Objective To identify the current state of knowledge among adolescent and young adults with Sickle Cell Disease (SCD) on fertility, family building and contraception. We aimed to identify recommendations and guidance for communication strategies and counseling methods in these areas. Evidence Review Full text publications were included if they focused on individuals with SCD, were published in English in peer-reviewed journals and addressed patient or family knowledge of fertility, family building or contraception. A comprehensive search using PubMed, CINAHL, OVID MEDLINE, Embase, and PsycINFO was performed. Multiple reviewers (4) independently assessed each abstract for inclusion and a senior librarian resolved disagreements. Results Of 2885 publications screened, 314 underwent full review and 11 were included. Of the included studies, three discussed fertility only; two discussed family building only; two discussed contraception only; two discussed contraception and fertility; one discussed contraception and family building; one discussed fertility and family building. Two overarching gaps were identified: a lack of counseling related to reproductive health care provided to AYAs with SCD, and limited knowledge regarding their own disease sequelae. Conclusion Many AYAs are not counseled and are not knowledgeable about their fertility risks, family building options, and contraception choices. Further, previous counseling guidelines on these subjects are limited, leading to incomplete and highly variable discussions between patient and clinicians on these subjects. This review highlights counseling recommendations and areas in which more concrete guidelines and evidence are important for the standardization of comprehensive reproductive healthcare in the AYA SCD population.

BACKGROUND:The lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) community experiences health disparities. It is thus imperative that medical trainees receive training in the care of LGBTQ community. The objective of this study was to identify gaps in knowledge and comfort among medical school students in providing care for the LGBTQ community.METHODS:An online survey was administered to medical students at 3 institutions in the United States from December 2020 to March 2021. Using a Likert scale, the survey assessed attitudes, comfort, and knowledge in providing care for the LGBTQ community. The survey included questions for each specific LGBTQ population. Results were quantified using descriptive and stratified analyses, and an exploratory factor analysis was used to calculate attitude summary measure (ASM) scores. A total knowledge score was calculated, with higher values indicating greater knowledge.RESULTS:Among the 300 medical students who completed the survey, the majority were female (55.7%), White (54.7%), and heterosexual (64.3%). The majority of medical students felt comfortable (strongly agree/agree) participating in the care of lesbian (94.3%), gay (96.0%), and bisexual (96.3%) patients; this percentage dropped to 82.3% for non-binary and 71.3% for transgender patients. Only 27.0% of medical students reported confidence in their knowledge of health needs of transgender patients. LGBTQ self-identification, percent of core rotations completed in school, region of country, and friends and/or family who are part of the LGBTQ community were significantly associated with various ASM scores. Knowledge questions yielded high percentages of "neutral" responses, and medical students who identified as LGBTQ had significantly higher total knowledge scores.CONCLUSIONS:Overall, the surveyed medical students feel comfortable and willing to provide care for LGBTQ persons. But, there is limited knowledge about specific LGBTQ health needs. More education and training in the needs of transgender and non-binary patients, in particular, is indicated.

Abstract Background: The majority of US medical schools have a required curriculum related to the care of LGBTQ+ people, which varies in length and content across schools. All medical specialties and sub-specialties have a component of need for cancer care; either in prevention, treatment, or care planning. As such, it is imperative that medical trainees receive relevant training in the care of LGBTQ+ populations, a community experiencing significant cancer health disparities. Assessing trainees' knowledge and confidence in providing care is an important aspect of preparing the next generation of physicians. Methods: This abstract reports on survey results from 3 US medical schools (New York University, University of Miami, University of Texas San Antonio) assessing the knowledge, attitudes and comfort in providing care for LGBTQ+ people. The survey was comprised of 54 Likert response (1=strongly disagree; 7=strongly agree) choice questions on: attitudes (30), knowledge (10), student demographics (13) and desire for additional LGBTQ+ education (1). Results were analyzed using descriptive and quantitative analyses. Results: A total of 360 medical students completed the survey and analyses revealed the majority of students had positive attitudes towards caring for LGBTQ+ patients, but lacked comfort in providing care for transgender/non binary patients (TNB) in general (p=0.05); specific cancer prevention care for TNB (p< 0.01); reproductive care for TNB (p< 0.01) and sexual heath (p=0.01). There was a significant correlation between high knowledge scores and comfort in asking a patient's pronouns (p<0.01). More than 80% felt comfortable discussing cancer prevention care with LGB patients and 75% believed it was important to know the sexual orientation of patient to provide the best care. Eighty percent agreed there should be mandatory LGBTQ+ education in medical school. As in our prior studies, total knowledge scores did not correlate with attitudes. Conclusions: Medical students feel comfortable and willing to provide cancer prevention care for LGB patients but may need more education and training in the unique needs of TNB patients. Medical schools should consider specific education in cancer prevention and treatment for TNB populations. Citation Format: Gwendolyn P. Quinn, Christina Tamargo, Devin Murphy, Megan Sutter, Lydia Fein, Fabio Ferrari, Amani Sampson, Mia Charifosn, Matthew B. Schabath. Medical students' knowledge and comfort in participating in cancer prevention for LGBTQ+ patients [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-063.

