Evaluating an Electronic Consultation Platform to Support Pediatric Primary Care Providers in Caring for Transgender and Nonbinary Adolescents.

Background: An electronic consultation (e-consult) platform was implemented to support pediatric primary care providers (PCPs) in providing gender-affirming care to transgender and nonbinary (TNB) adolescents. Following implementation, a study was conducted to (1) explore how access to this e-consult platform impacts PCP confidence and referral patterns, (2) describe the content of questions, and (3) evaluate PCP's perspectives regarding platform usability. Methods: Following each submission, providers completed a 17-item survey. A total of 20 providers submitted 38 e-consults and 26 follow-up surveys between October 2021 and December 2022. Results: All PCPs reported a high overall value and increased confidence caring for TNB adolescents. Nearly one in five (19%) felt it allowed them to avoid submitting a specialty referral. Mean System Usability Scale score was 78.2 indicating good usability. Conclusion: This e-consult platform shows great promise in increasing PCP confidence providing gender-affirming care adolescents. More widespread utilization could help improve access to care and decrease specialty care referrals.

Telemedicine-Based Provision of Adolescent Gender-Affirming Medical Care to Promote Equitable Access.

Purpose: To explore transgender and nonbinary (TNB) young adults' (1) interest in receiving gender-affirming medications through telemedicine before age 18 years and (2) willingness to initiate this care with primary care providers (PCPs). Methods: Data were from a survey of TNB young adults who had not received gender-affirming medications before age 18 years. Chi-square and Wald tests identified demographic differences in telemedicine interest and willingness to initiate medications with their PCP as minors. Results: Among 280 respondents, 82.5% indicated interest in telemedicine and 42.0% were willing to initiate medications with their PCP. Black/African American respondents were more likely to indicate interest in telemedicine than White and multiracial respondents. Respondents from rural areas were more likely to indicate willingness to initiate medications with their PCP than those from urban areas. Conclusions: Telemedicine expansion and further support for PCPs may represent critical opportunities to promote equitable access to adolescent gender-affirming care.

My Kidney Identity: Contextualizing pediatric patients and their families kidney transplant journeys.

BACKGROUND: Even though having a kidney transplant is the treatment of choice for children with kidney failure, it can cause anxiety for patients and their families resulting in decreased psychosocial functioning, adherence, and self-management. We set out to identify the information needs required to help pediatric patients and their families contextualize their posttransplant experiences as they recalibrate their understanding of normalcy throughout their transplant journey. METHODS: Participants submitted photographs related to feeling: (1) worried, (2) confident, (3) similar to peers without kidney disease, and (4) different from these peers. The photographs served as a foundation for an in-depth interview. RESULTS: Nineteen individuals (10 pediatric transplant recipients and 9 caregivers) were interviewed at a mean of 8 years posttransplant. We identified five specific themes and tensions our participants associated with recalibrating their version of "normal" throughout the transplant journey: (1) exchanging information (information consumers vs. information contributors, (2) transitional management (family management vs. self-management), (3) building confidence (worry vs. confidence), (4) telling one's story (hiding vs. self-expression), and (5) normalizing kidney transplantation (feeling different vs. feeling similar). These five themes/tensions form one's Kidney Identity, shift from negative to positive throughout the transplant journey, illustrating a more abstract and complex account of kidney transplantation over time. CONCLUSIONS: Having a patient view their Kidney Identity over time may support self-reflection of one's progress posttransplant and potentially help clinicians, patients, and their caregivers identify barriers and areas where they may need more support to ensure their successful engagement in their care.

"Eavesdropping": An Information Source for Inpatients.

Healthcare providers in the hospital setting must discuss patient information to ensure continuity of care and patient safety. This study explores how patients perceive the information they hear discussed between healthcare providers and how the concept of "eavesdropping" can be addressed by healthcare providers and in the field of medical informatics. Using an inductive analysis of interviews with 14 adult inpatients, research findings indicate that patients value receiving information in the hospital setting, including information received through eavesdropping. Patient eavesdropping opportunities include "eavesdropping by design" events, such as during bedside shift changes and handoffs, as well as unintended "unintended eavesdropping" events, such as listening to healthcare provider conversations outside of the patient's room. Healthcare providers and medical informaticists have opportunities to address eavesdropping in the inpatient setting. Informatics systems that address "eavesdropping by design" and "unintended eavesdropping opportunities" can improve patient-provider communication and satisfy patient preferences for receiving medical information.

