BackgroundSelf‐management interventions for adolescent and young adult (AYA) survivors of childho... more BackgroundSelf‐management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA.ProcedureAYA (n = 224) ages 15‐29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self‐management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self‐reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA.ResultsThe SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app.ConclusionsResults support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health‐related knowledge and survivorship self‐management.
Purpose/Background: As advances in genetics and personalized medicine in cancer continue, the nee... more Purpose/Background: As advances in genetics and personalized medicine in cancer continue, the need for diversity in biorepositories becomes paramount. Research focused on the feasibility and cultural tailoring of community-based approaches to engage racial/ethnic minority communities in biospecimen donation is emerging. The session will describe the CDRN's efforts to translate, adapt and pilot test an evidenced-based biospecimen education curriculum for 6 target population groups; African American, Hispanic, Appalachian, Chinese, South Asian, and Native American. The project was undertaken by the CDRN, Region 5 of the National Cancer Institute's national Geographic Management Program (GMaP), which comprises 25 institutions in 15 states and brings together community-engaged researchers and biomedical scientists to address challenges in cancer health disparities and diverse engagement in research. Methods: Based on a rigorous adaptation process, community based pilot programs were implemented with 6 populations through 11 institutions (Fox Chase, Roswell Park, Dana-Farber Harvard, University of Illinois Chicago, University of Chicago, Cancer Institute of New Jersey, Ohio State University, Penn State Hershey, Memorial Sloan Kettering Cancer Center, Northwestern University, & Mayo Clinic. The PI and research staff at each institution identified the community groups and implemented the program based on an agreed upon protocol. The evaluation included a pre and post-program survey to assess impact on knowledge and intention to participate in biospecimen related research. Results: 530 community members participated in the pilot program at the 11 sites. The sample included 19% African American, 19% Appalachian, 18% Chinese, 17% Hispanic, 10% Native American, and 17% Southeast Asian. Preliminary analyses indicate that 14% (range 10-24%) had taken part in a research study and only 16% (range 3% to 50%) had ever donated a biospecimen. Ranked reasons to participate are: helping others in the future, improving my own health, and to contribute to new discoveries. On the post-survey, 73% strongly agreed that that program helped them to better understand biospecimen research and 3 out of 4 participants reported they were very (42%) or somewhat likely (33%)to donate a sample to a future study. Discussion: We will present on the final results of the pilot, including significant differences among the 6 populations in knowledge, attitudes and behavioral intentions. Learning Objectives Understand the Cancer Health Disparities Network (CDRN)'s process to adapt and assess impact of an evidence-based cancer and biospecimen education curriculum for diverse populations Describe the culturally-adapted Cancer 101 cancer and biospecimen education curriculum used in pilot studyUnderstand participants' knowledge and attitudes of biospecimen research across six diverse populations both pre and post education sessionExplain the CDRN's community-engaged approach to addressing cancer health disparities, diverse engagement in biospecimen research and its application to other community based research Citation Format: Linda Fleisher, Carrie Norbeck. Impact of a culturally adapted, evidence-based biospecimen education program in six populations groups: The Cancer Disparities Research Network Cancer 101. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A17.
Planning is a vital step in developing a navigation program. One should consider organizational r... more Planning is a vital step in developing a navigation program. One should consider organizational readiness, determine needed resources, consider evaluation strategies and plan for sustainability. By identifying the goal one wishes to accomplishes and following a method planning will allow for the most efficiency use of assets and resources and anticipate barriers to success. This chapter will discuss the considerations in planning including: who should be included in the process, what questions should be considered, what data should be used, and what questions a planner or planning team would develop the most comprehensive program to meet the goal. In addition, to setting goals and objectives, long term considerations are discussed including evaluation, communication of results and sustainability planning.
6003 Background: Patient (pt) participation in clinical trials remains low. We previously describ... more 6003 Background: Patient (pt) participation in clinical trials remains low. We previously described psychosocial and practical barriers to enrollment (J NCCN, 2007). During development of an intervention to improve pt preparation for consideration of clinical trials, we conducted a survey to identify pt characteristics associated with knowledge and attitudinal barriers (NIH R01 CA127655 ). METHODS Eligible pts were adults with a cancer diagnosis scheduled for their first medical oncologist visit. Informed consent was obtained to participate in a survey before the initial consultation. The survey included demographic information and an assessment of potential clinical trials barriers. Items included 19 correct-incorrect knowledge questions and 29 attitudinal barriers that were assessed on a 5-point Likert scale (1=strongly disagree, 5=strongly agree; 4-5 scored as "positive"). Cronbach's alphas and factor analysis were used to develop four attitudinal barriers subscales: fears and emotions, knowledge and finances, logistics, and mistrust of the medical system. Multiple linear regression analysis examined the relationship of demographics with barriers. RESULTS 156 pts enrolled: 40% female, 23% African American (AA), 42% college educated, mean age 58.7 years. Non-AA pts answered more knowledge questions correctly (mean 11.5 vs. 9.1, p=0.002) as did college educated pts (mean 13 vs. 9.5, p<0.001). Race was not associated with attitudinal barriers in the multivariable analysis. College education was associated with fewer attitudinal barriers (fears and emotions, p=0.092; knowledge and finances, p=0.005; logistics, p<0.001; mistrust of the medical system, p=0.049). Females scored higher on the fears and emotions subscale (p=0.015). Most commonly cited attitudinal barriers were fear of side effects on a clinical trial (54% of pts), not knowing where to find a clinical trial (40%) and unwillingness to travel extra distance for a clinical trial (39%). CONCLUSIONS Lower educational level and female gender, but not race, are independently associated with barriers to clinical trials, suggesting a tailored approach to addressing these barriers is warranted. Socioeconomic status rather than race should be a focus of these efforts.