11030 Background: The lesbian, gay, bisexual, transgender and queer (LGBTQ) community experiences cancer health disparities. It is thus imperative that medical trainees receive training in the care of LGBTQ populations. Identifying gaps in trainees’ knowledge and comfort in providing care for this population is important in preparing future physicians. Methods: A Likert-scale survey of US medical students at three institutions assessed attitudes, comfort and knowledge in providing care for LGBTQ patients. Results were quantified with descriptive and stratified analyses. Exploratory factor analysis found four factors in which attitude summary measure (ASM) scores were calculated; lower values indicate more agreeability with given attitude items. Total knowledge scores were calculated with higher values indicating greater knowledge. Results: Of 300 medical students who completed the survey, the majority were female (55.7%), white (54.7%), and heterosexual (64.3%). The majority of students felt comfortable (strongly agree/agree) participating in the care of patients who identify as lesbian (94.3%), gay (96.0%), and bisexual (96.3%); this percentage dropped to 82.3% for non-binary and 71.3% for transgender patients. Only 27.0% of students reported confidence in their knowledge of health needs of transgender patients. LGBTQ self-identification, percent of core rotations completed, and having LGBTQ friends/family were significantly associated with various ASM subscales (Table 1). Knowledge questions had high percentages of “neutral” responses, and students who identified as LGBTQ had significantly higher total knowledge scores. Conclusions: Overall, medical students feel comfortable and willing to provide care for LGBTQ patients. However, as in our prior study in oncologists, there is limited knowledge about specific LGBTQ health and cancer needs. More education and training in the needs of transgender and non-binary patients is indicated. [Table: see text]

Red cell distribution width (RDW) is an average of the variation in red blood cell (RBC) sizes reported on a complete blood count. An elevated RDW indicates a pathological process that is affecting erythropoiesis. Studies showed that as the severity of disease process increases, the RDW often increases as well. Particularly in resource-limited countries, RDW has been studied as an outcome predictor for conditions in a variety of disciplines and is offered as an adjunct monitoring tool that is cost effective, readily available, and indicative of pathological processes amenable to intervention. Particularly in pediatric critical care settings, RDW has been shown to be a reliable tool for surveillance of disease states such as sepsis. Despite the increased attention of RDW as a marker for disease outcome, collective evaluation on the utility of RDW as a marker for outcome in pediatric critical care settings is lacking. We offer a systematic review and meta-analysis of published studies to assess the ability of RDW to predict illness severity and mortality among pediatric critical care patients. Among eight studies of over 4,800 patients, we found over a two-fold increase in odds for mortality in critically ill children whose RDW was above 15.7%. This is the first systematic review of RDW being used to predict mortality in critically ill children and findings of this study may prompt early intervention in the pediatric critical care setting.

The purpose of this study was to explore the feasibility of distributing a prompting tool (stress egg) in order to increase discussions about fertility risk and preservation (FP) among female adolescent oncology patients, parents, and healthcare providers (HCP). 200 eggs were distributed to four pediatric oncology centers. Qualitative interviews were completed with healthcare staff (N=7) after 6 months of distribution to newly diagnosed female oncology patients ages 12-18. Interviews showed that the main barriers to distribution of the prompt were: forgetting to distribute the eggs; uncertainty about the significance of fertility; and uncertainty about fertility issues in general for female adolescent cancer patients. The scientific community must continually explore effective avenues of communication to ensure such information is received. The stress egg has potential to impact a cancer survivor's outlook on future partnering, family life, and self-concept when used in conjunction with policy.