Creating synthetic patient data to support the design and evaluation of novel health information technology.

To ensure that new health information technology supports its intended users, researchers and developers need to follow human-centered methods during all stages of the software development lifecycle, including early stage evaluations. These evaluations need to include realistic testing scenarios to ensure that they provide valuable and accurate feedback to system developers. However, obtaining realistic patient data to support these evaluations has many challenges, including the risk of re-identifying anonymized patients as well as the costs associated with connecting test systems with production ready clinical databases. Here we present a novel five-step process to create highly structured and realistic synthetic patient data to support the evaluation and comparison of early to middle stage health information technology prototypes. We applied this method to evaluate and compare three novel health information technology prototypes designed to support clinicians during the identification of high-priority patients when answering the question: "What patient should I see first?" Our novel approach fills an important gap in the evaluation of health information technology and assists designers in creating high-quality software that best supports its end users.

"It's Not Just Technology, It's People": Constructing a Conceptual Model of Shared Health Informatics for Tracking in Chronic Illness Management.

BACKGROUND: For many people, tracking health indicators is central to managing a chronic illness. However, previous informatics research has largely viewed tracking as a solitary process that lacks the characteristics essential to tracking in support of chronic illness management. OBJECTIVE: To inform development of effective technologies that aid tracking of health indicators to support chronic illness management, this study aimed to construct a health informatics model that accurately describes the work and social context of that tracking work. METHODS: As part of a larger project, we conducted semistructured interviews with 40 adults concerning their chronic illness management practices, including tracking and communication. We also assembled transcripts of 30 publicly available videos of 24 adults discussing tracking processes for managing their own chronic illness. We used qualitative methods to analyze interviews and video transcripts through the lens of ongoing personal and health informatics research. RESULTS: We have described the people and work involved in tracking in support of chronic illness management and contributed a Conceptual Model of Shared Health Informatics (CoMSHI). Specifically, we identified the need for a health informatics model that (1) incorporates the ongoing nature of tracking work and (2) represents the social dimension of tracking for illness management. Our model depicts communication, information, collection, integration, reflection, and action work in the social context of the person with chronic illness, informal carers, health care providers, and community members. CONCLUSIONS: The resulting CoMSHI yields a more detailed and nuanced viewpoint of tracking in support of chronic illness management and can inform technology design to improve tracking tools to support people in more confident and capable chronic illness management.

Detecting clinically related content in online patient posts.

Patients with chronic health conditions use online health communities to seek support and information to help manage their condition. For clinically related topics, patients can benefit from getting opinions from clinical experts, and many are concerned about misinformation and biased information being spread online. However, a large volume of community posts makes it challenging for moderators and clinical experts, if there are any, to provide necessary information. Automatically identifying forum posts that need validated clinical resources can help online health communities efficiently manage content exchange. This automation can also assist patients in need of clinical expertise by getting proper help. We present our results on testing text classification models that efficiently and accurately identify community posts containing clinical topics. We annotated 1817 posts comprised of 4966 sentences of an existing online diabetes community. We found that our classifier performed the best (F-measure: 0.83, Precision: 0.79, Recall:0.86) when using Naïve Bayes algorithm, unigrams, bigrams, trigrams, and MetaMap Symantic Types. Training took 5 s. The classification process took a fraction of 1 s. We applied our classifier to another online diabetes community, and the results were: F-measure: 0.63, Precision: 0.57, Recall: 0.71. Our results show our model is feasible to scale to other forums on identifying posts containing clinical topic with common errors properly addressed.

"How Did We Get Here?": Topic Drift in Online Health Discussions.