BackgroundSelf‐management interventions for adolescent and young adult (AYA) survivors of childho... more BackgroundSelf‐management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA.ProcedureAYA (n = 224) ages 15‐29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self‐management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self‐reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA.ResultsThe SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app.ConclusionsResults support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health‐related knowledge and survivorship self‐management.
Purpose/Background: As advances in genetics and personalized medicine in cancer continue, the nee... more Purpose/Background: As advances in genetics and personalized medicine in cancer continue, the need for diversity in biorepositories becomes paramount. Research focused on the feasibility and cultural tailoring of community-based approaches to engage racial/ethnic minority communities in biospecimen donation is emerging. The session will describe the CDRN's efforts to translate, adapt and pilot test an evidenced-based biospecimen education curriculum for 6 target population groups; African American, Hispanic, Appalachian, Chinese, South Asian, and Native American. The project was undertaken by the CDRN, Region 5 of the National Cancer Institute's national Geographic Management Program (GMaP), which comprises 25 institutions in 15 states and brings together community-engaged researchers and biomedical scientists to address challenges in cancer health disparities and diverse engagement in research. Methods: Based on a rigorous adaptation process, community based pilot programs were implemented with 6 populations through 11 institutions (Fox Chase, Roswell Park, Dana-Farber Harvard, University of Illinois Chicago, University of Chicago, Cancer Institute of New Jersey, Ohio State University, Penn State Hershey, Memorial Sloan Kettering Cancer Center, Northwestern University, &amp; Mayo Clinic. The PI and research staff at each institution identified the community groups and implemented the program based on an agreed upon protocol. The evaluation included a pre and post-program survey to assess impact on knowledge and intention to participate in biospecimen related research. Results: 530 community members participated in the pilot program at the 11 sites. The sample included 19% African American, 19% Appalachian, 18% Chinese, 17% Hispanic, 10% Native American, and 17% Southeast Asian. Preliminary analyses indicate that 14% (range 10-24%) had taken part in a research study and only 16% (range 3% to 50%) had ever donated a biospecimen. Ranked reasons to participate are: helping others in the future, improving my own health, and to contribute to new discoveries. On the post-survey, 73% strongly agreed that that program helped them to better understand biospecimen research and 3 out of 4 participants reported they were very (42%) or somewhat likely (33%)to donate a sample to a future study. Discussion: We will present on the final results of the pilot, including significant differences among the 6 populations in knowledge, attitudes and behavioral intentions. Learning Objectives Understand the Cancer Health Disparities Network (CDRN)'s process to adapt and assess impact of an evidence-based cancer and biospecimen education curriculum for diverse populations Describe the culturally-adapted Cancer 101 cancer and biospecimen education curriculum used in pilot studyUnderstand participants' knowledge and attitudes of biospecimen research across six diverse populations both pre and post education sessionExplain the CDRN's community-engaged approach to addressing cancer health disparities, diverse engagement in biospecimen research and its application to other community based research Citation Format: Linda Fleisher, Carrie Norbeck. Impact of a culturally adapted, evidence-based biospecimen education program in six populations groups: The Cancer Disparities Research Network Cancer 101. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A17.
Planning is a vital step in developing a navigation program. One should consider organizational r... more Planning is a vital step in developing a navigation program. One should consider organizational readiness, determine needed resources, consider evaluation strategies and plan for sustainability. By identifying the goal one wishes to accomplishes and following a method planning will allow for the most efficiency use of assets and resources and anticipate barriers to success. This chapter will discuss the considerations in planning including: who should be included in the process, what questions should be considered, what data should be used, and what questions a planner or planning team would develop the most comprehensive program to meet the goal. In addition, to setting goals and objectives, long term considerations are discussed including evaluation, communication of results and sustainability planning.
6003 Background: Patient (pt) participation in clinical trials remains low. We previously describ... more 6003 Background: Patient (pt) participation in clinical trials remains low. We previously described psychosocial and practical barriers to enrollment (J NCCN, 2007). During development of an intervention to improve pt preparation for consideration of clinical trials, we conducted a survey to identify pt characteristics associated with knowledge and attitudinal barriers (NIH R01 CA127655 ). METHODS Eligible pts were adults with a cancer diagnosis scheduled for their first medical oncologist visit. Informed consent was obtained to participate in a survey before the initial consultation. The survey included demographic information and an assessment of potential clinical trials barriers. Items included 19 correct-incorrect knowledge questions and 29 attitudinal barriers that were assessed on a 5-point Likert scale (1=strongly disagree, 5=strongly agree; 4-5 scored as "positive"). Cronbach's alphas and factor analysis were used to develop four attitudinal barriers subscales: fears and emotions, knowledge and finances, logistics, and mistrust of the medical system. Multiple linear regression analysis examined the relationship of demographics with barriers. RESULTS 156 pts enrolled: 40% female, 23% African American (AA), 42% college educated, mean age 58.7 years. Non-AA pts answered more knowledge questions correctly (mean 11.5 vs. 9.1, p=0.002) as did college educated pts (mean 13 vs. 9.5, p<0.001). Race was not associated with attitudinal barriers in the multivariable analysis. College education was associated with fewer attitudinal barriers (fears and emotions, p=0.092; knowledge and finances, p=0.005; logistics, p<0.001; mistrust of the medical system, p=0.049). Females scored higher on the fears and emotions subscale (p=0.015). Most commonly cited attitudinal barriers were fear of side effects on a clinical trial (54% of pts), not knowing where to find a clinical trial (40%) and unwillingness to travel extra distance for a clinical trial (39%). CONCLUSIONS Lower educational level and female gender, but not race, are independently associated with barriers to clinical trials, suggesting a tailored approach to addressing these barriers is warranted. Socioeconomic status rather than race should be a focus of these efforts.
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