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Shared Decision-Making Experiences of Couples with Inherited Cancer Risk Regarding Family Building

Dean, Marleah; Hintz, Elizabeth A; Baker, Jonathan; Reblin, Maija; Quinn, Gwendolyn P; Haskins, Carolyn; Vadaparampil, Susan T
Patients with hereditary cancer predisposition syndromes have a high likelihood of passing germline mutations to future offspring. Patients at risk for inherited cancer may not have started and/or completed building their families; thus, they must decide about having children and consider the possibility of passing on their germline mutation. Utilizing the Shared Decision Making (SDM) Model, this study explores family building decision-making communication processes in opposite-sex couples with inherited cancer risk (ICR). Fifteen couples completed two recorded, analogue discussions and dyadic interviews at two time points. Participants were recruited through social media and snowball sampling. The constant comparison method was utilized to thematically analyze the data. When couples discussed family building options (FBOs), several themes were identified: FBO risks, FBO considerations, genetic-related FBO logistics, and life FBOs logistics. When deliberating family building decisions, couples shared easy conversational topics (e.g. FBO options and potential child's cancer risk due to a genetic variant) and difficult/conflict-inducing topics (e.g. preparing for possibilities, parenting, emotions, finances, and timing). Last, couples self-reported primary and secondary FBOs. The findings of this study capture couples' decision-making communication process while considering their experiences. Clinicians and practitioners can utilize these findings to support couples' family building decisions considering their ICR.
PMID: 37078713
ISSN: 1087-0415
CID: 5466272

"No one size fits all" A Multi-Method Survey of Oncology Allied Health Professionals Experiences with Lesbian, Gay, Bisexual, Transgender/Queer Questioning Adolescent, and Young Adult Patients with Cancer and Reproductive and Sexual Health"

Sampson, Amani; Block, Rebecca; Lake, Paige W; Gagliardi, Julia; Augusto, Bianca; Santiago-Datil, Waleska; Sutter, Megan; Schabath, Matthew B; Vadaparampil, Susan; Quinn, Gwendolyn P
PMID: 35731000
ISSN: 2156-535x
CID: 5281972

Together-Equitable-Accessible-Meaningful (TEAM) Training to Improve Cancer Care for Sexual and Gender Minorities (SGM): Outcomes from a Pilot Study

Pratt-Chapman, Mandi L; Wang, Yan; Eckstrand, Kristen; Radix, Asa; Quinn, Gwendolyn P; Schabath, Matthew B; Lopez, Ana Maria
To alleviate health disparities experienced by sexual and gender minority (SGM) patients, cancer care professionals need further education on the needs of SGM cancer patients and their loved ones and caregivers. The Together-Equitable-Accessible-Meaningful (TEAM) Training to Improve Cancer Care for SGM Patients (TEAM SGM) was developed and piloted to address this need. This study reports healthcare professional learner outcomes from the TEAM SGM pilot intervention. The TEAM SGM Training pilot consisted of 2.5 h of content from the original online self-paced TEAM Training plus 12 1-h Zoom sessions on specialized topics in addition to readings and activities. Participants (n = 28), representing seven cancer service organizations from six states in the USA, were recruited through newsletter listservs and social media. All participants (n = 28) completed the pre-test and twenty-two participants completed the post-test. Using five factors confirmed in a separate Confirmatory Factor Analysis, paired t-tests of TEAM SGM participant pre- and post-test data were conducted. Statistically significant improvements were found in four of five factors: Environmental Cues (t(21) = 2.56, p = .018), Knowledge (t(21) = 2.15, p = .043), Clinical Preparedness (t(7) = 3.89, p = .006), Clinical Behaviors (t(21) = 2.48, p = .022). The Attitudes factor was not significantly improved from pre-intervention to post-intervention likely due to strong affirming attitudes toward SGM patients at baseline. TEAM SGM is a feasible, effective training to build capacity in SGM-affirming care for cancer care providers.
PMID: 35013901
ISSN: 1543-0154
CID: 5118572

Fertility Preservation Practices at Pediatric Oncology Institutions in the United States: A Report From the Children's Oncology Group

