Abstract P6-08-14: Meeting needs and expectations of breast cancer survivors: Learning from patients through a survey method

Abstract

Abstract Introduction: Oncology patients have many needs throughout the care continuum. Identification of the most salient needs is critical in program planning in an environment where resources are limited. Choices for programming should be based on information regarding survivors’ perceived needs and their usage of services provided by the cancer center and in the community. We developed a survey to assess needs of patients seen at our Cancer Center. The purpose of the project was to establish the feasibility of the method in the population, identify needs, use these as a basis to develop programs to meet the needs, and establish a baseline for future needs assessments. Methods: Previous U.S. cancer patient needs surveys were used as a background to create survey questions for cancer survivors using a quality of life framework. The scope of the survey was expanded based on feedback from Cancer Center leaders and Patent and Family Advisory Committee members. IRB approval was obtained and surveys were mailed to patients seen within 2 years at our sites. After eliciting demographic data, questions sought information about the performance of the cancer team and patient preferences for learning styles and what resources were used. Patients were asked by whom they preferred follow-up care to be given. Specific questions on the physical, emotional, social and spiritual effects of cancer were sought. Breast cancer respondents were compared to respondents with other types of cancer. Results: 1005 of 2750 (37%) mailed surveys were returned; 518 (51.5%) were from breast cancer survivors. Of the breast cancer survivors, mean age was 64 (range 30-94); 82% were Caucasian, 15% African-American; 62% were married; 50% were retired; 24% remained on treatment, 14% <2 years, 29% 2-5 years, 33% >5 years after treatment. Slightly more than half used non-hospital (57%) or hospital (54%) resources. Most commonly used non-hospital resource was internet (34%); most commonly used hospital resource was information from the health care team (36%). One year after treatment 90% preferred follow-up care from primary oncology team (vs. primary care physician or other). While there was concordance that “attention to my physical needs” was excellent for 76% and this was “important” for 94%, only 46% rated “attention to my emotional needs” as excellent with this was “important” for 84%. Fear of cancer recurrence was the greatest concern for patients and had not significantly resolved for the respondents >5 years after treatment. Breast cancer patients differed significantly from patients with other types of cancer having less fatigue (p<0.001), more issues with sexual intimacy (p = 0.001), more interest in obtaining genetic counseling (p = 0.001) and more fear of developing a new cancer (p = 0.01). Conclusions: This method of assessment was feasible (with a project cost of $7000), was completed in two years and can be used as a baseline. As a result of this survey our Cancer Center created an educational print resource describing our supportive oncology programs, implemented an end of treatment distress screening tool piloted with breast cancer patients, and provided staff education regarding patient needs and intervention tools. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P6-08-14.