Visions for the future are a normal developmental process for adolescents and young adults (AYAs) with and without cancer, and these visions often include expectations of sexual and romantic relationships. AYA cancer survivors indicate reproductive health is an issue of great importance and more attention is needed in the health care setting throughout the cancer experience, beginning at diagnosis. Various practice guidelines are predominately focused on fertility; are intended to influence survivorship care plans; and do not encompass the broad scope of reproductive health that includes romantic partnering, friendships, body image, sexuality, sexual identity, fertility, contraception, and more. Although interventions to reduce reproductive health‐related sequelae from treatment are best approached as an evolving process, practitioners are not certain of the priorities of these various reproductive health content areas. Strategies incongruent with the reproductive health priorities of AYAs will likely thwart adequate follow‐up care and foster feelings of isolation from the treatment team. Research is needed to identify these priorities and ensure discussions of diverse content areas. This review explored various domains of reproductive health and emphasized how understanding the priorities of the AYA cancer cohort will guide future models of care. Cancer 2015;121:2529–2536 . © 2015 American Cancer Society .

BACKGROUND:Intensified therapy with platinum-based regimens for pediatric brain tumors has dramatically increased the number of pediatric brain tumor survivors (PBTS) but frequently causes permanent sensorineural hearing loss (SNHL). Although neurocognitive decline in PBTS is known to be associated with radiation therapy (RT), SNHL represents a potential additional contributor whose long-term impact has yet to be fully determined.METHODS:The neurocognitive impact of significant SNHL (Chang scale ≥ 2b) in PBTS was assessed through a retrospective cohort study of audiograms and neurocognitive testing. Scores for neurocognitive domains and subtest task performance were analyzed to identify specific strengths and weakness for PBTS with SNHL.RESULTS:In a cohort of PBTS (n = 58) treated with platinum therapy, significant SNHL was identified in more than half (55%, n = 32/58), of which the majority required hearing aids (72%, 23/32). RT exposure was approximately evenly divided between those with and without SNHL. PBTS were 6.7 ± 0.6 and 11.3 ± 0.7 years old at diagnosis and neurocognitive testing, respectively. In multivariate analyses adjusted for RT dose, SNHL was independently associated with deficits in intelligence, executive function, and verbal reasoning skills. Subtests revealed PBTS with SNHL to have poor learning efficiency but intact memory and information acquisition.CONCLUSIONS:SNHL in PBTS increases the risk for severe therapy-related intellectual and neurocognitive deficits. Additional prospective investigation in malignant brain tumors is necessary to validate these findings through integration of audiology and neurocognitive assessments and to identify appropriate strategies for neurocognitive screening and rehabilitation specific to PBTS with and without SNHL.

Journal of Adolescent and Young Adult OncologyVol. 3, No. 1 PerspectiveQuality of Life Tools and Young Adult Survivors of Pediatric Cancer: A Commentary on the Need to Examine Perceptions of Romantic RelationshipsGwendolyn P. Quinn, Devin Murphy, Michelle A. Fortier, Ivana Sehovic, Katie Z. Eddleton, and I-Chan HuangGwendolyn P. QuinnHealth Outcomes and Behavior, Moffitt Cancer Center, Tampa, Florida.Department of Oncologic Sciences, College of Medicine, University of South Florida, Tampa, Florida.Search for more papers by this author, Devin MurphyJonathan Jaques Children's Cancer Center, Miller Children's Hospital, Long Beach, California.Search for more papers by this author, Michelle A. FortierDepartment of Anesthesiology and Perioperative Care, UCI Center on Stress & Health, UC Irvine School of Medicine, Orange, California.Search for more papers by this author, Ivana SehovicHealth Outcomes and Behavior, Moffitt Cancer Center, Tampa, Florida.Search for more papers by this author, Katie Z. EddletonDepartments of Health Outcomes and Policy, and the Institute for Child Health Policy, University of Florida, Gainesville, Florida.Search for more papers by this author, and I-Chan HuangDepartments of Health Outcomes and Policy, and the Institute for Child Health Policy, University of Florida, Gainesville, Florida.Search for more papers by this authorPublished Online:12 Mar 2014https://doi.org/10.1089/jayao.2013.0020AboutSectionsView articleView Full TextPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail View articleFiguresReferencesRelatedDetailsCited byContraception: the Need for Expansion of Counsel in Adolescent and Young Adult (AYA) Cancer Care15 February 2016 | Journal of Cancer Education, Vol. 32, No. 4Exploring gender and identity issues among female adolescent and young adults who connect in an anonymous platform30 September 2015 | Journal of Health Psychology, Vol. 22, No. 5A Qualitative Study of the Impact of Cancer on Romantic Relationships, Sexual Relationships, and Fertility: Perspectives of Canadian Adolescents and Parents During and After Treatment Jennifer N. Stinson, Lindsay A. Jibb, Mark Greenberg, Maru Barrera, Stephanie Luca, Meghan E. White, and Abha Gupta17 June 2015 | Journal of Adolescent and Young Adult Oncology, Vol. 4, No. 2 Volume 3Issue 1Mar 2014 InformationCopyright 2014, Mary Ann Liebert, Inc.To cite this article:Gwendolyn P. Quinn, Devin Murphy, Michelle A. Fortier, Ivana Sehovic, Katie Z. Eddleton, and I-Chan Huang.Quality of Life Tools and Young Adult Survivors of Pediatric Cancer: A Commentary on the Need to Examine Perceptions of Romantic Relationships.Journal of Adolescent and Young Adult Oncology.Mar 2014.47-49.http://doi.org/10.1089/jayao.2013.0020Published in Volume: 3 Issue 1: March 12, 2014Keywordssurvivorsrelationshipsquality of lifeperceptionPDF download

