169 results on '"Nahata L"'
Search Results
2. A synopsis of global frontiers in fertility preservation
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Ataman, L. M., Laronda, M. M., Gowett, M., Trotter, K., Anvari, H., Fei, F., Ingram, A., Minette, M., Suebthawinkul, C., Taghvaei, Z., Torres-Vélez, M., Velez, K., Adiga, S. K., Anazodo, A., Appiah, L., Bourlon, M. T., Daniels, N., Dolmans, M. M., Finlayson, C., Gilchrist, R. B., Gomez-Lobo, V., Greenblatt, E., Halpern, J. A., Hutt, K., Johnson, E. K., Kawamura, K., Khrouf, M., Kimelman, D., Kristensen, S., Mitchell, R. T., Moravek, M. B., Nahata, L., Orwig, K. E., Pavone, M. E., Pépin, D., Pesce, R., Quinn, G. P., Rosen, M. P., Rowell, E., Smith, K., Venter, C., Whiteside, S., Xiao, S., Zelinski, M., Goldman, K. N., Woodruff, T. K., and Duncan, F. E.
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- 2022
- Full Text
- View/download PDF
3. Correction to: A synopsis of global frontiers in fertility preservation
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Ataman, L. M., Laronda, M. M., Gowett, M., Trotter, K., Anvari, H., Fei, F., Ingram, A., Minette, M., Suebthawinkul, C., Taghvaei, Z., Torres‑Vélez, M., Velez, K., Adiga, S. K., Anazodo, A., Appiah, L., Bourlon, M. T., Daniels, N., Dolmans, M. M., Finlayson, C., Gilchrist, R. B., Gomez‑Lobo, V., Greenblatt, E., Halpern, J. A., Hutt, K., Johnson, E. K., Kawamura, K., Khrouf, M., Kimelman, D., Kristensen, S., Mitchell, R. T., Moravek, M. B., Nahata, L., Orwig, K. E., Pavone, M. E., Pépin, D., Pesce, R., Quinn, G. P., Rosen, M. P., Rowell, E., Smith, K., Venter, C., Whiteside, S., Xiao, S., Zelinski, M., Goldman, K. N., Woodruff, T. K., and Duncan, F. E.
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- 2022
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- View/download PDF
4. Pediatric oncofertility care in limited versus optimum resource settings: results from 39 surveyed centers in Repro-Can-OPEN Study Part I & II
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Salama, M, primary, Nahata, L., additional, Jayasinghe, Y., additional, Gomez-Lobo, V., additional, Laronda, MM., additional, Moravek, MB., additional, Meacham, LR., additional, Christianson, MS., additional, Lambertini, M., additional, Anazodo, A., additional, Quinn, GP., additional, and Woodruff, TK., additional
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- 2022
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- View/download PDF
5. Standards of Care for the Health of Transgender and Gender Diverse People, Version 8
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Coleman, E., Radix, A. E., Bouman, W. P., Brown, G. R., de Vries, A. L. C., Deutsch, M. B., Ettner, R., Fraser, L., Goodman, M., Green, J., Hancock, A. B., Dhejne, C., Edmiston, E. K., Edwards Leeper, L., Ehrbar, R., Hall, B. P., Ehrensaft, D., Eisfeld, J., Feldman, J. L., Fisher, A. D., Garcia, M. M., Johnson, K., Klink, D. T., Gijs, L., Green, S. E., Hardy, T. L. D., Irwig, M. S., Jacobs, L. A., Mazur, T., Mclachlan, C., Janssen, A. C., Kreukels, B. P. C., Kuper, L. E., Kvach, E. J., Obedin Maliver, J., Malouf, M. A., Massey, R., Morrison, S. D., Mosser, S. W., Neira, P. M., Reed, T., Rider, G. N., Nygren, U., Oates, J. M., Pagkalos, G., Patton, J., Phanuphak, N., Sabir, K., Safer, J. D., Rachlin, K., Ristori, J., Robbins Cherry, S., Roberts, S. A., Steensma, T. D., Rodrigue Wallberg, K. A., Rosenthal, S. M., Scheim, A. I., Seal, L. J., Sehoole, T. J., Vala, L. N., Van Mello, N. M., Spencer, K., St. Amand, C., Strang, J. F., Taylor, G. B., Tilleman, K., Arcelus, J., Johnson, T. W., T’Sjoen, G. G., Veale, J. F., Vencill, J. a., Vincent, B., Motmans, J., Wesp, L. M., West, M. A., Karasic, D. H., Knudson, G. A., Leibowitz, S. F., Tangpricha, V., Tishelman, A. c., Meyer Bahlburg, H. F. L., Monstrey, S. J., Nahata, L., Nieder, T. O., Reisner, S. L., Allen, L. R., Richards, C., Schechter, L. S., Van Trotsenburg, M. A. A., Winter, S., Ducheny, K., Berg, D. R., Adams, N. J., Adrián, T. M., Azul, D., Bagga, H., Başar, K., Byrne, J., Capitán, L., Bathory, D. S., Belinky, J. J., Berli, J. U., Bluebond Langner, R. O., Bouman, M.B., Dalke, K. B., Bowers, M. L., Brassard, P. J., Cargill, C. J., Carswell, J. M., Chang, S. C., D’Marco, A., Chelvakumar, G., Corneil, T., De Cuypere, G., de Vries, E., Den Heijer, M., Elaut, E., Erickson Schroth, L., Devor, A. H., APH - Mental Health, APH - Quality of Care, VU University medical center, Plastic, Reconstructive and Hand Surgery, APH - Methodology, Other Research, Internal medicine, APH - Aging & Later Life, Amsterdam Gastroenterology Endocrinology Metabolism, Medical psychology, APH - Personalized Medicine, Amsterdam Reproduction & Development (AR&D), and Obstetrics and gynaecology
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CENTRAL PRECOCIOUS PUBERTY ,Health (social science) ,SOC8 ,assessment ,Psychology, Clinical ,Medicine (miscellaneous) ,Social Sciences ,population ,institutional settings ,surgery ,Endocrinologia ,Transgèneres ,QUALITY-OF-LIFE ,terminology ,Medicine and Health Sciences ,Social Sciences - Other Topics ,Psychology ,adolescents ,Public, Environmental & Occupational Health ,education ,intersex ,AFFIRMING HORMONE-THERAPY ,communication ,Health Policy ,WORLD PROFESSIONAL ASSOCIATION ,Social Sciences, Interdisciplinary ,transgender ,OVARIAN TISSUE CRYOPRESERVATION ,eunuch ,PENILE INVERSION VAGINOPLASTY ,Life Sciences & Biomedicine ,mental health ,nonbinary ,sexual health ,FACIAL FEMINIZATION SURGERY ,Gender Studies ,Transgender people ,endocrinology ,primary care ,SEX REASSIGNMENT SURGERY ,children ,reproductive health ,Science & Technology ,voice ,postoperative care ,Biomedical Social Sciences ,Social Sciences, Biomedical ,health care professional ,gender diverse ,CONGENITAL ADRENAL-HYPERPLASIA ,Standards of Care ,TO-FEMALE TRANSSEXUALS - Abstract
Background: Transgender healthcare is a rapidly evolving interdisciplinary field. In the last decade, there has been an unprecedented increase in the number and visibility of transgender and gender diverse (TGD) people seeking support and gender-affirming medical treatment in parallel with a significant rise in the scientific literature in this area. The World Professional Association for Transgender Health (WPATH) is an international, multidisciplinary, professional association whose mission is to promote evidence-based care, education, research, public policy, and respect in transgender health. One of the main functions of WPATH is to promote the highest standards of health care for TGD people through the Standards of Care (SOC). The SOC was initially developed in 1979 and the last version (SOC-7) was published in 2012. In view of the increasing scientific evidence, WPATH commissioned a new version of the Standards of Care, the SOC-8. Aim: The overall goal of SOC-8 is to provide health care professionals (HCPs) with clinical guidance to assist TGD people in accessing safe and effective pathways to achieving lasting personal comfort with their gendered selves with the aim of optimizing their overall physical health, psychological well-being, and self-fulfillment. Methods: The SOC-8 is based on the best available science and expert professional consensus in transgender health. International professionals and stakeholders were selected to serve on the SOC-8 committee. Recommendation statements were developed based on data derived from independent systematic literature reviews, where available, background reviews and expert opinions. Grading of recommendations was based on the available evidence supporting interventions, a discussion of risks and harms, as well as the feasibility and acceptability within different contexts and country settings. Results: A total of 18 chapters were developed as part of the SOC-8. They contain recommendations for health care professionals who provide care and treatment for TGD people. Each of the recommendations is followed by explanatory text with relevant references. General areas related to transgender health are covered in the chapters Terminology, Global Applicability, Population Estimates, and Education. The chapters developed for the diverse population of TGD people include Assessment of Adults, Adolescents, Children, Nonbinary, Eunuchs, and Intersex Individuals, and people living in Institutional Environments. Finally, the chapters related to gender-affirming treatment are Hormone Therapy, Surgery and Postoperative Care, Voice and Communication, Primary Care, Reproductive Health, Sexual Health, and Mental Health. Conclusions: The SOC-8 guidelines are intended to be flexible to meet the diverse health care needs of TGD people globally. While adaptable, they offer standards for promoting optimal health care and guidance for the treatment of people experiencing gender incongruence. As in all previous versions of the SOC, the criteria set forth in this document for gender-affirming medical interventions are clinical guidelines; individual health care professionals and programs may modify these in consultation with the TGD person. ispartof: INTERNATIONAL JOURNAL OF TRANSGENDER HEALTH vol:23 issue:Suppl 1 pages:S1-S258 ispartof: location:United States status: published
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- 2022
6. Parent perceptions of psychosocial care for children with differences of sex development
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Crerand, C.E., Kapa, H.M., Litteral, J.L., Nahata, L., Combs, B., Indyk, J.A., Jayanthi, V.R., Chan, Y.-M., Tishelman, A.C., and Hansen-Moore, J.
