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Use of biomarker testing in lung cancer among Puerto Rico and Florida Physicians: Results of a comparative study

Muñoz-Antonia, Teresita; Simmons, Vani N; Sutton, Steven K; Schabath, Matthew B; Alam, Iffat; Chiappori, Alberto; Quinn, Gwendolyn P
Background/UNASSIGNED:Lung cancer biomarker-driven therapies are the gold standard of treatment and recent studies suggest a higher prevalence of specific targetable biomarkers among Hispanic/Latinos (H/L) than Non-Hispanic Whites (NHW). The study aimed (1) to identify Florida (FL) and Puerto Rico (PR) physicians' knowledge and perceived value of newer genomic data regarding race/ethnicity in relation to optimal lung cancer treatment and survival; and (2) to identify modifiable practice barriers both across and within each location regarding biomarker testing in lung cancer. Methods/UNASSIGNED:A 25-item survey was administered to a stratified random sample of physicians in FL and PR (medical oncologists, radiation oncologists, pulmonologists, and pathologists). Questions targeted domains of biomarker knowledge, attitudes toward testing, barriers, and practice behaviors regarding lung cancer biomarker testing. Results/UNASSIGNED:) mutations compared to NHW. They also perceived lack of appropriate testing resources as a primary barrier compared to FL physicians (43.6% vs. 20.6%, p<0.001), whereas FL physicians identified mutation tests not conducted routinely as part of patient diagnosis as a primary barrier (43.1% vs 24.2%, p= 0.008). Conclusions/UNASSIGNED:Practice behaviors differed by specialty and between locations, and differences were noted concerning physician's preferences for ordering mutation testing, indicating a clear need for education among physicians in both locations. Impact/UNASSIGNED:Educating physicians regarding biomarker testing is imperative to improve patient care.
PMCID:6953751
PMID: 31930172
ISSN: 2380-9612
CID: 4264232

Impact of a web-based reproductive health training program: ENRICH (Educating Nurses about Reproductive Issues in Cancer Healthcare)

Quinn, Gwendolyn P; Bowman Curci, Meghan; Reich, Richard R; Gwede, Clement K; Meade, Cathy D; Vadaparampil, Susan T
OBJECTIVE:Educating Nurses about Reproductive Issues in Cancer Healthcare (ENRICH) is a web-based training program to assist oncology nurses with timely communication and relevant information regarding reproductive health issues (eg, risk of infertility, fertility preservation, and sexual health) to adolescent and young adult (AYA) patients and survivors. This manuscript describes impact on knowledge, perceived communication skills, and practice behaviors. METHODS:The eight-module course incorporated didactic content and an interactive applied learning component on the following reproductive health topics: overview, men, women, family building options, pediatrics, sexual health, communication, and practical applications. A 14-question pretest and posttest was administered to assess changes in knowledge. Additionally, participants received a follow-up survey addressing communication skills and practice behaviors. RESULTS:Over a 3-year period, 233 nurses completed the training. The mean pretest to posttest total score increased significantly (P < .001). Nurses rated their communication skills regarding risk of infertility with males as 7.5 and females as 7.4, based on a 10-point scale. Half of participants noted that they often or always discuss risk of infertility and fertility preservation options. Two-thirds indicated they refer patients to reproductive specialists, and majority (72%) indicated they document those referrals. CONCLUSIONS:ENRICH is a successful intervention for oncology nurses caring for AYA patients and survivors by increasing knowledge, communication skills, and frequency of discussion of reproductive health.
PMCID:6597246
PMID: 30882960
ISSN: 1099-1611
CID: 4173652

A randomized controlled intervention to promote readiness to genetic counseling for breast cancer survivors

