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Reproductive Health Counseling among Youth with Sickle Cell Disease

Stanek, Charis J; Reich, Jenna; Theroux, Charleen I; Creary, Susan E; Quinn, Gwendolyn P; Nahata, Leena
STUDY OBJECTIVE/OBJECTIVE:Reproductive health counseling is important for youth with sickle cell disease (SCD) given that they experience potential infertility risks from SCD and its treatments and high rates of unplanned pregnancies. Thus, the objective of this study was to describe documented occurrences of reproductive health counseling among youth with SCD and examine differences in counseling by sociodemographic and treatment characteristics. METHODS:tests were used to examine sample characteristics and relationships between sociodemographic factors, clinical characteristics, site, and reproductive health counseling (fertility, contraception, and genetic counseling). RESULTS:Seven of 167 (4%) youth had documented discussions about the potential impacts of SCD on fertility. Fertility counseling was also low among those who received a bone marrow transplant or hydroxyurea (n = 1/2, 50%; and n = 1/104, 1%, respectively). Only 57% of youth received contraception counseling, and only 55% of sexually active youth used birth control; birth control use was associated with older age (P = .028), severe clinical disease (P = .003), and documentation of contraception counseling (P = .047). Most youth received genetic counseling (80%), although more genetic counseling occurred at Nationwide Children's Hospital (P < .001). There was no association between gender and any type of counseling. CONCLUSION/CONCLUSIONS:Findings suggest reproductive health counseling gaps in this population, with important implications for future infertility distress and unplanned pregnancies. Future research should examine barriers to counseling, explore fertility impacts of SCD and treatments, and inform evidence-based guidelines for reproductive health care in SCD.
PMID: 36934802
ISSN: 1873-4332
CID: 5502442

Improvements in Sexual Orientation and Gender Identity Data Collection Through Policy and Education [Comment]

Stasenko, Marina; Quinn, Gwendolyn P
PMID: 37319393
ISSN: 1541-0048
CID: 5536722

Survey of Clinical Providers and Allied Health Staff at a National Cancer Institute-Designated Comprehensive Cancer Center: Cultural Awareness in the Care of LGBTQ2S + Patients with Cancer

Domogauer, Jason D; Charifson, Mia; Sutter, Megan E; Haseltine, Megan; Nelson, Rachel; Stasenko, Marina; Chachoua, Abraham; Quinn, Gwendolyn P
To identify potential gaps in attitudes, knowledge, and practices towards LGBTQ2S + patients with a cancer diagnosis, a survey of clinical providers (CP) and allied health staff (AHS) was conducted to identify areas of improvement and guide development for future education and training. A previously published, validated survey was adapted at the direction of a LGBTQ2S + Patient and Family Advisory Council, and modified to include AHS. The survey was disseminated to all faculty and staff, and was adapted to the participants' self-identified level of patient interaction/care responsibilities. Subsections consisted of questions related to demographics, knowledge, attitudes, and practice behaviors towards participating in the care of LGBTQ2S + patients. Results were quantified using stratified analysis and an attitude summary measure. Of the 311 respondents, 179 self-identified as CPs and 132 as AHS. There was high agreement in comfort treating or assisting LGBTQ2S + patients by CP and AHS respondents, respectively. CPs possessed significantly higher knowledge regarding LGBTQ2S + health when compared to AHS; however, there remained high percentages of "neutral" and "do not know or prefer not to answer" responses regardless of clinical role. There was high agreement regarding the importance of knowing a patient's gender identity (GI) and pronouns (CP vs. AHS; 76.9% vs. 73.5% and 89.4% vs. 84.1%, respectively), whereas patient's sexual orientation and sex assigned at birth (CP vs. AHS; 51.1% vs. 53.5% and 58.6% vs. 62.9%, respectively) were viewed as less important. There was high interest in receiving education regarding the unique needs of LGBTQ2S + patients regardless of clinical role. Stratified analyses of CPs revealed early-career physicians (< 1-5 years from graduation) expressed higher interest in additional education and involvement with LGBTQ2S + -focused trainings when compared to mid- and late-career providers. This is the first study, to our knowledge, assessing the attitudes, knowledge, and practices of CPs and AHS regarding the care of LGBTQ2S + patients with cancer. Overall, there was high comfort treating/assisting LGBTQ2S + patients among CP and AHS respondents, respectively; yet, both groups possessed significant gaps in LGBTQ2S + -focused knowledge.
PMID: 36577894
ISSN: 1543-0154
CID: 5591662

