Academic Journal
Patient perspectives on sexual orientation and gender identity data collection in cancer care settings.
| Τίτλος: | Patient perspectives on sexual orientation and gender identity data collection in cancer care settings. |
|---|---|
| Συγγραφείς: | Anderson N; Division of Public Health Sciences, Fred Hutchinson Cancer Center, Seattle, WA, USA., Heffner JL; Division of Public Health Sciences, Fred Hutchinson Cancer Center, Seattle, WA, USA., Giustini N; Division of Hematology and Oncology, Department of Medicine, University of Washington, Seattle, WA, USA.; Clinical Research Division, Fred Hutchinson Cancer Center, Seattle, WA, USA., Go T; Office of Patient Experience, Fred Hutchinson Cancer Center, Seattle, WA, USA., Scout NFN; The Cancer Network, Providence, RI, USA., Hippe DS; Clinical Research Division, Fred Hutchinson Cancer Center, Seattle, WA, USA., Walsh C; Division of Public Health Sciences, Fred Hutchinson Cancer Center, Seattle, WA, USA., Triplette M; Division of Public Health Sciences, Fred Hutchinson Cancer Center, Seattle, WA, USA. mtriplet@fredhutch.org.; Division of Pulmonary, Critical Care and Sleep Medicine, Department of Medicine, University of Washington, Seattle, WA, USA. mtriplet@fredhutch.org. |
| Πηγή: | Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer [Support Care Cancer] 2026 Jul 29; Vol. 34 (8). Date of Electronic Publication: 2026 Jul 29. |
| Τύπος έκδοσης: | Journal Article |
| Γλώσσα: | English |
| Στοιχεία περιοδικού: | Publisher: Springer International Country of Publication: Germany NLM ID: 9302957 Publication Model: Electronic Cited Medium: Internet ISSN: 1433-7339 (Electronic) Linking ISSN: 09414355 NLM ISO Abbreviation: Support Care Cancer Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: Berlin : Springer International, c1993- |
| Ιατρικοί όροι (MeSH): | Sexual and Gender Minorities*/psychology , Sexual and Gender Minorities*/statistics & numerical data , Neoplasms*/psychology , Neoplasms*/therapy , Data Collection*/methods , Sexual Behavior*/psychology , Gender Identity*, Humans ; Female ; Middle Aged ; Male ; Surveys and Questionnaires ; Aged ; Adult ; Patient-Centered Care ; Pilot Projects |
| Περίληψη: | Purpose: Sexual orientation and gender identity (SOGI) data collection is considered an essential component of patient-centered cancer care. The objective of this study was to understand attitudes toward and understanding of SOGI data collection among patients receiving care at a comprehensive cancer center. Methods: Surveys assessing attitudes toward SOGI data collection and acceptability of the collection methods were sent to 250 patients 2 months after participating in a pilot trial of SOGI data collection from September through December 2023. We also conducted a comparison of the acceptability of two standardized approaches to SOGI demographic questions. We purposively oversampled sexual and gender minority (SGM) patients to compare survey responses between respondents who did and did not identify as lesbian, gay, bisexual, transgender, and/or queer/questioning (LGBTQ +). Results: Of 91 survey respondents (response rate 36%), average age was 58 years, the majority were assigned female at birth (69%) and white (71%), and 24% identified as LGBTQ + . Overall, participants reported high levels of agreement on SOGI data collection importance and acceptability. Survey responses suggested LGBTQ + participants considered SOGI data collection more important to collect and more comfortable to answer than participants who did not identify as LGBTQ + . For both groups, results suggest more limited response choices may be more understandable and acceptable than more extensive response choices. Conclusion: There were generally positive attitudes toward SOGI data collection among patients undergoing cancer-related care, with greater acceptability among those who identified as LGBTQ + . Further efforts in patient education and refinement of acceptable SOGI questions may be necessary to improve universal understanding and acceptability. (© 2026. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.) |
| Competing Interests: | Declarations. Ethics approval and consent to participate: This work was approved by the Fred Hutchinson Institutional Review Board. Participants provided verbal consent at the time of participation. Research was conducted in accordance with the Declaration of Helsinki. Competing interests: The authors declare no competing interests. |
| References: | Quinn GP, Sanchez JA, Sutton SK et al (2015) Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin 65(384–400):20150717. https://doi.org/10.3322/caac.21288. (PMID: 10.3322/caac.21288) Wheldon CW, Kaufman AR, Kasza KA, Moser RP (2018) Tobacco use among adults by sexual orientation: findings from the population assessment of tobacco and health study. LGBT health. 