An oral history of MASCC, its origin and development from MASCC's beginnings to 2009.

INTRODUCTION: This paper presents an oral history from the mid-1980s to 2009 of the start and evolution of the Multinational Association of Supportive Care in Cancer (MASCC) as seen through the recollections of the founders and early leaders. The growth of the supportive cancer care movement and MASCC's contribution to oncology supportive care is described. DISCUSSION: As science was making progress towards better cancer treatment, a group of professionals began to research ways to prevent or mitigate the symptoms and side effects that accompany the disease and its treatments. Joining forces, they created an international, multidisciplinary organization to address and promulgate evidence-based practices of cancer supportive care. Through annual international scientific symposia, a peer-reviewed journal, an accessible website, and study group projects such as guidelines and tools, MASCC is accomplishing its mission.

Evaluation of a program for reduction of childhood aggression.

The Peaceful Alternatives to Tough Situations (PATTS) was evaluated for reduction of childhood aggression. A quasi-experimental pre- and posttest comparison group design was used to evaluate 71 PATTS participants who were selected by school personnel or juvenile caseworkers due to prior aggression. The participants responded to the Conflict Tactics Scale-Revised and a modified version of the Mauger Forgiveness Scale on the first and last group meetings. Analyses (n=71 PATTS; n=35 comparison group) indicated significant positive decreases in physical assault, psychological aggression, and vengefulness, and increased forgiveness of others in the PATTS group participants. There was also a reduction of school suspensions, principal referrals, or new criminal offenses for PATTS group participants.

A genetic history questionnaire-based system in primary prenatal care to screen for selected fetal disorders.

DNA (and other) diagnostic tests are now available for a number of serious, but uncommon, fetal disorders. We designed and evaluated a screening system for this purpose in primary care, coupled with targeted information for practitioners and patients. We developed a 15-question family history form for completion by office staff or patients, addressing conditions for which definitive diagnosis was available, linked to secondary questionnaires to follow up on "yes" answers. Guidelines for assessing risk, follow-up recommendations, and information resources were also linked. Following pilot testing, this screening system was introduced throughout Maine. We enrolled 212 providers (85-90% of the state's pregnancies). In a subsequent survey, 85% of the practices were screening all new patients and 3% some; 12% did not use the system. Time for form completion averaged 7 min. Overall, provider satisfaction was 4.4 on a five-point scale. Patients responded favorably; a minority was anxious or overwhelmed. Total referral calls to Maine's genetic/perinatal centers did not increase, but calls about family history of genetic disorders or maternal conditions increased significantly. This screening system for guiding appropriate use of DNA (and other) testing in pregnancy can be used successfully in primary care.

Telegenetics in Maine: Successful clinical and educational service delivery model developed from a 3-year pilot project.

PURPOSE: The goal of this 3-year pilot project was to increase accessibility to genetics educational and clinical services in Maine. METHODS: Southern Maine Genetics Services, Foundation for Blood Research in collaboration with Maine Telemedicine Services established telemedicine capacity to link with rural health care centers located in Northern, Central, and Southern Maine and public health nursing statewide for the provision of genetics clinical and educational services. Core partners included a rural family practice residency program, a rural pediatric practice in northern Maine, and public health nurses statewide. The telegenetics model created was based on development and implementation of a preventive and medical management technology solution, conducting a pilot study to collect data, and approaching insurance companies for reimbursement. Evaluation included surveys on the quality, acceptability, and usefulness of genetics services delivered via telemedicine, telephone interviews, and decision-making confidence evaluations. RESULTS: During the project period, 24 rural clinical sites participated. In total, 93 presentations were given, and 125 patients were evaluated. Sixty-four percent of patients evaluated were pediatric. Despite site coordinator efforts to complete satisfaction surveys, the provider and patient response level was low (18% and 25%, respectively). Of those evaluations received, provider and patient response to telegenetics was positive. Decision-making confidence for genetics and neurology consultants was high. Our experience contributes to the development of telegenetics models that can be used in other rural states.