Genetic services for familial cancer patients: a survey of National Cancer Institute cancer centers.

In the past decade, significant progress has been made in understanding the genetic component of familial cancers. Genes associated with familial colon and breast cancers have recently been isolated and molecular diagnostic tests are expected to become available in the near future. Clinicians now have the opportunity to recognize and counsel individuals with elevated risk of cancer by identifying risk factors and genes associated with cancer predisposition. The rapid advances in molecular technology are a direct challenge to the medical community and cancer centers to supply specialized clinical services for familial cancers. We sought to ascertain the activities of cancer centers in the development of programs and the provision of genetic services for familial cancer. We surveyed 41 centers with National Cancer Institute (NCI) cancer center support grants. One half of the centers responding (17 of 34) reported that they provide some genetic services for familial cancer. About one half of these 17 centers (eight [57%] of 14; the three remaining clinics that responded had incomplete information on this indicator) see a variety of patient types on a small scale (fewer than 100 patients per year), and most provide four basic clinical evaluations: medical evaluation, cancer risk assessment, genetic counseling, and pedigree analysis. Staffing of each center varied widely, as did the types of screening services offered (including molecular diagnostic testing). Several centers (six [35%] of 17) indicated that they were in the developmental stages for serving familial cancer patients, and many seem to be increasing their activities in this area. The remaining 17 NCI-supported centers that responded, however, currently provide no genetic services for familial cancers. The results of this survey suggest that there is interest in developing clinical programs for familial cancers by NCI-supported cancer centers, but most of these programs are in developmental stages. A base line has been established to monitor future progress for the provision of cancer genetic services.

An education center for patients' high-tech learning needs.

A dynamic patient population and health care system requires that health care organizations and professionals be alert and flexible in their approach to patient care education. The University of Minnesota Hospital and Clinic has defined various generic and comprehensive educational outcomes for its patient population and initiated unique methods for obtaining them. The focus of this patient education program is the Patient Learning Center, which functions as a resource to primary professional caregivers for teaching patients and their families extensive and/or high-tech health-related activities for performance after discharge from the hospital or clinic. The Center provides patients with a lablike environment for reviewing, practicing and demonstrating skills, with mannequins, central venous access simulators, pumps, needles, audiovisuals, and so forth, under the supervision of registered nurses. Initial patient/family/caregiver response has been positive, particularly in terms of environment and learner/instructor ratio. Learning units in several areas (cystic fibrosis and diabetes) are being planned, and staff concerns regarding continuity, communication, and consistency are closely monitored.