Lesbian, Gay, and Bisexual Widows' Experiences of Grief, Identity, and Support: A Qualitative Study of Relationships Following the Loss of a Spouse or Partner

Valenti, Korijna G; Hahn, Sarah; Enguidanos, Susan; Quinn, Gwendolyn; de Medeiros, Kate
OBJECTIVE:Research with lesbian, gay, and bisexual (LGB) older widows rarely focuses on familial relationships. Studies on heterosexual spousal bereavement indicate older widows face issues influencing identity but show resilience by maintaining close relationships with adult children and extended family. Though research with older LGB widows suggests similarities around loss and resilience, grief and family engagement are markedly different. METHODS:Guided by Relational Cultural Theory, which illuminates how LGB women cope through connection/disconnection, this qualitative descriptive study employed semi-structured, open-ended interviews with 16 LGB women, 60 to 85 years of age from across the United States who had lost a spouse or partner within the past five years. We conducted interviews regarding the perception of self as bereaved LGB women and sustained or altered relationships with biological and chosen families following the loss of their spouses/partners. RESULTS:Findings are illustrated in three themes around acceptance, support, and identity. Participants: 1) experienced differing levels of acceptance, tolerance, and inclusion from biological families; 2) experienced family or friends "disappearing" or providing critical support following a spouse/partner death; 3) negotiated challenges by creating or seeking out families of choice, new communities, and a better understanding of themselves. DISCUSSION/CONCLUSIONS:While LGB widows share some grief experiences with heterosexual widows, they also experience varying biological family acceptance and support as well as the need for friends and families of choice as advocates. It is important to recognize the unique consequences of spousal loss for this population and be cognizant of the differences in normative grief.
PMID: 36331812
ISSN: 1758-5368
CID: 5358842

Measuring vaping-related expectancies in young adults: Psychometric evaluation of the Electronic Nicotine Vaping Outcomes (ENVO) scale

Harrell, Paul T; Brandon, Thomas H; Stark, Stephen E; Simmons, Vani N; Barnett, Tracey E; Quinn, Gwendolyn P; Chun, Seokjoon
OBJECTIVE:Electronic cigarettes are the most commonly used tobacco products by young adults. Measures of beliefs about outcomes of use (i.e., expectancies) can be helpful in predicting use, as well as informing and evaluating interventions to impact use. METHODS:We surveyed young adult students (N = 2296, Mean age=20.0, SD=1.8, 64 % female, 34 % White) from a community college, a historically black university, and a state university. Students answered ENDS expectancy items derived from focus groups and expert panel refinement using Delphi methods. Factor Analysis and Item Response Theory (IRT) methods were used to understand relevant factors and identify useful items. RESULTS:A 5-factor solution [Positive Reinforcement (consists of Stimulation, Sensorimotor, and Taste subthemes, α = .92), Negative Consequences (Health Risks and Stigma, α = .94), Negative Affect Reduction (α = .95), Weight Control (α = .92), and Addiction (α = .87)] fit the data well (CFI=0.95; TLI=0.94; RMSEA=0.05) and was invariant across subgroups. Factors were significantly correlated with relevant vaping measures, including vaping susceptibility and lifetime vaping. Hierarchical linear regression demonstrated factors were significant predictors of lifetime vaping after controlling for demographics, vaping ad exposure, and peer/family vaping. IRT analyses indicated that individual items tended to be related to their underlying constructs (a parameters ranged from 1.26 to 3.18) and covered a relatively wide range of the expectancies continuum (b parameters ranged from -0.72 to 2.47). CONCLUSIONS:A novel ENDS expectancy measure appears to be a reliable measure for young adults with promising results in the domains of concurrent validity, incremental validity, and IRT characteristics. This tool may be helpful in predicting use and informing future interventions. IMPLICATIONS:Findings provide support for the future development of computerized adaptive testing of vaping beliefs. Expectancies appear to play a role in vaping similar to smoking and other substance use. Public health messaging should target expectancies to modify young adult vaping behavior.
PMID: 37028105
ISSN: 1879-0046
CID: 5463932

Apples, oranges, and ectopic pregnancies [Editorial]

Meyer, Jessica A; Quinn, Gwendolyn P; Penfield, Christina A
PMID: 36858166
ISSN: 1556-5653
CID: 5462312

Toward a Broader Conception of Equity in Artificial Womb Technology [Comment]

Kimberly, Laura L; Quinn, Gwendolyn P
PMID: 37130388
ISSN: 1536-0075
CID: 5503002

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

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

"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