5(1):33–44. https://doi.org/10.1089/lgbt.2017.0175. (PMID: 10.1089/lgbt.2017.0175293241775802250) Massetti GM, Ragan KR, Thomas CC et al (2016) Public health opportunities for promoting health equity in cancer prevention and control in LGBT populations. LGBT Health 3(11–14):20151020. https://doi.org/10.1089/lgbt.2015.0109. (PMID: 10.1089/lgbt.2015.0109) Griggs J, Maingi S, Blinder V et al (2017) American Society of Clinical Oncology position statement: strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol 35(2203–2208):20170403. https://doi.org/10.1200/JCO.2016.72.0441. (PMID: 10.1200/JCO.2016.72.0441) Weideman BCD, McAlpine D (2024) State LGBTQ policy environments and the cancer burden in sexual and gender minoritized communities in the United States. Cancer Med 13:e70097. https://doi.org/10.1002/cam4.70097. (PMID: 10.1002/cam4.700973914034511322825) Cathcart-Rake EJ, Jatoi A, Dressler EV et al (2024) Sexual orientation and gender identity data collection in cancer care: a nationwide landscape assessment update. JCO Oncol Pract 20(1272–1279):20240520. https://doi.org/10.1200/OP.23.00724. (PMID: 10.1200/OP.23.00724) Schmidt S, Fazio T, D’Souza AN et al (2025) Capturing sexual orientation and gender identity information in electronic medical records to inform the person-centred care of sexual and gender minority people. BMC Public Health 25:1015. https://doi.org/10.1186/s12889-025-22190-9. (PMID: 10.1186/s12889-025-22190-94008975311909864) Triplette M, Giustini N, Anderson N et al (2025) A multistakeholder qualitative study to inform sexual orientation and gender identity data collection in the cancer care setting. LGBT Health 12(220–230):20240819. https://doi.org/10.1089/lgbt.2024.0065. (PMID: 10.1089/lgbt.2024.0065) Nguyen A, Lau BD (2018) Collecting sexual orientation and gender identity information: filling the gaps in sexual and gender minority health. Med Care 56:205–207. https://doi.org/10.1097/MLR.0000000000000856. (PMID: 10.1097/MLR.000000000000085629271823) Rosser BS, Polter EJ, Chandiramani N, Cahill S, Wheldon CW, Konety BR, Ryan CJ, Haggart R, Kapoor A (2021Sep 1) Acceptability and feasibility of collecting sexual orientation and expanded gender identity data in urology and oncology clinics. LGBT health. 8(6):420–6. https://doi.org/10.1089/lgbt.2020.0256. (PMID: 10.1089/lgbt.2020.0256343480458591059) Cahill S, Grasso C, King D, Mayer K, Baker K, Makadon H (2014) Do ask, do tell: high levels of acceptability by patients of routine collection of sexual orientation and gender identity data in four diverse American community health centers. PLoS ONE. https://doi.org/10.1371/journal.pone.0107104. (PMID: 10.1371/journal.pone.0107104253906924229119) Becker T, Chin M, Bates N (eds) (2022) Measuring sex, gender identity, and sexual orientation. National Academies of Sciences, Engineering and Medicine, Washington (DC). Washington State Legislature. WAC 246–455–025, Available from: https://app.leg.wa.gov/wac/default.aspx?cite=246-455-025 (2022) [Last Accessed October 16, 2025]. Heffner JL, Giustini N, Anderson N et al (2025) Implementation of sexual orientation and gender identity data collection in a cancer care setting. J Natl Cancer Inst Monogr. https://doi.org/10.1093/jncimonographs/lgaf004. (PMID: 10.1093/jncimonographs/lgaf0044067154712268165) Permanent Rules, Washington Department of Health. WSR 22–13–187 Available from: https://lawfilesext.leg.wa.gov/law/wsr/2022/13/22-13-187.htm . (2022). [Last accessed October 16, 2025]. Weiner BJ, Lewis CC, Stanick C et al (2017) Psychometric assessment of three newly developed implementation outcome measures. Implement Sci 12(108):20170829. https://doi.org/10.1186/s13012-017-0635-3. (PMID: 10.1186/s13012-017-0635-3) Parker RM, Baker DW, Williams MV et al (1995) The test of functional health literacy in adults: a new instrument for measuring patients’ literacy skills. J Gen Intern Med 10:537–541. https://doi.org/10.1007/BF02640361. (PMID: 10.1007/BF026403618576769) Lewinski AA, Crowley MJ, Miller C et al (2021) Applied rapid qualitative analysis to develop a contextually appropriate intervention and increase the likelihood of uptake. Med Care 59(Suppl 3):S242–S251. https://doi.org/10.1097/MLR.0000000000001553. (PMID: 10.1097/MLR.0000000000001553339760738132894) Averill JB (2002) Matrix analysis as a complementary analytic strategy in qualitative inquiry. Qual Health Res 12(6):855–866. https://doi.org/10.1177/104973230201200611. (PMID: 10.1177/10497323020120061112109729) Schabath MB, Curci MB, Kanetsky PA et al (2017) Ask and tell: the importance of the collection of sexual orientation and gender identity data to improve the quality of cancer care for sexual and gender minorities. J Oncol Pract 13(542–546):20170718. https://doi.org/10.1200/JOP.2017.024281. (PMID: 10.1200/JOP.2017.024281) Washington A, Toman L, Fakih A et al (2025) Community members’ perspectives on sexual orientation and gender identity data collection in health-care settings. J Natl Cancer Inst Monogr 2025(69):88–95. https://doi.org/10.1093/jncimonographs/lgaf027. (PMID: 10.1093/jncimonographs/lgaf02740671539) Guan A, Duffy C, Loya Z et al (2025) Perspectives on sexual orientation and gender identity data collection from healthcare system staff and leadership: case study in an academic hospital setting. J Natl Cancer Inst Monogr 2025(69):111–116. https://doi.org/10.1093/jncimonographs/lgaf014. (PMID: 10.1093/jncimonographs/lgaf0144067154412268158) |
| Contributed Indexing: | Keywords: Cancer; Electronic health record; LGBTQ +; Sexual and gender minority |
| Entry Date(s): | Date Created: 20260728 Date Completed: 20260729 Latest Revision: 20260729 |
| Update Code: | 20260730 |
| DOI: | 10.1007/s00520-026-10968-5 |
| PMID: | 42521861 |
| Βάση Δεδομένων: | MEDLINE |
καταχωρήστε σχόλιο πρώτοι!