BACKGROUND: Patients increasingly use online health communities to exchange health information and peer support. During the progression of health discussions, a change of topic-topic drift-can occur. Topic drift is a frequent phenomenon linked to incoherence and frustration in online communities and other forms of computer-mediated communication. For sensitive topics, such as health, such drift could have life-altering repercussions, yet topic drift has not been studied in these contexts. OBJECTIVE: Our goals were to understand topic drift in online health communities and then to develop and evaluate an automated approach to detect both topic drift and efforts of community members to counteract such drift. METHODS: We manually analyzed 721 posts from 184 threads from 7 online health communities within WebMD to understand topic drift, members' reaction towards topic drift, and their efforts to counteract topic drift. Then, we developed an automated approach to detect topic drift and counteraction efforts. We detected topic drift by calculating cosine similarity between 229,156 posts from 37,805 threads and measuring change of cosine similarity scores from the threads' first posts to their sequential posts. Using a similar approach, we detected counteractions to topic drift in threads by focusing on the irregular increase of similarity scores compared to the previous post in threads. Finally, we evaluated the performance of our automated approaches to detect topic drift and counteracting efforts by using a manually developed gold standard. RESULTS: Our qualitative analyses revealed that in threads of online health communities, topics change gradually, but usually stay within the global frame of topics for the specific community. Members showed frustration when topic drift occurred in the middle of threads but reacted positively to off-topic stories shared as separate threads. Although all types of members helped to counteract topic drift, original posters provided the most effort to keep threads on topic. Cosine similarity scores show promise for automatically detecting topical changes in online health discussions. In our manual evaluation, we achieved an F1 score of .71 and .73 for detecting topic drift and counteracting efforts to stay on topic, respectively. CONCLUSIONS: Our analyses expand our understanding of topic drift in a health context and highlight practical implications, such as promoting off-topic discussions as a function of building rapport in online health communities. Furthermore, the quantitative findings suggest that an automated tool could help detect topic drift, support counteraction efforts to bring the conversation back on topic, and improve communication in these important communities. Findings from this study have the potential to reduce topic drift and improve online health community members' experience of computer-mediated communication. Improved communication could enhance the personal health management of members who seek essential information and support during times of difficulty.

Automatically Detecting Failures in Natural Language Processing Tools for Online Community Text.

BACKGROUND: The prevalence and value of patient-generated health text are increasing, but processing such text remains problematic. Although existing biomedical natural language processing (NLP) tools are appealing, most were developed to process clinician- or researcher-generated text, such as clinical notes or journal articles. In addition to being constructed for different types of text, other challenges of using existing NLP include constantly changing technologies, source vocabularies, and characteristics of text. These continuously evolving challenges warrant the need for applying low-cost systematic assessment. However, the primarily accepted evaluation method in NLP, manual annotation, requires tremendous effort and time. OBJECTIVE: The primary objective of this study is to explore an alternative approach-using low-cost, automated methods to detect failures (eg, incorrect boundaries, missed terms, mismapped concepts) when processing patient-generated text with existing biomedical NLP tools. We first characterize common failures that NLP tools can make in processing online community text. We then demonstrate the feasibility of our automated approach in detecting these common failures using one of the most popular biomedical NLP tools, MetaMap. METHODS: Using 9657 posts from an online cancer community, we explored our automated failure detection approach in two steps: (1) to characterize the failure types, we first manually reviewed MetaMap's commonly occurring failures, grouped the inaccurate mappings into failure types, and then identified causes of the failures through iterative rounds of manual review using open coding, and (2) to automatically detect these failure types, we then explored combinations of existing NLP techniques and dictionary-based matching for each failure cause. Finally, we manually evaluated the automatically detected failures. RESULTS: From our manual review, we characterized three types of failure: (1) boundary failures, (2) missed term failures, and (3) word ambiguity failures. Within these three failure types, we discovered 12 causes of inaccurate mappings of concepts. We used automated methods to detect almost half of 383,572 MetaMap's mappings as problematic. Word sense ambiguity failure was the most widely occurring, comprising 82.22% of failures. Boundary failure was the second most frequent, amounting to 15.90% of failures, while missed term failures were the least common, making up 1.88% of failures. The automated failure detection achieved precision, recall, accuracy, and F1 score of 83.00%, 92.57%, 88.17%, and 87.52%, respectively. CONCLUSIONS: We illustrate the challenges of processing patient-generated online health community text and characterize failures of NLP tools on this patient-generated health text, demonstrating the feasibility of our low-cost approach to automatically detect those failures. Our approach shows the potential for scalable and effective solutions to automatically assess the constantly evolving NLP tools and source vocabularies to process patient-generated text.

