RESUMO
BACKGROUND: There are more than 18 million cancer survivors in the United States. Yet, survivors of color remain under-represented in cancer survivorship research (Saltzman et al. in Contemp Clin Trials Commun 29:100986, 2022; Pang et al. in J Clin Oncol 34:3992-3999, 2016; Lythgoe et al. in Prostate Cancer Prostatic Dis 24:1208-1211, 2021). Our long-term goal is to enroll and follow a cohort of historically under-represented cancer survivors, to better understand modifiable risk factors that influence clinical and quality of life outcomes in these populations. Towards that goal, we describe herein how we applied community-based participatory research approaches to develop inclusive study materials for enrolling such a cohort. METHODS: We implemented community engagement strategies to inform and enhance the study website and recruitment materials for this cohort including: hiring a dedicated engagement coordinator/community health educator as a member of our team; working with the Helen Diller Family Comprehensive Cancer Center Office of Community Engagement (OCE) and Community Advisory Board members; presenting our educational, research, and study recruitment materials at community events; and establishing a community advisory group specifically for the study (4 individuals). In parallel with these efforts, 20 semi-structured user testing interviews were conducted with diverse cancer survivors to inform the look, feel, and usability of the study website. RESULTS: Engagement with community members was a powerful and important approach for this study's development. Feedback was solicited and used to inform decisions regarding the study name (eat move sleep, EMOVES), logo, study website content and imagery, and recruitment materials. Based on community feedback, we developed additional educational materials on healthy groceries and portion size in multiple languages and created a study video. CONCLUSIONS: Including an engagement coordinator as a permanent team member, partnering with the institutional community outreach and engagement resources (i.e., OCE), and allocating dedicated time and financial support for cultivating relationships with stakeholders outside the university were critical to the development of the study website and materials. Our community guided strategies will be tested as we conduct enrollment through community advisor networks and via the state cancer registry.
Under-represented racial and ethnic populations are diagnosed with and die from cancer at higher rates than white Americans but are less likely to be included in research studies. This has resulted in limited data on these populations, especially regarding cancer survivorship and lifestyle factors such as diet, exercise, and sleep. Our aim was to develop inclusive and appealing study materials for enrolling a diverse cancer survivorship cohort by integrating a community engagement coordinator/health educator into the research team and collaborating with our cancer center's office of community engagement community advisory board. An additional bridge was developed between community partners and the research team by establishing a community advisory board specifically for the study. We also conducted 20 user testing interviews with cancer survivors and community stakeholders to inform the look, feel, and usability of the study website during development. Our community partnerships and interviews assisted with decisions on our study name, Eat Move Sleep Study (EMOVES), logo, redesigning the study website, and study format. Our partners also provided guidance that highlighted community need and development of new educational materials for healthy diet (postcard sized grocery list on healthy eating) and a video-based recruitment tool for the study. Incorporation of an engagement coordinator into the research team, building an ongoing relationship with our cancer center's office of community engagement, and adding community advisors onto our study team has greatly impacted our study approach and design.
RESUMO
Objetivo. Describir la respuesta inmunopatológica de cinco pacientes peruanos con pénfigo foliáceo endémico antes y seis meses después de la terapia con corticosteroides sistémicos. Material y métodos. Estudio descriptivo de tipo serie de casos. Los pacientes fueron sometidos a examen físico, se obtuvodatos cínicos y, luego, una muestra de sangre, a la que se le realizó inmunofluorescencia indirecta (IFI). Se usó como sustratos esófago de mono y piel humana normal, Elisa IgM antidesmogleína 1, Elisa IgG antidesmogleína 1 (total y subclases), inmunoprecipitación (IP) antidesmogleína 1 y antidesmogleína 3. Los pacientes recibieron tratamiento con corticosteroides sistémicos por seis meses obteniéndose nuevamente una muestra de sangre para estudiar su evolución inmunopatológica. Resultados. Al examen físico inicial tres pacientes presentaban la forma clínica generalizada y dos, la localizada; a los seis meses de tratamiento solo un paciente presentaba lesiones activas debido a que su tratamiento había sido irregular. La IgManti-DSG-1 no mostró variaciones importantes manteniéndose positiva en un paciente y haciéndose positiva en un paciente inicialmente negativo. El Elisa para anticuerpos IgG4 se redujo notablemente en todos los pacientes incluidos los que tenían tratamiento irregular. De los dos pacientes que presentaban anticuerpos anti-DSG-3 (Elisa) uno redujo sus valores índices y elotro se hizo negativo; mientras que un paciente inicialmente negativo desarrolló al final del tratamiento anti-DSG-3. Conclusión. La respuesta antidesmogleína 1 IgG total e IgG4 así como la respuesta antidesmogleína 3 muestran reducción de sus valores índices con tendencia a la negativización luego de seis meses de tratamiento lo cual es evidenciado también con la IFI. La respuesta IgM antidesmogleína 1 no mostró variaciones importantes a pesar del tratamiento.
Aim. To describe the immunopathologic response in five patients with endemic pemphigus foliaceus (EPF) before and after six months of therapy with systemic corticosteroids. Material and methods. Case series study. Each patient was examined by a dermatologist who gathered the clinical information. A serum sample was obtained for indirect immunofluorescence (IFI) with monkey esophagous (ME) and normal human skin (NHS) assubstrates. Also, Elisa for IgM and IgG (total and subclasses) antidesmoglein 1 antibodies and immunoprecipitation (IP) for antidesmoglein 1 and 3 were carried out. All the patients received treatment with systemic corticosteroids for six months and blood serum was drawn after wards to assess the immunopathologicresponse. Results. On physical exam, 3 patients had the generalized form ofEPF, 2 patients had the localized form and one patient had someactive lesions because he was not compliant with the therapy.Anti-IgM desmoglein 1 values were decreased in 4 patients buta couple of the values remained unchanged or even increased because they were not completely compliant with the treatment.IgG4 desmoglein 1 antibodies were notably decreased in all the patients. A couple of patients who had antibodies against desmoglein 3 decreased, being one of them negative. One of the patients was initially negative for antibodies against desmoglein3 but later on, he developed anti desmoglein 3 antibodies.Conclusion. The immunological response against IgG and IgG4desmoglein 1 as well as against desmoglein 3 were reduced after the treatment and showed a tendency to become negative. This was correlated with IFI values as well. IgM desmoglein antibodies didnot show important variations despite of the corticosteroid treatment.