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- 2019
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7. Fertility-related knowledge and reproductive goals in childhood cancer survivors: short communication
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Lehmann, V, Keim, M C, Nahata, L, Shultz, E L, Klosky, J L, Tuinman, M A, and Gerhardt, C A
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- 2017
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8. EFFECT OF PRIOR TRAINING ON REPRODUCTIVE ENDOCRINOLOGIST AND INFERTILITY SPECIALISTS’ KNOWLEDGE, SKILLS, ATTITUDES AND BEHAVIORS REGARDING THE CARE OF TRANSGENDER AND GENDER DIVERSE INDIVIDUALS
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Lipkin P, Monseur B, Mayo JA, Moravek M, Nahata L, Amato P, Alvero R, and Obedin-Maliver J
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Reproductive Medicine ,Obstetrics and Gynecology - Published
- 2022
9. A synopsis of global frontiers in fertility preservation.
- Author
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UCL - SSS/IREC/GYNE - Pôle de Gynécologie, UCL - (SLuc) Service de gynécologie et d'andrologie, Ataman, L M, Laronda, M M, Gowett, M, Trotter, K, Anvari, H, Fei, F, Ingram, A, Minette, M, Suebthawinkul, C, Taghvaei, Z, Torres-Vélez, M, Velez, K, Adiga, S K, Anazodo, A, Appiah, L, Bourlon, M T, Daniels, N, Dolmans, Marie-Madeleine, Finlayson, C, Gilchrist, R B, Gomez-Lobo, V, Greenblatt, E, Halpern, J A, Hutt, K, Johnson, E K, Kawamura, K, Khrouf, M, Kimelman, D, Kristensen, S, Mitchell, R T, Moravek, M B, Nahata, L, Orwig, K E, Pavone, M E, Pépin, D, Pesce, R, Quinn, G P, Rosen, M P, Rowell, E, Smith, K, Venter, C, Whiteside, S, Xiao, S, Zelinski, M, Goldman, K N, Woodruff, T K, Duncan, F E, UCL - SSS/IREC/GYNE - Pôle de Gynécologie, UCL - (SLuc) Service de gynécologie et d'andrologie, Ataman, L M, Laronda, M M, Gowett, M, Trotter, K, Anvari, H, Fei, F, Ingram, A, Minette, M, Suebthawinkul, C, Taghvaei, Z, Torres-Vélez, M, Velez, K, Adiga, S K, Anazodo, A, Appiah, L, Bourlon, M T, Daniels, N, Dolmans, Marie-Madeleine, Finlayson, C, Gilchrist, R B, Gomez-Lobo, V, Greenblatt, E, Halpern, J A, Hutt, K, Johnson, E K, Kawamura, K, Khrouf, M, Kimelman, D, Kristensen, S, Mitchell, R T, Moravek, M B, Nahata, L, Orwig, K E, Pavone, M E, Pépin, D, Pesce, R, Quinn, G P, Rosen, M P, Rowell, E, Smith, K, Venter, C, Whiteside, S, Xiao, S, Zelinski, M, Goldman, K N, Woodruff, T K, and Duncan, F E
- Abstract
Since 2007, the Oncofertility Consortium Annual Conference has brought together a diverse network of individuals from a wide range of backgrounds and professional levels to disseminate emerging basic and clinical research findings in fertility preservation. This network also developed enduring educational materials to accelerate the pace and quality of field-wide scientific communication. Between 2007 and 2019, the Oncofertility Consortium Annual Conference was held as an in-person event in Chicago, IL. The conference attracted approximately 250 attendees each year representing 20 countries around the world. In 2020, however, the COVID-19 pandemic disrupted this paradigm and precluded an in-person meeting. Nevertheless, there remained an undeniable demand for the oncofertility community to convene. To maintain the momentum of the field, the Oncofertility Consortium hosted a day-long virtual meeting on March 5, 2021, with the theme of "Oncofertility Around the Globe" to highlight the diversity of clinical care and translational research that is ongoing around the world in this discipline. This virtual meeting was hosted using the vFairs ® conference platform and allowed over 700 people to participate, many of whom were first-time conference attendees. The agenda featured concurrent sessions from presenters in six continents which provided attendees a complete overview of the field and furthered our mission to create a global community of oncofertility practice. This paper provides a synopsis of talks delivered at this event and highlights the new advances and frontiers in the fields of oncofertility and fertility preservation around the globe from clinical practice and patient-centered efforts to translational research.
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- 2022
10. Fertility Preservation in Childhood, Adolescent, and Young Adult Cancer 2 Fertility preservation for male patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group
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Mulder, RL, Font-Gonzalez, A, Green, DM, Loeffen, EAH, Jacqueline, MMH, Loonen, J, Yu, RC, Ginsberg, JP, Mitchell, RT, Byrne, J, Skinner, R, Anazodo, A, Constine, LS, Vries, Anja, Jahnukainen, K, Lorenzo, A, Meissner, A, Nahata, L, Smit, Marij, Tournaye, H, Haupt, R, Van den Heuvel - Eibrink, Marry, Santen, HMV, Pelt, A, Dirksen, U, Hartogh, JD, Broeder, EVD, Wallace, WH, Levine, J, Tissing, WJE, Kremer, LCM (Leontien), Kenney, LB, Wetering, MD, Erasmus MC other, Urology, and Pediatrics
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SDG 3 - Good Health and Well-being - Published
- 2021
11. Fertility preservation for male patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group
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Mulder, R.L., Font-Gonzalez, A., Green, D.M., Loeffen, E.A.H., Hudson, M.M., Loonen, J.J., Yu, R., Ginsberg, J.P., Mitchell, R.T., Byrne, J., Skinner, R., Anazodo, A., Constine, L.S., Vries, A. de, Jahnukainen, K., Lorenzo, A., Meissner, A., Nahata, L., Dinkelman-Smit, M., Tournaye, H., Haupt, R., Heuvel-Eibrink, M.M. van den, Santen, H.M. van, Pelt, A.M.M. van, Dirksen, U., Hartogh, J. den, Dulmen-den Broeder, E. van, Wallace, W.H., Levine, J., Tissing, W.J., Kremer, L.C., Kenney, L.B., Wetering, M.D. van de, Mulder, R.L., Font-Gonzalez, A., Green, D.M., Loeffen, E.A.H., Hudson, M.M., Loonen, J.J., Yu, R., Ginsberg, J.P., Mitchell, R.T., Byrne, J., Skinner, R., Anazodo, A., Constine, L.S., Vries, A. de, Jahnukainen, K., Lorenzo, A., Meissner, A., Nahata, L., Dinkelman-Smit, M., Tournaye, H., Haupt, R., Heuvel-Eibrink, M.M. van den, Santen, H.M. van, Pelt, A.M.M. van, Dirksen, U., Hartogh, J. den, Dulmen-den Broeder, E. van, Wallace, W.H., Levine, J., Tissing, W.J., Kremer, L.C., Kenney, L.B., and Wetering, M.D. van de
- Abstract
Contains fulltext : 245057.pdf (Publisher’s version ) (Closed access), Male patients with childhood, adolescent, and young adult cancer are at an increased risk for infertility if their treatment adversely affects reproductive organ function. Future fertility is a primary concern of patients and their families. Variations in clinical practice are barriers to the timely implementation of interventions that preserve fertility. As part of the PanCareLIFE Consortium, in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in male patients who are diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. Recognising the need for global consensus, this clinical practice guideline used existing evidence and international expertise to rigorously develop transparent recommendations that are easy to use to facilitate the care of male patients with childhood, adolescent, and young adult cancer who are at high risk of fertility impairment and to enhance their quality of life.
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- 2021
12. Fertility preservation for male patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group.
- Author
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Mulder, RL, Font-Gonzalez, A, Green, DM, Loeffen, EAH, Hudson, MM, Loonen, J, Yu, R, Ginsberg, JP, Mitchell, RT, Byrne, J, Skinner, R, Anazodo, A, Constine, LS, de Vries, A, Jahnukainen, K, Lorenzo, A, Meissner, A, Nahata, L, Dinkelman-Smit, M, Tournaye, H, Haupt, R, van den Heuvel-Eibrink, MM, van Santen, HM, van Pelt, AMM, Dirksen, U, den Hartogh, J, van Dulmen-den Broeder, E, Wallace, WH, Levine, J, Tissing, WJE, Kremer, LCM, Kenney, LB, van de Wetering, MD, PanCareLIFE Consortium, Mulder, RL, Font-Gonzalez, A, Green, DM, Loeffen, EAH, Hudson, MM, Loonen, J, Yu, R, Ginsberg, JP, Mitchell, RT, Byrne, J, Skinner, R, Anazodo, A, Constine, LS, de Vries, A, Jahnukainen, K, Lorenzo, A, Meissner, A, Nahata, L, Dinkelman-Smit, M, Tournaye, H, Haupt, R, van den Heuvel-Eibrink, MM, van Santen, HM, van Pelt, AMM, Dirksen, U, den Hartogh, J, van Dulmen-den Broeder, E, Wallace, WH, Levine, J, Tissing, WJE, Kremer, LCM, Kenney, LB, van de Wetering, MD, and PanCareLIFE Consortium
- Abstract
Male patients with childhood, adolescent, and young adult cancer are at an increased risk for infertility if their treatment adversely affects reproductive organ function. Future fertility is a primary concern of patients and their families. Variations in clinical practice are barriers to the timely implementation of interventions that preserve fertility. As part of the PanCareLIFE Consortium, in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in male patients who are diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. Recognising the need for global consensus, this clinical practice guideline used existing evidence and international expertise to rigorously develop transparent recommendations that are easy to use to facilitate the care of male patients with childhood, adolescent, and young adult cancer who are at high risk of fertility impairment and to enhance their quality of life.
