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"I need more knowledge": Qualitative analysis of oncology providers' experiences with sexual and gender minority patients

Tamargo, Christina L; Mitchell, Edith P; Wagner, Lynne; Simon, Melissa A; Carlos, Ruth C; Giantonio, Bruce J; Schabath, Matthew B; Quinn, Gwendolyn P
Background/UNASSIGNED:While societal acceptance for sexual and gender minority (SGM) individuals is increasing, this group continues to face barriers to quality healthcare. Little is known about clinicians' experiences with SGM patients in the oncology setting. To address this, a mixed method survey was administered to members of the ECOG-ACRIN Cancer Research Group. Materials and methods/UNASSIGNED:We report results from the open-ended portion of the survey. Four questions asked clinicians to describe experiences with SGM patients, reservations in caring for them, suggestions for improvement in SGM cancer care, and additional comments. Data were analyzed using content analysis and the constant comparison method. Results/UNASSIGNED:The majority of respondents noted they had no or little familiarity with SGM patients. A minority of respondents noted experience with gay and lesbian patients, but not transgender patients; many who reported experience with transgender patients also noted difficulty navigating the correct use of pronouns. Many respondents also highlighted positive experiences with SGM patients. Suggestions for improvement in SGM cancer care included providing widespread training, attending to unique end-of-life care issues among SGM patients, and engaging in efforts to build trust. Conclusion/UNASSIGNED:Clinicians have minimal experiences with SGM patients with cancer but desire training. Training the entire workforce may improve trust with, outreach efforts to, and cancer care delivery to the SGM community.
PMCID:9421156
PMID: 36046410
ISSN: 1664-1078
CID: 5337732

Study protocol for fertility preservation discussions and decisions: A family-centered psychoeducational intervention for male adolescents and emerging adults newly diagnosed with cancer and their families

Stanek, Charis; Theroux, Charleen I; Olsavsky, Anna L; Hill, Kylie N; Rausch, Joseph R; O'Brien, Sarah H; Quinn, Gwendolyn P; Gerhardt, Cynthia A; Nahata, Leena
Many childhood cancer survivors desire biological children but are at risk for infertility after treatment. One option for mitigating risk is the use of fertility preservation prior to gonadotoxic therapy. Adolescents and emerging adults may rely on their parents to help them decide whether to use fertility preservation. While this is often a collaborative process, it is currently unknown how parents can optimally support adolescents and emerging adults through this decision. To address this gap, we developed a family-centered, psychoeducational intervention to prompt adolescents and emerging adults to reflect on their future parenthood goals and attitudes towards fertility preservation, as well as to prompt their parents (or other caregivers) to reflect on their own and their child's perspectives on the topic. In this randomized controlled trial, families will be randomized to either the standard of care control group (fertility consult) or the intervention group. After their fertility consult, adolescents and emerging adults and parents in the intervention group will complete a fertility preservation values clarification tool and then participate in a guided conversation about their responses and the fertility preservation decision. The primary expected outcome of this study is that participation in the intervention will increase the use of fertility preservation. The secondary expected outcome is an improvement in decision quality. Chi-square analyses and t-tests will evaluate primary and secondary outcomes. The goal of this intervention is to optimize family-centered fertility preservation decision-making in the context of a new cancer diagnosis to help male adolescents and emerging adults achieve their future parenthood goals.
PMCID:8849538
PMID: 35171948
ISSN: 1932-6203
CID: 5167472

#LEARN ABOUT FERTILITY ON TIKTOK: A CROSS SECTIONAL CONTENT ANALYSIS OF FERTILITY RELATED HASHTAGS [Meeting Abstract]

Sampson, Amani; Barrett, Francesca; Quinn, Gwendolyn P.
ISI:000891804601069
ISSN: 0015-0282
CID: 5439712

EXPERIENCES AND INTENTIONS OF PATIENTS WHO UNDERWENT MEDICALLY INDICATED ()OCYTE OR EMBRYO CRYOPRESERVATION: A QUALITATIVE STUDY [Meeting Abstract]