"The Ethical Imperative of Risk Disclosure in Research: The Answer Is Always Yes." The American Journal of Bioethics, 14(4), pp. 18–19

Study Objective: Education materials detailing fertility preservation options geared towards pediatric oncology patients are inadequately available, particularly materials that are culturally tailored. An English language pediatric fertility preservation brochure was developed in 2011, and given the significance of family building among Hispanics, it is important to transcreate materials for these audiences using learner verification to explore the unique preferences of the population.Design: Qualitative face-to-face interviews and focus groups.Participants: Spanish-speaking patients (n = 10), parents (n = 10), and healthcare providers (n = 5). Suggestions for revisions were tested with focus groups of the same population (N = 16).Main Outcome Measures: Design, readability, likelihood to read, and overall opinion.Results: Feedback was organized into 2 distinct themes: design and reader action. Overall the majority of parents and patients wanted personal accounts of other patients who had undergone fertility preservation, as well as photos of actual patients. The medical terminology in the brochure was acceptable and understood by most. The majority of participants who preferred the design with vivid colors and patterns explained this was because that brochure also contained more relevant information; however, both brochures had identical information. Many participants explained they would be receptive to receiving the brochure and the, reproductive health information should be reinforced throughout cancer care.Conclusions: A learner verification approach to create pediatric educational materials can judiciously identify unique preferences for information. These results will be utilized to educate Spanish-speaking pediatric oncology patients and their parents to improve decision-making processes regarding future parenthood.

Rapid tissue donation (RTD) is an advancing oncology research procedure for collecting tumors, metastases, and unaffected tissue 2-6 h after death. Researchers can better determine rates of progression, response to treatment, and polymorphic differences among patients. Cancer patients may inquire about posthumous body donation for research to offer a personal contribution to research; however, there are barriers to recruiting for an RTD program. Physicians must reassure the patient that their treatment options and quality of care will not be compromised due to participating in RTD. In this commentary we discuss how theories of altruism may explain cancer patients' desire to participate in an RTD program, the ethical concerns of health care professionals and patients and the use of altruism as a recruitment strategy. We offer recommendations for examining the cultural and ethical climate of the institution prior to initiating such a program such as examining the relationship of healthcare professionals and patients, identifying ethical concerns, and examining ways to promote acceptance and buy-in across professionals, patients, and families.

Reproductive health among cancer survivors is an important quality of life issue. Certain cancer therapies have known fertility risks. There is an existing cohort of adolescents and young adults (AYA) cancer survivors that, seen less frequently in clinical care settings than active patients, are likely not having discussions of fertility and other reproductive health issues. A survivor or healthcare provider can easily assume that the window of opportunity for fertility preservation has passed, however emerging research has shown this may not be the case. Recent data demonstrates a close relationship between fertility and other late effects to conclude that ongoing assessment during survivorship is warranted. Some fertility preservation procedures have also been shown to mitigate common late effects. This review explores the link between late effects from treatment and common comorbidities from infertility, which may exacerbate these late effects. This review also highlights the relevance of fertility discussions in the AYA survivorship population.

