Subspecialty Clinic Research Articles

Piloting an Educational Module on Consenting for Exome Sequencing Among Non-Genetics Physicians at a Medical Institution

Introduction: Demand for genetic testing has expanded exome sequencing (ES) utilization into subspecialty clinics without genetics providers. This trend forces non-genetics physicians (NGPs) to facilitate patient consent for genetic testing. However, research on NGPs' knowledge of consent elements (CK) required for ES has not been explored. Methods: Columbia University NGPs were invited to take a survey (premodule survey [PrS]) assessing CK for ES. Educational modules on ES were then created and sent to NGP participants. A postmodule survey (PoS) was sent to NGPs a month later to assess the change in CK scores. Alpha was set at ≤0.05. Results: Nineteen participants completed the PrS and PoS. Overall PrS CK scores were low (mean = 8, SD 1.6). There was no difference in PrS CK scores between attendings and residents/fellows (P = .2), and PrS CK scores did not correlate with time since medical school graduation (P = .9). PoS CK scores were higher than PrS CK scores (P = .03). Most NGPs (74%) were satisfied with the module. Conclusions: Our findings suggest a need for continuing education of both new and experienced NGPs on best practices for consenting for ES. An online module with information tailored to different specialties could be an effective format for delivering this education.

Achieving RoutIne Screening for Emotional health (ARISE) in pediatric subspecialty clinics.

This study aims to describe the experience of implementing a psychosocial distress screening system for children with serious or chronic medical conditions. Achieving RoutIne Screening for Emotional health (ARISE) was developed to systematically evaluate psychosocial distress in children with serious medical or chronic medical illnesses, by integrating patient-reported outcome measures (PROM) into care delivery. ARISE was developed using a user-centered approach with extensive input from patients, families, and healthcare professionals to overcome barriers to routine PROM collection and integration into care as usual. It comprises a system to capture PROMs and then relay results to clinicians for changing care. We sought to implement ARISE at four subspecialty pediatric clinics caring for patients with cystic fibrosis, sickle cell disease, hemophilia, and neurological malignancy. Problems with acceptability, appropriateness, and feasibility represented barriers to implementation which were overcome by modifying the intervention using stakeholder input during the planning phase, leading to broad program acceptance. ARISE was implemented in three of the four clinics, in which 79.8% of eligible children and their family completed PROMs. The ARISE program demonstrated the feasibility and effectiveness of integrating psychosocial screenings into subspecialty pediatric clinics, thereby enhancing the identification and management of psychosocial issues in children with serious and chronic medical illnesses.

02 Youth perspectives on virtual healthcare appointments in Nova Scotia – a qualitative study

Abstract Background With the onset of the COVID-19 pandemic, public safety measures required healthcare providers to look for alternative ways of delivering care in a safe and timely fashion. This led to an escalated use of virtual appointments to continue to provide patient care. For future decision-making regarding virtual care in our community, we must consider the youth perspective to ensure our healthcare delivery meets the needs of this patient population. Objectives Our study aims to determine the perspectives of local youth patients on their experience with virtual and in-person paediatric clinic appointments. Design/Methods Participants were recruited from general and subspecialty paediatrics clinics at the IWK Health Centre, in Nova Scotia, Canada. Eligibility criteria included attending both a virtual and in-person appointment from 2019-2022. Participants completed a semi-structured interview and provided their perspective on comfort level, accessibility, participation, and general preferences between virtual and in-person clinics. Transcribed data was analyzed using thematic analysis with both inductive and deductive approaches to identify themes. Results 12 participants aged 14-18 provided interviews. Participants represented clinical areas of general paediatrics, rheumatology, diabetes clinic and gender clinic. Virtual appointments were preferred for convenience, flexibility, and efficiency during shorter conversations. In-person appointments were preferred for physical concerns, communication and relationship building. Some youth appreciated talking face-to-face for the ease of communication, feeling able to “get the point across” in this setting. The value of the in-person connection with their healthcare team was expressed by some youth, and building this relationship held importance. When appointments provided education, youth preferred for that information to be delivered in-person. Participants overall felt more comfortable during virtual appointments, and participation levels varied based on the individual and not based on an appointment being virtual versus in-person. Accessibility issues were predominantly associated with in-person appointments, with barriers including access to transportation, time spent attending appointment, and the cost of travelling to a tertiary care centre. Conclusion Youth patients have unique and individual preferences for virtual versus in-person appointments. This study provided insight into situations when each appointment type should be considered and emphasizes the importance of including the youth in the decision-making process around appointment scheduling when possible.

