Patient participation in the development of breast cancer patient education materials : a pilot study

The purpose of this study was to demonstrate the use of patient participation during the development of a breast cancer patient education module. The population involved in this study were 22 post-surgical breast cancer patients who were receiving drug therapy from The University of Tennessee's Hematology-Oncology Consultation Service. The Oncology Service's population base encompassed the educational and scientific communities of Knoxville and Oak Ridge, Tennessee, as well as the southern confines of Appalachia. Therefore, the patients in this study represented a broad range of socioeconomic and educational backgrounds.

The patient education developmental process was adapted from a model used by the Mayo Clinic. The process was based on the premise that patients know their own educational needs and interests better than anyone else and it recognized the patients as the educational "experts." Following the Mayo Clinic methodology, this study not only relied upon the patients to determine the content of the patient education booklets, but it also used the patients to critique the booklets once they were written.

A 75-item needs assessment questionnaire was constructed and orally administered to study participants. Based on the results of this survey plus input from the oncology staff and a review of the literature, two booklets (Hand and Arm Care, Chemotherapy and Hormone Therapy were written which focused on the patients' most immediate educational needs and interests. The booklets were checked for accuracy by members of the oncology staff before being distributed to the study's patients for their review and comment. Patients were given specific directions on how to identify those portions of the text which were unclear, not useful, or undesirable. They were also asked to indicate those portions which contained new information, to show where additional information was needed, and to comment u upon the art work. Other comments from the patients were encouraged. Additionally, all patients completed a brief questionnaire about each booklet.

The booklets were revised according to the patients' comments, rechecked for accuracy by the oncology staff, printed, and distributed.

Results from this study indicated that patients from widely varying backgrounds would participate effectively throughout the formulation of patient education materials. This was evidenced by the consistency in quality and quantity of the responses of all patients to the needs assessment interview. It was also evidenced by the fact that patients from a broad range of backgrounds completed the critique of the materials.

The data generated by this study indicated that the patients had numerous informational needs and interests.

Specific topics evoking interest included hand and arm care, prostheses and wigs, nutrition, treatment modalities, exercise, pain control, important signs and symptoms, emotional stress, and sexuality. The breast cancer patients were interested in learning about all phases of cancer detection, diagnosis, treatment, rehabilitation, and self-care. They were eager to receive this information through a variety of formats including one-to-one teaching by the physician, all types of written materials and visual aids, and group discussions where they could receive peer support and exchange ideas.

The study also pointed to the pressing need for adequate understanding of and attention to the psychosocial ramifications of breast cancer. Although it has been well documented that cancer causes profound emotional and economic stress, all patients, except those employed in the health-care professions, were totally unfamiliar with local mental health and social service resources. Moreover, almost all patients were loathe to reach out and seek help deeming that a sign of weakness.

Recommendations have been offered concerning the role of patient education in the health-care system, the role of the patient in the patient education system, and replication of this study.