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Patient-centered outcomes on preparing for and undergoing gender-affirming phalloplasty: a qualitative, descriptive study

Mmonu, Nnenaya; Radix, Asa; Castle, Elijah; Zhao, Lee; Bluebond-Langner, Rachel; Ospina-Norvell, Clarissa; Harel, Daphna; Fendrick, Mark; Zhang, Tenny R; Berry, Carolyn A
OBJECTIVE:Despite increasing incidence of genital gender-affirming surgery (GGAS), there is no systematic method of evaluating patient perspectives. The objective of this study is to elucidate transgender and non-binary patient perspectives on gender-affirming phalloplasty/metoidioplasty via structured focus groups and determine convergent themes as the first step towards the development of a GGAS patient-reported outcome measure. DESIGN/METHODS:We conducted a systematic qualitative study using a thematic content analysis of four focus groups from April 2021 to April 2022 comprising 8 patients undergoing phalloplasty/metoidioplasty and 10 patients post-phalloplasty/metoidioplasty. Focus groups were hosted virtually and recorded and transcribed. Discussions were guided by participant input and focused on goals, experiences, outcomes, satisfaction, and quality of life. SETTING/METHODS:This volunteer but purposive sample of patients was recruited directly in clinic, via email, and via social media at NYU Langone Health (primary site), Callen-Lorde Community Health Center (New York, New York, USA) and the San Francisco Community Health Center. PARTICIPANTS/METHODS:We conducted focus groups with 18 patients before/after undergoing gender-affirming phalloplasty/metoidioplasty. PRIMARY AND SECONDARY OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Transcripts were uploaded into ATLAS.ti, a qualitative data analysis software that facilitates coding for thematic content analysis. We performed deductive and inductive coding to identify the themes that were clustered into overarching domains. RESULTS:The mean duration of focus groups was 81.5 min. Seven themes and 19 subthemes were constructed. The major themes were (1) goals, expectations, and priorities before/after surgery; (2) sexual function; (3) urinary function; (4) peer support; (5) decision-making; (6) mental health and quality of life; and (7) gender dysphoria. Of the major themes, those determined before the study included themes 1-3 and 6-7. Limitations include small sample size and bias in patient selection. CONCLUSIONS:We conducted focus groups with 18 patients before/after undergoing gender-affirming phalloplasty/metoidioplasty. Mental health, quality of life, functional, and aesthetic outcomes are all critical to patients. Phalloplasty/metoidioplasty impact numerous aspects of patients' lives. Experiential components of the surgical process, mental health, and quality of life are important metrics to consider in addition to functional and aesthetic outcomes.
PMCID:11934403
PMID: 40122562
ISSN: 2044-6055
CID: 5814592

Identifying important and feasible primary care structures and processes in the US healthcare system: a modified Delphi study

Albert, Stephanie L; Kwok, Lorraine; Shelley, Donna R; Paul, Maggie M; Blecker, Saul B; Nguyen, Ann M; Harel, Daphna; Cleland, Charles M; Weiner, Bryan J; Cohen, Deborah J; Damschroder, Laura; Berry, Carolyn A
OBJECTIVE:To identify primary care structures and processes that have the highest and lowest impact on chronic disease management and screening and prevention outcomes as well as to assess the feasibility of implementing these structures and processes into practice. DESIGN/METHODS:A two-round Delphi study was conducted to establish consensus on the impact and feasibility of 258 primary care structures and processes. PARTICIPANTS/METHODS:29 primary care providers, health system leaders and health services researchers in the USA. OUTCOMES/RESULTS:Primary outcomes were (1) consensus on the impact of each structure and process on chronic disease management and screening and prevention outcomes, separately and (2) consensus on feasibility of implementation by primary care practices. RESULTS:Consensus on high impact and feasibility of implementation was reached on four items for chronic disease management: 'Providers use motivational interviewing to help patients set goals', 'Practice has designated staff to manage patient panel', 'Practice has onsite providers or staff that speak the most dominant, non-English language spoken by patients' and 'Practice includes mental health providers and/or behavioural health specialists in care team' and seven items for screening and prevention: 'Practice utilizes standing protocols and orders', 'Practice generates reports to alert clinicians to missed targets and to identify gaps in care, such as overdue visits, needed vaccinations, screenings or other preventive services', 'Practice has designated staff to manage patient panel', 'Practice sets performance goals and uses benchmarking to track quality of care', 'Practice uses performance feedback to identify practice-specific areas of improvement', 'Practice builds quality improvement activities into practice operations' and 'Pre-visit planning data are reviewed during daily huddles'. Only 'Practice has designated staff to manage patient panel' appeared on both lists. CONCLUSION/CONCLUSIONS:Findings suggest that practices need to focus on implementing mostly distinct, rather than common, structures and processes to optimise chronic disease and preventive care.
PMCID:11552005
PMID: 39521461
ISSN: 2044-6055
CID: 5752382