Resistant Hypertension: A Brief Review of Pathophysiology.

A 52-year-old male comes to the internal medicine clinic for a follow-up for the management of hypertension. He was initially diagnosed with hypertension 5 years ago. His other past medical history includes obesity and hyperlipidemia. His current medications currently include losartan 100 mg daily, hydrochlorothiazide 25 mg, and amlodipine 10 mg. His physical exam is significant for an elevated in-office blood pressure of 160/105 mmHg, BMI 38, and neck circumference >40 cm. He also reports snoring at night and having significant daytime sleepiness despite getting over 8 hours of sleep each night. This patient meets the most recent diagnostic criteria per the American Heart Association for resistant hypertension. Resistant hypertension is an increasingly prevalent phenotype encountered in both primary care and subspecialty clinics. Multiple comorbidities, including obesity, sleep apnea, chronic kidney disease, heart failure, and diabetes mellitus, are associated with resistant hypertension. Our understanding of the potential etiologies for this condition continues to evolve rapidly. We used a narrative review to explore four research areas in the pathophysiology of resistant hypertension (the sympathetic nervous system, aldosterone excess, endothelial dysfunction, and inflammation) and explore the novel therapies currently in development.

Pickleball and the Rising Incidence of Achilles Tendon Injuries in the Elderly.

With its rising popularity of pickleball, particularly in the aging population, comes concern for potential injuries that previously rarely affected this patient cohort. The purpose of this study was to investigate the trends of pickleball-related Achilles tendon injuries. A retrospective case series was performed to determine the trends associated with pickleball-related Achilles tendon injuries over the last 10 years. A database search of all Achilles tendon ruptures (ICD-10 S86.0) presenting to a large, multistate, subspecialty referral orthopaedic clinic between January 2013 and June 2023 were identified and included in the study. Pickleball-related injuries were identified via query and confirmed with manual chart review. The incidence of pickleball-related injuries, as well as patient demographics and rate of surgery was determined and compared with the total population during that time period. A total of 2684 patients who suffered an Achilles tendon injury between January 2013 and June 2023 were identified, with 43 patients meeting the inclusion criteria for pickleball-related Achilles tendon ruptures. The number and overall incidence of pickleball-related Achilles tendon injuries has been increasing since 2016, excluding 2020 where there was a large decrease likely due to the COVID-19 epidemic. Pickleball was associated with older age at time of injury (64.5 vs 48.6, P < .001) as well as a lower BMI (26.6 vs 29.4, P < .001). In addition, patients who sustained a pickleball-related Achilles tendon injury were more likely to undergo surgery (67.4% vs 45.4%, P = .008). The rising popularity of pickleball and its associated injuries poses a significant risk to the aging population, with Achilles tendon injuries occurring in older individuals and resulting in a higher likelihood of undergoing surgery. IV; retrospective case-series.

Patient-Centered Cost Saving and Positive Environmental Impact With the Introduction of Telehealth Services at a Single Center.

To establish the patient-specific cost and time savings associated with telemedicine with the secondary environmental benefits of virtual visits within a tertiary referral center sub-specialty urology clinic. An electronic health record query was made of all urology telehealth visits that have occurred between October 4, 2020 and October 10, 2020 at a single academic center. We evaluated the cost of travel for an in-person visit based on zip code data. To adjust for productivity loss, the cost of missed work was added as either full day or half day-based distance and average compensation per day based on zip code data. Environmental impact was calculated using average CO2 emissions per mile not traveled. There were 6444 patients seen in the urology clinic via telehealth during the 6-month period. Urology patients traveled on average 69 ± 148 miles round-trip for an appointment. The average cost savings per patient including the cost of the gas and time away from work was $152.78 ± $105.90. Overall, over a 6-month period, the total cost savings was $984,534.73 for the 6444 patients seen via telemedicine. There was also a significant environmental impact of the decreased travel burden with 153.36 metric tons of CO2 emissions eliminated. With the implementation of telehealth during the COVID-19 pandemic, patients have been able to save a substantial amount of time and money primarily driven by the decreasing work hours lost and cost of travel.

Neurologists' Attitudes and Perceptions on Palliative Care: A Qualitative Study.

