Chauhan, Cynthia

34 Background: Patient run community based survivorship programs are rare; most are affiliated with clinics and hospitals. Aim: To highlight a community based non-hospital affiliated program that had operated successfully for 32 years and review their best practices and challenges. Methods: Data collected from Hope in the Valley support group program. In Wichita, Kansas there is a patient formed community based support group/survivorship program supported and operated privately by survivors. Results: Todate a total of 16 disease specific and 13 general cancer support groups are affiliated with the organization and all the services are housed in a building. The support groups meet in different places and are grouped according to their proximity to their residences. Services provided include lodging assistance, women's boutique, support group meetings, transportation, patient assistance program, and a hospitality center. Every new patient with cancer in the community was given a referral to the center. Cancer support groups include breast, gynecologic, lung, kidney, gastrointestinal, lymphoma, leukemia, adolescent, childhood and general cancer group. In 2014 67, 709 patients attended support groups meetings and 2000 patients attended between January- April 2015. The hospitality center had 20, 160 visits and 19,877 physician's office treatment visits were conducted in 2014. There are 3 full time staff, 7 part time staff and 200 volunteers run the organization. Challenges include recruitment of volunteers, funding for the organization, existing as an independent program from churches, hospital, clinics, or national organizations, public awareness of the program, the governance and structure of the organization. Details of the challenges and how their organization is run will be presented. Many of the patients used their services often give back as volunteers, facilitators and others. Conclusions: This is a survivorship program run by patients, actively addressing patients concerns and issues. This could provide a framework for future groups that want to form a community based patient centered cancer support group.

Abstract [Background] Patient advocates bring a unique, valuable perspective and presence to SPOREs. However, although patient advocates are recommended members of SPORE grants, guidelines are not given on the role of advocates or on measurement of the performance of advocates. [Methods] The Mayo Clinic Breast Cancer SPORE Patient Advocate Advisory Committee has developed a participation measurement tool. This tool will underpin and augment evaluations of the individual advocate contributions by the program PI and the SPORE project leaders. The Advocate Advisory Committee Chair will review the evaluations with the individual advocates. Annually, the advocate committee will review the performance of the group by the standard of the metrics. [Results] Advocates kept a log of their SPORE activities for four months then worked with a statistician to discern patterns of measurable, evaluable behaviors. The determined evaluable areas are training, scientific activity, meeting attendance, communication. Currently, those metrics are being tracked. Advocates developed the metrics together and report activities at the monthly advocate meetings. Currently, activities are simply tracked and categorized. No minimum standards are set. This will be the third step in the development of the metrics. [Conclusions] This approach is the first step in the development of meaningful evaluation of advocate SPORE activities. It quantifies the participation of advocates in the SPORE and provides the basis for developing a qualitative performance evaluation. The SPORE PI and the Committee Chair will use the evaluations to interpret the involvement of advocates in SPORE research and activities and to plan interventions to strengthen the advocate contributions to the SPORE. Citation Format: Cynthia Chauhan, Wayland Eppard, Lori Denison, Debra Gearhart, Lawanna Holmes, Ruth Kraft, Linda Miller, Mary A Sitta, Mary L Smith, James Ingle, Matthew Goetz. Measurements of advocate participation in and contributions to the Mayo Clinic breast cancer SPORE [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-09-04.

Examining the patient's subjective experience in prospective clinical comparative effectiveness research (CER) of oncology treatments or process interventions is essential for informing decision making. Patient-reported outcome (PRO) measures are the standard tools for directly eliciting the patient experience. There are currently no widely accepted standards for developing or implementing PRO measures in CER. Recommendations for the design and implementation of PRO measures in CER were developed via a standardized process including multistakeholder interviews, a technical working group, and public comments. Key recommendations are to include assessment of patient-reported symptoms as well as health-related quality of life in all prospective clinical CER studies in adult oncology; to identify symptoms relevant to a particular study population and context based on literature review and/or qualitative and quantitative methods; to assure that PRO measures used are valid, reliable, and sensitive in a comparable population (measures particularly recommended include EORTC QLQ-C30, FACT, MDASI, PRO-CTCAE, and PROMIS); to collect PRO data electronically whenever possible; to employ methods that minimize missing patient reports and include a plan for analyzing and reporting missing PRO data; to report the proportion of responders and cumulative distribution of responses in addition to mean changes in scores; and to publish results of PRO analyses simultaneously with other clinical outcomes. Twelve core symptoms are recommended for consideration in studies in advanced or metastatic cancers. Adherence to methodologic standards for the selection, implementation, and analysis/reporting of PRO measures will lead to an understanding of the patient experience that informs better decisions by patients, providers, regulators, and payers.