Health Vlogs as Social Support for Chronic Illness Management.

Studies have shown positive impact of video blogs (vlogs) on patient education. However, we know little on how patient-initiated vlogs shape the relationships among vloggers and viewers. We qualitatively analyzed 72 vlogs on YouTube by users diagnosed with HIV, diabetes, or cancer and 1,274 comments posted to the vlogs to understand viewers' perspectives on the vlogs. We found that the unique video medium allowed intense and enriched personal and contextual disclosure to the viewers, leading to strong community-building activities and social support among vloggers and commenters, both informationally and emotionally. Furthermore, the unique communication structure of the vlogs allowed ad hoc small groups to form, which showed different group behavior than typical text-based social media, such as online communities. We provide implications to the Health Care Industry (HCI) community on how future technologies for health vlogs could be designed to further support chronic illness management.

Designing Communication Feedback Systems To Reduce Healthcare Providers' Implicit Biases In Patient Encounters.

Healthcare providers' implicit bias, based on patients' physical characteristics and perceived identities, negatively impacts healthcare access, care quality, and outcomes. Feedback tools are needed to help providers identify and learn from their biases. To incorporate providers' perspectives on the most effective ways to present such feedback, we conducted semi-structured design critique sessions with 24 primary care providers. We found that providers seek feedback designed with transparent metrics indicating the quality of their communication with a patient and trends in communication patterns across visits. Based on these metrics and trends, providers want this feedback presented in a dashboard paired with actionable, personalized tips about how to improve their communication behaviors. Our study provides new insights for interactive systems to help mitigate the impact of implicit biases in patient-provider communication. New systems that build upon these insights could support providers in making healthcare more equitable, particularly for patients from marginalized communities.

ConverSense: An Automated Approach to Assess Patient-Provider Interactions using Social Signals.

Patient-provider communication influences patient health outcomes, and analyzing such communication could help providers identify opportunities for improvement, leading to better care. Interpersonal communication can be assessed through "social-signals" expressed in non-verbal, vocal behaviors like interruptions, turn-taking, and pitch. To automate this assessment, we introduce a machine-learning pipeline that ingests audio-streams of conversations and tracks the magnitude of four social-signals: dominance, interactivity, engagement, and warmth. This pipeline is embedded into ConverSense, a web-application for providers to visualize their communication patterns, both within and across visits. Our user study with 5 clinicians and 10 patient visits demonstrates ConverSense's potential to provide feedback on communication challenges, as well as the need for this feedback to be contextualized within the specific underlying visit and patient interaction. Through this novel approach that uses data-driven self-reflection, ConverSense can help providers improve their communication with patients to deliver improved quality of care.

Caregiver perspectives on receiving gender-affirming care with their transgender and gender diverse adolescents via telemedicine.

Telemedicine may help improve access to gender-affirming care for transgender and gender diverse (TGD) adolescents. Parents or guardians (i.e., caregivers) of TGD adolescents play a critical role in supporting TGD adolescents in accessing this care. The purpose of this study was to explore caregivers' perspectives regarding their adolescent receiving pediatric gender-affirming care via telemedicine to help providers and health systems optimize this modality for future care delivery. Caregivers (n=18) of TGD adolescents ages 14-17 participated in semi-structured, individual interviews that were transcribed and analyzed qualitatively. Caregivers cited participating in visits from their home environment, decreased anxiety, COVID safety, ability to have more family members attend, no transportation demands, and effective delivery of care as advantages of telemedicine. Disadvantages included dysphoria or discomfort with self-image, impersonal provider-patient interactions, video teleconferencing fatigue, difficulty with portal navigation, connectivity issues, and lack of privacy. Caregivers largely deferred to their child's preference regarding the choice of visit modality, but many reported a preference for the first to be conducted in-person, and follow-up and less complex visits via telemedicine. Health systems should consider these perspectives as they adapt telemedicine infrastructure to better meet the needs of patients and their families.