- Published
- 2021
13. It takes a village: characteristics of and barriers to pediatric fertility preservation programs within the pediatric initiative network (PIN) of the oncofertility consortium
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Moravek, M.B., primary, Appiah, L.A., additional, Gomez-Lobo, V., additional, and Nahata, L., additional
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- 2017
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14. Sexually transmitted infection testing and diagnosis in adolescents and young adults with sickle cell disease.
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Walden J, Stanek JR, Ebersole AM, Nahata L, and Creary SE
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- Humans, Adolescent, Male, Female, Retrospective Studies, Cross-Sectional Studies, Young Adult, Adult, Black or African American statistics & numerical data, Follow-Up Studies, Anemia, Sickle Cell diagnosis, Anemia, Sickle Cell epidemiology, Sexually Transmitted Diseases diagnosis, Sexually Transmitted Diseases epidemiology
- Abstract
Background: Sexually transmitted infections (STIs) are common and disproportionately affect Black adolescents and young adults (AYAs). Less is known about STIs among Black AYAs with chronic conditions, such as sickle cell disease (AYAs-SCD). This study compared STI testing and diagnosis between AYAs-SCD and their peers, overall and among STI-related encounters., Procedure: This retrospective, cross-sectional study used diagnosis and billing codes in the Pediatric Health Information System (PHIS) to identify inpatient and emergency department encounters from January 1, 2022 to May 31, 2023 among all AYAs 15-24 years and those with STI-related diagnoses (e.g., "cystitis"). STI testing and diagnosis rates were compared between AYAs-SCD, non-Black AYAs, and Black AYAs, controlling for age, sex, and encounter setting., Results: We identified 3602 AYAs-SCD, 177,783 Black AYAs, and 534,495 non-Black AYAs. AYAs-SCD were less likely to be tested for STIs than non-Black AYAs (odds ratio [OR] = 0.26; adj. p < .001) and Black AYAs (OR = 0.53; adj. p < .001). When tested, AYAs-SCD were more likely to be diagnosed with an STI than non-Black AYAs (OR = 2.39; adj. p = .006) and as likely as Black AYAs (OR = 0.67; adj. p = .15). Among STI-related encounters, AYAs-SCD were less likely to be tested than non-Black AYAs (OR = 0.18; adj. p < .001) and Black AYAs (OR = 0.44; adj. p < .001). No significant differences in STI diagnoses were found in this subset between AYAs-SCD and non-Black AYAs (OR = 0.32; adj. p = .28) or Black AYAs (OR = 1.07; adj. p = .99)., Conclusions: STI care gaps may disproportionately affect AYAs-SCD. STIs should be considered when evaluating symptomatic AYAs-SCD in acute settings. More research is needed to further contextualize STI care for AYAs-SCD., (© 2024 Wiley Periodicals LLC.)
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- 2024
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15. The Case for Pre-Treatment Sperm Banking as Standard of Care for All Post-Pubertal Males with Cancer.
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Nahata L, Halpern JA, Bendle K, Frias O, Orwig K, Reinecke J, Smith JF, Woodard T, and Levine J
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- 2024
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16. Measuring up: Do pediatric endocrinology fellows' career expectations align with workforce reality?
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Nahata L, Srinivasan S, Roche CI, Leavens KF, Kim MS, Levenson A, Topor LS, Singer K, and McCormack S
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- 2024
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17. Influenza vaccine uptake among youth with sickle cell disease who are seen in clinic before and after the COVID-19 pandemic.
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Walden J, Stanek JR, Young J, Griffith MM, Nahata L, and Creary SE
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- Humans, Female, Male, Adolescent, Child, Vaccination Coverage statistics & numerical data, Vaccination statistics & numerical data, SARS-CoV-2 immunology, Child, Preschool, Pandemics prevention & control, Hospitalization statistics & numerical data, Influenza Vaccines administration & dosage, Anemia, Sickle Cell, Influenza, Human prevention & control, Influenza, Human epidemiology, COVID-19 prevention & control, COVID-19 epidemiology
- Abstract
Influenza vaccination is critical for children with sickle cell disease (SCD) due to risks of severe influenza infections. Despite declining influenza vaccination among children since the COVID-19 pandemic, less is known about influenza vaccine coverage among youth with SCD during this same period. We compared influenza vaccine uptake among youth with SCD seen by a SCD provider in clinic during the 2019-2020 and 2022-2023 influenza seasons and described infection characteristics. Overall, 85% (n = 220) of children received their influenza vaccine during 2019-2020 compared to 75% (n = 245) in 2022-2023 (p = 0.059). Participants seen during both seasons were more likely to shift from vaccinated in 2019-2020 to unvaccinated in 2022-2023 than vice versa (McNemar's OR = 3.0; p = 0.008). Among 66 documented infections, 25.8% resulted in hospitalization. We found high influenza vaccine uptake but those seen during both seasons were more likely to become unvaccinated. More research is needed to understand influenza vaccine decision-making in this population., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Ltd. All rights reserved.)
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- 2024
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18. Depression and anxiety in transgender and non-binary adolescents: prevalence and associations between adolescent and caregiver reports.
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Liles SM, Olsavsky AL, Chen D, Grannis C, Hoskinson KR, Leibowitz SF, Nelson EE, Stanek CJ, Strang JF, and Nahata L
- Abstract
Transgender/non-binary (TNB) adolescents are at increased risk for mental health concerns, and caregiver awareness is important to facilitate access to care. Yet, limited research has examined caregiver awareness of TNB mental health. Thus, we examined (1) the prevalence of internalizing symptoms (depression, generalized anxiety, separation anxiety, social anxiety) among TNB adolescents and (2) associations between adolescent and caregiver reports of adolescent mental health symptoms. TNB adolescents (N = 75) aged 12-18 and a caregiver were recruited from a multidisciplinary gender clinic in Ohio. Adolescents self-reported their mental health symptoms via the CDI and SCARED. Caregivers reported their perceptions of the adolescent's mental health symptoms via the CASI-5. Descriptive statistics assessed participant characteristics, adolescent self-reported mental health symptoms, and caregiver proxy reports of adolescent mental health symptoms. Pearson's correlations and scatterplots were used to compare adolescent and caregiver reports and McNemar tests assessed if the differences were statistically significant. Most TNB adolescents reported elevated symptoms of depression (59%), generalized anxiety (75%), separation anxiety (52%), and social anxiety (78%). Caregiver and adolescent reports were significantly correlated for depression (r = .36, p = .002), separation anxiety (r = .39, p < .001), and social anxiety (r = .47, p < .001). Caregiver and adolescent reports of generalized anxiety were not significantly correlated (r = .21, p = .08). McNemar tests were significant (all p < .001), such that adolescents' reports met clinical cutoffs far more than their caregivers' reports., Conclusions: Though adolescent and caregiver reports were low to moderately correlated, youth reports were consistently higher, suggesting the importance of interventions to increase caregiver understanding of TNB adolescent mental health., What Is Known: • Transgender/non-binary adolescents are at high risk for mental health concerns and caregivers are essential to coordinate care., What Is New: • This study expands the diagnostic mental health sub-categories examined in transgender/non-binary adolescents, noting elevated symptoms of separation and social anxiety. • Transgender/non-binary adolescents reported more symptoms of depression, generalized anxiety, separation anxiety, and social anxiety than caregivers., (© 2024. The Author(s).)
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- 2024
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19. Fertility Perspectives and Concerns in Adolescents With PCOS Compared to Controls.
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Salhah H, Bonny A, Benedict J, and Nahata L
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Purpose: Polycystic ovary syndrome (PCOS) is prevalent in young females and is known to affect fertility. Minimal research has examined fertility perspectives in adolescents with PCOS, despite adult research revealing relationships between infertility and psychosocial well-being and quality of life. We examined fertility perspectives/concerns in adolescents with PCOS and an age- and body mass index (BMI)-matched control group and explored associations with quality of life., Methods: This was a cross-sectional study of female adolescents (13-21 years of age) with PCOS (n = 50) and age- and BMI-matched controls (n = 50), recruited at a large Midwestern pediatric center. Surveys assessed sociodemographics, hirsutism, fertility perspectives and quality of life. Descriptive statistics and Welch's 2-sample t-tests were used to examine fertility perspectives and quality of life., Results: Of the 103 approached, 100 participants were enrolled (97% recruitment rate), with 50 participants in each group. Parenthood goals did not significantly differ between groups; >70% expressed desire to have biological children. However, PCOS participants reported significantly higher concerns about future fertility (p < .01) without differences in fertility knowledge or support (p = .53). Most PCOS participants stated they would feel angry if their provider withheld this information and reported wanting more information. Quality of life did not differ between groups., Discussion: Our study suggests that irrespective of PCOS status, most adolescents aspire to parenthood. Notably, many with PCOS lack awareness of infertility risks but express heightened concerns. In contrast to adult studies, fertility concerns among adolescents with PCOS were not associated with decreased quality of life, suggesting that earlier fertility counseling may improve outcomes., (Published by Elsevier Inc.)
