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Patient reported outcomes in genital gender-affirming surgery: the time is now [Letter]

Agochukwu-Mmonu, Nnenaya; Radix, Asa; Zhao, Lee; Makarov, Danil; Bluebond-Langner, Rachel; Fendrick, A Mark; Castle, Elijah; Berry, Carolyn
Transgender and non-binary (TGNB) individuals often experience gender dysphoria. TGNB individuals with gender dysphoria may undergo genital gender-affirming surgery including vaginoplasty, phalloplasty, or metoidioplasty so that their genitourinary anatomy is congruent with their experienced gender. Given decreasing social stigma and increasing coverage from private and public payers, there has been a rapid increase in genital gender-affirming surgery in the past few years. As the incidence of genital gender-affirming surgery increases, a concurrent increase in the development and utilization of patient reported outcome measurement tools is critical. To date, there is no systematic way to assess and measure patients' perspectives on their surgeries nor is there a validated measure to capture patient reported outcomes for TGNB individuals undergoing genital gender-affirming surgery. Without a systematic way to assess and measure patients' perspectives on their care, there may be fragmentation of care. This fragmentation may result in challenges to ensure patients' goals are at the forefront of shared- decision making. As we aim to increase access to surgical care for TGNB individuals, it is important to ensure this care is patient-centered and high-quality. The development of patient-reported outcomes for patients undergoing genital gender-affirming surgery is the first step in ensuring high quality patient-centered care. Herein, we discuss the critical need for development of validated patient reported outcome measures for transgender and non-binary patients undergoing genital reconstruction. We also propose a model of patient-engaged patient reported outcome measure development.
PMCID:9038968
PMID: 35467181
ISSN: 2509-8020
CID: 5217282

Ten Common Structures and Processes of High-Performing Primary Care Practices

Nguyen, Ann M; Paul, Margaret M; Shelley, Donna R; Albert, Stephanie L; Cohen, Deborah J; Bonsu, Pam; Wyte-Lake, Tamar; Blecker, Saul; Berry, Carolyn A
Structures (context of care delivery) and processes (actions aimed at delivery care) are posited to drive patient outcomes. Despite decades of primary care research, there remains a lack of evidence connecting specific structures/processes to patient outcomes to determine which of the numerous recommended structures/processes to prioritize for implementation. The objective of this study was to identify structures/processes most commonly present in high-performing primary care practices for chronic care management and prevention. We conducted key informant interviews with a national sample of 22 high-performing primary care practices. We identified the 10 most commonly present structures/processes in these practices, which largely enable 2 core functions: mobilizing staff to conduct patient outreach and helping practices avoid gaps in care. Given the costs of implementing and maintaining numerous structures/processes, our study provides a starting list for providers to prioritize and for researchers to investigate further for specific effects on patient outcomes.
PMCID:8781214
PMID: 34654020
ISSN: 1550-5022
CID: 5153182

A qualitative study of high-performing primary care practices during the COVID-19 pandemic

Albert, Stephanie L; Paul, Margaret M; Nguyen, Ann M; Shelley, Donna R; Berry, Carolyn A
BACKGROUND:Primary care practices have remained on the frontline of health care service delivery throughout the COVID-19 pandemic. The purpose of our study was to understand the early pandemic experience of primary care practices, how they adapted care processes for chronic disease management and preventive care, and the future potential of these practices' service delivery adaptations. METHODS:We interviewed 44 providers and staff at 22 high-performing primary care practices located throughout the United States between March and May 2020. Interviews were transcribed and coded using a modified rapid assessment process due to the time-sensitive nature of the study. RESULTS:Practices reported employing a variety of adaptations to care during the COVID-19 pandemic including maintaining safe and socially distanced access through increased use of telehealth visits, using disease registries to identify and proactively outreach to patients, providing remote patient education, and incorporating more home-based monitoring into care. Routine screening and testing slowed considerably, resulting in concerns about delayed detection. Patients with fewer resources, lower health literacy, and older adults were the most difficult to reach and manage during this time. CONCLUSION:Our findings indicate that primary care structures and processes developed for remote chronic disease management and preventive care are evolving rapidly. Emerging adapted care processes, most notably remote provision of care, are promising and may endure beyond the pandemic, but issues of equity must be addressed (e.g., through payment reform) to ensure vulnerable populations receive the same benefit.
PMCID:8614080
PMID: 34823495
ISSN: 1471-2296
CID: 5063772