Desire for Gender-Affirming Medical Care Before Age 18 in Transgender and Nonbinary Young Adults.

Purpose: We aimed to understand transgender and nonbinary (TNB) young adults' desire to receive gender-affirming medical care (GAMC) before age 18 and identify barriers and facilitators to receiving this care in adolescence. Methods: A cross-sectional survey was administered to TNB young adults presenting for care between ages 18 and 20 in 2023. Descriptive statistics characterized the sample, χ2 tests with post hoc pairwise comparisons identified differences in desire for gender-affirming medications, outness, and parental consent by gender identity and sex assigned at birth, and t-tests evaluated differences in barriers and facilitators to receiving care by outness to parents. Results: A total of 230 TNB respondents had complete data. Nearly all (94.3%) indicated they desired GAMC before age 18. Half (55.7%) of the respondents reported being out about their gender identity to a parent before age 18. Outness, discussing desire for GAMC, and asking for consent to receive GAMC from a parent were significantly more common among participants who identified as men compared to those who identified as women and among those assigned female at birth compared to those assigned male at birth. No such differences emerged when comparing nonbinary individuals to those who identified as men or women. Lack of parental willingness to consent for GAMC was cited as the primary contributor of not having received care in adolescence. Conclusions: Many TNB young adults desire GAMC in adolescence; however, lack of parental support is a key barrier to receiving this care, suggesting a need for more readily available resources for parents to support TNB adolescents.

Text classification for assisting moderators in online health communities.

OBJECTIVES: Patients increasingly visit online health communities to get help on managing health. The large scale of these online communities makes it impossible for the moderators to engage in all conversations; yet, some conversations need their expertise. Our work explores low-cost text classification methods to this new domain of determining whether a thread in an online health forum needs moderators' help. METHODS: We employed a binary classifier on WebMD's online diabetes community data. To train the classifier, we considered three feature types: (1) word unigram, (2) sentiment analysis features, and (3) thread length. We applied feature selection methods based on χ² statistics and under sampling to account for unbalanced data. We then performed a qualitative error analysis to investigate the appropriateness of the gold standard. RESULTS: Using sentiment analysis features, feature selection methods, and balanced training data increased the AUC value up to 0.75 and the F1-score up to 0.54 compared to the baseline of using word unigrams with no feature selection methods on unbalanced data (0.65 AUC and 0.40 F1-score). The error analysis uncovered additional reasons for why moderators respond to patients' posts. DISCUSSION: We showed how feature selection methods and balanced training data can improve the overall classification performance. We present implications of weighing precision versus recall for assisting moderators of online health communities. Our error analysis uncovered social, legal, and ethical issues around addressing community members' needs. We also note challenges in producing a gold standard, and discuss potential solutions for addressing these challenges. CONCLUSION: Social media environments provide popular venues in which patients gain health-related information. Our work contributes to understanding scalable solutions for providing moderators' expertise in these large-scale, social media environments.

"I miss work:" employment experiences and attitudes of adults with acquired disabilities who use assistive technologies.

PURPOSE: This study explored employment experiences and attitudes of adults who acquired mobility, motor, and/or communication disabilities and who use assistive technologies. MATERIALS AND METHODS: Semi-structured interviews were conducted with seven adults about their employment experiences after acquiring their disabilities. After analysis of interview results, six participants completed surveys about their attitudes towards crowdsourcing and remote work. RESULTS: Findings indicate that adults can continue working with accommodations when they feel supported and valued by their employer. However, participants frequently compared their pre-disability work performance with their post-disability performance and at times, left work because they did not feel they were performing to their own expectations, regardless of the support of their employer. Participants experienced feelings of loss, regret, and identity change after acquiring their disabilities and after leaving work. Most participants did not have specific knowledge of available work alternatives which could accommodate their health and accessibility needs. When presented with accessible work alternatives, the majority of participants increased their interest in learning more about those options. CONCLUSIONS: Whether through work or other pursuits, individuals in this population retain a strong desire to participate and contribute to society. However, it should not be assumed that adults with acquired disabilities are inherently aware of available, alternative options to traditional work. Future research on increasing awareness of accessible options for societal engagement for this population should be explored.

