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Incidence, complications, and long-term outcomes of gender-affirming phalloplasty: analysis of a large statewide population-based dataset

Zhang, Tenny R; Harel, Daphna; Rivera, Adrian; Shahnawaz, Samia; Qian, Yingzhi; Berry, Carolyn; Zhao, Lee C; Radix, Asa; Bluebond-Langner, Rachel; Mmonu, Nnenaya A
OBJECTIVE:To evaluate the incidence of gender-affirming phalloplasty and complications in a large population-based dataset. METHODS:Retrospective cohort study was done using the California Department of Health Care Access and Information datasets which include patient-level data from all licensed hospitals, emergency departments, and ambulatory surgery facilities in California. Adult patients 18 years or older undergoing gender-affirming phalloplasty in California from January 1, 2009 to December 31, 2019 were included. We examined phalloplasty-related complications using International Classification of Disease diagnosis and procedure codes and Current Procedural Terminology codes. Unique record linkage number identifiers were used to follow patients longitudinally. Statistical analysis included Kaplan-Meier survival analysis and Cox proportional hazards analysis. RESULTS:We identified 766 patients who underwent gender-affirming phalloplasty in 23 facilities. Of 475 patients with record linkage numbers, 253 (55.3%) had subsequent re-presentations to the inpatient, emergency department, and ambulatory surgery settings related to phalloplasty complications. Survival analysis indicated that 50% of patients re-presented by 1 year post-phalloplasty. Asian/Pacific Islander patients had lower risk of complications, and California residents had higher risk of complications. CONCLUSIONS:This population-based study confirms that gender-affirming phalloplasty has a high complication rate, and demonstrates for the first time an association with high rates of return to hospitals, emergency departments, and ambulatory centers. These findings provide additional higher-level evidence that may aid patient counseling, shared surgical decision making, and institutional and government policy.
PMID: 38340965
ISSN: 1527-9995
CID: 5635512

AUTHOR REPLY TO COMMENTARY ON "INCIDENCE AND LONG-TERM OUTCOMES OF GENDER-AFFIRMING PHALLOPLASTY: ANALYSIS OF A LARGE STATEWIDE POPULATION-BASED DATASET" [Letter]

Zhang, Tenny R; Harel, Daphna; Rivera, Adrian; Shahnawaz, Samia; Qian, Yingzhi; Berry, Carolyn; Zhao, Lee C; Radix, Asa; Bluebond-Langner, Rachel; Mmonu, Nnenaya A
PMID: 38336134
ISSN: 1527-9995
CID: 5632062

Utilization and Staff Perspectives on an On-Demand Telemedicine Model for People with Intellectual and Developmental Disabilities Who Reside in Certified Group Residences

Berry, Carolyn A.; Kwok, Lorraine; Gofine, Miriam; Kaufman, Matthew; Williams, Debra A.; Terlizzi, Kelly; Alvaro, Mike; Neighbors, Charles J.
Background: Non-emergent medical problems that arise when a usual provider is unavailable can often result in emergency department or urgent care visits, which can be particularly distressing to people with intellectual and developmental disabilities (PIDD). On-demand, synchronous telemedicine may be a promising supplement when immediate care from usual sources is unavailable. Prior research demonstrated that high-quality telemedicine can be effectively delivered to PIDD. The aim of this article is to describe the utilization and staff perspectives on the implementation of the Telemedicine Triage Project (TTP), an innovative model that provides telemedicine consultations for PIDD who reside in state-certified group residences and present with an urgent but non-emergent medical concern when their usual provider is unavailable. Methods: Call frequency data for calendar years 2020 and 2021 were reviewed. The study team conducted semi-structured interviews, with 19 key informants representing organizational- and agency-level leadership and staff. The interview data were analyzed using a protocol-driven, rapid qualitative methodology. Results: Telemedicine consultations increased from 7953 in 2020 to 15,011 calls in 2021, and call volume peaked between 10 am and 1 pm. Key informants reported high satisfaction with TTP; universal benefits and a few barriers to implementation; and strong interest in maintaining the program beyond the grant period. Discussion: Over the first 2 years of its implementation, the TTP program was widely utilized and proved extremely feasible and acceptable to staff. This model is a promising and highly feasible way to provide equitable access to telemedicine for PIDD by addressing barriers to and disparities in access to health care that affect PIDD.
SCOPUS:85167673677
ISSN: 2692-4366
CID: 5567992

