordinate cancer care and foster communication among providers.
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Patients diagnosed with cancer are taking the journey of their life, literally, so the role of the cancer treatment plan in starting a conversation, in promoting comprehension and retention, in managing expectations and anxiety, and providing continuity across settings and episodes is so important." Cancer care also has a number of unique attributes that make treatment planning vital.
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[Patients] only have one chance to get it right." PATIENT-CENTERED CANCER CARE The 2001 IOM consensus report Crossing the Quality Chasm: A New Health System for the 21st Century defines patient-centered care as "providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions" (IOM, 2001)
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Research on breast and colon cancer patients and survivors by Dr. Deborah Mayer, associate professor at the University of North Carolina School of Nursing, suggested that patients want both print- and Web-based information, and they want information about their diagnosis at the time they are diagnosed and a treatment plan when they first start their treatment.
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According to the IOM consensus report Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (2008) , poor communication and lack of patient involvement are particularly worrisome because a substantial literature has linked effective patient-clinician communication to positive health outcomes.
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For example, Dr. Linda Burhansstipanov, grants director and founder of the Native American Cancer Research Corporation and president of Native American Cancer Initiatives, Inc., pointed out that many patients are told to contact their
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Yet in a study of breast cancer patients who were provided with comprehensive information about the risks and benefits of mastectomy and lumpectomy, one-third of these informed women chose mastectomy (Collins et al., 2009)
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Burhansstipanov said. She added that doctors also have to be cognizant that in some Native American tribes, the mother is the decision maker for her children, even grown children, and thus must be consulted when devising cancer treatment plans.
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This often leads to an overpromotion of various types of treatments that are not likely to be effective in late-stage cancer. "It's almost as though we no longer give people permission to die," he said, "so the end-of-life aspect of cancer care can get lost." Dr.
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It is some times referred to as end-stage or terminal cancer. Advanced care planning entails working with cancer care teams to help patients and their families discuss the diagnosis and prognosis, and identify the best, individualized treatment plan for each patient, includ ing care options at the end of life.
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Smith. He noted a study that found many oncologists delay having a discussion with their cancer patients about advance directives until patients show symptoms or there are no longer any chemotherapy options for them (Keating et al., 2010b)
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Dr. Smith suggested that discussions about advanced care planning with cancer patients happens too little or too late because of reluctance on the part of oncologists to bring up advance directives.
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"Advanced care planning is important to maximize the time people have left for important tasks. We are essentially making a survivorship care plan when the time is short," Dr.
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Nobody asked me how I was doing." A cancer treatment plan can also address and coordinate the psychosocial services that cancer patients need.
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Angelina Esparza, director of the Patient Navigator Program & Cancer Resource Centers at the American Cancer Society, the plan provides personalized information, including the strategies for addressing a patient's specific psychosocial and biomedical care needs and the resources to address the specific needs of the patient's family and caregivers. A cancer treatment plan could also include clinical trial options available to a patient, suggested Dr.
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Yet the role that the primary care physician plays in the cancer treatment planning of their patients is nebulous and often minimal. "It's a challenge in developing the treatment plan -- knowing who might have a better sense of those patients' preferences and what they might want to do," Dr.
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"When I went back to my primary care physician, it was like shock and awe -- it was outside his realm of expertise," he said. In summary, many participants favored more involvement of primary care physicians in the care of cancer patients, but there are numerous obstacles to achieving that goal in practice, including a lack of sufficient time to adequately participate in the process and to stay abreast of the complex and rapidly changing nature of cancer treatment, poor coordination of care generally, and the growing shortage of primary care physicians.
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duplicated from: Several speakers stressed that a cancer treatment plan should not just fig S-1 and 4-1 be handed to patients, but instead must be conveyed verbally as well, to R01103 facilitate better communication between patients and their providers. "The Cancer Care whole point of a care plan is not just to have a document, but to have a conversation.
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PATIENT-CENTERED CANCER TREATMENT PLANNING IN PRACTICE: ARE WE THERE YET? Several recent studies to assess whether patient-centered cancer treatment planning is being put into clinical practice suggest there is much room for improvement in patient education, communication, attention to patients' emotional and family needs, and coordination of care.
