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Health-related quality of life among transgender and gender expansive youth at a rural gender wellness clinic

Abstract

Purpose

To address a critical gap in the existing Health-Related Quality of Life (HRQOL) literature by quantifying and describing HRQOL among transgender and gender expansive (TG/GE) youth at a rural gender clinic and comparing the HRQOL of these youth to age-stratified United States (U.S.) population standards.

Methods

This cross-sectional study includes results of the baseline HRQOL assessment of 141 TG/GE patients enrolled in the Gender Wellness Center (GWC) Pediatric Patient Registry. HRQOL was assessed using the Child Health Questionnaire-Child Form 87 (CHQ-CF87; ages < 18) and the Short Form-36 (SF-36v2; ages 18–21). Mean subscale scores were compared to the most current U.S. population standards available.

Results

On all but one of the CHQ-CF87 subscales, TG/GE youth scored significantly lower than 2015–2016 U.S. general population youth and youth with two chronic conditions. On the SF-36v2, TG/GE youth scored significantly higher than 2009 U.S. standards on all physical health domains but lower on all but one of the mental health domains.

Conclusions

Cross-sectional HRQOL data from a registry of TG/GE youth indicate significantly poorer mental health measures as compared with the U.S. general population. Longitudinal assessments are needed to evaluate whether HRQOL improves with gender-affirming care. Future studies should aim to identify sociocultural factors at the intersection of rurality and health that contribute to diminished HRQOL among rural TG/GE youth.

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References

  1. The WHOQOL Group. (1995). The World Health Organization Quality of Life assessment WHOQOL: Position paper from the World Health Organization. Social Science & Medicine,41(10), 1403–1409. https://doi.org/10.1016/0277-9536(95)00112-k.

    Article  Google Scholar 

  2. Skevington, S. M. (2002). Advancing cross-cultural research on quality of life: Observations drawn from the WHOQOL development. World Health Organisation Quality of Life Assessment. Quality of Life Research, 11(2), 135–144.

    Article  PubMed  Google Scholar 

  3. Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA,273(1), 59–65.

    Article  CAS  PubMed  Google Scholar 

  4. Zou, Y., Szczesniak, R., Teeters, A., Conard, L. A. E., & Grossoehme, D. H. (2018). Documenting an epidemic of suffering: Low health-related quality of life among transgender youth. Quality of Life Research,27(8), 2107–2115. https://doi.org/10.1007/s11136-018-1839-y.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Röder, M., Barkmann, C., Richter-Appelt, H., Schulte-Markwort, M., Ravens-Sieberer, U., & Becker, I. (2018). Health-related quality of life in transgender adolescents: Associations with body image and emotional and behavioral problems. International Journal of Transgenderism,19(1), 78–91. https://doi.org/10.1080/15532739.2018.1425649.

    Article  Google Scholar 

  6. de Vries, A. L., McGuire, J. K., Steensma, T. D., Wagenaar, E. C., Doreleijers, T. A., & Cohen-Kettenis, P. T. (2014). Young adult psychological outcome after puberty suppression and gender reassignment. Pediatrics,134(4), 696–704. https://doi.org/10.1542/peds.2013-2958.

    Article  PubMed  Google Scholar 

  7. Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care,37(2), 126–139. https://doi.org/10.1097/00005650-199902000-00003.

    Article  CAS  PubMed  Google Scholar 

  8. Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 generic core scales. Health and Quality of Life Outcomes,5, 43. https://doi.org/10.1186/1477-7525-5-43.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Ravens-Sieberer, U., Herdman, M., Devine, J., Otto, C., Bullinger, M., Rose, M., et al. (2014). The European KIDSCREEN approach to measure quality of life and well-being in children: Development, current application, and future advances. Quality of Life Research,23(3), 791–803. https://doi.org/10.1007/s11136-013-0428-3.

    Article  PubMed  Google Scholar 

  10. Skevington, S. M., Lotfy, M., & O'Connell, K. A. (2004). The World Health Organization's WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research,13(2), 299–310. https://doi.org/10.1023/b:Qure.0000018486.91360.00.

    Article  CAS  PubMed  Google Scholar 

  11. Achenbach, T. M., & Rescorla, L. A. (2003). Manual for the ASEBA school-age forms and profiles. Burlington, VT: University of Vermont Research Center for Children, Youth, & Families.

    Google Scholar 

  12. Coleman, E., Bockting, W., Botzer, M., Cohen-Kettenis, P., DeCuypere, G., Feldman, J., et al. (2012). Standards of care for the health of transsexual, transgender, and gender-nonconforming people, version 7. International Journal of Transgenderism,13(4), 165–232. https://doi.org/10.1080/15532739.2011.700873.