Telephone vs. Video Visits During COVID-19: Safety-Net Provider Perspectives

Chang, Ji Eun; Lindenfeld, Zoe; Albert, Stephanie L; Massar, Rachel; Shelley, Donna; Kwok, Lorraine; Fennelly, Kayla; Berry, Carolyn A
OBJECTIVE:To review the frequency as well as the pros and cons of telephone and video-enabled telemedicine during the first 9 months of the Coronavirus disease 2019 (COVID-19) pandemic as experienced by safety net providers across New York State (NYS). METHODS:Analysis of visits to 36 community health centers (CHCs) in NYS by modality (telephone vs video) from February to November 2020. Semi-structured interviews with 25 primary care, behavioral health, and pediatric providers from 8 CHCs. FINDINGS:In the week following the NYS stay-at-home order, video and telephone visits rose from 3.4 and 0% of total visits to 14.9 and 22.3%. At its peak, more than 60% of visits were conducted via telemedicine (April 2020) before tapering off to about 30% of visits (August 2020). Providers expressed a strong preference for video visits, particularly for situations when visual assessments were needed. Yet, more visits were conducted over telephone than video at all points throughout the pandemic. Video-specific advantages included enhanced ability to engage patients and use of visual cues to get a comprehensive look into the patient's life, including social supports, hygiene, and medication adherence. Telephone presented unique benefits, including greater privacy, feasibility, and ease of use that make it critical to engage with key populations and as a backup for when video was not an option. CONCLUSIONS:Despite challenges, providers reported positive experiences delivering care remotely using both telephone and video during the COVID-19 pandemic and believe both modalities are critical for enabling access to care in the safety net.
PMID: 34772766
ISSN: 1558-7118
CID: 5048772

A practice facilitation-guided intervention in primary care settings to reduce cardiovascular disease risk: a cost analysis

Gold, Heather T; Siman, Nina; Cuthel, Allison M; Nguyen, Ann M; Pham-Singer, Hang; Berry, Carolyn A; Shelley, Donna R
BACKGROUND:A stepped-wedge, cluster randomized controlled trial assessed the effectiveness of practice facilitation (PF) for adoption of guidelines for prevention and treatment of cardiovascular disease risk factors. This study estimated the associated cost of PF for guideline adoption in small, private primary care practices. METHODS:The cost analysis included categories for start-up costs, intervention costs, and practice staff costs for the implemented PF-guided intervention. We estimated the total 1-year costs to operate the program and calculated the mean and range of the cost-per-practice by quarter of the intervention. We estimated the lower and upper bounds for all salary expenses, rounding to the nearest $100. RESULTS:Total 1-year intervention costs for all 261 practices ranged from $7,900,000 to $10,200,000, with program and practice salaries comprising $6,600,000-$8,400,000 of the total. Start-up costs were a small proportion (3%) of the total 1-year costs. Excluding start-up costs, quarter 1 cost-per-practice was the most expensive at $20,400-$26,700, and quarter 4 was the least expensive at about $10,000. Practice staff time (compared with program staff time) was the majority of the staffing costs at 75-84%. CONCLUSIONS:The PF strategy costs approximately $10,000 per practice per quarter for program and practice costs, once implemented and running at highest efficiency. Whether this program is "worth it" to the decision-maker depends on the relative costs and effectiveness of their other options for improving cardiovascular risk reduction. TRIAL REGISTRATION/BACKGROUND:This study is retrospectively registered on January 5, 2016, at www.clinicaltrials.gov as NCT02646488 .
PMCID:7868016
PMID: 33549152
ISSN: 2662-2211
CID: 4837702