Despite significant advances in the treatment of neurologic disorders, many conditions require complex care planning and advanced care planning. Neurologists are in a unique position because they are integral in providing patient centered care, understanding neurologic disease and illness trajectory, and how disease can affect patients' sense of self and values. Currently, little is known about neurologists' perceptions and challenges in care planning and palliative care for their patients. Neurologists from one Canadian academic institution participated in a 30-minute semistructured interview from November 2022 to April 2023. Interviews were conducted until saturation was reached and confirmed. Interviews occurred online through a secure platform or in-person and were recorded. Data were analyzed using a constant comparative method using constructivist grounded theory. Member checking was conducted post interview. Ten neurologists participated across a broad spectrum of neurology experience and subspecialties. We developed a detailed theory of understanding neurologists' attitudes and perceptions of palliative care. When neurologists delay or fail to initiate care planning discussions or palliative care, it results from a complex interplay between patient, physician, and resource accessibility factors. Certain contextual factors, such as a first visit or follow-up, inpatient vs outpatient setting, clinic culture, and the type of clinic practice, are factors that can influence these conversations. As a result, physicians may fail to use available resources, or they may involve other care providers or refer to subspecialty neurologic clinics. However, this delay can still lead to patient and provider harm. Opportunities to improve care exist with continuing education opportunities for trainees and staff, collaboration with palliative care specialists, and health systems support, such as increasing public awareness to address misconceptions about palliative care and resource availability. Our findings identify that failure or delay to initiate care planning and palliative care by neurologists results from a complex interplay between local culture, experience, context, practice type, and patient factors. Opportunities to improve care include increasing educational opportunities, building integrated and collaborative practices, and dedicated health systems support.

Integrating Artificial Intelligence (AI) in Nephrology Workflows: Evaluating ChatGPT's Performance in Triaging Patients to Nephrology Subspecialty Clinics

Integrating Artificial Intelligence (AI) in Nephrology Workflows: Evaluating ChatGPT's Performance in Triaging Patients to Nephrology Subspecialty Clinics

Closing the loop: Utilizing advanced practice providers for a 7-day post hospital discharge follow-up of GI oncology patients at an academic cancer center.

304 Background: Acute care visits for oncology patients may be preventable, especially for high-risk patients with a recent hospitalization. During our 2023 Fiscal Year, we observed an approximate 22% rate for 30 day readmissions for oncology patients, with our gastrointestinal (GI) oncology patients having the most readmissions, at Stanford Cancer Center. Readmission review through clinician surveys suggested that about 28% of unplanned admissions may have been preventable, with root cause analysis identifying timely access to ambulatory symptom management as a major driver. Methods: We established a cancer transitional care (CTC) clinic to provide consistent and timely post-discharge follow-up for oncology patients. We initiated a pilot program for GI oncology patients (chosen due to high acuity and readmission rate) who had an unplanned admission to Stanford Hospital. We aimed to schedule a visit with an advanced practice provider (APPs) within 7 days of discharge. The A3 problem solving process was implemented weekly by a multidisciplinary team. We created a referral in our electronic medical record. Inpatient oncology teams were instructed to place this referral within 3 days before discharge, allowing for adequate patient and family education regarding the goals of CTC visits and ample time for the post-discharge CTC visit to be scheduled prior to patient discharge. Prior to CTC visits, pharmacists performed outreach to reconcile medications to reduce medication errors. Eight oncology APPs were trained regarding the focused nature of a CTC visit, including symptom management, medication reconciliation, and goals of care discussions. Results: At baseline, from June 1 and November 30th, 2023, 61% of patients had follow-up within 7 days of discharge and 12% of patients with none. Between December 13, 2023 and April 19, 2024, CTC implementation resulted in a total of 220 referrals for GI oncology discharges, yielding 144 CTC clinic visits. Resulting in 66.1% of patients having follow up within 7 days of discharge and 9% of patients had no follow up scheduled. 79% of visits were within 7 days of discharge, representing a 29% increase in our goal scheduling timeline. The average time between discharge date and CTC visit was 6.2 days. Sixty six patients also received detailed pharmacy reviews with medication reconciliation and addressing medication access issues. Conclusions: Through our CTC clinic, we standardized post-discharge follow-up access for GI oncology patients, reducing variability in follow up. We plan to disseminate this model across medical oncology subspecialty clinics. Barriers included standardization of follow up with clinical team and expectations for the visit for both patients and clinicians. Future directions include integrating same day symptom management and urgent care access.

Racial and Ethnic Disparities in Pediatric Atopic Dermatitis.