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- 2024
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20. Healthcare communication satisfaction and psychosocial outcomes in adolescents and young adults with differences of sex development.
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Liles SM, Crerand CE, Buchanan C, Chan YM, Chen D, Hansen-Moore J, Tishelman AC, Umbaugh H, and Nahata L
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- Humans, Adolescent, Female, Male, Young Adult, Adult, Disorders of Sex Development psychology, Child, Adaptation, Psychological, Surveys and Questionnaires, Resilience, Psychological, Communication, Quality of Life psychology, Patient Satisfaction
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Objectives: We examined: (1) healthcare communication satisfaction and psychosocial outcomes (resilience, QoL, and psychological adjustment) in adolescents and young adults (AYA) with differences of sex development (DSD), (2) differences in psychosocial outcomes between those who were highly satisfied and those who were less satisfied, and (3) group differences between adolescents (ages 12-17) and young adults (ages 18-26) regarding associations with healthcare communication and psychosocial outcomes., Methods: AYA with DSD across four study sites reported on satisfaction with healthcare communication and psychosocial outcomes. Analyses included descriptive statistics (aim 1), independent samples t-tests (aim 2), and Pearson's correlations (aim 3)., Results: Participants reported high levels of satisfaction with healthcare communication. Higher healthcare communication satisfaction was associated with greater resilience (p = .01), better QoL (p = .02), and fewer internalizing problems (p = .04). For adolescents, higher healthcare communication satisfaction was associated with better psychosocial outcomes (p values ranging from.01-.04). No significant associations were found in the young adult group., Conclusions: Satisfaction with healthcare communication is related to positive psychosocial outcomes in adolescents with DSD., Practice Implications: These data underscore the importance of optimizing communication with families, engaging AYA in early and ongoing discussions about their care, and including psychosocial providers in DSD care., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)
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- 2024
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21. Mental Health Diagnoses and Suicidality Among Transgender Youth in Hospital Settings.
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Nunes-Moreno M, Furniss A, Cortez S, Davis SM, Dowshen N, Kazak AE, Nahata L, Pyle L, Reirden DH, Schwartz B, Sequeira GM, and Nokoff NJ
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Purpose: The purpose of this analysis is to: 1) describe the most common mental health diagnoses in the emergency department (ED) and inpatient hospital settings among transgender and gender diverse (TGD) youth vs. matched controls and 2) evaluate if a gender-affirming hormone therapy (GAHT) or gonadotropin-releasing hormone agonist (GnRHa) prescription decreased the risk of suicidality within these settings. Methods: Using the PEDSnet dataset (years 2009-2019), TGD youth aged 8-18 ( n = 3414, with a median age at last visit of 16.2 [14.4, 17.7] years, were propensity-score matched to controls ( n = 13,628, age 16.6 [14.2, 18.3] years). Relative risks of the most common mental health diagnoses within ED and inpatient settings were calculated for TGD youth compared with controls. Recurrent time-to-event analysis was used to examine whether GAHT or GnRHa attenuated the risk of suicidality among subsamples of TGD youth. Results: TGD youth had a higher relative risk (95% confidence interval [CI]) of mental health diagnoses and suicidality in the ED (5.46 [4.71-6.33]) and inpatient settings (6.61 [5.28-8.28]) than matched controls. TGD youth prescribed GAHT had a 43.6% lower risk of suicidality (hazard ratio [HR] = 0.564 [95% CI 0.36-0.89]) compared with those never prescribed GAHT during our study period or before GAHT initiation. TGD youth who were prescribed GnRHa therapy had a nonstatistically significant reduction in ED or inpatient suicidality diagnoses compared with those never prescribed GnRHa (HR = 0.79 [0.47-1.31]). Conclusion: Although risk of mental health diagnoses and suicidality in ED and inpatient settings was high among TGD youth, a GAHT prescription was associated with a significant reduction in suicidality risk.
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- 2024
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22. Body image and psychosocial outcomes in youth and young adults with differences of sex development: a multi-method study.
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Crerand CE, Shehata A, Umbaugh H, Kapa HM, Hansen-Moore J, Nahata L, Buchanan C, Chen D, Rausch J, Udaipuria S, Jayanthi VR, Chan YM, Pratt KJ, Buschur E, Indyk J, and Tishelman AC
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- Humans, Female, Male, Adolescent, Young Adult, Cross-Sectional Studies, Adult, Resilience, Psychological, Psychosocial Functioning, Body Image psychology, Quality of Life psychology, Disorders of Sex Development psychology
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Objective: Differences of sex development (DSD) can affect the physical health, appearance, and psychosocial functioning of affected individuals, but little is known about how subjective appearance perceptions (body image) impact psychosocial outcomes. This study evaluated body image and its associations with psychosocial outcomes including quality of life, resilience, and psychosocial adjustment., Methods: This cross-sectional, multi-method study assessed body image and psychosocial outcomes including quality of life, adjustment, and resilience in 97 youth and young adults with DSD (mean age = 17 ± 3.7 years; 56% assigned female in infancy) using psychometrically sound instruments. A subsample (n = 40) completed qualitative interviews., Results: Quantitative results indicated that overall, participants were satisfied with their physical appearance, although less so with their primary sex characteristics. Body image dissatisfaction was associated with poorer psychosocial adjustment, quality of life, and resilience. Qualitatively, youth and young adults reported a variety of perceptions, both positive and negative, related to their body image and the impact of living with a DSD condition. Themes identified included appearance management; effects of DSD on body image; diagnostic factors and features; attitudes about diagnosis; and treatment., Conclusions: Body image is significantly associated with psychosocial outcomes in youth and young adults with DSD, with qualitative findings highlighting both positive and negative body image experiences. Results have implications for clinical care including screening for appearance concerns, normalization of appearance variations, and intervention development to better support healthy body image and psychosocial functioning in youth and young adults with DSD., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2024
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23. Reproductive Health in Trans and Gender Diverse Patients: Fertility related knowledge, attitudes, and decision-making among gender diverse youth - A narrative review.
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Baines HK, Quinn GP, Chen D, and Nahata L
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- Humans, Adolescent, Female, Male, Fertility, Counseling, Health Knowledge, Attitudes, Practice, Decision Making, Fertility Preservation psychology, Fertility Preservation methods, Reproductive Health, Transgender Persons psychology
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In Brief: Transgender and gender diverse (TGD) youth demonstrate low utilization of fertility preservation before medical and surgical gender-affirming interventions. However, a significant number of TGD youth have goals for parenthood and/or recognize that their attitude toward future family-building goals may change over time. In this narrative review, we conclude that TGD young people should have ongoing opportunities to discuss their family-building goals and options for fertility preservation. Validated decision tools can help facilitate these discussions., Abstract: The number of transgender and gender diverse (TGD) youth seeking care continues to increase, necessitating comprehensive counseling about potential long-term effects of gender-affirming medical interventions on fertility. The objective of this narrative review was to examine fertility-related knowledge, attitudes, and decision-making (including factors influencing decisions, decision regret, and decision tools) among TGD youth. We searched PubMed, PsycInfo, and Google Scholar for original, peer-reviewed research investigating TGD youth attitudes and knowledge of fertility and fertility preservation, perspectives on fertility counseling and fertility preservation decision-making, as well as fertility-related decision tools. We reviewed 106 studies; eight were included in this narrative review. Four studies assessed TGD youth knowledge and attitudes of fertility and fertility preservation, three examined perspectives on fertility counseling and fertility preservation decision-making, and three discussed development of decision tools. Key findings were that: (1) many TGD youth are aware of potential fertility-related impacts of gender-affirming treatments, but there are still unmet informational needs, (2) some TGD youth report an interest in future biological parenthood, and of those who are not currently interested in biological parenthood, many acknowledge their desires may change over time, (3) ongoing discussions about fertility and fertility preservation are critical, and (4) decision tools are in development. In conclusion, TGD youth and their caregivers should receive ongoing, comprehensive fertility counseling and decision tools may be helpful to facilitate these discussions and decisions in each youth's gender-affirming care journey.
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- 2024
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24. Medical Trainee Education and Advocacy Regarding Sexual Health and Oncofertility: Gaps and Opportunities.
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Wright-Nadkarni ML, Nahata L, and Audino AN
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- Humans, Female, Neoplasms, Education, Medical methods, Male, Sexual Health education
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- 2024
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25. Estimating Transgender and Gender-Diverse Youth Populations in Health Systems and Survey Data.
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Kahn NF, Sequeira GM, Asante PG, Kidd KM, Coker TR, Christakis DA, Karrington B, Aye T, Conard LAE, Dowshen N, Kazak AE, Nahata L, Nokoff NJ, Voss RV, and Richardson LP
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- Humans, Adolescent, Male, Female, United States epidemiology, Gender Dysphoria epidemiology, Gender Dysphoria psychology, Surveys and Questionnaires, Transgender Persons statistics & numerical data
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Objectives: To identify and examine demographic variation in estimates of gender-diverse youth (GDY) populations from the PEDSnet learning health system network and the Youth Risk Behavior Survey (YRBS)., Methods: The PEDSnet sample included 14- to 17-years-old patients who had ≥2 encounters at a member institution before March 2022, with at least 1 encounter in the previous 18 months. The YRBS sample included pooled data from 14- to 17-year-old in-school youth from the 2017, 2019, and 2021 survey years. Adjusted logistic regression models tested for associations between demographic characteristics and gender dysphoria (GD) diagnosis (PEDSnet) or self-reported transgender identity (YRBS)., Results: The PEDSnet sample included 392 348 patients and the YRBS sample included 270 177 youth. A total of 3453 (0.9%) patients in PEDSnet had a GD diagnosis and 5262 (1.9%) youth in YRBS self-identified as transgender. In PEDSnet, adjusted logistic regression indicated significantly lower likelihood of GD diagnosis among patients whose electronic medical record-reported sex was male and among patients who identified as Asian, Black/African American, and Hispanic/Latino/a/x/e. In contrast, in the YRBS sample, only youth whose sex was male had a lower likelihood of transgender identity., Conclusions: GDY are underrepresented in health system data, particularly those whose electronic medical record-reported sex is male, and Asian, Black/African American, and Hispanic/Latino/a/x/e youth. Collecting more accurate gender identity information in health systems and surveys may help better understand the health-related needs and experiences of GDY and support the development of targeted interventions to promote more equitable care provision., (Copyright © 2024 by the American Academy of Pediatrics.)
