Some of the most basic psychological and social issues affecting cancer patients aren't being adequately addressed, according to a recent Institute of Medicine report commissioned by the National Institutes of Health (NIH).
In Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, a committee of leading cancer researchers and clinicians reviewed the most commonly cited psychosocial problems among cancer patients, from depression to financial stress, and identified 10 practical action items for better recognizing those problems in patients and matching the patients with appropriate services and resources.
“This report offers clinicians a standard for psychosocial care,” said committee member Patricia Ganz, MD, Director, Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center, University of California, Los Angeles. “We know resources are underutilized; we know now what we need to do,” she said when asked what made this report different from previous Institute of Medicine papers on the topic.
Even if a patient is receiving state-of-the-art cancer care, acknowledgement of and support for dealing with the psychological and social effects of cancer is often subpar, the report found. Many cancer patients complain that their health care providers fail to acknowledge their struggles with depression or financial problems related to their illness, underestimate their distress, and either don't know about or don't offer enough information about support services. Neglect in these areas often makes it harder for the patient to cope with and bounce back from treatment.
For example, patients whose depression or emotional problems go unchecked are likely to report lower social and overall functioning, putting them at greater risk for sleep problems, fatigue, and pain, all of which adversely affect their ability to adhere to treatment plans. Those with financial burdens are vulnerable in many ways and are often in dire need of transportation, financial consulting, and help paying for necessities, including food and medication. Cancer survivors have a diverse set of psychosocial concerns, from coping with the financial and emotional toll of long-term care to learning how to deal with the sometimes permanent side effects of their treatment.
The brunt of these unmet psychological and social needs ends up resting on the shoulders of caregivers, many of whom are already paying a high price physically and psychologically while caring for their loved one.
The problem isn't so much that there aren't enough social services (though more are needed), but rather that oncology professionals, educators, health policy makers, insurers, and consumer advocates aren't doing the best job of identifying patients in need or making use of available programs. This report gives clinicians a framework for better integrating psychosocial care alongside a patient's medical treatment.
The 10 recommendations to emerge in the report include provisions for the following:
• A Standard of Care. All cancer care should facilitate effective patient-clinician communication; identify each patient's psychosocial health needs; design and implement a plan that links patients with services, coordinates that care, and supports patients in managing their health; and systematically adjust psychosocial care plans based on follow-up evaluations.
• Health Care Providers. All cancer care providers, with the help of the National Cancer Institute (NCI), should ensure that each of their patients receives the standard of care.
• Patient and Family Education. Patient education and advocacy organizations should educate patients to expect that standard of psychosocial care and help patients take ownership of their treatment by providing tools, resources, and training.
• Support for Dissemination and Uptake. Whether individually or collectively, the NCI, Centers for Medicare and Medicaid Services, and the Agency for Healthcare Research and Quality (AHRQ) should demonstrate how this standard should be implemented in different settings and with different populations.
• Support from Payers. Private and public group insurers should include provisions for psychosocial care in their contracts.
• Quality Oversight. The NCI, Centers for Medicare and Medicaid Services, and the AHRQ should fund research focused on developing psychosocial care performance measures.
• Workforce Competencies. Educational accreditation organizations, professional societies, and licensing bodies should help identify and develop core competencies for the delivery of psychosocial care.
• Standardized Nomenclature. The NIH and AHRQ should lead an initiative to develop a standardized taxonomy and nomenclature for psychosocial services.
• Research Priorities. Organizations sponsoring research in oncology care should prioritize research on the use of tools, strategies, and services for better integrating psychosocial care alongside treatment.
• Promoting Uptake and Monitoring Progress. The NIH should monitor the delivery of psychosocial services by conducting annual patient-level evaluations, adding psychosocial care quality measures to existing patient surveys, and monitoring compliance with the standards outlined above.
The report also includes lists of resources for finding cancer-related information and psychosocial help.
“Many cancer care providers may be surprised at the array of psychosocial health services available nationwide at no cost to patients,” said Ganz, just after the report was released.
The American Cancer Society (ACS) is among the resources listed; patients and caregivers can find information on the ACS Web site, http://www.cancer.org, or by calling 1-800-ACS-2345. This toll-free phone line is staffed 24 hours a day, 7 days a week, with cancer information specialists who can help patients and their loved ones find information and local services.