Clinicians should not assume that clients are aware of the available range of work accommodations and alternatives.Clinicians should share a variety of accessible, computer-based, flexible work alternatives with clients, including volunteer and active leisure activities.Rehabilitation for adults with acquired disabilities should include addressing a change in identity, particularly when it comes to identity associated with contributing to society.

Understanding Transgender and Gender-Diverse Youth's Experiences Receiving Care via Telemedicine: Qualitative Interview Study.

BACKGROUND: Access to virtual care has increased since the beginning of the COVID-19 pandemic, yet little is known about transgender and gender-diverse (TGD) youth's experiences and perspectives on receiving care via telemedicine. OBJECTIVE: The purpose of this study was to explore these experiences to (1) inform necessary changes to the provision of pediatric gender-affirming care and (2) help providers and health systems determine if and how telemedicine should be made available post pandemic. METHODS: Youth (aged 14-17 years) who completed a telemedicine visit in the Seattle Children's Gender Clinic were invited to participate in a semistructured interview exploring perceived advantages or disadvantages of telemedicine and preferred visit modalities. Interview transcriptions were analyzed by 2 research team members using an inductive thematic analysis framework. RESULTS: A total of 15 TGD youth completed an interview. Commonly cited advantages of telemedicine were convenience and comfort with having visits in their own environments. Reported disadvantages included technical issues, discomfort with the impersonal nature, lack of familiarity with the platform, and privacy concerns. Overall, slightly more youth preferred in-person visits over telemedicine, referencing both specific characteristics of the clinical visit (ie, initial vs return and complexity) and proximity to the clinic as reasons for this preference. Although a plurality of TGD youth preferred in-person visits, they also recognized the value of telemedicine and the impact it may have in facilitating access to care. CONCLUSIONS: Given the variations in needs and visit complexity, our study supports the provision of both in-person and telemedicine modalities as options for pediatric gender-affirming care.

Pediatric Primary Care Providers' Perspectives on Telehealth Platforms to Support Care for Transgender and Gender-Diverse Youths: Exploratory Qualitative Study.

BACKGROUND: Access to gender-affirming care services for transgender and gender-diverse youths is limited, in part because this care is currently provided primarily by specialists. Telehealth platforms that enable primary care providers (PCPs) to receive education from and consult specialists may help improve the access to such services. However, little is known about PCPs' preferences regarding receiving this support. OBJECTIVE: This study aimed to explore pediatric PCPs' perspectives regarding optimal ways to provide telehealth-based support to facilitate gender-affirming care provision in the primary care setting. METHODS: PCPs who had previously requested support from the Seattle Children's Gender Clinic were recruited to participate in semistructured, 1-hour web-based interviews. Overall, 3 specialist-to-PCP telehealth modalities (tele-education, electronic consultation, and telephonic consultation) were described, and the participants were invited to share their perspectives on the benefits and drawbacks of each modality, which modality would be the most effective, and the most important characteristics or outcomes of a successful platform. Interviews were transcribed and analyzed using a reflexive thematic analysis framework. RESULTS: The interviews were completed with 15 pediatric PCPs. The benefits of the tele-education platform were developing a network with other PCPs to facilitate shared learning, receiving comprehensive didactic and case-based education, having scheduled education sessions, and increasing provider confidence. The drawbacks were requiring a substantial time commitment and not allowing for real-time, patient-specific consultation. The benefits of the electronic consultation platform were convenient and efficient communication, documentation in the electronic health record, the ability to bill for provider time, and sufficient time to synthesize information. The drawbacks of this platform were electronic health record-related difficulties, text-based communication challenges, inability to receive an answer in real time, forced conversations with patients about billing, and limitations for providers who lack baseline knowledge. With respect to telephonic consultation, the benefits were having a dialogue with a specialist, receiving compensation for PCP's time, and helping with high acuity or complex cases. The drawbacks were challenges associated with using the phone for communication, the limited expertise of the responding providers, and the lack of utility for nonemergent issues. Regarding the most effective platform, the responses were mixed, with 27% (4/15) preferring the electronic consultation, 27% (4/15) preferring tele-education, 20% (3/15) preferring telephonic consultation, and the remaining 27% (4/15) suggesting a hybrid of the 3 models. CONCLUSIONS: A diverse suite of telehealth-based training and consultation services must be developed to meet the needs of PCPs with different levels of experience and training in gender-affirming care. Beyond the widely used telephonic consultation model, electronic consultation and tele-education may provide important alternative training and consultation opportunities to facilitate greater PCP independence and promote wider access to gender-affirming care.

