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Patient, caregiver and physician perspectives on participating in a thoracic rapid tissue donation program

Quinn, Gwendolyn P; Pentz, Rebecca D; Muñoz-Antonia, Teresita; Boyle, Theresa A; Schabath, Matthew B; Pratt, Christie L; Shaffer, Andrea; Duarte, Luisa F; Bowman-Curci, Meghan; Antonia, Scott J; Chiappori, Alberto A; Creelan, Benjamin C; Gray, Jhanelle E; Williams, Charles C; Haura, Eric B
OBJECTIVE:The collection of posthumous tissue from advanced stage lung cancer patients is beneficial to medical science. Recruiting living patients to a Rapid Tissue Donation Program (RTD) poses several psychosocial challenges and little is known about perceptions of joining this type of program. This study qualitatively examined perceptions of advanced stage lung cancer patients (n=14) participating in a lung cancer RTD program, their NoK (n=11), and physicians (n=6) at the Thoracic Oncology Clinic at H. Lee Moffitt Cancer Center & Research Institute, Tampa, Florida USA. METHODS:Semi-structured interviews were conducted with participants and interview transcripts were analyzed using the constant comparison method. RESULTS:Majority of patients joined to give back to research, discussed participation with family members, and desired for family to receive information about the use of the tissue after their death. All participating NoK were supportive of their family member's decision. Physicians described the program as running smoothly, but provided suggestions for process improvements. CONCLUSION/CONCLUSIONS:Participants joined with intention to give back to research community and families were supportive of loved one's participation in RTD. Physicians agreed with overall process. PRACTICE IMPLICATIONS/CONCLUSIONS:Key factors for a successful RTD program is tailoring to institutional and individual needs.
PMCID:5878993
PMID: 29195718
ISSN: 1873-5134
CID: 2888772

Developing Sustainable Cancer Education Programs: Training Public Health Students to Deliver Cancer 101 in Puerto Rico

Rivera, Y M; Moreno, L; Briant, K J; Velez, H; Jimenez, J C; Torres, J; Vadaparampil, S T; Munoz-Antonia, T; Quinn, G P
The use of promotores to educate Hispanic communities about different health topics has been proven successful, albeit with limitations in program sustainability. The goal of this study was to develop a sustainable train-the-trainer model to train graduate public health (PH) students to disseminate cancer education among communities in Puerto Rico (PR). Graduate students (n = 32) from Ponce Health Sciences University's (PHSU) PH program participated in a 2-day Cancer 101 training, where they learned how to deliver nine cancer modules to the community. Cancer knowledge was assessed before and after the training via 54 items measuring discussed concepts. Participants also assessed the training's effectiveness by completing a training evaluation informed by social cognitive theory (SCT) constructs of self-efficacy, outcome expectations, facilitation, and observational learning. Participants were mainly female (78.1 %), 26.7 +/- 3.9 years old, and enrolled in a Masters-level program (81.3 %). Participants reported an average 11.38-point increase in cancer knowledge after attending the training [t(31) = 14.88, p < .001]. Participants also evaluated the training favorably upon completion, reporting satisfactory comments in the open-ended responses and high scores on measured SCT constructs. The Cancer 101 training program effectively prepared students to deliver cancer education to local communities. Training graduate PH students to educate communities about health issues is an innovative, and potentially sustainable, way to reach underserved populations.
PMCID:5243927
PMID: 27424481
ISSN: 1543-0154
CID: 2586992

Community Engagement for Identifying Cancer Education Needs in Puerto Rico

Jimenez, Julio; Ramos, Axel; Ramos-Rivera, Francisco E; Gwede, Clement; Quinn, Gwendolyn P; Vadaparampil, Susan; Brandon, Thomas; Simmons, Vani; Castro, Eida
Cancer is the leading cause of death in Puerto Rico, suggesting a need for improved strategies, programs, and resources devoted to cancer prevention. Enhanced prevention needs in Puerto Rico were initially identified in pilot studies conducted by the Ponce School of Medicine (PSM) in collaboration with the H. Lee Moffitt Cancer Center (MCC). In the current study, we used community engagement to identify specific needs in cancer prevention and education and strategies to create culturally attuned, effective cancer prevention education programs. A total of 37 participants attended a community forum and were assigned to one of three discussion groups: patients/survivors (n = 14); family/caregivers (n = 11); or healthcare providers (n = 12). Most participants were women (73 %), over 35 years of age, and a majority were married (58 %) and had a university education (81 %). The sessions were recorded and transcribed and analyzed for key themes. Participants wanted improved awareness of cancer prevention in Puerto Rico and believed cancer prevention education should start early, ideally in elementary school. Participants also stressed the importance of creating partnerships with private and government agencies to coordinate educational efforts. Suggested strategies included outreach to communities with limited resources, incorporating the testimony of cancer survivors, and utilizing social media to disseminate cancer prevention information.
PMCID:5386827
PMID: 27722911
ISSN: 1543-0154
CID: 2586942