Comparison of Care Provided to Underserved Patients With Diabetes by a Telementoring Model of Care to Care Provided by a Specialty Clinic: Endo ECHO Versus an Academic Specialty Clinic

Berry, Carolyn A; Dávila Saad, Andrea; Blecker, Saul; Billings, John; Bouchonville, Matthew F; Arora, Sanjeev; Paul, Margaret M
PURPOSE:The purpose of the study was to examine differences among adult patients with diabetes who receive care through a telementoring model versus care at an academic specialty clinic on guideline-recommended diabetes care and self-management behaviors. METHODS:Endocrinology-focused Extension for Community Healthcare Outcomes (ECHO Endo) patients completed surveys assessing demographics, access to care, health care quality, and self-management behaviors at enrollment and 1 year after program enrollment. Diabetes Comprehensive Care Center (DCCC) patients completed surveys at comparable time points. RESULTS:At baseline, ECHO patients were less likely than DCCC patients to identify English as their primary language, have postsecondary education, and private insurance. One year postenrollment, ECHO patients visited their usual source of diabetic care more frequently. There were no differences in A1C testing or feet checking by health care professionals, but ECHO patients were less likely to report eye exams and smoking status assessment. ECHO and DCCC patients did not differ in consumption of high-fat foods and soda, physical activity, or home feet checks. ECHO patients were less likely to space carbohydrates evenly and test glucose levels and more likely to have smoked cigarettes. CONCLUSIONS:Endo ECHO is a suitable alternative to specialty care for patients in underserved communities with restricted access to specialty care. Results support the value of the Project ECHO telementoring model in addressing barriers to high-quality care for underserved communities.
PMID: 37129282
ISSN: 2635-0114
CID: 5502952

A short form of the Crisis in Family Systems (CRISYS) in a racially diverse sample of pregnant women

Sherlock, Phillip; Shalowitz, Madeleine U; Berry, Carolyn; Cella, David; Blackwell, Courtney K; Cowell, Whitney; Rodriguez, Karen M Reyes; Wright, Rosalind J
UNLABELLED:Assessing stressful life events in large-scale epidemiologic studies is challenged by the need to measure potential stressful events in a reasonably comprehensible manner balanced with burden on participants and research staff. The aim of this paper was to create a short form of the Crisis in Family Systems-Revised (CRISYS-R) plus 17 acculturation items, a measure that captures contemporary life stressors across 11 domains. Latent class analysis (LCA) was used to segment the sample of 884 women from the PRogramming of Intergenerational Stress Mechanisms (PRISM) study experiencing different patterns of exposure to stressful events and identify items from each domain that best discriminate between individuals with different patterns of stressful-event exposures (high vs. low stress exposure). The results from the LCA, in conjunction with the expert opinions provided by the original developers of the CRISYS, yielded a 24-item item short form (CRISYS-SF) with at least one question from each of the original domains. Scores on the 24-item CRISYS-SF had high correlations with scores on the 80-item CRISYS. SUPPLEMENTARY INFORMATION/UNASSIGNED:The online version contains supplementary material available at 10.1007/s12144-021-02335-w.
PMCID:10182108
PMID: 37187827
ISSN: 1046-1310
CID: 5544172

Organizational Factors Associated with Guideline Concordance of Chronic Disease Care and Management Practices