SUMMARY Quality of life is an important but distinct issue for adolescent and young adults (AYA) compared with older adults. Reproductive health is a key aspect of health-related quality of life and spans across physiological and psychological domains. While fertility issues have had more attention in the past 5 years, there are other aspects of reproductive health requiring recognition by healthcare practitioners in AYA oncology. These include attention to human papillomavirus and sexually transmitted infection risk, contraception and sexual health in relation to late effects of cancer and treatment. Alkylating agents in chemotherapy, total-body radiation or external-beam radiation in a field that includes the ovaries, testes or endocrine system may cause long-term impairment to reproductive health functioning. We examine reproductive health in relation to National Comprehensive Cancer Network and American Academy of Pediatrics guidelines for AYA cancer survivors in the USA. While fertility preservation ...

Background: Independently offered comments on a physician survey may reveal new insight into physician recommendations for human papillomavirus (HPV) vaccination to their patients. The current study is a follow-up to a previous report of free-response comments and describes remarks from the second of two surveys regarding physicians' HPV vaccine recommendation practices. A secondary objective was to investigate comments specific to male HPV vaccination, which was FDA approved after the first survey was completed.Methods: In 2011, a mailed survey assessing physicians' HPV-related knowledge, attitudes, and vaccination practices was conducted among a national sample of U.S. primary care physicians, including Family Physicians, Pediatricians, and Obstetricians/Gynecologists. Comments were analyzed using grounded theory and content analysis.Findings: Of 928 completed surveys received, 134 participants provided comments, which were coded into four overall categories: 1) the survey process, 2) personal strategy for discussing HPV vaccine, 3) clinical practice guidelines preference, and 4) barriers to vaccine administration. Twenty-six comments were specific to males, with 17 physicians stating they did not recommend HPV vaccine to males. Physicians also cited the need for more information about HPV vaccine safety and efficacy for males.Interpretation: Respondents used the open-ended portion of the survey to reemphasize issues that were most important to them and to offer insight about the vaccine and survey process. (c) 2013 Elsevier Ltd. All rights reserved.

Reproductive health consistently ranks as one of the most important issues cited by adolescent and young adult (AYA) cancer survivors. Most literature on AYA cancer populations neglects broader reproductive health issues such as unintended pregnancies, contraception use and sexually transmitted infections, which, for cancer patients and survivors with compromised immune systems, can facilitate a multitude of future health problems. Lack of attention coupled with traditional risk-taking behaviors of AYAs poses a significant health risk to patients and survivors, particularly if fertility status is unknown or inaccurately assessed. AYA oncology patients and survivors are vulnerable to reproductive health complications that should be addressed prior to, during and after treatment; however, there are currently no tracking systems or evidence-based guidelines to discuss this subject with patients and survivors. Further research is needed to identify physician practices, AYA preferences and strategies for communication that can pave the way to establishing guidelines to discuss in oncology settings.

PURPOSE:The purpose of this qualitative study was to assess the coping styles of female adolescent cancer patients regarding potential loss of fertility. Expectations and desires for the future, coping styles in typical adolescence, and coping styles when faced with potential loss of fertility due to cancer treatment are discussed.METHODS:Female adolescents diagnosed with cancer aged 12-18 years at study (N=14) were administered a 10-item values clarification tool to pilot test the readability and relevance of the items on reproductive concerns, followed by a cognitive debriefing interview asking participants how they would respond to each item. These qualitative responses were assessed for coping style type using the constant comparative approach.RESULTS:All adolescent participants reported having a strong desire for biological children in the future. Reactions to questions regarding the loss of fertility fell into two categories of coping styles: emotion-focused coping or problem-focused (engagement) coping. Within emotion-focused coping, there were three distinct styles: externalizing attribution style, internalizing attribution style, and repressive adaptation. Problem-focused coping adolescents displayed optimism.CONCLUSION:Successful interventions aimed at promoting adaptive coping styles should seek to uncover adolescents' values about future parenthood and reproduction. Development of an age-appropriate assessment to stimulate dialogue regarding fertility and initiate an adolescent's cognitive processing of potential fertility loss is warranted.