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- 2024
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26. Sexual and Reproductive Health Care after Gonadotoxic Treatment in Females at a Tertiary Pediatric Hospital.
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Mason I, Hewitt GD, McCracken KA, Whiteside S, Nahata L, and Kebodeaux CA
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- Humans, Female, Adolescent, Child, Young Adult, Cancer Survivors, Primary Ovarian Insufficiency chemically induced, Hospitals, Pediatric, Adult, Sexual Health, Antineoplastic Agents adverse effects, Neoplasms drug therapy, Neoplasms therapy, Neoplasms complications, Sexual Behavior, Fertility Preservation, Tertiary Care Centers, Reproductive Health
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Study Objectives: Recommendations from the Children's Oncology Group Long-Term Follow-Up (COG-LTFU) Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer emphasize the importance of reproductive health care, yet little is known regarding adherence to these recommendations and non-fertility-related sexual and reproductive health (SRH) outcomes., Methods: Follow-up of outcomes on the basis of the COG-LTFU guidelines was assessed in female patients who underwent fertility preservation consultation before gonadotoxic therapy between 2016 and 2022 at a single institution and were at least 6 months from treatment completion., Results: We included 140 patients, with a mean time of 2.7 years from treatment completion. Eighty-six patients were 12 years old or older, of whom sexual activity was recorded in 59 (68.7%), and 12 of 31 (38.7%) sexually active patients underwent sexual function assessment. The 57 (66.3%) patients at high risk of premature ovarian insufficiency (POI) at diagnosis were more likely than minimal-risk counterparts (29, 33.7%) to have abnormal uterine bleeding (42.1% vs 17.2%, P = .03), to be diagnosed with POI (29.8% vs 0%, P = .01), and to have sexual activity recorded (77.2% vs 51.7%, P = .03). Of 17 patients with POI, 82.4% were on hormone replacement therapy, and 58.8% had undergone bone mineral density testing., Conclusion: This study adds to the limited literature regarding non-fertility-related SRH outcomes after gonadotoxic therapy and illustrates opportunities to improve adherence to the COG-LTFU guidelines. Increased attention to SRH guidelines may increase detection and treatment of SRH conditions, improving the health and quality of life of female cancer survivors., Competing Interests: Conflicts of Interest The authors report no conflicts of interest or financial disclosures., (Copyright © 2024. Published by Elsevier Inc.)
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- 2024
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27. Multicenter Analysis of Cardiometabolic-Related Diagnoses in Youth with Congenital Adrenal Hyperplasia: a PEDSnet study.
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Chen LM, Valentine A, Davis SM, Graber E, Fechner PY, Furniss A, Nahata L, Pyle L, Vyas AK, Vogiatzi MG, and Nokoff NJ
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Context: Small cohorts of youth with congenital adrenal hyperplasia (CAH) demonstrate increased risk of obesity and poor cardiometabolic health., Objective: To determine the odds of cardiometabolic-related diagnoses in youth with CAH compared to matched controls in a cross-sectional analysis in a large, multisite database (PEDSnet)., Design: Electronic health record data (2009-2019) were used to determine odds of cardiometabolic-related outcomes based on diagnosis, anthropometric and laboratory data using logistic regression among youth with CAH vs. controls., Setting: Six PEDSnet sites., Patients or Other Participants: Youth with CAH and >1 outpatient visit in PEDSnet (n=1,647) were propensity-score matched on 8 variables to controls (n=6,588). A subset of youth with classic CAH (n=547, with glucocorticoid and mineralocorticoid prescriptions) were matched to controls (n=2,188)., Intervention(s): N/A., Main Outcome Measure(s): Odds of having cardiometabolic-related diagnoses among youth over 2 years with CAH compared to matched controls., Results: Outcomes were calculated for all individuals with CAH (median age at last visit 12.9 years [7.3, 17.6]) and a subset with classic CAH (median age at last visit 11.6 years [4.7, 17.5]) compared to their matched controls. All patients with CAH had higher odds of overweight/obesity (odds ratio [95% confidence interval] 3.63 [3.24,4.07]), hypertension (3.07 [2.60,3.64]), dysglycemia (1.95 [1.35,2.82], dyslipidemia (2.28 [1.79,2.91]) and liver dysfunction (2.30 [1.91,2.76]) compared to matched controls. Patients with classic CAH had higher odds of overweight/obesity (3.21 [2.61,3.93]), hypertension (8.22 [6.71,10.08]), and liver dysfunction (2.11 [1.55,2.89]) compared to matched controls., Conclusions: Overall, youth with CAH are at increased risk of diagnoses related to worse cardiometabolic health., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Endocrine Society. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)
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- 2024
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28. Using the consolidated framework for implementation research to identify challenges and opportunities for implementing a reproductive health education program into sickle cell disease care.
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Colton ZA, Liles SM, Griffith MM, Stanek CJ, Walden J, King A, Barnard-Kirk T, Creary S, and Nahata L
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Background: As survival rates for individuals with sickle cell disease (SCD) increase, calls have been made to improve their reproductive healthcare and outcomes. The research team created a web-based program entitled Fertility edUcaTion to Understand ReproductivE health in Sickle cell disease (FUTURES). The study aim was to use the Consolidated Framework for Implementation Research (CFIR) during pre-implementation to identify challenges and opportunities from the individual to systems level of implementation to ultimately optimize the integration of FUTURES into clinical practice., Methods: Semi-structured interviews were conducted with clinicians, research team members, and adolescent and young adult (AYA) males with SCD and their caregivers who participated in pilot testing. Interviews (N = 31) were coded inductively and then mapped onto CFIR domains (i.e., outer setting, inner setting, characteristics of individuals, and intervention characteristics)., Results: Research team interviews indicated the lack of universal guidelines for reproductive care in this population and gaps in reproductive health knowledge as key reasons for developing FUTURES, also highlighting the importance of collaboration with community members during development. Clinicians reported intraorganizational communication as essential to implementing FUTURES and discussed challenges in addressing reproductive health due to competing priorities. Clinicians, AYAs, and caregivers reported positive views of FUTURES regarding length, engagement, accessibility, and content. Suggestions for the best setting and timing for implementation varied., Conclusions: Using CFIR during the pre-implementation phase highlighted challenges and opportunities regarding integrating this program into SCD care. These findings will inform adaptation and further testing of FUTURES to ensure effective implementation of this novel education program., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)
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- 2024
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29. Experiences and outcomes of fertility testing in male adolescents with sickle cell disease.
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Creary S, Liles SM, Colton ZA, Stanek CJ, Hudnall MC, Quinn GP, and Nahata L
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- Adult, Humans, Male, Adolescent, Fertility, Longitudinal Studies, Anemia, Sickle Cell therapy
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Adult males with sickle cell disease (SCD) may have abnormal semen parameters, raising the concern that SCD and/or treatments may impact fertility. Yet, studies that include adolescents are lacking. To determine if fertility testing is feasible in male adolescents with SCD, and to explore their experiences and outcomes of fertility testing, 33 adolescents who completed a web-based SCD reproductive health education program were offered a free semen analysis. Five (15%) obtained testing and each had abnormalities. Barriers to testing included lack of time and transportation and discomfort. Findings highlight the need for larger, longitudinal studies using innovative testing approaches., (© 2024 Wiley Periodicals LLC.)
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- 2024
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30. The experiences of families of children with cancer during the COVID-19 pandemic: A qualitative exploration.
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Sutherland-Foggio MS, Stanek CJ, Buff K, Nahata L, Foster-Akard T, Gerhardt CA, and Skeens MA
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- Child, Humans, Pandemics, Stress, Psychological psychology, Social Support, Parents psychology, COVID-19, Neoplasms complications
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Objectives: The COVID-19 pandemic posed new challenges to physical and psychological well-being. Families with pediatric cancer patients were particularly vulnerable due to changes like children staying at home, hospital policy shifts, and caring for an immunocompromised child. Limited research exists on COVID-19's effects on these families. This study aimed to assess the pandemic's impact and identify psychosocial support gaps., Methods: Participants ( N = 256) were parents of children with cancer recruited via Facebook in partnership with Momcology
® , a community-based organization for pediatric cancer, between February and May 2021. Qualitative analyses used open-ended responses about the pandemic's impact on the family., Results: Analysis revealed 6 themes, with positive and negative sentiments: family changes ( n = 169; 61% negative), social isolation ( n = 154; 100% negative), emotional impact ( n = 143; 89% negative), school changes ( n = 126; 80% negative), health-care changes ( n = 111; 96% negative), and physical health ( n = 49; 73% negative). Family changes overarched all themes and included financial strains, at-home schooling, and family bonding. Parents highlighted social isolation and the emotional impact of pandemic-related changes. School changes forced parents to balance remote-work and childcare. Health-care changes limited resources and visitation. Parents reported their children were less active and slept less but had fewer illnesses., Significance of Results: Many common pandemic challenges were exacerbated by the stress of caring for a child with cancer. Parents struggled most with loss of social support and feelings of isolation. Careful consideration should be given to providing resources for parents of children with cancer and their families.- Published
- 2024
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31. Development and validation of a computable phenotype for Turner syndrome utilizing electronic health records from a national pediatric network.