Bayefsky, Michelle J.; Sampson, Amain; Blakemore, Jennifer K.; Fino, Mary Elizabeth; Quinn, Gwendolyn P.
ISI:000891804600225
ISSN: 0015-0282
CID: 5439702

Psychosexual functioning in cancer survivorship: What the pediatric oncologist needs to know

Frederick, Natasha N; Lehmann, Vicky; Ahler, Astrid; Carpenter, Kristen; Cherven, Brooke; Klosky, James L; Nahata, Leena; Quinn, Gwendolyn P
Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.
PMID: 34873822
ISSN: 1545-5017
CID: 5070182

Faculty and Staff Cultural Awareness in the Care of LGBTQ Patients, A Single NCI-Comprehensive Cancer Center Experience

Domogauer, J D; Haseltine, M; Nelson, R; Charifson, M; Sutter, M; Chachoua, A; Quinn, G
PURPOSE/OBJECTIVE(S): LGBTQ (lesbian, gay, bisexual, transgender, and queer) patients also referred to as sexual and gender minorities (SGM) are an understudied and medically underserved population that experiences a range of health disparities including increased cancer risk and worse cancer outcomes. Notably, negative provider interaction(s), including discrimination and poor understanding of LGBTQ specific health issues, are often cited by LGBTQ patients as barriers to care. In order to improve health outcomes for this understudied, underserved, and vulnerable population, additional assessment of oncology healthcare providers and staff knowledge and attitudes are needed to better identify areas of improvement and guide LGBTQ-focused healthcare trainings. Towards this goal we conducted a study assessing the knowledge of LBGTQ health, and attitudes towards LGBTQ patients among faculty and staff of a single institution. MATERIALS/METHODS: This study consisted of previously published surveys that were adapted at the direction of the institutional LGBTQ+ Patient and Family Advisory Council and modified to include non-clinical staff. The survey was disseminated to all faculty and staff at the institution. The survey was adapted to the participants' level of patient interaction / care responsibilities and consisted of subsections with questions related to demographics, knowledge, attitudes, practice behaviors, and open comments towards participating in the care of LGBTQ patients.
RESULT(S): There were 310 responses (178 clinical and 132 non-clinical). 68% (75% clinical/59% non-clinical) were white, 77% (83%/70%) were non-Hispanic, 75% (76%/72%) were female, 82% (84%/80%) were heterosexual. Preliminary analysis revealed no significant differences regarding comfort and attitudes in caring for the LGBTQ community regardless of clinical responsibilities; however, clinical care providers were more knowledgeable regarding the unique health care needs of LGBTQ individuals. Additional data analysis is ongoing and will be available by time of the conference.
CONCLUSION(S): While culturally competent best practices for treating LGBTQ populations have continued to evolve, few studies have assessed medical provider and support staff preparedness to treat LGBTQ patients, especially in an oncologic setting. To the best of our knowledge, this is one of the few studies assessing oncologic providers' knowledge and attitudes in caring for the LGBTQ community, and one of the first studies assessing oncologic non-provider staff knowledge and attitudes in assisting LGBTQ patients.
Copyright
EMBASE:636623761
ISSN: 1879-355x
CID: 5082272

Reproductive health risks and clinician practices with gender diverse adolescents and young adults