Toward a Consensus on Strategies to Support Opioid Use Disorder Care Transitions Following Hospitalization: A Modified Delphi Process

Krawczyk, Noa; Miller, Megan; Englander, Honora; Rivera, Bianca D; Schatz, Daniel; Chang, Ji; Cerdá, Magdalena; Berry, Carolyn; McNeely, Jennifer
BACKGROUND:Despite proliferation of acute-care interventions to initiate medications for opioid use disorder (MOUD), significant challenges remain to supporting care continuity following discharge. Research is needed to inform effective hospital strategies to support patient transitions to ongoing MOUD in the community. OBJECTIVE:To inform a taxonomy of care transition strategies to support MOUD continuity from hospital to community-based settings and assess their perceived impact and feasibility among experts in the field. DESIGN/METHODS:A modified Delphi consensus process through three rounds of electronic surveys. PARTICIPANTS/METHODS:Experts in hospital-based opioid use disorder (OUD) treatment, care transitions, and hospital-based addiction treatment. MAIN MEASURES/METHODS:Delphi participants rated the impact and feasibility of 14 OUD care transition strategies derived from a review of the scientific literature on a scale from 1 to 9 over three survey rounds. Panelists were invited to suggest additional care transition strategies. Agreement level was calculated based on proportion of ratings within three points of the median. KEY RESULTS/RESULTS:Forty-five of 71 invited panelists participated in the survey. Agreement on impact was strong for 12 items and moderate for 10. Agreement on feasibility was strong for 11 items, moderate for 7, and poor for 4. Strategies with highest ratings on impact and feasibility included initiation of MOUD in-hospital and provision of buprenorphine prescriptions or medications before discharge. All original 14 strategies and 8 additional strategies proposed by panelists were considered medium- or high-impact and were incorporated into a final taxonomy of 22 OUD care transition strategies. CONCLUSIONS:Our study established expert consensus on impactful and feasible hospital strategies to support OUD care transitions from the hospital to community-based MOUD treatment, an area with little empirical research thus far. It is the hope that this taxonomy serves as a stepping-stone for future evaluations and clinical practice implementation toward improved MOUD continuity and health outcomes.
PMID: 39438382
ISSN: 1525-1497
CID: 5738902

Barriers and Facilitators to Trust in the COVID-19 New York City Test and Trace Program

Chau, Michelle M; Larson, Rita; Paul, Margaret M; Massar, Rachel E; Kwok, Lorraine; Berry, Carolyn A; Thorpe, Lorna E; Bendik, Stefanie; Bershteyn, Anna; Islam, Nadia S
PMCID:11461413
PMID: 39285149
ISSN: 1468-2869
CID: 5706762

Sentiment Analysis of Twitter Posts Related to a COVID-19 Test & Trace Program in NYC

Tsai, Krystle A; Chau, Michelle M; Wang, Juncheng; Thorpe, Lorna E; Massar, Rachel E; Conderino, Sarah; Berry, Carolyn A; Islam, Nadia S; Bershteyn, Anna; Bragg, Marie A
As part of a program evaluation of the New York City Test & Trace program (T2)-one of the largest such programs in the USA-we conducted a study to assess how implementing organizations (NYC Health + Hospitals, government agencies, CBOs) communicated information about the T2 program on Twitter. Study aims were as follows: (1) quantify user engagement of posts ("tweets") about T2 by NYC organizations on Twitter and (2) examine the emotional tone of social media users' T2-related tweets in our sample of 1987 T2-related tweets. Celebrities and CBOs generated more user engagement (0.26% and 0.07%, respectively) compared to government agencies (e.g., Mayor's Office, 0.0019%), reinforcing the value of collaborating with celebrities and CBOs in social media public health campaigns. Sentiment analysis revealed that positive tweets (46.5%) had higher user engagement than negative tweets (number of likes: R2 = .095, p < .01), underscoring the importance of positively framing messages for effective public health campaigns.
PMCID:11461426
PMID: 39325247
ISSN: 1468-2869
CID: 5705772

Meeting Social Needs in a Crisis Context: Lessons Learned from Integrating the 'Take Care Initiative' into New York City's Testing and Contact Tracing Program