Atopic dermatitis (AD) is one of the most common chronic childhood conditions. Disparities in treatment and access to care can result in poor disease control and decreased quality of life. The aim of this study was to determine whether race and ethnicity affect treatment and healthcare utilization for pediatric atopic dermatitis in central Florida. This study of 4008 children with AD compared healthcare utilization and management using the numbers of AD-related healthcare visits, prescriptions, testing, and subspecialty referrals. Multivariable models were used to compare racial and ethnic groups (Black, Hispanic, Asian, and Other) with the reference group of non-Hispanic White, while adjusting for common confounders. The mean number of urgent care visits for the Hispanic group was 1.61 times that of the non-Hispanic White group, and the mean number of emergency department visits was 3.71 (P < 0.001) times the reference group. Black or African American patients had a mean number of emergency department visits that was 1.52 times that of non-Hispanic White patients (P = 0.021). The mean count of primary care visits was lower among Hispanic patients and higher among Asian patients (P = 0.012). Visits to subspecialty clinics and hospitalizations did not differ significantly. There were no consistent patterns in differences of AD-related prescriptions, testing, or subspecialty referrals. This study indicates that racial and ethnic disparities exist in healthcare utilization in pediatric AD. The underlying factors contributing to these disparities need to be further studied and addressed to reach health equity within pediatric AD.

Using a Previsit Questionnaire for Initial Visits in a Pediatric Mitochondrial Clinic: Perspectives of Parents, a Specialty Physician, and a Clinical Coordinator.

Objective: In this study, we assessed the usefulness of a previsit questionnaire for children who were referred for an initial evaluation in a mitochondrial subspecialty clinic. We explored the themes regarding parent's questions, concerns, and goals. We aimed to add to existing knowledge about the usefulness of previsit questionnaires in a pediatric specialty setting from the perspective of parents, the specialist, and the clinical coordinator. Method: We enrolled 25 patients and their parent(s) over 25 months. Questionnaires were completed by the parent(s), the clinical coordinator, and the mitochondrial specialist. Descriptive statistics and thematic analysis were used to summarize results. Results: Parental responses suggested that they are most concerned about their child's clinical problems, communication, language and developmental delays, disease progression and prognosis, understanding mitochondrial disease, quality of life, and physical challenges including muscle and energy problems. Parents felt the previsit questionnaire was very helpful for both the doctor and for themselves to be prepared for their visit. The specialist and the clinical coordinator also found it to be helpful. Parental comments suggested that they felt that writing down the story of their child's life was helpful for the provider, allowed time for reflection, and improved the appointment experience. Some felt it was a difficult or redundant activity. Conclusion: Parents were often pleased to complete the previsit questionnaire. This allowed them to highlight concerns and share information that they wanted the care team to know about their child. We revised the tool based on feedback from parents and the specialist and will continue to use it in our clinic.

The Effect of Shared Decision-making on Decision Self-efficacy and Decisional Conflict of Women with Low-grade Squamous Intraepithelial Lesion in Cervical Cytology: An Experimental Study

Background: Women often face decisional challenges and hesitation while choosing the appropriate method to follow up on their abnormal results of cervix cytology. Objective: The present study aimed to determine the effect of shared decision-making (SDM) on decision self-efficacy (DSE) and decisional conflict (DC) about follow-up methods among women with abnormal cervix cytology results. Methods: This interventional study was performed on 54 women referred to the subspecialty clinic of gynecologic oncology. The women were assigned into intervention and control groups using a randomized block design with block sizes of 4 and 6 and an allocation ratio of 1:1. The intervention group received counseling based on the SDM and a decision aid (DA) booklet. The data collection tools included the questionnaires of the demographic and obstetrics characteristics, DC, DSE, and Decision Regret. The collected data were analyzed using SPSS24 software, and independent t-tests and ANCOVA were used. Results: After the intervention, the total mean score of the DC in the intervention group was significantly lower than that in the control group [MD: -22.84 with 95% CI: -23.52 to -21.95, (P &lt;0.001)]. The mean score of DSE in the intervention group was significantly higher than that in the control group [MD: 14.56 with 95% CI: 21.47 to 7.65, (P &lt;0.001)]. Conclusion: The present study results indicated that counseling based on the SDM effectively promotes DSE and reduces DC among women with minor abnormal cervical cytology. Therefore, it is recommended that healthcare providers use SDM for women with abnormal cervical cancer screening results.