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"It's really important that we recognize that this mismatch exists," she said. "We really need to take a lot of extra care in making sure that all of our patients understand what's going on." Another study found that after meeting with their doctors, only about half of early-stage breast cancer patients knew survival was the same with mastectomy and lumpectomy (Fagerlin et al., 2006)
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Keating also pointed out that not all patients want to have an active role in deciding their treatment. In her studies, 12 percent of breast cancer patients reported that they preferred to have their physician either decide or recommend their treatment, and 10 percent of lung and colorectal cancer patients preferred such treatment discussions to be physician-controlled.
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Dr. Sepucha added that in her studies of breast cancer patients, she found that 18 percent of women who preferred mastectomy had a lumpectomy, about 20 percent who preferred reconstruction did not receive it, and 16 percent who preferred to have chemotherapy did not receive it (Lee et al., 2009a,b, 2010)
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In addition, a number of system challenges were cited, including fragmentation of the healthcare system, lack of accountable care, and a lack of financial incentives for providers to devote the time and effort required for patient-centered care planning. Patient Stress A major challenge noted by both providers and patients at the workshop was the high level of stress experienced by a person who has recently been given a cancer diagnosis.
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Conveying all relevant genetic details in a concise fashion to primary care physicians and other practitioners involved in a patient's care is also challenging, especially since this information is continually being updated in the medical literature. Both doctors and patients also need to better understand the potential risks and benefits of cancer treatments, some participants suggested.
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Dr. Bakitas added, "When we are thinking about communicating cancer treatment planning needs, we are thinking about not just the patient, but the family members, and recognizing that they might have different needs." There can also be conflicts between the type of treatment a patient wants and the type of treatment a doctor thinks is best for the patient.
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It also is challenging to determine who should be responsible for devising such a plan -- often the first physicians that patients see as they embark on their cancer journey are their primary care physician and a surgeon, but they may not be best suited for devising a comprehensive cancer treatment plan, Dr. Ganz noted.
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TOOLS, PERSONNEL, AND PROGRAMS TO OVERCOME BARRIERS Participants at the workshop offered several strategies for overcoming or lessening the current barriers to providing patient-centered cancer care, including tools and resources, personnel that can fill gaps in care and help coordinate care, enhanced training, and model care programs. Tools and Resources Several resources are available that can improve patient-centered cancer treatment planning, including those provided by the National Transitions of Care Coalition.
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The American Cancer Society also offers a number of online tools, including their "Cancer Profiler"5 treatment decision support tool that helps patients understand how their diagnosis, test results, and medical history affect treatment options. The American Society for Clinical Oncology recently released a guide to help patients with advanced cancer broach difficult conversations about their prognosis, treatment, and palliative care options with their physicians (ASCO, 2011)
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. A number of technologies can aid patient-centered cancer care and planning, including electronic medical records (see Box 3)
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• roviding auto-fill options with drop-down menus that avoid P errors of omission and transcription, thereby making care more efficient and making it easier to fill out a cancer treatment plan. • oordinating care by automatically sending a cancer treatment C plan and any changes made to it to all involved providers and patients.
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She suggested that screening for mental health issues be part of the cancer treatment planning process.
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Kaplan added that the Web can also offer patient empowerment tools so they are more active participants in their care. Training Many workshop participants suggested that there be better training for physicians and other providers about patient-centered cancer care planning.
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Dr. Partridge concurred, adding, "As we figure out the best ways and tools, we absolutely also need to think forwardly about how to train people to implement them." Personnel Many speakers at the workshop advocated for greater use of patient navigators, nurse oncologists, and social workers to provide more patientcentered cancer care.
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They are understanding where the best place is for this patient to go to seek information or to seek resources." The first patient navigation program was developed for medically underserved patients at Harlem Hospital and was shown to foster earlier diagnosis of breast cancer and to increase the number of patients who had colorectal cancer screening, Ms. Esparza reported.
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•May provide basic assessment to be er •Re-evalua on of needs triage pt to appropriate care throughout the trajectory •Helps to improve pt/HCP communica on Pa ent enters the Pa ent accesses care, healthcare system resources, and informa on FIGURE 2 The roles of patient navigators includes facilitating patients' entry into the healthcare system, establishing a relationship to assess and address patient needs, and providing access to resources and care. NOTE: HCP = health care professional; PN = patient navigator; pt = patient.