Quinn, Gwendolyn P; Tishelman, Amy C; Chen, Diane; Nahata, Leena
BACKGROUND:Reproductive health counseling is essential for adolescents and young adults (AYAs). Transgender and gender diverse (TGD) AYAs would benefit from tailored counseling given concerns about iatrogenic infertility and sexual dysfunction, and high rates of interpersonal violence, unplanned pregnancies and sexually transmitted infections, yet there are multiple obstacles to providing this care at the patient/family and clinician levels. OBJECTIVES/OBJECTIVE:This narrative review summarizes the literature on reproductive health considerations for TGD AYAs, current practices, and clinician barriers and facilitators to providing culturally sensitive reproductive care for TGD AYAs. Specific areas of focus include reproductive health goals, risks, and access barriers; clinician knowledge practices and challenges; and strategies for improving counseling practices. MATERIALS AND METHODS/METHODS:PubMed, Google Scholar, Medline, Web of Science, and PsycInfo databases were searched using the following terms: transgender, non-binary, gender expansive, gender non-conforming, reproductive health, sexual health, fertility, family planning/building, contraception, sexual dysfunction; gender-affirming hormones/surgery, clinician, physician or provider knowledge and attitudes; counseling. RESULTS:Many TGD AYAs desire biological children and improved sexual experiences. TGD AYAs may experience infertility and sexual dysfunction associated with transition; have disproportionate HIV/STI risk; experience high rates of interpersonal/sexual violence and trauma; and encounter barriers to accessing competent medical care. Clinicians lack knowledge about reproductive health needs of TGD AYAs; inconsistently discuss family building options; perceive counseling challenges; and desire more training in this area. DISCUSSION/CONCLUSIONS:Enriched communication training for medical/mental health clinicians is necessary to provide a skilled workforce for TGD AYAs. Web-based reproductive health training with other populations (eg oncology) demonstrates efficacy for improving communication skills and confidence in counseling, CONCLUSION: This review highlights barriers to adequate reproductive care encountered by TGD AYAs, exacerbated in underserved minority youth. Dedicated training for providers, and programs increasing access are important goals for improving care. The need for additional research is also emphasized.
PMID: 33942552
ISSN: 2047-2927
CID: 4897742

Infrastructure of Fertility Preservation Services for Pediatric Cancer Patients: A Report From the Children's Oncology Group

Frederick, Natasha N; Klosky, James L; Meacham, Lillian R; Quinn, Gwendolyn P; Kelvin, Joanne Frankel; Cherven, Brooke; Freyer, David R; Dvorak, Christopher C; Brackett, Julienne; Ahmed-Winston, Sameeya; Bryson, Elyse; Chow, Eric J; Levine, Jennifer
PURPOSE/OBJECTIVE:Fertility preservation (FP) services are part of comprehensive care for those newly diagnosed with cancer. The capacity to offer these services to children and adolescents with cancer is unknown. METHODS:A cross-sectional survey was sent to 220 Children's Oncology Group member institutions regarding institutional characteristics, structure and organization of FP services, and barriers to FP. Standard descriptive statistics were computed for all variables. The association between site-specific factors and selected outcomes was examined using multivariable logistic regression. RESULTS:One hundred forty-four programs (65.5%) returned surveys. Fifty-three (36.8%) reported a designated FP individual or team. Sperm banking was offered at 135 (97.8%) institutions, and testicular tissue cryopreservation at 37 (27.0%). Oocyte and embryo cryopreservation were offered at 91 (67.9%) and 62 (46.6%) institutions, respectively; ovarian tissue cryopreservation was offered at 64 (47.8%) institutions. The presence of dedicated FP personnel was independently associated with the ability to offer oocyte or embryo cryopreservation (odds ratio [OR], 4.7; 95% CI, 1.7 to 13.5), ovarian tissue cryopreservation (OR, 2.7; 95% CI, 1.2 to 6.0), and testicular tissue cryopreservation (OR, 3.3; 95% CI, 1.4 to 97.8). Only 26 (18.1%) participating institutions offered all current nonexperimental FP interventions. Barriers included cost (70.9%), inadequate knowledge or training (60.7%), difficulty characterizing fertility risk (50.4%), inadequate staffing (45.5%), and logistics with reproductive specialties (38%-39%). CONCLUSION/CONCLUSIONS:This study provides the most comprehensive view of the current landscape of FP infrastructure for children and adolescents with cancer and demonstrates that existing infrastructure is inadequate to offer comprehensive services to patients. We discuss modifiable factors to improve patient access to FP.
PMID: 34709943
ISSN: 2688-1535
CID: 5042642

