Objective We estimated the prevalence of diagnosed eating disorders, overall and by select demographics, among commercially insured individuals identified as transgender in a national claims database. Methods From the 2018 IBM® MarketScan® Commercial Database, there were 10,415 people identifiable as transgender based on International Classification of Disease (ICD‐10) codes and procedure codes, specific to gender‐affirming care, from inpatient and outpatient claims. Eating disorders were identified from ICD‐10 codes and included anorexia nervosa, bulimia nervosa, binge eating disorder, eating disorder not otherwise specified, avoidant restrictive feeding and intake disorder, and other specified feeding and eating disorders. We estimated the prevalence of specific eating disorders diagnoses by selecting patient characteristics. Results Of individuals receiving some form of gender‐affirming care, 2.43% (95% confidence interval: 2.14%–2.74%) were diagnosed with an eating disorder: 0.84% anorexia nervosa, 0.36% bulimia nervosa, 0.36% binge eating disorder, 0.15% avoidant restrictive feeding and intake disorder, 0.41% other specified feeding and eating disorders, and 1.37% with an unspecified eating disorder. Among transgender‐identifiable patients aged 12–15 years, 5.60% had an eating disorder diagnosis, whereas 0.52% had an eating disorder diagnosis in patients aged 45–64 years. Discussion In patients identifiable as transgender, with receipt of gender‐affirming care, the prevalence of diagnosed eating disorders was low compared to extant self‐reported data for eating disorder diagnosis in transgender individuals. Among this population, eating disorders were highest in adolescents and young adults. Clinically verified prevalence estimates for eating disorder diagnosis in transgender people with a history of gender‐affirming care warrant further investigation. Public Significance The present study aims to provide clinically validated, contemporary prevalence estimates for diagnosed eating disorders among a medically affirmed population of transgender adults and children in the United States. We report low prevalence of having any eating disorder relative to prevalence estimates reported in prior literature without clinical validation. These findings may be explained by access to affirming care and medical care generally.
Introduction: On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods: We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results: Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or ''crazy.'' Diagnostic delay led to frustration and mental
Background: Health care satisfaction is a key component of patient-centered care. Prior research on transgender populations has been based on convenience samples, and/or grouped all gender minorities into a single category. Objective: The objective of this study was to quantify differences in health care satisfaction among transgender men, transgender women, gender nonconforming, and cisgender adults in a diverse multistate sample. Research Design: Cross-sectional analysis of 2014–2018 Behavioral Risk Factor Surveillance System data from 20 states, using multivariable logistic models. Subjects: We identified 167,468 transgender men, transgender women, gender-nonconforming people, cisgender women, and cisgender men and compared past year health care satisfaction across these groups. Results: Transgender men and women had the highest prevalence of being “not at all satisfied” with the health care they received (14.6% and 8.6%, respectively), and gender-nonconforming people had the lowest prevalence of being “very satisfied” with their health care (55.7%). After adjustment for sociodemographic characteristics, transgender men were more likely to report being “not at all satisfied” with health care than cisgender men (odds ratio: 4.45, 95% confidence interval: 1.72–11.5) and cisgender women (odds ratio: 3.40, 95% confidence interval: 1.31–8.80). Conclusions: Findings indicate that transgender and gender-nonconforming adults report considerably less health care satisfaction relative to their cisgender peers. Interventions to address factors driving these differences are needed.