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Huang SD, Bamba V, Bothwell S, Fechner PY, Furniss A, Ikomi C, Nahata L, Nokoff NJ, Pyle L, Seyoum H, and Davis SM
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- Humans, Child, Female, Phenotype, Algorithms, Estradiol, Electronic Health Records, Turner Syndrome diagnosis, Turner Syndrome genetics
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Turner syndrome (TS) is a genetic condition occurring in ~1 in 2000 females characterized by the complete or partial absence of the second sex chromosome. TS research faces similar challenges to many other pediatric rare disease conditions, with homogenous, single-center, underpowered studies. Secondary data analyses utilizing electronic health record (EHR) have the potential to address these limitations; however, an algorithm to accurately identify TS cases in EHR data is needed. We developed a computable phenotype to identify patients with TS using PEDSnet, a pediatric research network. This computable phenotype was validated through chart review; true positives and negatives and false positives and negatives were used to assess accuracy at both primary and external validation sites. The optimal algorithm consisted of the following criteria: female sex, ≥1 outpatient encounter, and ≥3 encounters with a diagnosis code that maps to TS, yielding an average sensitivity of 0.97, specificity of 0.88, and C-statistic of 0.93 across all sites. The accuracy of any estradiol prescriptions yielded an average C-statistic of 0.91 across sites and 0.80 for transdermal and oral formulations separately. PEDSnet and computable phenotyping are powerful tools in providing large, diverse samples to pragmatically study rare pediatric conditions like TS., (© 2023 Wiley Periodicals LLC.)
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- 2024
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32. Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer.
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Sutherland-Foggio M, Olsavsky AL, Skeens MA, Nahata L, Hill K, Schaefer M, Himelhoch A, Kenney AE, Humphrey L, Olshefski R, and Gerhardt CA
- Abstract
Objectives: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease. Thus, we examined the impact of background factors and decision-making perceptions on both adolescents' involvement in care and their desired change in involvement., Methods: Adolescents with advanced cancer (<60% survival or refractory/relapsed disease), ages 10-23 ( n = 41; M
age = 15.37), were recruited approximately 1 month after diagnosis to complete measures of decision-making perceptions and their family role. Hierarchical regressions examined the contributions of background factors and decision-making perceptions to adolescents' frequency and desired involvement in their care. Qualitative interviews regarding decision-making were analyzed using deductive analysis., Results: The model examining frequency of involvement in care was significant, F (5,34) = 3.12, p = .02, R2 = .31. Older age was the only significant predictor ( β = .13, p = .003). The model examining desired involvement was non-significant, F (5,34) = 2.22, p = .075. Qualitative analysis indicated that (1) older adolescents have more involvement in decision-making, (2) collaborative decision-making occurred between the adolescent and extended family, and (3) adolescents trusted others to make decisions. Integration of qualitative and quantitative data revealed congruence in findings., Significance of Results: Adolescents with advanced cancer, who consider how decisions directly impact them and prefer greater autonomy, may be more involved in their medical care. Research is needed to identify other longitudinal predictors of decision-making and involvement in care. Providers should consider encouraging families to communicate their preferences and engage in shared decision-making.- Published
- 2024
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33. Primary care use and depression screening among young adults with sickle cell disease during their final year of pediatric hematology care.
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Bangudi S, Stanek C, Shankar D, Hart L, Nahata L, Cronin RM, and Creary SE
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- Child, Humans, Young Adult, Retrospective Studies, Depression diagnosis, Depression etiology, Primary Health Care, Anemia, Sickle Cell complications, Anemia, Sickle Cell diagnosis, Hematology
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Depression may contribute to transition risk among young adults with sickle cell disease (SCD). It is unclear if they receive depression screening because primary care providers (PCPs) routinely perform this screening, but PCP use declines with age. This retrospective study of young adults with SCD during their final year of pediatric hematology care identified 51 (91%) had PCPs. Among those with hospital system PCPs, 20% saw their PCP and 50% of those were screened for depression by the PCP. This suggests young adults with SCD may not receive depression screening or see PCPs, leading to potential missed opportunities for intervention., (© 2023 Wiley Periodicals LLC.)
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- 2024
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34. Mental Health of Youth With Autism Spectrum Disorder and Gender Dysphoria.
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Kahn NF, Sequeira GM, Reyes V, Garrison MM, Orlich F, Christakis DA, Aye T, Conard LAE, Dowshen N, Kazak AE, Nahata L, Nokoff NJ, Voss RV, and Richardson LP
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- Humans, Child, Adolescent, Mental Health, Anxiety Disorders complications, Anxiety, Autism Spectrum Disorder complications, Autism Spectrum Disorder diagnosis, Autism Spectrum Disorder epidemiology, Gender Dysphoria complications, Gender Dysphoria epidemiology, Gender Dysphoria psychology
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Background and Objectives: Youth with either autism spectrum disorder (ASD) or gender dysphoria (GD) alone have also been shown to be at greater risk for mental health (MH) concerns; however, very little research has considered how cooccurring ASD and GD may exacerbate MH concerns. The purpose of this study was to examine associations between ASD, GD, and MH diagnoses (anxiety, depression, eating disorder, suicidality, and self-harm) among US adolescent populations., Methods: This is a secondary analysis of a large administrative dataset formed by 8 pediatric health system members of the PEDSnet learning health system network. Analyses included descriptive statistics and adjusted mixed logistic regression models testing for associations between combinations of ASD and GD diagnoses and MH diagnoses as recorded in the patient's electronic medical record., Results: Based on data from 919 898 patients aged 9 to 18 years, adjusted mixed logistic regression indicated significantly greater odds of each MH diagnosis among those with ASD alone, GD alone, and cooccurring ASD/GD diagnoses compared with those with neither diagnosis. Youth with cooccurring ASD/GD were at significantly greater risk of also having anxiety (average predicted probability, 0.75; 95% confidence interval, 0.68-0.81) or depression diagnoses (average predicted probability, 0.33; 95% confidence interval, 0.24-0.43) compared with youth with ASD alone, GD alone, or neither diagnosis., Conclusions: Youth with cooccurring ASD/GD are more likely to also be diagnosed with MH concerns, particularly anxiety and depression. This study highlights the need to implement developmentally appropriate, gender-affirming MH services and interventions for youth with cooccurring ASD/GD., (Copyright © 2023 by the American Academy of Pediatrics.)
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- 2023
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35. Clinicians' perspectives on barriers and facilitators to sperm banking in adolescent males with cancer: a mixed-methods study.
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Nahata L, Liles SM, Gerhardt CA, Housten AJ, Jalili D, O'Brien SH, Vadaparampil ST, and Quinn GP
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- Child, Humans, Male, Adolescent, Semen, Spermatozoa, Counseling, Neoplasms psychology, Fertility Preservation methods
- Abstract
Purpose: To examine processes, barriers, and facilitators to sperm banking counseling and decision-making for adolescent males newly diagnosed with cancer from the perspective of clinicians who completed Oncofertility communication training. We also identify opportunities for improvement to inform future interventions and implementation., Methods: A survey (N=104) and subsequent focus groups (N=15) were conducted with non-physician clinicians practicing in pediatric oncology who completed Oncofertility communication training., Results: Most survey participants were confident in communicating about the impact of cancer on fertility (n=87, 83.7%) and fertility preservation options (n=80, 76.9%). Most participants reported never/rarely using a sperm banking decision tool (n=70, 67.3%), although 98.1% (n=102) said a decision tool with a family-centered approach would be beneficial. Primary themes in the subsequent focus groups included variable processes/workflows (inconsistent approaches to consult initiation; involvement of adolescents, caregivers, and various clinician types; assessment of puberty/sexual experience), structural and psychosocial barriers (cost and logistics, developmental, cultural, clinical acuity/prognosis), and facilitators (educational materials, alternative options for banking). Opportunities and strategies for improvement (including fertility preservation in existing research protocols; additional staffing/resources; oncologist education and buy-in; and development of decision tools) were informed by challenges identified in the other themes., Conclusion: Barriers to adolescent sperm banking remain, even among clinicians who have completed Oncofertility training. Although training is one factor necessary to facilitate banking, structural and psychosocial barriers persist. Given the complexities of offering sperm banking to pediatric populations, continued efforts are needed to mitigate structural barriers and develop strategies to facilitate decision-making before childhood cancer treatment., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
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- 2023
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36. Contraception, pregnancy, and STI counseling and care among transitioning young adults with sickle cell disease.
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Shankar D, Stanek CJ, Bangudi S, Liles SM, Colton ZA, Hart LC, Cronin RM, Creary SE, and Nahata L
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- Pregnancy, Female, Young Adult, Humans, Contraception, Counseling, Sexually Transmitted Diseases psychology, Anemia, Sickle Cell therapy
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- 2023
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37. FUTURES: efficacy and acceptability of a novel reproductive health education program for adolescent males with sickle cell disease.
- Author
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Stanek CJ, Creary SE, Liles SM, Colton ZA, Stanek JR, Quinn GP, Barnard-Kirk T, Abrams MA, and Nahata L
- Subjects
- Male, Humans, Adolescent, Reproductive Health, Anemia, Sickle Cell therapy, Sickle Cell Trait
- Published
- 2023
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38. Expanding upon the relationship between gender-affirming hormone therapy, neural connectivity, mental health, and body image dissatisfaction.