A Taxonomy for External Support for Practice Transformation

Solberg, Leif I; Kuzel, Anton; Parchman, Michael L; Shelley, Donna R; Dickinson, W Perry; Walunas, Theresa L; Nguyen, Ann M; Fagnan, Lyle J; Cykert, Samuel; Cohen, Deborah J; Balasubramanaian, Bijal A; Fernald, Douglas; Gordon, Leah; Kho, Abel; Krist, Alex; Miller, William; Berry, Carolyn; Duffy, Daniel; Nagykaldi, Zsolt
BACKGROUND:There is no commonly accepted comprehensive framework for describing the practical specifics of external support for practice change. Our goal was to develop such a taxonomy that could be used by both external groups or researchers and health care leaders. METHODS:The leaders of 8 grants from Agency for Research and Quality for the EvidenceNOW study of improving cardiovascular preventive services in over 1500 primary care practices nationwide worked collaboratively over 18 months to develop descriptions of key domains that might comprehensively characterize any external support intervention. Combining literature reviews with our practical experiences in this initiative and past work, we aimed to define these domains and recommend measures for them. RESULTS:The taxonomy includes 1 domain to specify the conceptual model(s) on which an intervention is built and another to specify the types of support strategies used. Another 5 domains provide specifics about the dose/mode of that support, the types of change process and care process changes that are encouraged, and the degree to which the strategies are prescriptive and standardized. A model was created to illustrate how the domains fit together and how they would respond to practice needs and reactions. CONCLUSIONS:This taxonomy and its use in more consistently documenting and characterizing external support interventions should facilitate communication and synergies between 3 areas (quality improvement, practice change research, and implementation science) that have historically tended to work independently. The taxonomy was designed to be as useful for practices or health systems managing change as it is for research.
PMID: 33452080
ISSN: 1558-7118
CID: 4798682

Impact of a Primary Care Provider Tele-Mentoring and Community Health Worker Intervention on Utilization in Medicaid Patients with Diabetes

Blecker, Saul; Lemieux, Emily; Paul, Margaret M; Berry, Carolyn A; Bouchonville, Matthew F; Arora, Sanjeev; Billings, John
OBJECTIVE:The Endocrinology ECHO intervention utilized a tele-mentoring model that connects primary care providers (PCPs) and community health workers (CHWs) with specialists for training in diabetes care. We evaluated the impact of the Endo ECHO intervention on healthcare utilization and care for Medicaid patients with diabetes in New Mexico. METHODS:Between January 2015 and April 2017, patients with complex diabetes from 10 health centers in NM were recruited to receive diabetes care from a PCP and CHW upskilled through Endo ECHO. We matched intervention patients in the NM Medicaid claims database to comparison Medicaid beneficiaries using 5:1 propensity matching. We used a difference-in-difference (DID) approach to compare utilization and processes of care between intervention and comparison patients. RESULTS:Of 541 Medicaid patients enrolled in Endo ECHO, 305 met inclusion criteria and were successfully matched. Outpatient visits increased with Endo ECHO for intervention patients as compared to comparison patients (rate ratio, 1.57; 95% confidence interval [CI], 1.43 to 1.72). The intervention was associated with an increase in emergency department (ED) visits (rate ratio, 1.30; 95% CI, 1.04 to 1.63) but no change in hospitalizations (rate ratio, 1.47; 95% CI, 0.95 to 2.23). Among intervention patients, utilization of metformin increased from 57.1% to 60.7%, with a DID between groups of 8.8% (95% CI, 4.0% to 13.6%). We found similar increases in use of statins (DID, 8.5%; 95% CI, 3.2% to 13.8%), angiotensin-converting enzyme inhibitors (DID, 9.5%; 95% CI, 3.5% to 15.4%), or antidepressant therapies (DID, 9.4%; 95% CI, 1.1% to 18.1%). CONCLUSION/CONCLUSIONS:Patient enrollment in Endo ECHO was associated with increased outpatient and ED utilization and increased uptake of prescription-related quality measures. No impact was observed on hospitalization.
PMID: 33471708
ISSN: 1530-891x
CID: 4882082

Measuring Implementation Strategy Fidelity in HealthyHearts NYC: A Complex Intervention Using Practice Facilitation in Primary Care

Berry, Carolyn A; Nguyen, Ann M; Cuthel, Allison M; Cleland, Charles M; Siman, Nina; Pham-Singer, Hang; Shelley, Donna R
Few studies have assessed the fidelity of practice facilitation (PF) as an implementation strategy, and none have used an a priori definition or conceptual framework of fidelity to guide fidelity assessment. The authors adapted the Conceptual Framework for Implementation Fidelity to guide fidelity assessment in HealthyHearts NYC, an intervention that used PF to improve adoption of cardiovascular disease evidence-based guidelines in primary care practices. Data from a web-based tracking system of 257 practices measured fidelity using 4 categories: frequency, duration, content, and coverage. Almost all (94.2%) practices received at least the required 13 PF visits. Facilitators spent on average 26.3 hours at each site. Most practices (95.7%) completed all Task List items, and 71.2% were educated on all Chronic Care Model strategies. The majority (65.8%) received full coverage. This study provides a model that practice managers and implementers can use to evaluate fidelity of PF, and potentially other implementation strategies.
PMID: 32964719
ISSN: 1555-824x
CID: 4615712