Cohen, Deborah J; Wyte-Lake, Tamar; Bonsu, Pamela; Albert, Stephanie L; Kwok, Lorraine; Paul, Margaret M; Nguyen, Ann M; Berry, Carolyn A; Shelley, Donna R
BACKGROUND:Guidelines for managing and preventing chronic disease tend to be well-known. Yet, translation of this evidence into practice is inconsistent. We identify a combination of factors that are connected to guideline concordant delivery of evidence-informed chronic disease care in primary care. METHODS:Cross-sectional observational study; purposively selected 22 practices to vary on size, ownership and geographic location, using National Quality Forum metrics to ensure practices had a ≥ 70% quality level for at least 2 of the following: aspirin use in high-risk individuals, blood pressure control, cholesterol and diabetes management. Interviewed 2 professionals (eg, medical director, practice manager) per practice (n = 44) to understand staffing and clinical operations. Analyzed data using an iterative and inductive approach. RESULTS:Community Health Centers (CHCs) employed interdisciplinary clinical teams that included a variety of professionals as compared with hospital-health systems (HHS) and clinician-owned practices. Despite this difference, practice members consistently reported a number of functions that may be connected to clinical chronic care quality, including: having engaged leadership; a culture of teamwork; engaging in team-based care; using data to inform quality improvement; empaneling patients; and managing the care of patient panels, with a focus on continuity and comprehensiveness, as well as having a commitment to the community. CONCLUSIONS:There are mutable organizational attributes connected-guideline concordant chronic disease care in primary care. Research and policy reform are needed to promote and study how to achieve widespread adoption of these functions and organizational attributes that may be central to achieving equity and improving chronic disease prevention.
PMID: 36564193
ISSN: 1558-7118
CID: 5414782

Social needs screening and referral in pediatric primary care clinics: a multiple case study

Massar, Rachel E; Berry, Carolyn A; Paul, Margaret M
BACKGROUND:Unmet social risks such as housing, food insecurity and safety concerns are associated with adverse health outcomes in adults and children. Experimentation with social needs screening in primary care is currently underway throughout the United States. Pediatric primary care practices are well-positioned to amplify the effects of social needs screening and referral programs because all members of the household have the potential to benefit from connection to needed social services; however, more research is needed to determine effective implementation strategies. METHODS:To describe common implementation barriers and facilitators, we conducted 48 in-depth qualitative interviews with leadership, providers and staff between November 2018 and June 2019 as part of a multiple case study of social needs screening and referral programs based out of four pediatric ambulatory care clinics in New York City. Interviews were recorded, transcribed and coded using a protocol-driven, template-based rapid analysis approach designed for pragmatic health services research. In addition to analyzing content for our study, we delivered timely findings to each site individually in order to facilitate quality improvement changes in close-to-real time. RESULTS:Effective implementation strategies included tailoring screening tools to meet the needs of families seen at the clinic and reflect the resources available in the community, hiring dedicated staff to manage the program, building strong and lasting partnerships with community-based organizations, establishing shared communication methods between partners, and utilizing technology for efficient tracking of screening data. Respondents were enthusiastic about the value of their programs and the impact on families, but remained concerned about long-term sustainability after the grant period. CONCLUSION/CONCLUSIONS:Implementation of social needs screening and referral interventions is dependent on contextual factors including the nature of family needs and the availability of intraorganizational and community resources to address those needs. Additional research is needed to prospectively test promising implementation strategies that were found to be effective across sites in this study. Sustainability of programs is challenging, and future research should also explore measurable outcomes and payment structures to support such interventions in pediatric settings, as well as aim to better understand caregiver perspectives to improve engagement.
PMCID:9673422
PMID: 36397075
ISSN: 1472-6963
CID: 5371682

An Unconditional Cash Transfer Program for Low-Income New Yorkers Affected by COVID-19

Kumar, Samantha Lily; Calvo-Friedman, Alessandra; Freeman, Amy L; Fazio, Daniela; Johnson, Amanda K; Seiferth, Fionnuala; Clapp, Jenifer; Davis, Nichola J; Schretzman, Maryanne; Springer, Bethany; Arcilla, Harmony N; Kaplan, Sue A; Berry, Carolyn A; Doran, Kelly M
Early in the pandemic, New York City's public hospital system partnered with multiple philanthropic foundations to offer an unconditional cash transfer program for low-income New Yorkers affected by COVID-19. The $1000 cash transfers were designed to help people meet their most immediate health and social needs and were incorporated into healthcare delivery and contact tracing workflows as a response to the public health emergency. To better understand program recipients' experiences, researchers conducted 150 telephone surveys with randomly sampled cash transfer recipients and 20 in-depth qualitative interviews with purposefully sampled survey participants. Survey participants were predominantly Latinx (87%) and women (65%). The most common reported uses of the $1000 were food and rent. Most participants (79%) reported that without the $1000 cash transfer they would have had difficulty paying for basic expenses or making ends meet, with specific positive effects reported related to food, housing, and ability to work. The majority of survey participants reported that receiving the cash assistance somewhat or greatly improved their physical health (83%) and mental health (89%). Qualitative interview results generally supported the survey findings.
PMCID:9555690
PMID: 36224486
ISSN: 1468-2869
CID: 5341042

