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For Immediate Release: July 11, 2011
Limited Experience, Lack of Disease-Specific Resources and Training Are Main Barriers to Quality Care for Patients with Chronic Myeloid Leukemia (CML)
Association of Community Cancer Centers’ Education Project Reveals Most Effective Practices for Treating CML Patients in the Community Setting
ROCKVILLE, Md.—The Association of Community Cancer Centers (ACCC) has released its study on most effective practices in the care of patients with chronic myeloid leukemia (CML). Findings suggest that successful cancer programs take a team-based approach, deploying case managers or navigators to coordinate care, which may include home and family assessment, nutrition and pharmacist consults, and easy access to the physicians, social worker, nurses, and dietitian.
The study was conducted as part of ACCC’s educational project, entitled “Treating Small-Population Cancers in the Community Setting,” which was initiated with a focus on CML. Study results show that effective management of patients with CML includes long-term care monitoring for support service needs since the patient is not cured by the therapies, but instead is stabilized with an ongoing need for monitoring drug therapies. Support services within the most effective programs are comprehensive and include a broad array of in-house services. However, cancer program support services are unlikely to be tailored to CML, and many programs report that their support service professionals have little training or experience with CML.
“About 5,050 new cases of CML will be diagnosed yearly. For most cancer programs, the experience with CML is limited and will remain so,” said ACCC President Thomas Whittaker, MD, FACP. “Because direct patient experience is more limited for small-population cancers, keeping current about new treatments is particularly important. Annual CML training for clinical and support professionals keeps them up to date on new therapies and processes and up to speed on existing ones.”
According to ACCC's study, given that the financial implications of CML drug costs can be unique and somewhat daunting, the whole cancer care team, including financial counselors, would benefit from training about the needs of patients with CML.
To identify those community cancer centers with more effective practices, ACCC developed three surveys to address the adequacy and effectiveness of: 1) overall resources and processes, 2) specific clinical processes, and 3) support services used in care of patients with CML and other small-population cancers.
Most responding cancer programs offer tyrosine kinase inhibitor (TKI) therapies, and thus are offering the most advanced therapies. Many of the cancer programs surveyed have services in place to help ensure that uninsured or underinsured patients have access to these therapies, which are costly.
A key element in effective treatment is ensuring that the patient acquires and continued to take the drugs. Survey results show that a large majority of cancer programs (81 percent) schedule regular visits to check compliance with drug regimens and also check for drug side effects. However, less than half of the programs follow up between visits to check whether drug prescriptions have been filled (41 percent), and only one program was identified as having specific policies or guidelines concerning actions to ensure drug regimen compliance.
The more effective programs assess drug side effects during visits and make sure patients purchase their drugs and use them appropriately between visits. However, electronic health record (EHR) support for CML treatments (EHR with flags, or integrated with computerized order entry systems) remains limited to less than half of respondents.
For most cancer programs, opportunities for communication seem to rest mostly on informal conversations. Fewer than half of respondents automatically notify support staff if an appointment is missed, and the support team meets after the initial patient visit in less than 25 percent of the centers. Although EHRs are becoming fairly common in oncology programs, the EHR is not yet in widespread use for CML support services.
A high percentage of respondents indicated they would like to have patient education materials as well as education programs for professionals from ACCC that address the needs of patients with CML and other small-population cancers.
“For staff not directly tied in to clinical care, education about the special needs of patients with CML or other small-population cancers may be the more important effectiveness factor. Support staff can play a significant role in helping patients understand and cope with high treatment costs, drug side effects, drug compliance, and long-term survival. Each of these areas should be part of the support staff’s annual training,” said ACCC President Thomas Whittaker, MD, FACP.
This project was made possible by an educational grant from Novartis Oncology. Surveys were developed by an advisory panel of oncologists, nurses, and social workers, along with Health2 Resources, a healthcare consulting company.
The report is available on ACCC’s website, at www.accc-cancer.org.