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"We need to rebuild the cancer care system, not shuffle the chairs on the deck of the Titanic," said Dr. Ferrell.
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is a consortium of professional organizations dedicated to improving survival and quality of life for cancer patients through standardsetting, prevention, research, education, and the monitoring of comprehensive quality care. See http://www.facs.org/cancer/coc/cocar.html.
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. Despite the benefits of using oncology nurses in cancer treatment planning, the IOM consensus report The Future of Nursing: Leading Change, Advancing Health found that these health professionals are underutilized in many areas of health care (IOM, 2010)
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Model Programs A number of model programs have attempted to make cancer treatment planning and other aspects of health care more patient-centered. These models include patient coaching programs, centers for shared decision making, enhanced discharge planning programs, accountable care systems, and self-help support groups.
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To assess the value of this center, patients were asked questions related to their knowledge of breast cancer treatment options after a visit with their doctor, including the likelihood of the treatment options to affect survival and recurrence, and how much time they could take to decide on a treatment option. Ninety-two percent of patients answered these questions correctly, Dr.
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The process employed for improving cancer care includes measurement, feedback, and improvement tools for hematology-oncology practices. See http://qopi.asco.org/program (accessed May 17, 2011)
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She also pointed out that the Cancer Support Community offers professionally facilitated support groups and other programs and services to enable cancer patients and their families to manage their treatment and recovery as effectively as possible. One participant suggested creating survivorship advisory committees that can bring feedback and programmatic needs to the attention of hospitals and community practices.
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Although some people have expressed concern that the treatment plans and summaries might boost patients' anxiety levels, 72 percent of the patients surveyed said it gave them greater peace of mind and only 1 percent said it gave them less peace of mind; 97 percent felt the breast cancer treatment plan and summary was useful, and 62 percent had given the form to another doctor, or planned to do so. All patients surveyed recommended that the practice continue to provide the cancer treatment plans and summaries to patients.
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She added, "Projects like this that have a back door registry where we can provide feedback to practices in real time are a great opportunity for point-of-care quality improvement, improved care communication, and coordination and they also enable us to do health services research to learn about the quality of care." Survivorship Planning as a Model for Treatment Planning Dr. Mayer reported on her study of implementing survivorship care planning for early-stage colon cancer patients funded by the Centers for Disease Control and Prevention.
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Dr. Mayer is also providing breast cancer patients with a survivorship care plan during their transition or first survivorship visit.
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POLICY OPTIONS TO PROMOTE PATIENT CENTERED CANCER TREATMENT PLANNING Participants suggested several policy options to promote patient-centered cancer treatment planning, including standards for training, licensure, and practice of providers, financial incentives, research, and healthcare reform. Standards for Training, Licensure, and Practice Several speakers suggested setting standards of care for oncology that include patient-centered treatment planning and communication, and making these standards part of physician training and licensure.
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Financial Incentives Financial incentives are also needed to spur implementation of patientcentered cancer treatment planning, according Dr.
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The agency also conducts research aimed at addressing questions that are particularly important to cancer patients, such as what the long-term consequences of various cancer treatment options are.
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Supporting the endeavor to conduct research whose findings will aid cancer treatment planning are the millions of dollars AHRQ recently received via the American Recovery and Reinvestment Act of 2009 to support patient-centered outcomes research, as well as the establishment of the Patient-Centered Outcomes Research Institute (PCORI) , which was called for in the Patient Protection and Affordable Care Act of 2010.
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Dr. Smith noted that abundant resources can be saved by providing cancer patients with appropriate end-of-life care.
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FINAL REMARKS According to many workshop speakers, cancer patients often are not receiving patient-centered cancer treatment planning, and many speakers suggested that there needs to be more promotion of such planning via accreditation standards, guidelines, financial incentives, training, and policy. Speakers also suggested that research on patient-centered cancer treatment outcomes and the value of cancer treatment plans is needed.
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2007. Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.
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Breast cancer patients and their knowledge about treatment. Patient Education and Counseling 64(1-3)
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2010a. Cancer patients' roles in treatment decisions: Do characteristics of the decision influence roles?
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1998. Survey of breast cancer patients concerning their knowledge and expectations of adjuvant therapy.
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2009. An evidence base for patient-centered cancer care: A meta-analysis of studies of observed communication between cancer specialists and their patients.
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