Challenges in collecting information on sexual orientation and gender identity for cancer patients: perspectives of hospital and central cancer registry abstractors.

PURPOSE: Sexual 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. METHODS: We 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. RESULTS: Interviews 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. CONCLUSION: Efforts 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.

Patterns of Care and Outcomes of Rectal Cancer Patients from the Iowa Cancer Registry: Role of Hospital Volume and Tumor Location.

BACKGROUND: Centralization of rectal cancer surgery has been associated with high-quality oncologic care. However, several patient, disease and system-related factors can impact where patients receive care. We hypothesized that patients with low rectal tumors would undergo treatment at high-volume centers and would be more likely to receive guideline-based multidisciplinary treatment. METHODS: Adults who underwent proctectomy for stage II/III rectal cancer were included from the Iowa Cancer Registry and supplemented with tumor location data. Multinomial logistic regression was employed to analyze factors associated with receiving care in high-volume hospital, while logistic regression for those associated with ≥ 12 lymph node yield, pre-operative chemoradiation and sphincter-preserving surgery. RESULTS: Of 414 patients, 38%, 39%, and 22% had low, mid, and high rectal cancers, respectively. Thirty-two percent were > 65 years, 38% female, and 68% had stage III tumors. Older age and rural residence, but not tumor location, were associated with surgical treatment in low-volume hospitals. Higher tumor location, high-volume, and NCI-designated hospitals had higher nodal yield (≥ 12). Hospital-volume was not associated with neoadjuvant chemoradiation rates or circumferential resection margin status. Sphincter-sparing surgery was independently associated with high tumor location, female sex, and stage III cancer, but not hospital volume. CONCLUSIONS: Low tumor location was not associated with care in high-volume hospitals. High-volume and NCI-designated hospitals had higher nodal yields, but not significantly higher neoadjuvant chemoradiation, negative circumferential margin, or sphincter preservation rates. Therefore, providing educational/quality improvement support in lower volume centers may be more pragmatic than attempting to centralize rectal cancer care among high-volume centers.