Physician Communication Practices as a Barrier to Risk-Based HPV Vaccine Uptake Among Men Who Have Sex with Men

Wheldon, Christopher W; Sutton, Steven K; Fontenot, Holly B; Quinn, Gwendolyn P; Giuliano, Anna R; Vadaparampil, Susan T
The Advisory Committee on Immunization Practices recommends that men who have sex with men (MSM) 26 years of age or younger be routinely vaccinated against HPV. For men outside of this risk-based population, the recommendation is routine vaccination until age 21. Thus, in order for this risk-based recommendation for MSM to be implemented, two distinct actions need to be completed during the clinical visit: (1) discuss recommendations for HPV vaccination with men and (2) assess sexual orientation to determine if a risk-based recommendation should be made. We assessed the degree to which physicians routinely discussed issues of sexual orientation and HPV vaccination with male patients 22-26 years old. We used data from a statewide representative sample of 770 primary care physicians practicing in Florida who were randomly selected from the American Medical Association Physician Masterfile. The analytic sample consisted of physicians who provided care to men 22-26 years old (N = 220). Response rate was 51%. Data collection took place in 2014 and analyses in 2016. Only 13.6% of physicians were routinely discussing both sexual orientation and HPV vaccination with male patients 22-26 years old, and approximately a quarter (24.5%) were not discussing either. Differences in these behaviors were found based on gender, Hispanic ethnicity, availability of HPV vaccine in clinic, HPV-related knowledge, and specialty. A minority of physicians in this sample reported engaging with these patients in ways that are mostly likely to result in recommendations consistent with current Advisory Committee on Immunization Practices guidelines.
PMID: 28456947
ISSN: 1543-0154
CID: 2586752

Evaluation of Promotional Materials To Promote Low-Dose Computed Tomography (LDCT) Screening to High-Risk Consumers and Health Care Providers

Hudson, Janella N; Quinn, Gwendolyn P; Wilson, Lauren E; Simmons, Vani N
Low-dose computed tomography (LDCT) screening is a promising screening modality for increasing the detection rate of early stage lung cancers among high-risk individuals. Despite being recommended by the US Preventative Services Task Force, uptake of LDCT remains low. The objective of the current study was to gather feedback from high-risk consumers and health care providers on LDCT promotional materials. Focus group discussions were conducted with high-risk individuals (8 focus groups; N = 38) and primary care providers (9 focus groups; N = 23). Participants reviewed existing LDCT promotional materials to assess their perceptions of media materials created to publicize LDCT. Data were analyzed using the constant comparative method. Several key themes emerged from focus groups that can be used to inform development of future LDCT promotional materials. High-risk (HR) participants expressed greater receptivity for promotional materials that did not further stigmatize lung cancer and/or smoking and expressed preferences for materials that clearly outlined the risks/benefits of screening. Primary care providers (PCPs) offered suggestions to facilitate the referral process such as diagnostic codes and requested a design that clearly outlined eligibility criteria. A clear and thorough explanation of LDCT eligibility, cost, harms, and benefits was of chief importance for both PCP and HR audiences. Given that PCPs and HR audiences are not well informed on the specifics of LDCT screening eligibility and insurance coverage, creating provider and patient education opportunities will aid in shared decision-making opportunities. Promotional materials that meet the needs of the target audience are needed to facilitate discussions of risks/benefits of screening with HR individuals.
PMID: 28285419
ISSN: 1543-0154
CID: 2586792

Comparison of Health Communication Channels for Reaching Hispanics About Biobanking: a Pilot Trial

McIntyre, Jessica; Jimenez, Julio; Rivera, Yonaira M; Sutton, Steven K; Asencio, Gloria; Castro-Figueroa, Eida M; Gwede, Clement K; Brandon, Thomas H; Vadaparampil, Susan T; Simmons, Vani N; Corchado, Johanna; Moreno, Laura; Wells, Kristen J; Quinn, Gwendolyn P
Cancer education is essential for improving cancer prevention and biobanking knowledge among racial-ethnic minorities, with the goal of increasing diversity and representativeness of biospecimen collections. However, little is known about the communication modalities for optimal delivery of information. We examined feasibility of recruitment and compared communication modalities for delivering cancer prevention and biobanking education to Hispanics. Communication modalities were evaluated using participation rates and change in knowledge, attitudes, self-efficacy, intention, receptivity, and trust. Enrollment in a biobanking registry was a behavioral outcome. Community members in Ponce, Puerto Rico and Tampa, Florida were recruited. Participants (N = 254) were randomized to one of three communication modalities: standard dissemination (mailed materials); enhanced dissemination (mailed materials plus follow-up call); and 'charla' (face-to-face group discussion). Participants completed questionnaires about their knowledge, attitudes, self-efficacy, intentions, receptivity, and trust regarding biobanking and cancer prevention pre- and post-intervention. Knowledge, attitudes, and self-efficacy were improved among all three modalities. Although the greatest increases in knowledge were observed when the information was delivered via charla, the charla had the lowest participation rate. The standard and enhanced dissemination modalities were more feasible for delivering cancer prevention and biobanking education to Hispanics. Lack of differences among the three modalities suggests culturally tailored education may be sufficient to capture the community's intention to participate in biobanking research, regardless of the delivery method for the education. Results from this study contribute to the limited knowledge regarding Hispanics knowledge and intentions for biospecimen collection, and in the future may improve participation in this underrepresented group.
PMCID:5628139
PMID: 28378199
ISSN: 1543-0154
CID: 2586772

