ArticleCancer causes & control : CCC2024
Challenges in collecting information on sexual orientation and gender identity for cancer patients: perspectives of hospital and central cancer registry abstractors.
Article in Cancer causes & control : CCC, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Collecting sexual orientation and gender identity data in cancer centers.Journal of the National Cancer Institute. Monographs · 2025Article
- Patient Perspectives on Impact of Weight and Weight Stigma on Breast and Cervical Cancer Treatment: A Qualitative Study.Cancer medicine · 2025Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
purposeSexual and gender minority (SGM) populations experience cancer treatment and survival disparities; however, inconsistent sexual orientation and gender identity (SOGI) data collection within clinical settings and the cancer surveillance system precludes population-based research toward health equity for this population. This qualitative study examined how hospital and central registry abstractors receive and interact with SOGI information and the challenges that they face in doing so.
methodsWe conducted semi-structured interviews with 18 abstractors at five Surveillance, Epidemiology, and End Results (SEER) registries, as well as seven abstractors from commission on cancer (CoC)-accredited hospital programs in Iowa. Interviews were transcribed, cleaned, and coded using a combination of a priori and emergent codes. These codes were then used to conduct a descriptive analysis and to identify domains across the interviews.
resultsInterviews revealed that abstractors had difficulty locating SOGI information in the medical record: this information was largely never recorded, and when included, was inconsistently/not uniformly located in the medical record. On occasion, abstractors reported situational recording of SOGI information when relevant to the patient's cancer diagnosis. Abstractors further noticed that, where reported, the source of SOGI information (i.e., patient, physician) is largely unknown.
conclusionEfforts are needed to ensure standardized implementation of the collection of SOGI variables within the clinical setting, such that this information can be collected by the central cancer registry system to support population-based equity research addressing LGBTQ + disparities.
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