    Article  Google Scholar 

  13. Meyer, I. H. (2003). Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: Conceptual issues and research evidence. Psychological Bulletin,129(5), 674–697. https://doi.org/10.1037/0033-2909.129.5.674.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Reisner, S. L., Greytak, E. A., Parsons, J. T., & Ybarra, M. L. (2015). Gender minority social stress in adolescence: Disparities in adolescent bullying and substance use by gender identity. Journal of Sex Research,52(3), 243–256. https://doi.org/10.1080/00224499.2014.886321.

    Article  PubMed  Google Scholar 

  15. Dhejne, C., Van Vlerken, R., Heylens, G., & Arcelus, J. (2016). Mental health and gender dysphoria: A review of the literature. International Review of Psychiatry,28(1), 44–57. https://doi.org/10.3109/09540261.2015.1115753.

    Article  PubMed  Google Scholar 

  16. Murad, M. H., Elamin, M. B., Garcia, M. Z., Mullan, R. J., Murad, A., Erwin, P. J., et al. (2010). Hormonal therapy and sex reassignment: A systematic review and meta-analysis of quality of life and psychosocial outcomes. Clinical Endocrinology (Oxf),72(2), 214–231. https://doi.org/10.1111/j.1365-2265.2009.03625.x.

    Article  Google Scholar 

  17. White Hughto, J. M., & Reisner, S. L. (2016). A systematic review of the effects of hormone therapy on psychological functioning and quality of life in transgender individuals. Transgender Health,1(1), 21–31. https://doi.org/10.1089/trgh.2015.0008.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Rowniak, S., Bolt, L., & Sharifi, C. (2019). The effect of cross-sex hormones on the quality of life, depression and anxiety of transgender individuals: A quantitative systematic review. JBI Database of Systematic Reviews and Implementation Reports. https://doi.org/10.11124/jbisrir-2017-003869.

    Article  PubMed  Google Scholar 

  19. Gorin-Lazard, A., Baumstarck, K., Boyer, L., Maquigneau, A., Penochet, J. C., Pringuey, D., et al. (2013). Hormonal therapy is associated with better self-esteem, mood, and quality of life in transsexuals. The Journal of Nervous and Mental Disease,201(11), 996–1000. https://doi.org/10.1097/nmd.0000000000000046.

    Article  PubMed  Google Scholar 

  20. Poudrier, G., Nolan, I. T., Cook, T. E., Saia, W., Motosko, C. C., Stranix, J. T., et al. (2019). Assessing quality of life and patient-reported satisfaction with masculinizing top surgery: A mixed-methods descriptive survey study. Plastic and Reconstructive Surgery,143(1), 272–279. https://doi.org/10.1097/prs.0000000000005113.

    Article  CAS  PubMed  Google Scholar 

  21. Papadopulos, N. A., Zavlin, D., Lelle, J. D., Herschbach, P., Henrich, G., Kovacs, L., et al. (2017). Male-to-female sex reassignment surgery using the combined technique leads to increased quality of life in a prospective study. Plastic and Reconstructive Surgery,140(2), 286–294. https://doi.org/10.1097/prs.0000000000003529.

    Article  CAS  PubMed  Google Scholar 

  22. Ozata Yildizhan, B., Yuksel, S., Avayu, M., Noyan, H., & Yildizhan, E. (2018). Effects of gender reassignment on quality of life and mental health in people with gender dysphoria. Turk Psikiyatri Dergisi,29(1), 11–21.

    PubMed  Google Scholar 

  23. Naeimi, S., Akhlaghdoust, M., Chaichian, S., Moradi, Y., Jesmi, F., Zarbati, N., et al. (2019). Quality of Life changes in Iranian patients undergoing female-to-male transsexual surgery: A prospective study. Archives of Iranian Medicine,22, 71–75.

    PubMed  Google Scholar 

  24. Lindqvist, E. K., Sigurjonsson, H., Mollermark, C., Rinder, J., Farnebo, F., & Lundgren, T. K. (2017). Quality of life improves early after gender reassignment surgery in transgender women. European Journal of Plastic Surgery,40(3), 223–226. https://doi.org/10.1007/s00238-016-1252-0.

    Article  PubMed  Google Scholar 

  25. Defreyne, J., Motmans, J., & T'Sjoen, G. (2017). Healthcare costs and quality of life outcomes following gender affirming surgery in trans men: A review. Expert Review of Pharmacoeconomics & Outcomes Research,17(6), 543–556. https://doi.org/10.1080/14737167.2017.1388164.

    Article  Google Scholar 

  26. Barone, M., Cogliandro, A., Di Stefano, N., Tambone, V., & Persichetti, P. (2017). A systematic review of patient-reported outcome measures following transsexual surgery. Aesthetic Plastic Surgery,41(3), 700–713. https://doi.org/10.1007/s00266-017-0812-4.

    Article  CAS  PubMed  Google Scholar 

  27. Ainsworth, T. A., & Spiegel, J. H. (2010). Quality of life of individuals with and without facial feminization surgery or gender reassignment surgery. Quality of Life Research,19(7), 1019–1024. https://doi.org/10.1007/s11136-010-9668-7.