Frederick, Natasha N; Klosky, James L; Meacham, Lillian; Quinn, Gwendolyn P; Kelvin, Joanne F; Cherven, Brooke; Freyer, David R; Dvorak, Christopher C; Brackett, Julienne; Ahmed-Winston, Sameeya; Bryson, Elyse; Su, H Irene; Chow, Eric J; Levine, Jennifer
PURPOSE/UNASSIGNED:Fertility discussions are an integral part of comprehensive care for pediatric, adolescent, and young adult patients newly diagnosed with cancer and are supported by national guidelines. Current institutional practices are poorly understood. METHODS/UNASSIGNED:A cross-sectional survey was distributed to 220 Children's Oncology Group member institutions regarding fertility discussion practices. Descriptive statistics were calculated for all variables. The association between specific practices and selected outcomes on the basis of sex was examined via multivariable logistic regression. RESULTS/UNASSIGNED:< .001). Program characteristics associated with fertility discussions included reproductive endocrinology and infertility on site (females odds ratio [OR], 2.1; 95% CI, 1.0 to 4.3), discussion documentation mandate (females OR, 2.3; 95% CI, 1.0 to 5.5; males OR, 3.5; 95% CI, 1.4 to 8.7), and cumulative institution-based FP infrastructure (which included [1] routine practice of documentation, [2] template for documentation, [3] mandate for documentation, and [4] availability of FP navigation; females OR, 1.6; 95% CI, 1.1 to 2.3; males OR, 2.3; 95% CI, 1.6 to 3.4). Utilization of practices unsupported by guidelines included offering sperm banking after treatment initiation (39/135 programs; 28.9%), gonadotropin-releasing hormone analogs for ovarian suppression/FP (75/144 programs; 52.1%), ovarian tissue cryopreservation at diagnosis for patients with leukemia (19/64 programs; 29.7%), and testicular tissue cryopreservation (23/138 programs; 16.7%) not part of a clinical trial. CONCLUSION/UNASSIGNED:Despite recommended guidelines, fertility discussions with patients/families before treatment initiation are not routine at Children's Oncology Group institutions. Standard criteria to determine which options should be offered to patients are more common for males than females.
PMCID:10113112
PMID: 36763922
ISSN: 2688-1535
CID: 5462202

Perspectives surrounding fertility preservation and posthumous reproduction for adolescent and young adults with terminal cancer: Survey of allied health professionals

Barrett, Francesca; Sutter, Megan E; Campo-Engelstein, Lisa; Sampson, Amani; Caplan, Arthur; Lawrence, Morgan; Vadaparampil, Susan T; Quinn, Gwendolyn P
BACKGROUND:While all reproductive-aged individuals with cancer should be offered fertility preservation (FP) counseling, there is little guidance over offers to adolescent and young adults (AYA) with terminal diagnoses, especially when considering posthumous assisted reproduction (PAR). The Enriching Communication skills for Health professionals in Oncofertility (ECHO/ENRICH) trains Allied Health Professionals (AHPs) to improve communication with AYAs with cancer. Little is known about AHPs' role in assisting in FP and PAR decisions. METHODS:This is a cross-sectional survey of ECHO/ENRICH trainees' attitudes and experience with FP and PAR in AYA with terminal cancer. RESULTS:The response rate was 61% (365/601). While 69% felt comfortable discussing FP with terminal AYA after ECHO/ENRICH training, 85% desired further education. The majority (88%) agreed FP should be an option for AYA with cancer, though some agreed offering FP provided false hope (16%) or was a waste of resources (7%). Most shared that avoidance of FP discussions was common practice, especially in the medically fragile, late-stage disease, or among minors. Many attributed lack of conversations to oncology team goals. Only 9% had prior experience with PAR. Many were conflicted about how PAR reproductive material should be gifted and who should be permitted to use PAR. Several raised moral concerns for PAR, or discomfort advising family. Many voiced desire for additional PAR-specific education. CONCLUSION/CONCLUSIONS:ECHO/ENRICH trainees had varied levels of exposure to FP in terminal AYA and limited experiences with PAR. Many expressed uncertainties with PAR, which may be alleviated with further training and transparent institutional policies.
PMID: 36226382
ISSN: 2045-7634
CID: 5361032

Behavioral beliefs about genetic counseling among high-risk Latina breast cancer survivors in Florida and Puerto Rico

Rivera Rivera, Jessica N; Conley, Claire C; Castro-Figueroa, Eida M; Moreno, Laura; Dutil, Julie; García, Jennifer D; Ricker, Charité; Quinn, Gwendolyn P; Soliman, Hatem; Vadaparampil, Susan T
Compared with non-Hispanic White women, Latina women are less likely to receive genetic counseling (GC) and testing (GT) following BC diagnosis. This study used secondary data analysis to explore beliefs about GC among Latina BC survivors in and outside the US mainland. GC/GT-naïve, high-risk, Spanish-preferring Latina BC survivors (n = 52) in FL and PR completed the Behavioral Beliefs about GC scale. Participants reported high positive beliefs about GC (M = 4.19, SD = 0.92); the majority agreed that GC was beneficial to understand cancer risk (90%) and promote discussion (87%) in their family. Participants reported low-to-moderate scores for barriers (Ms = 1.53-3.40; SDs = 0.59-0.90). The most frequently endorsed barriers were desire for additional GC information (M = 3.44; SD = 0.90), and GC logistic concerns (M = 2.71; SD = 0.80). No statistically significant differences for barriers and benefits scales were identified by place of residence (all ps ≥ 0.12). These findings highlight the importance of delivering culturally sensitive GC information to high-risk Latina BC survivors.
PMID: 35941731
ISSN: 2045-7634
CID: 5286772

Cancer patient and provider responses to companion scales assessing experiences with LGBTQI-affirming healthcare