Massar, Rachel E; Paul, Margaret M; Kwok, Lorraine; Chau, Michelle M; Larson, Rita; Islam, Nadia; Thorpe, Lorna E; Bendik, Stefanie; Bershteyn, Anna; Berry, Carolyn A
The COVID-19 pandemic highlighted the importance of addressing social needs in a crisis context. Some US jurisdictions integrated a social service component into case investigation and contact tracing (CI/CT) programs, including the New York City (NYC) Test & Trace (T2) Program; the Take Care initiative referred NYC residents who tested positive or were exposed to COVID-19 to services to support isolation and quarantine and meet basic needs. More research is needed to determine effective implementation strategies for integrating social needs provision into CI/CT programs. To identify barriers and facilitators to the implementation of the Take Care initiative, we conducted key informant interviews with program staff, community-based organization partners, and cases and contacts as part of a larger evaluation of the T2 program. Interviews were recorded, transcribed, and analyzed using rapid qualitative methods. Key facilitators to implementation included utilizing a case management software system, employing strategies to encourage service uptake, leveraging cross-agency collaborations, and partnering with community-based organizations for resource navigation. Barriers identified included external management of the software system, challenges reaching and engaging the public, administrative complications due to shifting collaborations, and management of CBO partners' structure and hiring. Based on our findings, we provide recommendations to support effective planning and implementation of social needs service provision in a crisis context. Future research should focus on testing promising implementation strategies highlighted in this study and applying them to varied contexts and crisis situations.
PMID: 39266870
ISSN: 1468-2869
CID: 5690702

Lessons Learned from the Launch and Implementation of the COVID-19 Contact Tracing Program in New York City: a Qualitative Study

Paul, Margaret M; Kwok, Lorraine; Massar, Rachel E; Chau, Michelle; Larson, Rita; Bendik, Stefanie; Thorpe, Lorna E; Bershteyn, Anna; Islam, Nadia; Berry, Carolyn A
On June 1, 2020, NYC Health + Hospitals, in partnership with the NYC Department of Health and Mental Hygiene, other city agencies, and a large network of community partners, launched the New York City Test & Trace (T2) COVID-19 response program to identify and isolate cases, reduce transmission through contact tracing, and provide support to residents during isolation or quarantine periods. In this paper, we describe lessons learned with respect to planning and implementation of case notification and contact tracing. Our findings are based on extensive document review and analysis of 74 key informant interviews with T2 leadership and frontline staff, cases, and contacts conducted between January and September 2022. Interviews elicited respondent background, history of program development, program leadership and structure, goals of the program, program evolution, staffing, data systems, elements of community engagement, trust with community, program reach, timeliness, equity, general barriers and challenges, general facilitators and best practices, and recommendations/improvement for the program. Facilitators and barriers revealed in the interviews primarily revolved around hiring and managing staff, data and technology, and quality of interactions with the public. Based on these facilitators and barriers, we identify suggestions to support effective planning and response for future case notification and contact tracing programs, including recommendations for planning during latent periods, case management and data systems, and processes for outreach to cases and contacts.
PMCID:11461716
PMID: 39207644
ISSN: 1468-2869
CID: 5706902

Scale-Up of COVID-19 Testing Services in NYC, 2020-2021: Lessons Learned to Maximize Reach, Equity and Timeliness

Thorpe, Lorna E; Conderino, Sarah; Bendik, Stefanie; Berry, Carolyn; Islam, Nadia; Massar, Rachel; Chau, Michelle; Larson, Rita; Paul, Margaret M; Hong, Chuan; Fair, Andrew; Titus, Andrea R; Bershteyn, Anna; Wallach, Andrew
During infectious disease epidemics, accurate diagnostic testing is key to rapidly identify and treat cases, and mitigate transmission. When a novel pathogen is involved, building testing capacity and scaling testing services at the local level can present major challenges to healthcare systems, public health agencies, and laboratories. This mixed methods study examined lessons learned from the scale-up of SARS-CoV-2 testing services in New York City (NYC), as a core part of NYC's Test & Trace program. Using quantitative and geospatial analyses, the authors assessed program success at maximizing reach, equity, and timeliness of SARS-CoV-2 diagnostic testing services across NYC neighborhoods. Qualitative analysis of key informant interviews elucidated key decisions, facilitators, and barriers involved in the scale-up of SARS-CoV-2 testing services. A major early facilitator was the ability to establish working relationships with private sector vendors and contractors to rapidly procure and manufacture necessary supplies locally. NYC residents were, on average, less than 25 min away from free SARS-CoV-2 diagnostic testing services by public transport, and services were successfully directed to most neighborhoods with the highest transmission rates, with only one notable exception. A key feature was to direct mobile testing vans and rapid antigen testing services to areas based on real-time neighborhood transmission data. Municipal leaders should prioritize fortifying supply chains, establish cross-sectoral partnerships to support and extend testing services, plan for continuous testing and validation of assays, ensure open communication feedback loops with CBO partners, and maintain infrastructure to support mobile services during infectious disease emergencies.
PMCID:11461424
PMID: 39316309
ISSN: 1468-2869
CID: 5705752

Corrigendum to "Incidence, Complications, and Long-term Outcomes of Gender-affirming Phalloplasty: Analysis of a Large Statewide Population-based Dataset" [Urology, 185 (2024) 27-33]

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: 38906723
ISSN: 1527-9995
CID: 5672482

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