The Patient-Centered Outcomes Research Institute (PCORI) defines engagement in research as the meaningful involvement of patients, caregivers, clinicians, insurers, and others throughout the entire research process—from planning to conducting the study to disseminating study results. The purposes of this paper are to (a) describe methods used to engage community members across the various phases of a PCORI-funded comparative effectiveness trial to increase colorectal cancer screening; and (b) report results of qualitative and quantitative evaluations of community advisory board members’ experiences on this project. Decisions to join and stay engaged with the study included feeling valued and appreciated, being compensated, the opportunity to contribute to research based on their skills and expertise, and being committed to colon cancer prevention efforts. Challenges identified by advisory board members included the significant time commitment, transportation, and meeting location. Lessons learned and guidance for researchers committed to patient and community engagement are described.
Type 2 diabetesBackground: Diabetes (type 2) is a risk factor for developing peripheral neuropathy (PN) symptoms in breast cancer survivors (BCS). Because PN symptoms are associated with deficits in physical functioning and quality of life, more information is needed about the effects of PN symptoms on the lives of BCS with diabetes. Objective: The aim of this study was to describe the experiences of PN among BCS with diabetes from their own perspectives. Interventions/Methods: This substudy is part of a larger investigation examining factors associated with cancer-related cognitive impairment in cancer survivors. Female early-stage (stage I-III) BCS with diabetes and PN symptoms were eligible to participate. A qualitative descriptive approach using purposive sampling and semistructured interviews was used. Participant narratives were summarized using standard content analytic techniques. Results: Eleven BCS with diabetes and PN symptoms were interviewed. Participants described PN symptoms that were varied, were often persistent, and had troublesome effects on their physical functioning and quality of life. Participants used a variety of self-management strategies and prescription and overthe-counter medications to manage their PN symptoms. Some said that having both cancer and diabetes exacerbated the PN symptoms and complicated symptom management. Conclusion: Peripheral neuropathy symptoms can have a profound effect on the lives of BCS with diabetes and should be addressed by healthcare providers.Implications for Practice: Clinical care for this population should include ongoing assessment of PN symptoms, conversations about the effects of these symptoms on everyday life, evidence-based treatment for the symptoms, and support for symptom selfmanagement.
Purpose: Improving understanding of behaviors that increase or reduce cancer risk for different Hispanic groups is a public health priority; such knowledge is sparse in new gateway immigration locations such as Indiana. The aims of this study were to: 1) describe cancer beliefs and cancer preventive/risk reduction behaviors (physical activity, tobacco, and alcohol use) among Hispanic adults; 2) examine differences in cancer beliefs and preventive behaviors by country of birth, socioeconomic status, and area of residence (urban vs. rural); and 3) determine predictors of engagement in cancer prevention and risk reduction behaviors in this population.Methods: A cross-sectional online survey targeted adult Indiana residents who identified as Latino, Hispanic, or Spanish recruited using Facebook-targeted advertising. Complete survey data from 1520 respondents were analyzed using descriptive, unadjusted, and adjusted models. Results: The majority of respondents believed they were unlikely to get cancer but held many other fatalistic beliefs about cancer. Only 35.6% of respondents had received the HPV vaccine, 37.6% reported they were currently smoking cigarettes, and 64% reported occasional or frequent drinking of alcohol. Respondents spent an average of 3.55 days per week engaged in moderate exercise. Differences were observed by country of birth, income, and education but not by rural residence status. Predictors of cancer risk/risk reduction behaviors were identified. Conclusion: The Hispanic population in Indiana is diverse and effective interventions for cancer prevention should be culturally targeted based on country of birth and individually tailored based on cancer-related beliefs.
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