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“We know patients' social and psychological needs are not being met,” said Patricia Ganz, MD, Chair of the American Society of Clinical Oncology's (ASCO) Quality of Care Committee. The National Institutes of Health (NIH) charged the Institute of Medicine (IOM) with establishing a committee to study the delivery of psychosocial services needed by patients with cancer and their families in community settings. The resulting report from the IOM highlights the importance of health care providers offering adequate support for patients' psychosocial health needs. The report Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs sets a new standard for everyone providing care to patients with cancer. Dr. Ganz, along with other ASCO members, was part of the effort. “The committee wanted to determine how we could make this an integral component of standard care,” she said.
The committee was comprised of diverse oncology practitioners and other experts from academic medical centers, cancer centers, and research groups across the country. Before developing the standard of care, the committee needed a clear definition of the psychosocial health services being discussed. Existing definitions vary or are missing all together. The report states, “psychosocial health services are psychological and social services and interventions that enable patients, their families, and health care providers to optimize biomedical health care and to manage the psychological/behavioral and social aspects of illness and its consequences so as to promote better health.” Community care refers to all sites of cancer care except inpatient settings.
With these definitions, the committee examined the psychosocial needs of patients and barriers to meeting those needs, analyzed the ability of the current mental health and cancer treatment system to provide these services, and developed an action plan to adequately provide these services. To respond to these tasks, the committee studied peer-reviewed publications, collected information from service providers, interviewed experts, and examined recommendations from previous reports.
Most importantly, the report sets a new standard of care for “all parties establishing or using standards for the quality of cancer care” and nine more recommendations that apply to various groups who affect cancer care or apply to aspects of providing quality care. The standard states:
“All cancer care should ensure the provision of appropriate psychosocial health services by:
Several studies and reports have shown that there is a gap in care when it comes to addressing psychosocial health needs. These needs include recognition and management of depression, anxiety, fear, developmental problems, disability, pain, and limitations in daily living. These factors all contribute to patients' psychosocial well being. Financial stress, inadequate or lack of health insurance, and transportation limitations were also identified as barriers to treating psychosocial health needs. The committee found that failing to treat psychosocial health problems prevents patients from getting needed care: they don't comply with treatment plans, they don't adequately manage their illness and recovery, and they often aren't linked with necessary services, which threatens their recovery. This standard places a new emphasis on providing these services as a necessary step in providing quality care to patients.
To further underscore the point, the report's second recommendation applies to health care providers: “All cancer care providers should ensure that every cancer patient within their practice receives care that meets the standard for psychosocial health care.”
The idea of integrating psychosocial health needs into standard disease management may seem daunting, but the report details reasonable ways for practitioners to address these needs in almost any community setting. For example, all the patient's needs do not have to be met on site, just identified. “Someone on staff can address these needs,” said Dr. Ganz. “It can be as simple as a short questionnaire that a patient completes while in the waiting room. If an oncologist in the office doesn't figure out some way to identify these concerns, they will go unmet and that's really the issue. The doctor doesn't need to provide the services, but they need to identify them.”
To get community practices started, a model for delivery of these services was used throughout the report and includes five steps.
The model is not a standard linear process, but more circular, with constant follow-up to identify changes in patients' needs and reconnect them with necessary services. After identifying patients' needs, physicians need to be aware of local or national resources to refer patients. The report includes an extensive listing of free patient information on cancer and cancer-related services, free psychosocial services, and a comparison of needs assessment tools. It's important to know of local support resources and mental health providers—if not available on site—to build linkages in the community to be able to provide for patient needs. In addition, most patients want information about their disease that they can understand. Organizations such as ASCO, the National Cancer Institute, and the American Cancer Society provide information about diagnosis, treatment, and managing disease online for free.
Following this model requires effective patient-provider communication to ensure proper follow-up and understanding of patient needs. Screening tools should be used throughout a patients's care, as patient needs may change, or patients who previously did not have psychosocial needs may develop them as their disease progresses.
The report also included overviews of how cancer centers are already implementing this standard. Not all community sites have the same resources, and the IOM committee recognized that most places use one or more of three approaches. Practice settings with the ability to provide services in-house offer co-located, integrated psychosocial and biomedical health care. This requires substantial physical space and personnel, so sites without these resources establish links and coordinate care with other local providers. Finally, some treatment locations are faced with limited resources that make the previous two approaches difficult. These sites can use remote providers of psychosocial health services, such as online patient information and telephone support, to help meet patients' psychological and social needs.
The Rebecca and John Moores Cancer Center at the University of California, San Diego, California, offers integrated health care by connecting patients with a social worker at their initial visit to the outpatient clinic. The social worker introduces patients to the psychosocial health services available on site. The practice also uses a computer-based questionnaire to determine patient needs throughout treatment. These results are e-mailed to the health care team, which then connects patients to the appropriate resources. In the year and a half the cancer center has used this approach, it has seen patient satisfaction scores triple.
Using the second approach, the Tahoe Forest Cancer Center in Truckee California, is a solo practice led by Laurence J. Heifetz, MD, that works with community hospital staff to meet patient's needs. The oncologist provides customized patient information printed from People Living With Cancer (Cancer.Net, formerly www.PLWC.org), and community volunteers provide assistance with transportation, companionship, and other patient needs.
Finally, the report details using remote linkages. Many resources are provided in the report. In addition, the report gives examples of a letter given to patients at the beginning of care and a sample handout detailing sources for patients to help manage cancer and its treatment. National Cancer Institute's Cancer Information Service is one resource to help patients get information about a recent cancer diagnosis and prepare them for meeting with a clinician. Tools such as the distress thermometer are also available to identify patients' psychosocial needs. The distress thermometer (www.nccn.org/patients/patient_gls/_english/_distress/2_evaluation.asp#describing) is a one-page screening tool that can be self-administered and is available for free.
In addition to the standard of care and recommendation for health care providers, the report details eight more recommendations pertaining to:
Although it is a daunting challenge, research indicates that incorporating psychosocial health care into standard patient care encourages better recovery and lessens the debilitating effects of cancer. It's important for cancer care providers to learn of local resources to refer patients and find screening tools to determine which patients are in need of psychosocial support. Furthermore, the amount of free resources listed in the report offers hope for the ability of many settings to implement this standard. At the same time, the committee recognizes that there are varying resources and that not all community settings will be able to implement the recommendations at the same rate.
The entire report provides more detail on each of the points listed here, along with practical recommendations to meet the standards at any setting. The full version of this report is available online at www.nap.edu, choose Health and Medicine from the Topics menu on the left. A summary for providers and a summary for patients are also provided.
Recommendation 6 gives a charge to quality oversight that includes organizations such as ASCO. “Organizations setting standards for cancer care and other standards-setting organizations should:
ASCO recognizes the importance of this charge and its role in helping oncology care providers meet the standard of care. ASCO has already begun developing quality measures and initiatives. One step is integrating quality measures into the Quality Oncology Practice Initiative—a quality improvement program that includes measurement, feedback, and improvement tools for medical oncology practices. For data collections in 2008, the program will add new measures for psychosocial needs assessment to support health care providers in integrating this element into practice.
ASCO has also added more psychosocial support resources to Cancer.Net, formerly known as PLWC.org. Cancer.Net is an excellent resource to connect patients to information about their disease; ways of coping; current research; and links to national resources for information, support, and clinical trials. It's easy to understand and has information for many diseases available in Spanish. Much of this information can be customized for patients and printed out during office visits.