Minorities Face Delays to Pancreatic Cancer Treatment Regardless of Diagnosis Setting.

INTRODUCTION: Our analysis was designed to characterize the demographics and disparities between the diagnosis of pancreas cancer during emergency presentation (EP) and the outpatient setting (OP) and to see the impact of our institutions pancreatic multidisciplinary clinic (PMDC) on these disparities. METHODS: Institutional review board-approved retrospective review of our institutional cancer registry and PMDC databases identified patients diagnosed/treated for pancreatic ductal adenocarcinoma between 2014 and 2022. Chi-square tests were used for categorical variables, and one-way ANOVA with a Bonferroni correction was used for continuous variables. Statistical significance was set at p < 0.05. RESULTS: A total of 286 patients met inclusion criteria. Eighty-nine patients (31.1%) were underrepresented minorities (URM). Fifty-seven (64.0%) URMs presented during an EP versus 100 (50.8%) non-URMs (p = 0.037). Forty-one (46.1%) URMs were reviewed at PMDC versus 71 (36.0%) non-URMs (p = 0.10). No differences in clinical and pathologic stage between the cohorts (p = 0.28) were present. URMs took 22 days longer on average to receive treatment (66.5 days vs. 44.8 days, p = 0.003) in the EP cohort and 18 days longer in OP cohort (58.0 days vs. 40.5 days, p < 0.001) compared with non-URMs. Pancreatic Multidisciplinary Clinic enrollment in EP cohort eliminated the difference in time to treatment between cohorts (48.3 days vs. 37.0 days; p = 0.151). RESULTS: Underrepresented minorities were more likely to be diagnosed via EP and showed delayed times to treatment compared with non-URM counterparts. Our PMDC alleviated some of these observed disparities. Future studies are required to elucidate the specific factors that resulted in these findings and to identify solutions.

Multidisciplinary Velopharyngeal Dysfunction Evaluation Helps Detect Non-classic Cases of 22q11.2 Deletion.

OBJECTIVE: To explore the role of multidisciplinary velopharyngeal dysfunction (VPD) assessment in diagnosing 22q11.2 deletion syndrome (22q) in children. DESIGN: Retrospective cohort study. SETTING: Multidisciplinary VPD clinic at a tertiary pediatric hospital. PATIENTS, PARTICIPANTS: Seventy-five children with genetically confirmed 22q evaluated at the VPD clinic between February 2007 and February 2023, including both previously diagnosed patients and those newly diagnosed as a result of VPD evaluation. INTERVENTIONS: Comprehensive review of medical records, utilizing ICD-10 codes and an institutional tool for keyword searches, to identify patients and collect data on clinical variables and outcomes. MAIN OUTCOME MEASURES: Characteristics of children with 22q, pathways to diagnosis, and clinical presentations that led to genetic testing for 22q. RESULTS: Of the 75 children, 9 were newly diagnosed with 22q following VPD evaluation. Non-cleft VPI was a significant indicator for 22q in children not previously diagnosed, occurring in 100% of newly diagnosed cases compared to 52% of cases with existing 22q diagnosis (P = .008). Additional clinical findings leading to diagnosis included congenital heart disease, craniofacial abnormalities, and developmental delays. CONCLUSIONS: VPD evaluations, particularly the presence of non-cleft VPI, play a crucial role in identifying undiagnosed cases of 22q. This underscores the need for clinicians, including plastic surgeons, otolaryngologists, and speech-language pathologists, to maintain a high degree of suspicion for 22q in children presenting with VPI without a clear etiology. Multidisciplinary approaches are essential for early diagnosis and management of this complex condition.

Informing a value care model: lessons from an integrated adult neurogenomics clinic.