Background The average time to a diagnosis for people with axial spondyloarthritis (axSpA) is 7-10 years. Delayed diagnosis may result in increased structural damage, worse physical function, and worse quality of life relative to patients with a timely axSpA diagnosis. Understanding patient experiences may provide insights for how to reduce diagnostic delays. Objective To provide foundational knowledge about patient experiences with healthcare providers leading to an axSpA diagnosis. Methods We conducted an exploratory qualitative research study with six focus groups interviews with participants recruited from three rheumatology clinics within the United States (MA (n = 3); CO (n = 2); PA (n = 1)) that included a total of 26 adults (10 females, 16 males) with rheumatologist confirmed diagnosis of axSpA in 2019. Focus groups were ~ 2 h, audio recorded, transcribed, and subject to dual coding. The codes reviewed were in relation to the patients’ diagnostic experiences. Results Patients described frustrating and lengthy diagnostic journeys. They recognized that the causes of diagnostic delays in axSpA are multifactorial (e.g., no definitive diagnostic test, disease characteristics, lack of primary care provider’s awareness about axSpA, trust). Patients described how doctors minimized or dismissed complaints about symptoms or told them that their issues were psychosomatic. Patients believed the healthcare system contributed to diagnostic delays (e.g., lack of time in clinical visits, difficulty accessing rheumatologists, health insurance challenges). Advice to physicians to reduce the diagnostic delay included allowing time for patients to give a complete picture of their illness experience, listening to, and believing patients, earlier referral to rheumatology, provision of HLA-B27 gene testing, and that physicians need to partner with their patients. Conclusions Patients desire a definitive test that could be administered earlier in the course of axSpA. Until such a test is available, patients want clinicians who listen to, believe, and partner with them, and who will follow them until a diagnosis is reached. Educating primary care clinicians about guidelines and referral for diagnosis of axSpA could reduce diagnostic delay.
Background The prevalence of eating disorders is higher in transgender and non-binary compared to cisgender people. Gender diverse people who seek eating disorder treatment often report struggling to find affirming and inclusive treatment from healthcare clinicians. We sought to understand eating disorder care clinicians’ perceptions of facilitators of and barriers to effective eating disorder treatment for transgender and gender diverse patients. Methods In 2022, nineteen US-based licensed mental health clinicians who specialized in eating disorder treatment participated in semi-structured interviews. We used inductive thematic analysis to identify themes around perceptions and knowledge of facilitators and barriers to care for transgender and gender diverse patients diagnosed with eating disorders. Results Two broad themes were identified: (1) factors affecting access to care; and (2) factors affecting care while in treatment. Within the first theme, the following subthemes were found: stigmatization, family support, financial factors, gendered clinics, scarcity of gender-competent care, and religious communities. Within the second theme, prominent subthemes included discrimination and microaggressions, provider lived experience and education, other patients and parents, institutions of higher education, family-centered care, gendered-centered care, and traditional therapeutic techniques. Conclusion Many barriers and facilitators have potential to be improved upon, especially those caused by clinicians’ lack of knowledge or attitudes towards gender minority patients in treatment. Future research is needed to identify how provider-driven barriers manifest and how they can be improved upon to better patient care experiences.
Objective To examine the association between caregiver‐perceived neighborhood safety and pediatric asthma severity using a cross‐sectional, nationally representative sample. Study Design Using data from the 2017–2018 National Survey of Children's Health, children aged 6–17 years with primary caregiver report of a current asthma diagnosis were included (unweighted N = 3209; weighted N = 3,909,178). Perceived neighborhood safety, asthma severity (mild vs. moderate/severe), demographic, household, and health/behavioral covariate data were collected from primary caregiver report. Poisson regression with robust error variance was used to estimate the association between perceived neighborhood safety and caregiver‐reported pediatric asthma severity. Results Approximately one‐third of children studied had moderate/severe asthma. A total of 42% of children with mild asthma and 52% of children with moderate/severe asthma identified as Hispanic or non‐Hispanic Black. Nearly 20% of children with mild asthma and 40% of children with moderate/severe asthma were from families living below the federal poverty level (FPL). Children living in neighborhoods perceived by their caregiver to be unsafe had higher prevalence of moderate/severe asthma compared to those in the safest neighborhoods (adjusted prevalence ratio: 1.34; 95% confidence interval: 1.04–1.74). This association was found to be independent of race/ethnicity, household FPL, household smoking, and child's physical activity level after adjusting for covariates. Conclusions Children living in neighborhoods perceived by their caregiver to be unsafe have higher prevalence of moderate or severe asthma. Further investigation of geographic context and neighborhood characteristics that influence childhood asthma severity may inform public health strategies to reduce asthma burden and improve disease outcomes.