Patient-physician race/ethnicity concordance improves adherence to cardiovascular disease guidelines [Meeting Abstract]

Nguyen, A M; Siman, N; Barry, M; Cleland, C M; Pham-Singer, H; Ogedegbe, O; Berry, C; Shelley, D
Research Objective: Studies have found that race/ethnicity concordance between patients and providers improves medication adherence among patients with hypertension and single CVD outcomes (eg, blood pressure control). Our objective was to examine the association of patient-physician race/ethnicity concordance on adherence to the Million Hearts "ABCS" CVD guidelines: (A) aspirin when indicated, (B) blood pressure control, (C) cholesterol management, and (S) smoking screening and cessation. To the best of our knowledge, this is the first study to examine the impact of race/ ethnicity concordance on guideline adherence to multiple CVD outcome measures.
Study Design: This study was part of HealthyHearts NYC, a stepped-wedge cluster randomized controlled trial funded through AHRQ's EvidenceNOW initiative to test the effectiveness of practice facilitation on helping primary care practices adhere to CVD guidelines. The main outcomes were the Million Hearts' ABCS measures. Two additional measures were created: (a) proportion of patients who use tobacco who received a cessation intervention (smokers counseled) and (b) a composite measure that assessed the proportion of patients meeting treatment targets for A, B, and C (ABC composite). Practice-level outcome data were extracted for thirteen quarters from practices' electronic health record (EHR) systems, encompassing the control, intervention, and follow-up periods of the intervention. Patient-physician race/ethnicity concordance was calculated using patient race/ethnicity data extracted from the practices' EHR and physician race/ethnicity data collected via a Provider Survey. The concordance measure was calculated as the proportion of patients with the same race/ethnicity as the physician, for example, if practice is led by an Asian physician, and patients are 33% non-Hispanic white, 5% non-Hispanic black, 5% Hispanic, and 57% Asian, the concordance is 0.57. Population Studied: 211 small primary care practices in NYC. Principal Findings: 57.7% of Hispanic, 53.6% of black, 73.6% of Asian, 74.2% of non-Hispanic white, and 24.1% of Hawaiian/Pacific Islander patients had the same race/ethnicity as their physicians. 44.7% of physicians had the same race/ethnicity as at least 70% of their patients. Patient-physician race/ethnicity concordance was associated with adherence to four of our six outcome measures: aspirin (IRR = 1.08, 95% CI: 1.03-1.14, P < .001); blood pressure (IRR = 1.09, 95% CI: 1.07-1.12, P < .001); smoking screening and cessation (IRR = 1.06, 95% CI: 1.04-1.08, P < .001); and ABC composite (IRR = 1.42, 95% CI: 1.33-1.52, P < 0.001). We did not find an association for race/ethnicity concordance with Cholesterol and Smokers Counseled.
Conclusion(s): Increasing opportunities for patient-physician race/ ethnicity concordance may improve adherence to CVD guidelines. The largest improvement was observed in the ABC Composite measure, suggesting that patient-physician race/ethnicity concordance is particularly important for managing medically complex patients who have multiple chronic diseases. Implications for Policy or Practice: Health policy should fund programs that support the recruitment and retention of a wide diversity of students and faculty to increase the level of concordance in patient-clinician encounters. Policy makers may also want to consider legislation to help support or protect small practices that predominantly serve communities of color, where a large proportion of the physicians may be racially/ ethnically concordant with the patient population. Medical education programs should incorporate patient-physician communication training to minimize gaps potentially created by race/ethnicity discordance
EMBASE:633914692
ISSN: 1475-6773
CID: 4782832

Social Needs Screening and Referral Program at a Large US Public Hospital System, 2017

Berry, Carolyn; Paul, Margaret; Massar, Rachel; Marcello, Roopa Kalyanaraman; Krauskopf, Marian
Many health care providers and systems are developing and implementing processes to screen patients for social determinants of health and to refer patients to appropriate nonclinical and community-based resources. The largest public health care system in the United States, New York City Health + Hospitals, piloted such a program in 2017. A qualitative evaluation yielded insights into the implementation and feasibility of such screening and referral programs in health care systems serving low-income, minority, immigrant, and underserved populations.
PMCID:7362691
PMID: 32663088
ISSN: 1541-0048
CID: 4546032