Abstract P407: Sex and age differences in cardiovascular health in youth referred for hypertension disorders at baseline: A SUPERHERO Registry analysis

Background: The prevalence of hypertension (HTN) and other cardiovascular (CV) disease risk factors (e.g., target organ injury (TOI), obesity, dyslipidemia, hyperglycemia) are increasing steadily in youth. In adults, sex and age differences are established, but remain unknown in children (1–12 years) and adolescents (≥13 years). Objective: Determine sex and age differences in blood pressure (BP) severity, TOI, and CV health in youth referred for HTN disorders. Design/Methods: Cross-sectional analysis of baseline data from the Study of the Epidemiology of Pediatric Hypertension (SUPERHERO), a multisite retrospective Registry of youth referred to subspecialty care for HTN disorders using EHR data. Inclusion criteria were an initial subspecialty clinic visit for HTN disorders identified by ICD-10 codes from 1/1/2016–12/31/2023 and age &lt;19 years. Exclusion criteria were kidney failure on dialysis, kidney transplantation, or pregnancy by ICD-10 codes. The exposures were sex and age at the index visit. Outcomes were BP severity at the index visit based on age, sex, and height-based U.S. guidelines, obesity by BMI or weight-for-length percentiles, and dyslipidemia, hyperglycemia, and TOI (heart and kidney-specific) by ICD-10 codes. We estimated the associations with unadjusted generalized linear models; our directed acyclic graphs did not identify any open, biasing paths necessitating adjustment for confounding factors . Results: Of the 9,356 participants, mean age ± SD was 12.8 ±4.5 years, 36% (n=3,372) were female, 56% (n=5,261) were adolescents, 23% (n=2,162) had stage 2 HTN, 5% (n=451) had TOI (2% heart, 3% kidney), 60% (n=5,655) had obesity, 9% (n=834) had dyslipidemia, and 10% (n=944) had hyperglycemia. Despite less BP severity, females had a higher risk of kidney TOI (RR 1.49, CI: 1.19 to 1.86), hyperglycemia (RR 1.48, CI: 1.3 to 1.68), and number of CV health risk factors (RR 1.1, CI:1.01 to 1.19). Compared to children, adolescents were more likely to have worse BP severity (RR 1.7, CI: 1.6 to 1.8) and HTN (RR 1.1, CI:1.1 to 1.2), and less risk for dyslipidemia (RR: 0.8, 0.7 to 0.9) Conclusions: In a large multisite cohort of youth referred for HTN disorders, females had a 49% higher risk of TOI and 48% greater risk for hyperglycemia despite lower BP severity. Adolescents had more severe BP and HTN compared to children. Next steps in this study include investigating age and sex differences in ambulatory BP and laboratory and echocardiogram data.

Abstract P188: Prevalence of AHA Pediatric Risk Categories in Youth with Hypertension Disorders: a SUPERHERO Analysis

Background: Cardiovascular (CV) risk factors in childhood contribute to the development of CV disease (CVD) later in life. In higher risk groups of youth, increased risk of CV events begins early in adulthood. The American Heart Association (AHA) 2019 CV Risk Reduction in High-Risk Pediatric Patients scientific statement uses medical diagnoses and CV health factors to classify patients into High, Moderate, and At-risk categories. The prevalence of these risk categories in youth with hypertension (HTN) disorders is unknown. Methods: Cross-sectional analysis of baseline electronic health record data from youth referred for HTN disorders in the multisite retrospective SUPERHERO Registry. Inclusion criteria were age &lt;19 years and index subspecialty clinic visit for a HTN disorder by ICD-10 codes from 1/1/2015–12/31/2023. Exclusion criteria were kidney failure on dialysis, kidney transplantation, or pregnancy by ICD-10 codes. We report prevalence of AHA Pediatric Risk Category (High, Moderate, At-risk). We used clinic BP and 2017 AAP Clinical Practice Guidelines to define HTN, clinic BMI percentile to define obesity, and ICD-10 codes to define other risk category medical diagnoses. We report frequencies and proportions in this descriptive analysis. Results: Of 9356 participants, 3544 (37.9%) were female and 5464 (58.4%) were ≥13 years. At the index visit, 5563 participants (63.5%) were hypertensive. A total of 634 participants (6.8%) were classified as High risk, 6100 participants (65.2%) as Moderate risk, and 1034 participants (11.1%) were in the At-risk group. There were 1588 participants (17.0%) not classified into a risk category with available data. Conclusions: In a large cohort of youth with HTN disorders, we found that over 80% of participants were in an AHA pediatric risk category with 63.5% of participants having either primary or secondary HTN. Our findings suggest that if only HTN is used to identify youth at early CV risk, we will miss youth who may benefit from early CV health factor intervention. Next steps include confirming our findings using laboratory and prescription data in defining risk categories and investigating the association of AHA pediatric risk category with target organ injury using laboratory and echocardiogram data.