Barriers Pediatric PCP's Identify To Providing Gender-Affirming Care For Adolescents.

PURPOSE: Both affirming environments and access to gender-affirming medical care have a positive impact on the mental health of transgender and gender diverse (TGD) youth, however, many TGD youth experience barriers in accessing this care. Pediatric primary care providers (PCPs) can play an important role in expanding access to gender-affirming care for TGD youth; however, few currently provide this care. The purpose of this study was to explore pediatric PCPs' perspectives regarding barriers they experience to providing gender-affirming care in the primary care setting. METHODS: Pediatric PCPs who had sought out support from the Seattle Children's Gender Clinic were recruited via email to participate in semistructured, one-hour Zoom interviews. All interviews were transcribed and then subsequently analyzed in Dedoose qualitative analysis software using a reflexive thematic analysis framework. RESULTS: Provider participants (n = 15) represented a wide range of experiences with respect to years in practice, number of TGD youth seen, and practice location (urban, rural, suburban). PCPs identified both health system and community-level barriers to providing gender-affirming care to TGD youth. Health system-level barriers included: (1) lack of foundational knowledge and skills, (2) limited clinical decision-making support, and (3) health system design limitations. Community-level barriers included (1) community and institutional biases, (2) provider attitudes regarding gender-affirming care provision, and (3) challenges identifying community resources to support TGD youth. DISCUSSION: A multitude of health system and community-level barriers must be overcome in the pediatric primary care setting to ensure that TGD youth receive timely, effective, and more equitable gender-affirming care.

Adolescent and Caregiver Perspectives on Receiving Gender-Affirming Care in Primary Care.

BACKGROUND: Transgender and gender-diverse (TGD) adolescents experience barriers to receiving gender-affirming care. Delivering services in the pediatric primary care setting may help facilitate improved access. With this study, we aimed to explore TGD adolescents' and caregivers' experiences receiving primary care services and their perspectives regarding gender-affirming care delivery in pediatric primary care. METHODS: TGD adolescents aged 14 to 17 and caregivers of TGD adolescents currently receiving gender-affirming medical care participated in 1-hour-long, semi-structured, individual, virtual interviews. Each interview was recorded and transcribed. Transcripts were then individually coded, and themes were generated iteratively by using a reflexive thematic analysis framework. Recruitment of each group continued until thematic saturation was reached. RESULTS: A total of 33 participants (15 adolescents and 18 caregivers) completed interviews. Adolescent participants (mean age of 15.7 years) predominantly identified as transmasculine or trans male (73%), and caregiver participants were predominantly mothers (83.3%). Four themes were identified, which included (1) barriers, such as microaggressions and poor psychosocial support, (2) benefits, such as existing trusted relationships with primary care providers (PCPs) and convenience, (3) improvement strategies, such as training and interdisciplinary collaboration, and (4) opportunities for integrating primary care and specialty gender-affirming care. CONCLUSIONS: TGD adolescents and their caregivers reported previous negative interactions with PCPs; however, some desired to receive gender-affirming care in this setting, citing increased convenience, efficiency, and availability. Participants highlighted an ongoing need for further work to provide resources, education, and training to PCPs and their staff and improve PCP-to-specialist communication and collaboration.