    Article  PubMed  Google Scholar 

  28. Agarwal, C. A., Scheefer, M. F., Wright, L. N., Walzer, N. K., & Rivera, A. (2018). Quality of life improvement after chest wall masculinization in female-to-male transgender patients: A prospective study using the BREAST-Q and Body uneasiness test. Journal of Plastic, Reconstructive & Aesthetic Surgery,71(5), 651–657. https://doi.org/10.1016/j.bjps.2018.01.003.

    Article  Google Scholar 

  29. Anderson, T. J., Saman, D. M., Lipsky, M. S., & Lutfiyya, M. N. (2015). A cross-sectional study on health differences between rural and non-rural U.S. counties using the County Health Rankings. BMC Health Services Research,15(1), 441. https://doi.org/10.1186/s12913-015-1053-3.

    Article  PubMed  PubMed Central  Google Scholar 

  30. O'Bryan, J., Leon, K., Wolf-Gould, C., Scribani, M., Tallman, N., & Gadomski, A. (2018). Building a pediatric patient registry to study health outcomes among transgender and gender expansive youth at a rural gender clinic. Transgender Health,3(1), 179–189. https://doi.org/10.1089/trgh.2018.0023.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Central New York - Otsego County. Retrieved September 3, 2019 from https://www.ny.gov/counties/otsego.

  32. United States Census Bureau (2010). 2010 Census. Retrieved June 10, 2018 from https://factfinder.census.gov.

  33. United States Census Bureau (2016). 2012–2016 American community survey 5-Year estimates. Retrieved May 20, 2018 from https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=bkmk

  34. Landgraf, J., Abetz, L., & Ware, J. E. (1996). The CHQ user’s manual. Boston, MA: The Health Institute, New England Medical Center.

    Google Scholar 

  35. HealthActCHQ (2018). CHQ: Child Health Questionnaire. Retrieved June 10, 2018 from https://www.healthactchq.com/survey/chq.

  36. Ware, J. E., Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care,30(6), 473–483.

    Article  PubMed  Google Scholar 

  37. Ware, J., Kosinski, M., Bjorner, J., Turner-Bowker, D., Gandek, B., & Maruish, M. (2007). Development user's manual for the SF-36v2® Health Survey. Lincoln, RI: Quality Metric Incorporated.

    Google Scholar 

  38. Scoggins, J. F., & Patrick, D. L. (2009). The use of patient-reported outcomes instruments in registered clinical trials: Evidence from ClinicalTrials.gov. Contemporary Clinical Trials,30(4), 289–292. https://doi.org/10.1016/j.cct.2009.02.005.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Otsego County, New York; United States (2018). Retrieved September 3, 2019 from https://www.census.gov/quickfacts/fact/table/otsegocountynewyork,US/PST045218.

  40. Rosenkrantz, D. E., Black, W. W., Abreu, R. L., Aleshire, M. E., & Fallin-Bennett, K. (2017). Health and health care of rural sexual and gender minorities: A systematic review. Stigma and Health,2(3), 229–243. https://doi.org/10.1037/sah0000055.

    Article  Google Scholar 

  41. White Hughto, J. M., Murchison, G. R., Clark, K., Pachankis, J. E., & Reisner, S. L. (2016). Geographic and individual differences in healthcare access for U.S. transgender adults: A multilevel analysis. LGBT Health,3(6), 424–433. https://doi.org/10.1089/lgbt.2016.0044.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics,42(2), 377–381. https://doi.org/10.1016/j.jbi.2008.08.010.

    Article  PubMed  Google Scholar 

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Acknowledgements

The authors wish to thank Renate Reeves-Ellington for her generous support of research at the GWC. The authors wish to acknowledge the contributions of the following individuals in the establishment of the GWC Pediatric Patient Registry: Diane Georgeson, MD, Justine Woolner Wise, LMSW, Patti Noon, LMSW, Sierra Meads, RN, and Susan Turell, PhD. The GWC Pediatric Patient Registry database was built in REDCap (Research Electronic Data Capture). The use of REDCap in this publication is supported by the National Institutes of Health/National Center for Research Resources (NIH/NCRR) Colorado CTSI Grant Number UL1RR025780 [42]. Its contents are the authors’ sole responsibility and do not necessarily represent official NIH views.

Funding

This research was supported by a grant from the Robert Wood Johnson Foundation (RWJF) Clinical Scholars Program.

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Correspondence to Jane O’Bryan.

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Study procedures were approved by the Mary Imogene Bassett Hospital Institutional Review Board. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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O’Bryan, J., Scribani, M., Leon, K. et al. Health-related quality of life among transgender and gender expansive youth at a rural gender wellness clinic. Qual Life Res 29, 1597–1607 (2020). https://doi.org/10.1007/s11136-020-02430-8

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