BACKGROUND: Cancer survivors may continue to experience psychosocial and physical needs related to their cancer experience for many years after treatment. The specification of these needs across cancer types and by survivor characteristics may lead to better prevention approaches and clinical responses. Mixed methods were used to examine responses to an open-ended question about current unmet needs from a survey of 2-, 5-, and 10-year cancer survivors. METHODS: Qualitative techniques were used to code themes of unmet needs from open-ended responses. These themes were then examined with quantitative techniques to describe the frequency of unmet needs across disease subgroups and demographic subgroups of survivors. RESULTS: There were 1514 responses to the open-ended question on unmet needs. Respondents ranged in age from 24 to 97 years and included proportionately more women, and 18% were minorities (black and Hispanic). Sixteen themes of unmet needs were identified. The number and type of unmet needs were not associated with the time since cancer treatment. Breast cancer survivors identified more unmet needs than other survivors. Male survivors and especially prostate cancer survivors identified personal control problems as current needs. Older cancer survivors identified fewer unmet needs on average than younger survivors. CONCLUSIONS: This analysis of an open-ended question on unmet needs extends our understanding of how cancer survivors perceive problems related to cancer. How cancer-related needs change over time and differ by sex, race, and ethnicity and how problems with personal control become manifest are areas of inquiry requiring further research. Cancer 2015;121:623-30.
Post-treatment survivorship has not been empirically studied to a large degree. The BCEI is one of the few interventions demonstrating effectiveness among survivors after primary treatment, suggesting that oncology nurses may be uniquely positioned to provide safe passage using education and support.
Individuals with cancer and their families assume responsibility for management of cancer as an acute and chronic disease. Yet, cancer lags other chronic diseases in its provision of proactive self-management support (SMS) in routine ‘everyday’ care leaving this population vulnerable to worse health status, long-term disability and poorer survival. Enabling cancer patients to manage the medical, emotional consequences, and lifestyle/work changes due to cancer and treatment is essential to optimizing health and recovery across the continuum of cancer. In this paper, the Global Partners on Self-Management in Cancer (GPS) puts forth six priority areas for action. Action 1: Prepare patients/survivors for active involvement in care. Action 2: Shift the care culture to support patients as partners in co-creating health and embed self-management support in everyday health care provider practices and in care pathways. Action 3: Prepare the workforce in the knowledge and skills necessary to enable patients in effective self-management and reach consensus on core curricula. Action 4: Establish and reach consensus on a patient reported outcome system for measuring the effects of self-management support and performance accountability. Action 5: Advance the evidence and stimulate research on self-management and self-management support in cancer populations. Action 6: Expand reach and access to self-management support programs across care sectors and tailored to diversity of need, and stimulation of research to advance knowledge. It’s time for a revolution to better integrate self-management support as part of high quality, person-centered support and precision medicine in cancer care to optimize health outcomes, accelerate recovery and possibly improve survival.
While most cancer survivors are at risk for being lost in the transition from treatment to survivorship, rural breast cancer survivors face special challenges that might place them at particular risk. This small scale preliminary study had two specific aims: (Aim 1) establish the feasibility of rural breast cancer survivors participation in a longitudinal quality of life (QOL) intervention trial; (Aim 2) determine the effects of the BCEI, the Breast Cancer Education Intervention, on overall QOL. Fifty-three rural breast cancer survivors were randomized to either an Experimental (n=27) or a Wait Control arm (n=26). Participants in the Experimental arm received the BCEI consisting of three face-to-face education and support sessions, two face-to-face and three telephone follow-up sessions along with supplemental written and audiotape materials over a six month period. BCEI modules and interventions are organized within a QOL framework. To address the possible effects of attention, Wait Control participants received three face to face sessions and three telephone sessions during the first six months of participation in the study, but not the BCEI intervention. Research questions addressing Aim 1 were: (a) can rural breast cancer survivors be recruited into a longitudinal intervention trial and (b) can their participation be retained. Research questions for Aim 2 were: (a) do participants who received the BCEI show improvement in overall QOL and (b) is the QOL improvement sustained over time. Data were analyzed using repeated measures general linear mixed models. Results demonstrated the ability to recruit and retain 53 rural breast cancer survivors; that the Experimental arm showed improvement in overall QOL (p=0.013), and; there were significant differences in overall QOL between the Experimental and Wait Control groups at both month 3 and month 6. Thus, it appears that at least some rural breast cancer survivors can and will participate in a larger trial, will maintain their participation and that those that do participate experience significant QOL benefit.
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