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    Awarded Grants
    Beyond Survival: Assessing and Addressing the Needs of Breast Cancer Survivors Suffering from Post-Treatment Symptomology

    Scientific Abstract:
    Beyond Survival: Assessing and addressing the needs of Breast Cancer Survivors suffering from post-treatment symptomology (Scientific Abstract) This project addresses the educational and informational needs of breast cancer survivors (BCS) who suffer from long-term, debilitating symptoms subsequent to completing surgery, radiation and/or chemotherapy. These symptoms are wide ranging and include fatigue, memory loss, joint degeneration, and sexual dysfunction. Though the medical community has recently begun to investigate the etiology of some of these symptoms, particularly fatigue and “chemo brain,” generally this is a poorly understood phenomenon, and sufferers have unexplored needs. The proposed project evolved from a previous pilot study by this researcher that documented the range of symptoms experienced by BCS, assessed psychosocial well being, and investigated the self-management of subjective symptoms. Data from this study show that while most women seek initial treatment for their conditions from physicians, many report that symptoms are not effectively addressed or acknowledged by medical providers. In turn, family, friends, and employers may discount the patients’ experiences as psychosomatic. Consequently, these women are subject to profound uncertainty, isolation, and fear of recurrence as physical problems are thought to denote metastatic disease. Our data strongly suggest a need for educational and informational materials for these BCS. The proposed study would utilize a three-tiered approach: an assessment of need among these BCS, the development of appropriate educational media, and an evaluation of the utility of these materials. We aim to develop four sets of media: an educational video, a patient brochure, an interactive web site, and specialized support groups. We expect that the materials will provide women with information and resources about their condition, enhance patient self-advocacy, and legitimate their disease experience. We also aim to educate the medical/cancer care community and the general public as to the nature and validity of these symptoms. In Year One of the study, we will survey 100 women suffering from symptoms to assess content areas that they feel are lacking from their interactions with medical providers and support networks. From these data, preliminary materials will be developed in each of the four media. Thirty-two survey respondents will be randomly selected to participate in focus groups prior to completion of the materials. During the focus groups, participants will be asked to review the preliminary materials and to offer feedback on their content and effectiveness. Based upon these data, the materials will be refined and produced for public use. Focus group participants will receive a full set of materials and be asked to utilize them; survey respondents will be made aware of the availability of materials. In Year Two, the survey pool will be polled to determine whether they sought out and used the media and if it were helpful in managing their symptoms both tangibly and psychologically. The focus group participants will reconvene and be asked how they employed the various media provided to them and the extent to which it impacted their quality of life. From these data, we will derive a sense of which materials are most useful in what capacities. While the targeted population for this research and implementation effort is BCS experiencing post-treatment symptoms, we expect that family and friends of sufferers as well as support group leaders and health care providers will also utilize this material. Because the educational and informational materials herein proposed will be easy to replicate and disseminate, we also anticipate that our project may have broad application to a national population of BCS suffering from these chronic and debilitating treatment side-effects.

    Lay Abstract:
    Beyond Survival: Assessing and addressing the needs of Breast Cancer Survivors suffering from post-treatment symptomology (Lay Abstract) This project addresses the educational and informational needs of breast cancer survivors (BCS) who suffer from long-term, debilitating symptoms subsequent to completing surgery, radiation and/or chemotherapy. These symptoms are wide ranging and include fatigue, memory loss, joint degeneration, and sexual dysfunction. Though the medical community has recently begun to investigate some of these symptoms, particularly fatigue and “chemo brain,” generally this is a poorly understood phenomenon, and sufferers have unexplored needs. The proposed project evolved from a previous pilot study by this researcher that documented the range of symptoms experienced by BCS, assessed emotional state, and investigated the self-management of subjective symptoms. Data from this study show that while most women seek initial treatment for their conditions from physicians, many report that symptoms are not effectively addressed or acknowledged by medical providers. In turn, family, friends, and employers may discount the patients’ experiences as psychosomatic. Consequently, these women are subject to profound uncertainty, isolation, and fear of recurrence as physical problems are thought to represent cancer recurrence. Our data strongly suggest a need for educational and informational materials for these BCS. The proposed study would utilize a three-tiered approach: an assessment of need among these BCS, the development of appropriate educational media, and an evaluation of the utility of these materials. We aim to develop four sets of media: an educational video, a patient brochure, an interactive web site, and specialized support groups. We expect that the materials will provide women with information and resources about their condition, enhance patient self-advocacy, and legitimate their disease experience. We also aim to educate the medical/cancer care community and the general public as to the nature and validity of these symptoms. In Year One of the study, we will survey 100 women suffering from symptoms to assess content areas that they feel are lacking from their interactions with medical providers and support networks. From these data, preliminary materials will be developed in each of the four media. Thirty-two survey respondents will be randomly selected to participate in focus groups prior to completion of the materials. During the focus groups, participants will be asked to review the preliminary materials and to offer feedback on their content and effectiveness. Based upon these data, the materials will be refined and produced for public use. Focus group participants will receive a full set of materials and be asked to utilize them; survey respondents will be made aware of the availability of materials. In Year Two, the survey pool will be polled to determine whether they sought out and used the media and if it were helpful in managing their symptoms. The focus group participants will reconvene and be asked how they employed the various media provided to them and the extent to which it impacted their quality of life. From these data, we will derive a sense of which materials are most useful in what capacities. While the targeted population for this research and implementation effort is BCS experiencing post-treatment symptoms, we expect that family and friends of sufferers as well as support group leaders and health care providers will also utilize this material. Because the educational and informational materials proposed will be easy to replicate and distribute, we also anticipate that our project may have broad application to a national population of BCS suffering from these chronic and debilitating treatment side-effects.