Abstract P409: Cardiovascular Health Assessment and Intervention by AHA Pediatric Risk Category in Youth with Hypertension Disorders: a SUPERHERO Analysis

Background: Early intervention for modifiable cardiovascular (CV) health factors may decrease incidence of CV disease later in life, though whether youth at higher risk are more likely to have CV assessment and intervention is unknown. Our objective was to determine CV health initial assessment and intervention including echocardiogram (ECHO) order, anti-hypertensive medication prescription, and dietician referral by participant risk category from the 2019 American Heart Association (AHA) CV Risk Reduction in High-Risk Pediatric Patients scientific statement in a large cohort of youth with hypertension (HTN) disorders. Methods: Cross-sectional analysis of baseline data from the SUPERHERO Registry, a multisite retrospective cohort of youth referred for HTN disorders. Inclusion criteria were age &lt;19 years and HTN disorder identified by ICD-10 codes from 1/1/2015–12/31/2023 at index visit to a subspecialty clinic. Exclusion criteria were kidney replacement therapy by dialysis or transplant or pregnancy by ICD-10 codes. Exposure was AHA Pediatric Risk Category (High, Moderate, At-risk). We used clinic BP by U.S. guidelines, clinic BMI percentile to define obesity, and ICD-10 codes to define other risk category medical diagnoses. Outcomes were ECHO order, anti-hypertensive medication prescription, and dietician referral. We used unadjusted generalized linear models. Results: Of 9356 participants, 1034 (11.1%), 6100 (65.2%), and 634 (6.8%) participants were categorized as High, Moderate, and At-risk groups. Overall, 3053 (32.6%) of participants had an ECHO order, 943 (16.4%) had anti-hypertensive medication prescribed, and 661 (7.1%) had a dietician referral. With At-risk group as reference, participants in High or Moderate risk groups were more likely to have an anti-hypertensive medication prescription (RR 3.12; 95% CL 2.23 to 4.36, RR 1.38; 95% CL 1.02 to 1.85). Participants in the Moderate risk group were more likely to have an ECHO order (RR 1.24; 95% CL 1.06 to 1.44). No difference between risk groups was seen for dietician referral. Conclusions: Among a large cohort of youth with HTN disorders, we found that higher risk groups were more likely to have an anti-hypertensive medication prescribed compared to lower risk group. The overall proportion of participants with medication prescriptions, ECHO orders, or dietician referrals were low. Next steps include investigating the association of risk category with target organ injury.

Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs.

Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objectives: We asked outpatient PPC (OPPC) program leaders in the United States about clinic development experiences to gather advice for growing programs. Methods: As part of a larger OPPC study, 48 freestanding children's hospitals with inpatient PPC programs were invited to complete a survey on OPPC. Self-selected participants were sent a follow-up survey soliciting free-text responses about development experiences. Quantitative data were analyzed with descriptive statistics. Qualitative data underwent inductive content analysis. Results: Thirty-six hospitals completed the initial survey, and 28 (78%) reported practicing clinic-based OPPC. Twenty-two of 28 completed program development questions. More than half (12/22, 55%) recommended a minimum total billable full-time equivalent (FTE) ≥3 before expanding into the outpatient setting. About two-thirds (14/22, 64%) suggested a minimum billable FTE ≥4 for 24/7 coverage. Half (50%) reported that their program grew from subspecialty clinics, most frequently hematology-oncology (10/11, 91%). Half (50%) placed initial limits on referrals, with many restricting schedule availability (7/11, 64%). Six of 12 participants (50%) willing to share more about their development experience completed a follow-up survey, from which three themes emerged: program logistics, expectations and boundaries, and establishing role and workflow. Participants focused advice on slow programmatic growth to optimize sustainability. Conclusion: Program leaders offer tangible guidance informed by their OPPC development experience. Future work is needed to leverage this advice within institutions to promote resilient and sustainable PPC growth.