BACKGROUND: Advances in genomics provide improved opportunities for diagnosis of complex neurogenetic disorders, yet the optimal approach to translate these benefits to the outpatient clinic is unclear. AIMS: We retrospectively reviewed referral indications and outcomes of an integrated multidisciplinary team (MDT) clinic pathway for adults with suspected neurogenetic disorders. The associated cost implications were estimated. METHODS: Consecutive patients who attended the neurogenomics clinic from January 2017 to April 2020 were included. The clinic comprised neurologists, clinical geneticists and genetic counsellors, who assessed each patient concurrently. RESULTS: Ninety-nine new patients were referred spanning 45 different clinical diagnoses. Following MDT clinical assessment, 23% (23/99) of referral diagnoses were revised prior to molecular testing. Eighty-one patients (82%) underwent genetic testing, including 43 exome-based panels, 15 whole-genome sequencing, 14 single gene tests, 27 repeat-primed polymerase chain reaction testing and two chromosomal microarrays. Overall, 33/99 patients (33%) received a diagnosis, either a molecular diagnosis (n = 24, of which 22 were diagnostic and two were predictive) or a clinical diagnosis (n = 9). Of the clinical diagnosis cohort, five patients received a diagnosis without molecular testing and four patients whose negative testing (one diagnostic and three predictive) allowed exclusion of genetic differentials and, hence, confirmation of clinical diagnoses. The diagnostic rate following MDT and diagnostic testing was 30% (28/94), excluding the five predictive testing cases. MDT assessment aligned with eventual molecular diagnoses in 96% of cases. The estimated average costs were AU$1386 per patient undergoing MDT assessment and AU$4159 per diagnosis achieved. CONCLUSIONS: We present an integrated multidisciplinary neurogenomics clinic pathway providing a diagnostic yield of 33% (30% excluding predictive testing cases), with costing implications. The relatively high diagnostic yield may be attributed to multidisciplinary input integrating accurate phenotyping of complex disorders and interpretation of genomic findings.

Developing an adolescent and adult Fontan Management Programme.

Patients with single-ventricle CHD undergo a series of palliative surgeries that culminate in the Fontan procedure. While the Fontan procedure allows most patients to survive to adulthood, the Fontan circulation can eventually lead to multiple cardiac complications and multi-organ dysfunction. Care for adolescents and adults with a Fontan circulation has begun to transition from a primarily cardiac-focused model to care models, which are designed to monitor multiple organ systems, and using clues from this screening, identify patients who are at risk for adverse outcomes. The complexity of care required for these patients led our centre to develop a multidisciplinary Fontan Management Programme with the primary goals of earlier detection and treatment of complications through the development of a cohesive network of diverse medical subspecialists with Fontan expertise.

Cost of Cleft Team Care at an Academic Children's Hospital.

BACKGROUND: The financial burden of cleft-craniofacial team care is substantial, and high costs can hinder successful completion of team care. SOLUTION: Collaboration with multiple stakeholders including providers, insurers, and patient guardians, as well as hospital administrators, is critical to increase patient retention and improve final clinical outcomes. WHAT WE DO THAT IS NEW: At our cleft and craniofacial center, charges for a team care visit fall into one of three categories-hospital fees, professional fees, or external fees. There are four types of hospital fees depending on (1) whether the patient is new or returning, and (2) whether the patient saw ≤4 or ≥5 providers. To further elucidate the financial burden (out-of-pocket costs) directly borne by families of children with cleft lip and/or palate, we conducted a retrospective review of billing records of team care visits made between September 2019 and March 2020. Out-of-pocket costs for a single team care visit (on a commercial insurance plan) ranged from $4 to approximately $1220 and had a median (IQR) of $445 ($118, $749).

Genetic skin disorders: The value of a multidisciplinary clinic.

Genodermatoses are inherited disorders with skin manifestations and can present with multisystem involvement, resulting in challenges in diagnosis and treatment. To address this, the expertise of dermatology and clinical genetics through a multidisciplinary clinic (Genodermatoses Clinic) were combined. A retrospective cohort study of 45 children seen between March 2018 and February 2019 in the Genodermatoses Clinic at The Children's Hospital of Philadelphia was performed. Patient demographics, referral information, genetic testing modality, diagnoses, and patient satisfaction scores were evaluated to assess the clinic's impact. The majority of patients (42.2%) were referred from Dermatology and 86.7% were referred for diagnosis. Two-thirds of the patients were recommended genetic testing, and subsequently 73.3% completed testing. Nearly three-quarters, 26 out of 36 patients (72.2%), of our undiagnosed patients received a clinical and/or molecular diagnosis, which is imperative in managing their care. Twenty-two individuals pursued genetic testing. In eight individuals (36%), molecular testing was diagnostic. However, in two individuals the molecular diagnosis did not completely explain the phenotype. However, there are still obstacles to genetic testing, such as cost of testing and insurance barriers. Almost all (91.4%) rated the Genodermatoses Clinic as "Very Good," the top Press Ganey score. High patient satisfaction scores suggest a positive impact of the Genodermatoses clinic, emphasizing the importance to increase support for the clinical and administrative time needed for patients with genodermatoses.