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Grannis C, Mattson WI, Leibowitz SF, Nahata L, Chen D, Strang JF, Thobe H, Indyk JA, and Nelson EE
- Subjects
- Adolescent, Infant, Newborn, Humans, Male, Female, Mental Health, Testosterone, Estrogens, Transgender Persons psychology, Body Dissatisfaction
- Abstract
Objective: Transgender/non-binary (TNB) youth are at increased risk for anxiety, depression, and suicidality compared to cisgender youth. Gender affirming hormone therapy (GAHT, i.e., testosterone or estrogen) is a standard of care option for TNB youth, and we have recently shown that GAHT (testosterone) in transgender youth assigned a female sex at birth is associated with reductions in internalizing symptomatology. The current analysis explores: 1) whether these benefits are observed in both TNB youth assigned female at birth (TNB
AFAB ) and TNB youth assigned male at birth (TNBAMAB ) and 2) the extent to which body image dissatisfaction and alteration in neural circuitry relate to internalizing symptoms., Method: The current study is an expansion of a previous publication from our lab that explored the association between gender-affirming testosterone and internalizing symptomatology. While participants in our previous study consisted of 42 TNBAFAB youth, participants in the current study included adolescent TNBAFAB receiving GAHT (n = 21; GAHT+) and not receiving GAHT (n = 29; GAHT-) as well as adolescent GAHT+ TNBAMAB (n = 15) and GAHT- TNBAMAB (n = 17). Participants reported symptoms of trait and social anxiety, depression, suicidality in the past year, and body image dissatisfaction. Brain activation was measured during a face processing task designed to elicit amygdala activation during functional MRI., Results: GAHT+ TNBAFAB had significantly lower rates of social anxiety, depression, and suicidality compared to GAHT- TNBAFAB . While there were no significant relationships between estrogen and depression and anxiety symptoms, longer duration of estrogen was related to less suicidality. Both testosterone and estrogen administration were related to significantly lower rates of body image dissatisfaction compared to GAHT- youth. No significant differences emerged for BOLD response in the left or right amygdala during the face processing task, however, there was a significant main effect of GAHT on functional connectivity between the right amygdala and the ventromedial prefrontal cortex, such that GAHT+ youth had stronger co-activation between the two regions during the task. Body image dissatisfaction, greater functional connectivity, their interaction effect, and age predicted depression symptomatology and body image dissatisfaction additionally predicted suicidality in the past year., Conclusion: The current study suggests that GAHT is associated with fewer short-term internalizing symptoms in TNBAFAB than in TNBAMAB , although internalizing symptoms among TNBAMAB may diminish with longer durations of estrogen treatment. Controlling for age and sex assigned at birth, our findings indicate that less body image dissatisfaction and greater functional connectivity between the amygdala and ventromedial prefrontal cortex were both predictors of fewer levels of internalizing symptoms following GAHT., Competing Interests: Declaration of Competing Interest none., (Copyright © 2023 Elsevier Ltd. All rights reserved.)- Published
- 2023
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39. The Gender Self-Report: A multidimensional gender characterization tool for gender-diverse and cisgender youth and adults.
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Strang JF, Wallace GL, Michaelson JJ, Fischbach AL, Thomas TR, Jack A, Shen J, Chen D, Freeman A, Knauss M, Corbett BA, Kenworthy L, Tishelman AC, Willing L, McQuaid GA, Nelson EE, Toomey RB, McGuire JK, Fish JN, Leibowitz SF, Nahata L, Anthony LG, Slesaransky-Poe G, D'Angelo L, Clawson A, Song AD, Grannis C, Sadikova E, Pelphrey KA, Gendaar Consortium, Mancilla M, McClellan LS, Csumitta KD, Winchenbach MR, Jilla A, Alemi F, and Yang JS
- Subjects
- Infant, Newborn, Humans, Female, Adolescent, Adult, Male, Child, Young Adult, Middle Aged, Aged, Gender Identity, Self Report, Sexual Behavior, Sexuality, Autistic Disorder, Sexual and Gender Minorities
- Abstract
Gender identity is a core component of human experience, critical to account for in broad health, development, psychosocial research, and clinical practice. Yet, the psychometric characterization of gender has been impeded due to challenges in modeling the myriad gender self-descriptors, statistical power limitations related to multigroup analyses, and equity-related concerns regarding the accessibility of complex gender terminology. Therefore, this initiative employed an iterative multi-community-driven process to develop the Gender Self-Report (GSR), a multidimensional gender characterization tool, accessible to youth and adults, nonautistic and autistic people, and gender-diverse and cisgender individuals. In Study 1, the GSR was administered to 1,654 individuals, sampled through seven diversified recruitments to be representative across age (10-77 years), gender and sexuality diversity (∼33% each gender diverse, cisgender sexual minority, cisgender heterosexual), and autism status (> 33% autistic). A random half-split subsample was subjected to exploratory factor analytics, followed by confirmatory analytics in the full sample. Two stable factors emerged: Nonbinary Gender Diversity and Female-Male Continuum (FMC). FMC was transformed to Binary Gender Diversity based on designated sex at birth to reduce collinearity with designated sex at birth. Differential item functioning by age and autism status was employed to reduce item-response bias. Factors were internally reliable. Study 2 demonstrated the construct, convergent, and ecological validity of GSR factors. Of the 30 hypothesized validation comparisons, 26 were confirmed. The GSR provides a community-developed gender advocacy tool with 30 self-report items that avoid complex gender-related "insider" language and characterize diverse populations across continuous multidimensional binary and nonbinary gender traits. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
- Published
- 2023
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40. Addressing fertility in adolescent boys with sickle cell disease: emerging clinical and ethical dilemmas.
- Author
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Nahata L, Quinn GP, Strouse JJ, and Creary SE
- Subjects
- Male, Humans, Adolescent, Fertility, Anemia, Sickle Cell complications, Anemia, Sickle Cell therapy
- Published
- 2023
- Full Text
- View/download PDF
41. Psychosexual functioning in cancer survivorship: What the pediatric oncologist needs to know.
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Frederick NN, Lehmann V, Ahler A, Carpenter K, Cherven B, Klosky JL, Nahata L, and Quinn GP
- Subjects
- Child, Adolescent, Young Adult, Humans, Adult, Survivors, Survivorship, Cancer Survivors, Neoplasms complications, Neoplasms therapy, Sexual Health
- Abstract
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., (© 2023 Wiley Periodicals LLC.)
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- 2023
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42. Optimizing health literacy to facilitate reproductive health decision-making in adolescent and young adults with cancer.
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Nahata L, Anazodo A, Cherven B, Logan S, Meacham LR, Meade CD, Zarnegar-Lumley S, and Quinn GP
- Subjects
- Humans, Adolescent, Young Adult, Reproductive Health, Decision Making, Health Literacy, Neoplasms therapy, Neoplasms psychology, Fertility Preservation psychology, Health Communication
- Abstract
Despite being considered "standard of care" by many organizations, fertility and reproductive health communications and counseling practices remain inconsistent for adolescents and young adults (AYAs) newly diagnosed with cancer and during survivorship. One factor known to affect how information is provided and received in the medical setting is health literacy. Providers should consider health literacy to optimize reproductive health communication with AYAs as they cope with their diagnosis, understand what it means for their future, process information about treatment options, learn about their potential harmful effects on fertility, make quick decisions about fertility preservation, and navigate a future family planning course. Thus, the objectives of this manuscript are to (a) summarize literature on reproductive health literacy; (b) describe health literacy frameworks; (c) examine ways to assess health literacy; and (d) identify ways to enhance clinician-patient communication in the AYA oncofertility setting., (© 2020 Wiley Periodicals LLC.)
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- 2023
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43. Reproductive Health Counseling among Youth with Sickle Cell Disease.
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Stanek CJ, Reich J, Theroux CI, Creary SE, Quinn GP, and Nahata L
- Subjects
- Pregnancy, Child, Humans, Female, Adolescent, Young Adult, Adult, Male, Reproductive Health, Family Planning Services, Counseling, Anemia, Sickle Cell complications, Anemia, Sickle Cell therapy, Anemia, Sickle Cell genetics, Infertility
- Abstract
Study 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: Data were abstracted from 167 electronic medical records of patients (age = 14-21, 54% female) with SCD (1/01/2015-12/31/19) at 2 sites (Nationwide Children's Hospital and Hassenfeld Children's Hospital at NYU Langone). Descriptive statistics, point-biserial correlations, and χ
2 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: 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., (Copyright © 2023. Published by Elsevier Inc.)- Published
- 2023
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44. Co-occurring Autism Spectrum Disorder and Gender Dysphoria in Adolescents.