Patient and family contributions to improve the diagnostic process through the OurDX electronic health record tool: a mixed method analysis

BackgroundAccurate and timely diagnosis relies on sharing perspectives among team members and avoiding information asymmetries. Patients/Families hold unique diagnostic process (DxP) information, including knowledge of diagnostic safety blindspots—information that patients/families...

Pediatric subspecialty outreach clinics: reach and impact on access to care

BackgroundRecent research highlighting a shortage of pediatric subspecialists in the United States has shown wide variations in the distance from children to the nearest subspecialists but has not accounted for subspecialty outreach clinics, in which specialists may improve access in rural areas by periodically staffing clinics there. This study aimed to determine the impact of pediatric subspecialty outreach clinics on the driving times to the nearest pediatric subspecialists for children in Maine.MethodsThis cross-sectional study utilized administrative data on the schedule and location of pediatric subspecialty clinics in Maine in 2022 to estimate the driving time from each ZIP-code tabulation area to the nearest subspecialist, with and without the inclusion of outreach clinics. Using 2020 census data, we calculated the median and interquartile ranges of driving times for the state’s overall child population, as well as for children living in urban and rural areas.ResultsOf 207,409 individuals under 20 years old in Maine, 68% were located closer to an outreach location than to a clinical hub. Across the seven subspecialties offering outreach clinics, outreach clinics decreased median driving times to the nearest pediatric subspecialist by 5 to 26 minutes among all children, and by 16 to 46 minutes among rural children.ConclusionsPediatric subspecialty outreach clinics can substantially reduce the driving time to the nearest pediatric subspecialist , especially for children living in rural areas. The use of outreach clinics should be accounted for in research describing the geographic access or barriers to care. Expanding the number of outreach clinics should be considered by policymakers hoping to improve access.

An Institutional Approach to Equity and Improvement in Child Health Outcomes.

Pediatric health inequities are pervasive. Approaches by health care institutions to address inequities often, and increasingly, focus on social needs screening without linked, robust responses. Even when actions in pursuit of health equity do occur within health care institutions, efforts occur in isolation from each other, standing in the way of cross-learning and innovation. Learning network methods hold promise when institutions are confronted with complex, multidimensional challenges. Equity-oriented learning networks may therefore accelerate action to address complex factors that contribute to inequitable pediatric health outcomes, enabling rapid learning along the way. We established an institutional Health Equity Network (HEN) in pursuit of excellent and equitable health outcomes for children and adolescents in our region. The HEN supports action teams seeking to eliminate pediatric health inequities in their clinical settings. Teams deploy targeted interventions to meet patients’ and families’ needs, addressing both medical and social factors affecting health and wellbeing. The primary, shared HEN measure is the equity gap in hospitalization rates between Black patients and all other patients. The HEN currently has 10 action teams and promotes rapid learning and scaling of interventions via monthly “action period calls” and “solutions labs” focused on successes, challenges, and potential common solutions (eg, scaling of existing medical-legal partnership to subspecialty clinics). In this Advocacy Case Study, we detail the design, implementation, and early outcomes from the HEN, our equity-oriented learning network.

Young Adult Patient and Caregiver Perspectives on Transition Readiness in an Inflammatory Bowel Disease Clinic.

When it comes to readiness to transition to an adult subspecialty clinic, perspectives between patients with inflammatory bowel disease (IBD) and their caregivers may differ and influence the ability to successfully transition. Patients with IBD have been shown to suffer from poor transfers of care. There is a need to more efficiently and accurately assess transition readiness to improve the transfer process. Patients transferring to an adult subspecialty clinic and their caregivers were each administered the Transition Readiness Assessment Questionnaire and IBD Self-Efficacy Scale-Adolescent. Differences between patient and caregiver responses and agreement among each dyad were tested. There were 29 dyads of patients and caregivers who enrolled. There was no difference between patient and caregiver total scores. The average level of agreement between patients and caregivers was 78%. There was no association between patient response and their age, gender, ethnicity, age at time of transfer, age at diagnosis, or number of emergency room visits in the prior year. Patient-reported readiness to transition to adult care was confirmed by their caregivers using validated readiness assessment tools. As transition clinics must focus on high-yield interventions, a readiness survey of young adult patients without a survey of their caregivers may be adequate. However, as experts in each patient's journey, caregivers may be utilized when setting goals and priorities for a transition readiness program. The surveys used in this study can be used broadly to aid subspecialty clinics that are trying to improve the transition process.