Background:People with Axial Spondyloarthritis (axSpA) experience a diagnostic delay between 7 to 10 years. (1-5) This delay contributes to increased depression and desperation in searching for an appropriate diagnosis. (6) Consequently, people with axSpA experience impaired physical function, structural damage, and overall worsened quality of life than those who experience a timely diagnosis. (7)Objectives:To gain knowledge and understand patients’ experiences with healthcare providers in diagnosis of axSpA.Methods:Using qualitative study design, we conducted six focus groups, with a total of 26 participants with a confirmed diagnosis of axSpA by rheumatologists from three different geographic locations: Worcester, MA, Aurora, CO and Philadelphia, PA. Focus groups were audio recorded and approximately 2 hours in duration. The focus groups were transcribed, deidentified, cleaned and stored in a secure location. NVivo software was used to code the data using a coding scheme which emerged from the focus group discussion topics. For intercoder reliability, two researchers coded the data and generated summary reports for data analysis.Results:Patients described their frustrating journeys to diagnosis and attributed the lengthy diagnosis delays to a multitude of factors. These elements include, lack of definitive diagnostic test, disease characteristics, lack of primary care providers’ awareness of axSpA, time, and trust. Patients felt that their physicians dismissed their complaints or would describe their symptoms as psychosomatic. The health care system also contributed to their diagnostic delays, including the lengthy referral process to a rheumatologist and the short clinical appointments. Patients believe that to reduce diagnostic delay, physicians must work with their patients; listening and believing their patients while allotting time for patients to discuss their experiences. In addition, patients believe earlier referral to a rheumatologist, and HLA-B27 genetic testing would decrease the diagnostic delay of axSpA.Conclusion:In this study, patients desire definitive testing in clinical practice for earlier diagnosis of axSpA. Additionally, more education regarding the guidelines to diagnose axSpA and earlier referral to rheumatologists might be needed. Until this is feasible, patients seek clinicians who will work with them until a diagnosis is made, listening, and believing their experiences and symptoms.References:[1]Deodhar A, Mease P, Reveille J, Curtis J, Karunaratne P, Malhotra K. Prevalence of axial spondyloarthritis among undiagnosed chronic back pain patients in the United States [abstract]. Ann Rheum Dis. 2014;73:198-199.[2]Deodhar A, Mease PJ, Reveille JD, et al. Frequency of Axial Spondyloarthritis Diagnosis Among Patients Seen by US Rheumatologists for Evaluation of Chronic Back Pain. Arthritis Rheumatol. 2016;68(2326-5205 (Electronic)):1669–1676.[3]Garrido-Cumbrera M, Poddubnyy D, Gossec L, et al. The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective-an Analysis of 2846 Patients Across 13 Countries. Curr Rheumatol Rep. 2019;21(1534-6307 (Electronic)):19.[4]Redeker I, Callhoff J, Hoffmann F, et al. Determinants of diagnostic delay in axial spondyloarthritis: an analysis based on linked claims and patient-reported survey data. Rheumatology (Oxford) 2019;58(1462-0332 (Electronic)):1634–1638.[5]Strand V, Singh JA. Evaluation and Management of the Patient With Suspected Inflammatory Spine Disease. Mayo Clin Proc 2017;92(1942-5546 (Electronic)):555–564.[6]Martindale J. The impact of delay in diagnosing ankylosing spondylitis/axial SpA. . Rheumatology. 2014;53.[7]Yi EA-O, Ahuja A, Rajput T, George AT, Park Y. Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review. Rheumatol Ther 2020(2198-6576 (Print)):65-87.Disclosure of Interests:Kate Lapane: None declared, Catherine Dubé Grant/research support from: Novartis, as personnel on such studies, Katarina Ferrucci: None declared, Sara Khan: None declared, Kristine A. Kuhn Consultant of: UCB, Eli Lilly, Novartis, Grant/research support from: Pfizer, Alexis Ogdie Consultant of: Abbvie, Amgen, BMS, Celgene, Corrona, Gilead, Janssen, Lilly, Novartis, Pfizer, UCB, Grant/research support from: Pfizer to Penn, Novartis to Penn, Amgen to Forward/NDB, Esther Yi Employee of: Novartis Pharmaceuticals, Jonathan Kay Consultant of: AbbVie, Inc.; Boehringer Ingelheim GmbH; Celltrion Healthcare Co. Ltd.; Jubilant Radiopharma; Merck & Co.,Inc.; Pfizer Inc.; Samsung Bioepis; Sandoz Inc.; Scipher Medicine; UCB, Inc., Grant/research support from: (paid to UMass Medical School) Gilead Sciences Inc.; Novartis Pharmaceuticals Corp.; Pfizer Inc., Shao-Hsien Liu Grant/research support from: Novartis
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