Outcomes of children and adolescents 1 year after being seen in a multidisciplinary psychogenic nonepileptic seizures clinic.

OBJECTIVE: Psychogenic nonepileptic seizures (PNES) are paroxysmal events that may involve altered subjective experience and change in motor activity with a psychological cause. The aim of this work is to describe a population of pediatric patients with PNES and identify factors predictive of 12-month outcomes. METHODS: We conducted a prospective observational study of children and adolescents referred to the multidisciplinary Nationwide Children's Hospital PNES clinic between November 2017 and July 2019. Information was collected from patients during clinic visits and semistructured follow-up phone calls. Descriptive statistics and Fisher exact test were used for analysis. RESULTS: Of the 139 consecutive patients referred to the PNES clinic, 104 were seen in clinic and 63 answered 12-month follow-up calls. Patients with comorbid epilepsy had increased rates of participation at 12-month follow-up (p = .04). Complete remission was achieved by 32% (20/63) of patients at 12 months. Combined PNES remission and improvement was 89% (56/63) at 12 months. Patients and families who were linked with counseling at 1 month were more likely to achieve remission at 12 months (p = .005). Less than half (44%, 28/63) of patients reached at 12 months had their events documented on video-electroencephalogram (EEG) at diagnosis; however, those who did were not more likely to be accepting of the diagnosis at 12 months (p = 1.0), be linked with counseling at 12 months (p = .59), or be event-free at 12 months (p = .79). SIGNIFICANCE: Remission occurred in one third of patients by 12 months; however, improvement in events was seen in 89%. Connection to counseling by 1 month was associated with increased remission rates at 12 months. Capturing events on video-EEG was not associated with increased acceptance or event freedom at 12 months. Diagnosis should be followed by strong encouragement to connect with counseling quickly to achieve a goal of increasing 12-month PNES remission rates.

Survivors of Congenital Diaphragmatic Hernia Repair Face Barriers to Long-Term Follow-Up Care.

BACKGROUND: Congenital diaphragmatic hernia (CDH) carries high morbidity and mortality, and survivors commonly have neurodevelopmental, gastrointestinal, and pulmonary sequela requiring multidisciplinary care well beyond repair. We predict that following hospitalization for repair, CDH survivors face many barriers to receiving future medical care. METHODS: A retrospective review was conducted of all living CDH patients between ages 0 to 12 years who underwent repair at Riley Hospital for Children (RHC) from 2010 through 2019. Follow-up status with specialty providers was reviewed, and all eligible families were contacted to complete a survey regarding various aspects of their child's care, including functional status, quality of life, and barriers to care. Bivariate analysis was applied to patient data (P < 0.05 was significant) and survey responses were analyzed qualitatively. RESULTS: After exclusions, 70 survivors were contacted. Thirty-three (47%) were deemed lost to follow up to specialist providers, and were similar to those who maintained follow-up with respect to defect severity type (A-D, P = 0.57), ECMO use (P = 0.35), number of affected organ systems (P = 0.36), and number of providers following after discharge (P = 0.33). Seventeen (24%) families completed the survey, of whom eight (47%) were deemed lost to follow up to specialist providers. Families reported distance and time constraints, access to CDH-specific information and care, access to CDH-specific resources, and access to healthcare as significant barriers to care. All respondents were interested in a multidisciplinary CDH clinic. CONCLUSIONS: CDH survivors require multidisciplinary care beyond initial repair, but attrition to follow-up after discharge is high. A multidisciplinary CDH clinic may address caregivers' perceived barriers.

Malnutrition in children with ichthyosis: Recommendations for monitoring from a multidisciplinary clinic experience.

BACKGROUND: Short stature has been reported in congenital ichthyoses (CI), but few data exist on patients' nutritional status. OBJECTIVE: To describe the nutritional status at the first evaluation of children and young adults with CI. METHODS: Prospective observational study of patients assessed at a multidisciplinary clinic. Clinical variables and ichthyosis severity were collected. Anthropometric assessment was made by measuring weight and height, and nutritional status was classified based on the World Health Organization definitions for malnutrition. Analytical assessment included markers of nutritional status, fat-soluble vitamins, and micronutrients. RESULTS: We included 50 patients with a median age of 5 years (IQR, 1.6-10.3). Undernutrition was found in 32% of patients, and 75% of the undernourished children presented growth impairment. Younger children and those with severe ichthyoses were the most affected. Micronutrient deficiencies were found in 60% of patients. Deficiencies of selenium (34%), iron (28%), vitamin D (22%), and zinc (4%) were the most frequent findings. LIMITATIONS: Our small sample includes a heterogeneous group of ichthyoses. CONCLUSION: Children with CI appear to be at risk of undernutrition, especially at younger ages. Nutritional deficiencies are common and should be monitored. Growth failure in children with ichthyosis could be caused by undernutrition and aggravated by nutritional deficiencies.