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Kahn NF, Sequeira GM, Garrison MM, Orlich F, Christakis DA, Aye T, Conard LAE, Dowshen N, Kazak AE, Nahata L, Nokoff NJ, Voss RV, and Richardson LP
- Subjects
- Adolescent, Child, Female, Humans, Asian, Electronic Health Records, Prevalence, Black or African American, Autism Spectrum Disorder diagnosis, Autism Spectrum Disorder epidemiology, Autism Spectrum Disorder complications, Gender Dysphoria diagnosis, Gender Dysphoria epidemiology, Gender Dysphoria complications
- Abstract
Background and Objectives: Autism spectrum disorder (ASD) and gender dysphoria (GD) frequently cooccur. However, existing research has primarily used smaller samples, limiting generalizability and the ability to assess further demographic variation. The purpose of this study was to (1) examine the prevalence of cooccurring ASD and GD diagnoses among US adolescents aged 9 to 18 and (2) identify demographic differences in the prevalence of cooccurring ASD and GD diagnoses., Methods: This secondary analysis used data from the PEDSnet learning health system network of 8 pediatric hospital institutions. Analyses included descriptive statistics and adjusted mixed logistic regression testing for associations between ASD and GD diagnoses and interactions between ASD diagnosis and demographic characteristics in the association with GD diagnosis., Results: Among 919 898 patients, GD diagnosis was more prevalent among youth with an ASD diagnosis compared with youth without an ASD diagnosis (1.1% vs 0.6%), and adjusted regression revealed significantly greater odds of GD diagnosis among youth with an ASD diagnosis (adjusted odds ratio = 3.00, 95% confidence interval: 2.72-3.31). Cooccurring ASD/GD diagnoses were more prevalent among youth whose electronic medical record-reported sex was female and those using private insurance, and less prevalent among youth of color, particularly Black and Asian youth., Conclusions: Results indicate that youth whose electronic medical record-reported sex was female and those using private insurance are more likely, and youth of color are less likely, to have cooccurring ASD/GD diagnoses. This represents an important step toward building services and supports that reduce disparities in access to care and improve outcomes for youth with cooccurring ASD/GD and their families., (Copyright © 2023 by the American Academy of Pediatrics.)
- Published
- 2023
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45. Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease.
- Author
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Colton ZA, Stanek CJ, Liles SM, Baker C, Barnard-Kirk T, Chan P, McCorkle B, Quinn GP, Shen Y, Theroux CI, Creary SE, and Nahata L
- Subjects
- Female, Humans, Male, Adolescent, Young Adult, Reproduction, Mothers, Internet, Reproductive Health education, Anemia, Sickle Cell
- Abstract
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., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Colton et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
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- 2023
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46. Development and Validation of a Computable Phenotype for Turner Syndrome Utilizing Electronic Health Records from a National Pediatric Network.
- Author
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Huang SD, Bamba V, Bothwell S, Fechner PY, Furniss A, Ikomi C, Nahata L, Nokoff NJ, Pyle L, Seyoum H, and Davis SM
- Abstract
Turner syndrome (TS) is a genetic condition occurring in ~1 in 2,000 females characterized by the complete or partial absence of the second sex chromosome. TS research faces similar challenges to many other pediatric rare disease conditions, with homogenous, single-center, underpowered studies. Secondary data analyses utilizing Electronic Health Record (EHR) have the potential to address these limitations, however, an algorithm to accurately identify TS cases in EHR data is needed. We developed a computable phenotype to identify patients with TS using PEDSnet, a pediatric research network. This computable phenotype was validated through chart review; true positives and negatives and false positives and negatives were used to assess accuracy at both primary and external validation sites. The optimal algorithm consisted of the following criteria: female sex, ≥1 outpatient encounter, and ≥3 encounters with a diagnosis code that maps to TS, yielding average sensitivity 0.97, specificity 0.88, and C-statistic 0.93 across all sites. The accuracy of any estradiol prescriptions yielded an average C-statistic of 0.91 across sites and 0.80 for transdermal and oral formulations separately. PEDSnet and computable phenotyping are powerful tools in providing large, diverse samples to pragmatically study rare pediatric conditions like TS., Competing Interests: CONFLICT OF INTEREST STATEMENT SMD and PYF are site investigators for a clinical trial of growth hormone in Turner syndrome sponsored by Ascendis Pharma. NJN is a consultant for Neurocrine Biosciences, Inc. and Ionis Pharmaceuticals. CI is a site investigator for clinical trial of growth hormone in children with growth hormone deficiency and Turner syndrome sponsored by Novo Nordisk, and treatment of type 2 diabetes in children sponsored by Eli Lilly. All other authors have no conflicts of interest to declare.
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- 2023
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47. Comment on: Infertility and treatment-seeking practices among females and males with sickle cell disease in the Sickle Cell Disease Implementation Consortium registry.
- Author
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Creary S, Pecker LH, Quinn GP, and Nahata L
- Published
- 2023
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48. Associations Among Gender-Affirming Hormonal Interventions, Social Support, and Transgender Adolescents' Mental Health.
- Author
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Olsavsky AL, Grannis C, Bricker J, Chelvakumar G, Indyk JA, Leibowitz SF, Mattson WI, Nelson EE, Stanek CJ, and Nahata L
- Subjects
- Humans, Male, Female, Adolescent, Gender Identity, Mental Health, Cross-Sectional Studies, Social Support, Transgender Persons psychology
- Abstract
Purpose: We aimed to examine the concurrent associations of gender-affirming hormonal interventions (i.e., puberty blockers, testosterone, estrogen), as well as family and friend social support, on transgender and nonbinary (TNB) adolescents' reports of anxiety symptoms, depressive symptoms, nonsuicidal self-injury (NSSI), and suicidality. We hypothesized that gender-affirming hormonal interventions and greater social support would be associated with lower levels of mental health concerns., Methods: Participants (n = 75; aged 11-18; M
age = 16.39 years) were recruited for this cross-sectional study from a gender-affirming multidisciplinary clinic. Fifty-two percent were receiving gender-affirming hormonal interventions. Surveys assessed anxiety and depressive symptoms, NSSI and suicidality in the past year, and social support from family, friends, and significant others. Hierarchical linear regression models examined associations between gender-affirming hormonal interventions and social support (i.e., family, friend) with mental health while accounting for nonbinary gender identity., Results: Regression models explained 15%-23% of variance in TNB adolescents' mental health outcomes. Gender-affirming hormonal interventions were associated with fewer anxiety symptoms (β = -0.23; p < .05). Family support was associated with fewer depressive symptoms (β = -0.33; p = .003) and less NSSI (β = -0.27; p = .02). Friend support was associated with fewer anxiety symptoms (β = -0.32; p = .007) and less suicidality (β = -0.25; p = .03)., Discussion: TNB adolescents had better mental health outcomes in the context of receiving gender-affirming hormonal interventions and having greater support from family and friends. Findings highlight the important role of quality family and friend support for TNB mental health. Providers should aim to address both medical and social factors to optimize TNB mental health outcomes., (Copyright © 2023 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)- Published
- 2023
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49. Reproductive endocrinologist and infertility specialists' knowledge, skills, behaviors, and attitudes regarding the care for transgender and gender-diverse individuals.
- Author
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Lipkin P, Monseur B, Mayo J, Moravek M, Nahata L, Amato P, Alvero R, and Obedin-Maliver J
- Abstract
Objective: To investigate associations between reproductive endocrinology and infertility (REI) providers' prior training and current knowledge, skills, attitudes, and behaviors regarding fertility preservation and family building for transgender and gender-diverse (T/GD) patients., Design: The survey was distributed to members of the Society for Reproductive Endocrinology and Infertility, the REI-physician-focused professional body within the American Society for Reproductive Medicine, with additional participants recruited through snowball sampling., Results: Participants (n = 206) reported on training in T/GD care; 51% endorsed prior training. Most participants (93%) believed T/GD individuals were as fit for parenthood as cisgender individuals. Prior training was associated with an increased likelihood of offering T/GD health resources and more frequent consultations with specialist colleagues.Common barriers to providing care indicated by respondents included cost, delays in gender-affirming care, and lack of knowledge of the potential impact of hormonal interventions. Common facilitators included education and training, prior experience, and affordability of services., Conclusions: Most REI providers believed T/GD individuals are fit for parenthood and agreed that prior training facilitates care for T/GD patients. The lack of provider knowledge emerged as a barrier to care. Although training helped facilitate some components of care, systemic barriers such as the cost and variability of patient population characteristics/experiences are important considerations when serving T/GD individuals., (© 2023 Published by Elsevier Inc. on behalf of American Society for Reproductive Medicine.)
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- 2023
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50. Neuropsychological and mental health concerns in a multicenter clinical sample of youth with turner syndrome.
- Author
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Kremen J, Davis SM, Nahata L, Kapa HM, Dattilo TM, Liu E, Hutaff-Lee C, Tishelman AC, and Crerand CE
- Subjects
- Female, Child, Child, Preschool, Humans, Adolescent, Mental Health, Menarche, Karyotype, Karyotyping, Turner Syndrome diagnosis
- Abstract
Clinical practice guidelines for individuals with Turner syndrome (TS) recommend screening for neuropsychological concerns (NC) and mental health concerns (MHC). However, current provider screening and referral patterns for NC and MHC are not well characterized. Additionally, prevalence of and risk factors for NC and MHC vary across studies. This multicenter chart review study examined the prevalence, risk factors for, and management of NC and MHC in a cohort of 631 patients with TS from three pediatric academic medical centers. NC and/or MHC were documented for 48.2% of patients. Neuropsychological evaluation recommendations were documented for 33.9% of patients; 65.4% of the sample subsequently completed these evaluations. Mental health care recommendations were documented in 35.0% of records; subsequent documentation indicated that 69.7% of these patients received such services. Most notably, rates of documented MHC, NC, and related referrals differed significantly by site, suggesting the need for standardized screening and referral practices. TS diagnosis in early childhood was associated with an increased risk of NC. Spontaneous menarche was associated with increased risk of MHC. Younger age at growth hormone initiation was associated with both increased risk of isolated NC and co-occurring NC and MHC. Mosaic karyotype was associated with decreased risk of NC and MHC., (© 2023 Wiley Periodicals LLC.)
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- 2023
- Full Text
- View/download PDF
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