Kasting, Monica L; Conley, Claire C; Hoogland, Aasha I; Scherr, Courtney L; Kim, Jongphil; Thapa, Ram; Reblin, Maija; Meade, Cathy D; Lee, M Catherine; Pal, Tuya; Quinn, Gwendolyn P; Vadaparampil, Susan T
OBJECTIVE:Breast cancer (BC) survivors with a genetic mutation are at higher risk for subsequent cancer; knowing genetic risk status could help survivors make decisions about follow-up screening. Uptake of genetic counseling and testing (GC/GT) to determine BRCA status is low among high risk BC survivors. This study assessed feasibility, acceptability, and preliminary efficacy of a newly developed psychoeducational intervention (PEI) for GC/GT. METHODS:High risk BC survivors (N = 119) completed a baseline questionnaire and were randomized to the intervention (PEI video/booklet) or control (factsheet) group. Follow-up questionnaires were completed 2 weeks after baseline (T2), and 4 months after T2 (T3). We analyzed recruitment, retention (feasibility), whether the participant viewed study materials (acceptability), intent to get GC/GT (efficacy), and psychosocial outcomes (eg, perceived risk, Impact of Events Scale [IES]). t tests or chi-square tests identified differences between intervention groups at baseline. Mixed models examined main effects of group, time, and group-by-time interactions. RESULTS:Groups were similar on demographic characteristics (P ≥ .05). Of participants who completed the baseline questionnaire, 91% followed through to study completion and 92% viewed study materials. A higher percentage of participants in the intervention group moved toward GC/GT (28% vs 8%; P = .027). Mixed models demonstrated significant group-by-time interactions for perceived risk (P = .029), IES (P = .027), and IES avoidance subscale (P = .012). CONCLUSIONS:The PEI was feasible, acceptable, and efficacious. Women in the intervention group reported greater intentions to pursue GC, greater perceived risk, and decreased avoidance. Future studies should seek to first identify system-level barriers and facilitators before aiming to address individual-level barriers.
PMID: 30883986
ISSN: 1099-1611
CID: 4173662

Provider perceptions' of a patient navigator for adolescents and young adults with cancer

LaRosa, Kayla N; Stern, Marilyn; Lynn, Courtney; Hudson, Janella; Reed, Damon R; Donovan, Kristine A; Quinn, Gwendolyn P
PURPOSE/OBJECTIVE:Healthcare providers (HCPs) and other staff at a comprehensive Cancer Center were interviewed on how to best implement a patient navigator position when working with adolescents and young adults (AYA) with cancer. Research objectives included assessing staff perceptions of (a) barriers to optimal care for AYA, (b) roles and responsibilities for a patient navigator, and (c) training needed for future patient navigators. METHODS:Semi-structured interviews were conducted with 17 staff members providing care to AYA. Verbatim transcripts were hand-coded using inductive content analysis. RESULTS:Roles and responsibilities of a patient navigator were described as needing to coordinate services, be knowledgeable of resources inside and outside the Cancer Center, provide emotional support, advocate for AYA, assist with financial and insurance issues, and serving as the first point of contact. CONCLUSIONS:Staff serving AYA reported the desired roles and training they wished a patient navigator to possess. This study contributes to the literature by conducting stakeholder assessment of the goals and roles of an AYA patient navigator (PN). PN positions should be adapted to the workflow and ethos of the institution.
PMCID:6698436
PMID: 30778757
ISSN: 1433-7339
CID: 4154062

Letter: In Response to "Words Matter in the Lives of Transgender Youth" [Letter]

Quinn, Gwendolyn P; Sampson, Amani; Campo-Engelstein, Lisa; Nahata, Leena
PMID: 31573975
ISSN: 1046-7890
CID: 4116212

A Discussion of Options, Outcomes, and Future Recommendations for Fertility Preservation for Transmasculine Individuals

Blakemore, Jennifer K; Quinn, Gwendolyn P; Fino, M Elizabeth
The process of gender affirmation may have an impact on fertility. Counseling on the impact of affirmation and opportunities for fertility, future family building, and reproductive health is an important first step in the affirmation process. This article discusses the options for fertility preservation for transmen. The barriers and outcomes in this unique population are also considered. In addition, insights are provided on the future of fertility preservation and suggestions are made for how to build a comprehensive team for male transgender patients.
PMID: 31582024
ISSN: 1558-318x
CID: 4116452

Institutional policies on posthumous reproduction using oocytes and embryos: preliminary results from a cross-sectional study [Meeting Abstract]