Parent-Adolescent Concordance Regarding Fertility Perspectives and Sperm Banking Attempts in Adolescent Males With Cancer

Nahata, Leena; Olsavsky, Anna; Dattilo, Taylor M; Lipak, Keagan G; Whiteside, Stacy; Yeager, Nicholas D; Audino, Anthony; Rausch, Joseph; Klosky, James L; O'Brien, Sarah H; Quinn, Gwendolyn P; Gerhardt, Cynthia A
OBJECTIVE:Approximately half of male childhood cancer survivors experience impaired fertility, yet fertility preservation (FP) remains underutilized. Although parent recommendation influences adolescents' decision-making, parents may be uncertain and/or underrate their sons' parenthood goals. This study assessed parent-adolescent and family-level concordance regarding adolescent fertility perspectives (i.e., values, goals) and associations with FP attempts. METHODS:A prospective pilot study examined the impact of a family-centered values clarification tool (FAST) on banking attempts among adolescent males newly diagnosed with cancer at risk for infertility. The FAST assessed adolescent and parent perceptions of adolescents' fertility values and goals (i.e., perceived threat of infertility, perceived benefits/barriers to banking). Parent-adolescent concordance and family-level concordance on fertility perspectives were examined, along with associations with banking attempts and salient demographic factors. RESULTS:Ninety-eight participants (32 adolescents aged 12-20, 37 mothers, 29 fathers) from 32 families completed the FAST before treatment initiation. Parent-adolescent dyads were concordant on approximately one-half of responses. Banking attempts were associated with higher family-level concordance regarding perceived benefits, r(32) = .40, p = .02. Older adolescent age was associated with higher family-level concordance regarding perceived threat, r(31) = .37, p = .04, and benefits, r(32) = .40, p = .03. Fathers' education was associated with higher family-level concordance regarding barriers, r(21) = .53, p = .01. CONCLUSIONS:When parents were concordant with their son's fertility values and goals, particularly perceived benefits, adolescents were more likely to attempt FP. Clinicians should facilitate sharing of fertility perspectives within families before cancer treatment, especially with younger adolescents. Psychosocial support for families facing FP decisions is recommended at diagnosis and across the care continuum.
PMCID:8561244
PMID: 34333651
ISSN: 1465-735x
CID: 5038852

I'm not putting on that floral gown: Enforcement and resistance of gender expectations for transgender people with cancer

Alpert, Ash B; Gampa, Vikas; Lytle, Megan C; Manzano, Charlie; Ruddick, Roman; Poteat, Tonia; Quinn, Gwendolyn P; Kamen, Charles S
OBJECTIVES/OBJECTIVE:Understanding barriers to care for transgender people with cancer is necessary to increase oncologic care access. Little has been published regarding the experiences of transgender people with cancer. We sought to explore these experiences, assess barriers to oncologic care, and elucidate potential solutions. METHODS:Using an interpretive descriptive approach, we conducted two group interviews with transgender people who had been diagnosed with cancer and one with physicians who treat patients with cancer. Two investigators independently analyzed verbatim transcripts and, together, refined themes, resolving disagreements with consensus. Member checking and peer debriefing were used to confirm and elaborate on findings. RESULTS:Seven people who had been diagnosed with cancer and five physicians who treat people with cancer participated in group interviews. Themes included: (a) experiences with cancer may uniquely impact transgender people; (b) enforcement of clinician and systemic gender expectations creates barriers to cancer care; and (c) resistance to gender expectations may facilitate care. CONCLUSIONS:Gender expectations create barriers to oncologic care, which can be resisted by patients, clinicians, and institutions. IMPLICATIONS FOR PRACTICE/CONCLUSIONS:Clinicians and institutions should create gender-inclusive oncologic spaces, demonstrate allyship, and support patient autonomy to decrease barriers to care for transgender people with cancer.
PMID: 33745786
ISSN: 1873-5134
CID: 4875302