Patients' Perspectives on the Shift to Telemedicine in Primary and Behavioral Health Care during the COVID-19 Pandemic

Berry, Carolyn A; Kwok, Lorraine; Massar, Rachel; Chang, Ji Eun; Lindenfeld, Zoe; Shelley, Donna R; Albert, Stephanie L
BACKGROUND:Studies specifically focused on patients' perspectives on telemedicine visits in primary and behavioral health care are fairly limited and have often focused on highly selected populations or used overall satisfaction surveys. OBJECTIVE:To examine patient perspectives on the shift to telemedicine, the remote delivery of health care via the use of electronic information and communications technology, in primary and behavioral health care in Federally Qualified Health Centers (FQHCs) during COVID-19. DESIGN/METHODS:Semi-structured interviews were conducted using video conference with patients and caregivers between October and December 2020. PARTICIPANTS/METHODS:Providers from 6 FQHCs nominated participants. Eighteen patients and caregivers were interviewed: 6 patients with only primary care visits; 5 with only behavioral health visits; 3 with both primary care and behavioral health visits; and 4 caregivers of children with pediatric visits. APPROACH/METHODS:Using a protocol-driven, rapid qualitative methodology, we analyzed the interview data and assessed the quality of care, benefits and challenges of telemedicine, and use of telemedicine post-pandemic. KEY RESULTS/RESULTS:Respondents broadly supported the option of home-based synchronous telemedicine visits in primary and behavioral health care. Nearly all respondents appreciated remote visits, largely because such visits provided a safe option during the pandemic. Patients were generally satisfied with telemedicine and believed the quality of visits to be similar to in-person visits, especially when delivered by a provider with whom they had established rapport. Although most respondents planned to return to mostly in-person visits when considered safe to do so, they remained supportive of the continued option for remote visits as remote care addresses some of the typical barriers faced by low-income patients. CONCLUSIONS:Addressing digital literacy challenges, enhancing remote visit privacy, and improving practice workflows will help ensure equitable access to all patients as we move to a new post-COVID-19 "normal" marked by increased reliance on telemedicine and technology.
PMCID:9514672
PMID: 36167954
ISSN: 1525-1497
CID: 5334242

Synchronous Home-Based Telemedicine for Primary Care: A Review

Lindenfeld, Zoe; Berry, Carolyn; Albert, Stephanie; Massar, Rachel; Shelley, Donna; Kwok, Lorraine; Fennelly, Kayla; Chang, Ji Eun
Synchronous home-based telemedicine for primary care experienced growth during the coronavirus disease 2019 pandemic. A review was conducted on the evidence reporting on the feasibility of synchronous telemedicine implementation within primary care, barriers and facilitators to implementation and use, patient characteristics associated with use or nonuse, and quality and cost/revenue-related outcomes. Initial database searches yielded 1,527 articles, of which 22 studies fulfilled the inclusion criteria. Synchronous telemedicine was considered appropriate for visits not requiring a physical examination. Benefits included decreased travel and wait times, and improved access to care. For certain services, visit quality was comparable to in-person care, and patient and provider satisfaction was high. Facilitators included proper technology, training, and reimbursement policies that created payment parity between telemedicine and in-person care. Barriers included technological issues, such as low technical literacy and poor internet connectivity among certain patient populations, and communication barriers for patients requiring translators or additional resources to communicate.
PMID: 35510736
ISSN: 1552-6801
CID: 5216312