Trawick, E C; Sampson, A; Keefe, D L; Caplan, A L; Goldman, K N; Quinn, G P
Objective: Posthumous assisted reproduction (PAR) raises complicated ethical and legal issues. ASRM recommends that assisted reproductive technology (ART) and fertility preservation (FP) programs develop written policies regarding cases of PAR, though little is known about adoption of such policies and how they have been implemented. Our objective was to assess the presence and content of policies toward PAR using oocytes and embryos amongSociety for Assisted Reproductive Technology (SART) member clinics in the U.S.
Design(s): Cross-sectional questionnaire-based study.
Material(s) and Method(s): Our study consists of three phases of communication: email-, postal mail-, and phone-based survey. We report on the first phase of anonymous email survey responses. Surveys were emailed to ASRM-member medical directors of all SART member clinics (n=332) during March and April 2019 using a modified Dillman Method; contact information was acquired from SART and ASRM membership data. The survey included 23 multiple-choice and 3 opened-ended questions assessing practice characteristics (practice type, location, IVF cycle volume), presence of a clinic policy towards PAR, and the content of such policy. Descriptive data are presented as %, with Fisher's exact test used where appropriate, and thematic content analysis was applied to open-ended responses.
Result(s): The first phase of the study received 39 clinic responses (12% response rate). Respondents were distributed across the U.S.; average volume of IVF cycles per year ranged from < 250 to > 1500. More than one-third (35.9%, n=14) of clinics reported participating in any cases of PAR over the past five years, and 5.1% (n=2) reported participation in more than five cases. Participation in cases of PAR was not significantly associated with practice type or IVF cycle volume (p>0.05). 57.9% (n=22) had written policies towards PAR using oocytes or embryos, while 36.8% (n=14) reported they did not have a policy. Practice type, IVF cycle volume, FP volume, and prior participation in cases of PAR were not significantly associated with the presence of a policy (p>0.05). Of those with a policy, 52.4% (n=11) reported they had used that policy, 66.7% (n=10) without a policy reported they had considered adopting one, and 60.0% (n=9) reported they had received a request for PAR services. Only 44% (n=15) of clinics specified that patients not expected to survive to use oocytes due to terminal illness were eligible for oocyte cryopreservation, while 50.0% (n=17) did not specify. Open-ended comments suggested need for case-by-case appraisal and firm consent polices regarding gamete disposition.
Conclusion(s): Our preliminary results suggest that SART programs are receiving an increasing number of requests for PAR services, but many SART programs lack PAR policies, and those with policies do not always follow ASRM recommendations. As PAR cases become more common, clinics should be equipped to manage the complexities of PAR. More data are needed as this study continues, and future research is needed to understand barriers to the creation and implementation of these increasingly needed policies.
Copyright
EMBASE:2002911786
ISSN: 0015-0282
CID: 4110062

Decision Making and the Long-Term Impact of Puberty Blockade in Transgender Children [Comment]

Harris, Rebecca M; Tishelman, Amy C; Quinn, Gwendolyn P; Nahata, Leena
PMID: 31543017
ISSN: 1536-0075
CID: 4105252

A review of the psychosocial, ethical, and legal considerations for discussing fertility preservation with adolescent and young adult cancer patients

Quinn, Gwendolyn; Bleck, Jennifer; Stern, Marilyn
Objective: To examine the impact of potential infertility that often affects adolescent and young adult cancer survivors (AYA) attributable to late effects of gonadotoxic treatment. Method: This paper examines the psychosocial, legal, and ethical concerns that hinder conversations around potential infertility and considerations of fertility preservation with an AYA cancer patient. Results: Although recent guidelines advocate for providers to address the potential loss of fertility and fertility preservation with every AYA cancer patient prior to treatment, evidence suggests that many clinicians either do not discuss or discuss in a manner that does not facilitate patient decision making. Conclusions: Suggestions are offered to guide communication best practices to ensure AYA and their families receive relevant and timely information about cancer related infertility and family building options.
PSYCH:2019-51652-001
ISSN: 2169-4834
CID: 4069812

Perceptions of participating in family-centered fertility research among adolescent and young adult males newly diagnosed with cancer: A qualitative study

Nahata, Leena; Morgan, Taylor L; Lipak, Keagan G; Clark, Olivia E; Yeager, Nicholas D; O'Brien, Sarah H; Whiteside, Stacy; Audino, Anthony; Quinn, Gwendolyn P; Gerhardt, Cynthia A
BACKGROUND:Over half of male childhood cancer survivors experience infertility after treatment, which is known to cause distress and impact future quality of life. Sperm banking rates remain low, and little is known about how adolescent and young adult (AYA) males and their families make fertility preservation (FP) decisions. This study examined AYA and parent perceptions of participating in a research study focused on testing a new FP decision tool at the time of cancer diagnosis. METHODS:Forty-four participants (19 mothers, 11 fathers, 14 male AYAs 12-25 years old) from 20 families completed brief assessments at diagnosis and approximately one month later, including a qualitative interview exploring the impact of study participation. Verbatim transcripts were coded through thematic content analysis using the constant comparison method. RESULTS:Two major themes emerged: (1) a positive effect of participating in the study and (2) a neutral effect (no positive/negative effect of participation). Subthemes that emerged for participants who noted a positive effect included (a) participation prompted deeper thinking, (b) participation influenced family conversations, and (c) participation resulted in altruism/helping others. No participant reported a negative effect. CONCLUSIONS:This study demonstrates that participation in family-centered research focused on FP among AYA males, before treatment begins, is perceived as beneficial or neutral at the time of a new cancer diagnosis. These findings provide support for future family-centered FP interventions for this population.
PMID: 31407498
ISSN: 1545-5017
CID: 4043242