Fertility Preservation in Breast Cancer

O'Donoghue, Cristina; Quinn, Gwendolyn P; Lee, M Catherine
As more young women survive breast cancer, fertility preservation (FP) is an important component of care. This review highlights the importance of early pretreatment referral, reviews the risks of infertility associated with breast cancer treatment, and defines existing and emerging techniques for FP. The techniques reviewed include ovarian suppression, embryo cryopreservation, oocyte cryopreservation, and ovarian tissue cryopreservation and transplantation. The barriers women face, such as not being appropriately referred and the costs of treatment, also are addressed. Multidisciplinary, patient-centered care is essential to discussing FP with patients with breast cancer and ensuring appropriate care that includes quality of life in survivorship.
PMID: 28973701
ISSN: 1541-8243
CID: 2903362

A randomized controlled trial of a smoking cessation self-help intervention for dual users of tobacco cigarettes and E-cigarettes: Intervention development and research design

Meltzer, Lauren R; Simmons, Vani N; Sutton, Steven K; Drobes, David J; Quinn, Gwendolyn P; Meade, Cathy D; Unrod, Marina; Brandon, Karen O; Harrell, Paul T; Eissenberg, Thomas; Bullen, Christopher R; Brandon, Thomas H
Electronic Nicotine Delivery Systems, also called electronic cigarettes or e-cigarettes, have been available for over a decade and use has been increasing dramatically. The primary reported reasons for use are to aid smoking cessation or reduction, yet a significant proportion appear to be long-term users of both products ("dual users"). Dual users may be motivated to quit smoking and might benefit from a behavioral intervention for smoking cessation. This paper describes the intervention development, as well as the design, methods, and data analysis plans for an ongoing randomized controlled trial (RCT). Formative research and learner verification were conducted to create a usable, understandable, and acceptable self-help intervention targeting dual users. The efficacy is being tested in an RCT with current dual users (N=2900) recruited nationally and randomized to one of three conditions. The Assessment Only (ASSESS) group only completes assessments. The Generic Self-Help (GENERIC) group receives non-targeted smoking cessation booklets and supplemental materials sent monthly over 18months. The e-cigarette Targeted Self-Help (eTARGET) group receives the newly developed intervention (targeted booklets and supplemental materials) sent over the same period. All participants complete self-report surveys every 3months over 2years. The primary study outcome is self-reported 7-day point prevalence abstinence. Cost-effectiveness metrics for the GENERIC and eTARGET interventions will also be calculated.
PMCID:5559662
PMID: 28648969
ISSN: 1559-2030
CID: 2903422

Expanding Parental Permission in Pediatric Treatment: A Hasty Generalization

Nahata, Leena; Quinn, Gwendolyn P
PMID: 29111930
ISSN: 1536-0075
CID: 2903332

New Promising Strategies in Oncofertility

Hudson, Janella N; Stanley, Nathanael B; Nahata, Leena; Bowman-Curci, Meghan; Quinn, Gwendolyn P
INTRODUCTION/BACKGROUND:Approximately 70,000 adolescent and young adults (AYA) are diagnosed with cancer each year. While advancements in treatment have led to improved prognosis and survival for patients, these same treatments can adversely affect AYA reproductive capacity. Localized treatments such as surgery and radiation therapy may affect fertility by removing or damaging reproductive organs, and systemic therapies such as chemotherapy can be toxic to gonads, (ovaries and testicles), thus affecting fertility and/or endocrine function. This can be traumatic for AYA with cancer as survivors often express desire to have genetic children and report feelings of regret or depression as a result of infertility caused by cancer treatments. AREAS COVERED/UNASSIGNED:Emerging technologies in the field of assisted reproductive technology offer new promise for preserving the reproductive capacity of AYA cancer patients prior to treatment as well as providing alternatives for survivors. The following review revisits contemporary approaches to fertility preservation as well newly developing technologies. EXPERT COMMENTARY/UNASSIGNED:There are several advances in ART that hold promise for patients and survivors. However there are challenges that inhibit uptake including poor communication between providers and patients about risks and fertility preservation options; high costs; and lack of insurance coverage for fertility preservation services.
PMCID:5612405
PMID: 28959743
ISSN: 2380-9000
CID: 2903372