Pratt-Chapman, Mandi L; Wang, Yan; Quinn, Gwendolyn P; Shirima, Sylvia; Adler, Sarah; Brazinskaite, Ruta; Kamen, Charles; Radix, Asa; Warren, Barbara; Eckstrand, Kristen; Lopez, Ana Maria
BACKGROUND/UNASSIGNED:Sexual and gender minority (SGM) persons are at a higher risk for some cancers and may have poorer health outcomes as a result of ongoing minority stress, social stigma, and cisnormative, heteronormative healthcare environments. This study compared patient and provider experiences of affirming environmental and behavioral cues and also examined provider-reported knowledge, attitudes, behaviors, and clinical preparedness in caring for SGM patients among a convenience sample. METHODS/UNASSIGNED:-tests compared continuous variables. Other results were reported using descriptive frequencies. RESULTS/UNASSIGNED:Both patient and provider samples were predominantly female sex assigned at birth, cisgender, and heterosexual. Providers were more likely than patients to report affirming cues in clinic, as well as the ability for patients to easily document their name in use and pronouns. Providers were more likely to report asking about patient values and preferences of care versus patients' recollection of being asked. Patients were more likely to report understanding why they were asked about both sex assigned at birth and gender identity compared to providers' perceptions that patients would understand being asked about both. Patients were also more likely to report comfort with providers asking about sex assigned at birth and gender identity compared to providers' perceptions of patient comfort. SGM providers had greater knowledge of SGM patient social determinants of health and cancer risks; felt more prepared to care for gay patients; were more likely to endorse the importance of knowing patient sexual orientation and gender identity; and were more likely to indicate a responsibility to learn about SGM patient needs and champion positive system changes for SGM patients compared to heterosexual/cisgender peers. Overall, providers wished for more SGM-specific training. CONCLUSION/UNASSIGNED:Differences between patient and provider reports of affirming environments as well as differences between SGM and heterosexual/cisgender provider care support the need for expanded professional training specific to SGM cancer care.
PMCID:10103145
PMID: 37064143
ISSN: 2234-943x
CID: 5465962

Qualitative Findings From a Survey on Patient Experiences and Satisfaction with Lung Cancer Screening

Pérez-Morales, Jaileene; Pathak, Rashmi; Reyes, Monica; Tolbert, Haley; Tirbene, Rajwantee; Gray, Jhanelle E; Simmons, Vani N; Schabath, Matthew B; Quinn, Gwendolyn P
BACKGROUND:To reveal successes and potential limitations of the lung cancer screening program, we conducted a survey that included both quantitative and open-ended questions to measure patient experiences and satisfaction with screening. METHODS:We report on the five open-ended items related to barriers to returning for screening, experience with other cancer prevention screenings, positive and negative experiences, and suggestions for improving future appointments. The open-ended responses were analyzed using constant comparison method and inductive content analysis. RESULTS:Respondents (182 patients, 86% response rate for open-ended questions) provided generally positive comments about their lung cancer screening experience. Negative comments were related to desire for more information about results, long wait times for results, and billing issues. Suggestions for improvements included: scheduling on-line appointments and text or email reminders, lower costs, and responding to uncertainty about eligibility criteria. CONCLUSION/CONCLUSIONS:Findings provide insights about patient experiences and satisfaction with lung cancer screening which is important given low uptake. Ongoing patient-centered feedback may improve the lung cancer screening experience and increase follow-up screening rates.
PMCID:10052477
PMID: 36971270
ISSN: 1526-2359
CID: 5463072

Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease

Colton, Zachary A; Stanek, Charis J; Liles, Sophia M; Baker, Christian; Barnard-Kirk, Toyetta; Chan, Peter; McCorkle, Ben; Quinn, Gwendolyn P; Shen, Yvette; Theroux, Charleen I; Creary, Susan E; Nahata, Leena
Individuals with sickle cell disease are increasingly surviving into adulthood, many of whom have interest in future biological parenthood. Reproductive health knowledge is low among adolescent and young adult males and their caregivers. Their understanding of these topics is needed to optimize their reproductive health outcomes. As such, through collaboration with a community advisory board (adolescents and young adults with sickle cell disease and mothers of adolescent and young adult males with sickle cell disease) and digital design team, we developed a web-based sickle cell disease-focused reproductive health program entitled FUTURES to address these knowledge gaps. For phase I of this two phase feasibility and acceptability study, adolescent and young adult males and their caregivers will complete a pre- and post-program reproductive health knowledge and attitudes questionnaire to assess change in knowledge. In phase II, after learning about fertility testing as part of the FUTURES curriculum, adolescent and young adult male participants are given the option to pursue testing. The two-phase study aims to: 1) develop and test the feasibility, acceptability, and efficacy of a reproductive health web-based educational program at increasing reproductive health knowledge in male adolescent and young adult males with sickle cell disease and their caregivers, and 2) assess feasibility of fertility testing. The long-term goal is to improve reproductive and psychosocial outcomes among adolescent and young adult males with sickle cell disease.
PMCID:10370742
PMID: 37494379
ISSN: 1932-6203
CID: 5592182

Editorial: Cancer prevention, treatment and survivorship in the LGBTQIA community [Editorial]

Ussher, Jane M; Quinn, Gwendolyn P; Perz, Janette
PMID: 37496659
ISSN: 2234-943x
CID: 5727222