Contemporary prostate cancer treatment choices in multidisciplinary clinics referenced to national trends.

BACKGROUND: The purpose of this study was to assess treatment choices among men with prostate cancer who presented at The University of Texas MD Anderson Cancer Center multidisciplinary (MultiD) clinic compared with nationwide trends. METHODS: In total, 4451 men with prostate cancer who presented at the MultiD clinic from 2004 to 2016 were analyzed. To assess nationwide trends, the authors analyzed 392,710 men with prostate cancer who were diagnosed between 2004 and 2015 from the Surveillance, Epidemiology, and End Results (SEER) database. The primary endpoint was treatment choice as a function of pretreatment demographics. RESULTS: Univariate analyses revealed similar treatment trends in the MultiD and SEER cohorts. The use of procedural forms of definitive therapy decreased with age, including brachytherapy and prostatectomy (all P < .05). Later year of diagnosis/clinic visit was associated with decreased use of definitive treatments, whereas higher risk grouping was associated with increased use (all P < .001). Patients with low-risk disease treated at the MultiD clinic were more likely to receive nondefinitive therapy than patients in SEER, whereas the opposite trend was observed for patients with high-risk disease, with a substantial portion of high-risk patients in SEER not receiving definitive therapy. In the MultiD clinic, African American men with intermediate-risk and high-risk disease were more likely to receive definitive therapy than white men, but for SEER the opposite was true. CONCLUSIONS: Presentation at a MultiD clinic facilitates the appropriate disposition of patients with low-risk disease to nondefinitive strategies of patients with high-risk disease to definitive treatment, and it may obviate the influence of race.

Medical and gynecological comorbidities in adult women with Turner syndrome: our multidisciplinary clinic experience.

Objective: Women with Turner syndrome (TS) are at increased risk for chronic health conditions. Reports describing the presence of comorbidities in older adult women with TS are limited. This study aimed to examine the prevalence of endocrine, gynecological, and other chronic medical conditions in a cohort of adult TS patients.Methods: A retrospective chart review was conducted on patients seen between 1 February 2015 and 1 July 2018 in a multidisciplinary TS clinic at a university-based ambulatory hospital in Toronto, Canada. All women seen at the TS clinic with a diagnosis of TS aged >18 years were included. The prevalence of diseases was determined overall and stratified by age (<40 and ≥40 years). Statistical comparisons were done using the chi-square test. The main study outcomes included the presence of comorbidities.Results: Of 122 adult women with TS, 24.5% had hypothyroidism, 16% had dysglycemia, and 27.9% had decreased bone mass. Hypothyroidism and dysglycemia were more common among older women (respectively age ≥40 years vs. age <40 years: 36.7% vs. 17.8%, p = 0.018; and 24.5% vs. 5.5%, p = 0.023). Gynecological conditions were identified in 35% of patients and were more common among older women (42.8% age ≥40 years vs. 13.7% age <40 years, p = 0.003). Overall, 41% had hearing impairment, 36.1% had cardiac abnormalities, 14.8% had hypertension, 18.8% had renal abnormalities, and 9% had celiac disease.Conclusions: The results of this study indicate a high prevalence of medical conditions in women with TS, especially those ≥40 years of age. Our study underscores the importance of multidisciplinary adult TS clinics for ongoing screening and management of comorbidities.

Clinical and lung function outcomes in a cohort of children with severe asthma.

BACKGROUND: Uncontrolled severe asthma in children is burdensome and challenging to manage. This study aims to describe outcomes in children with uncontrolled severe asthma managed in a nurse-led severe asthma clinic (SAC). METHODS: This retrospective analysis uses data collected from children referred by a paediatric respiratory specialist to a nurse-led SAC for uncontrolled severe asthma between 2014 and 2019. The pre-clinical assessments included a home visit to assess modifiable factors that could be addressed to improve control. A comprehensive lung function analysis was conducted at each visit. Interventions were personalised and included biologic agents. Statistical analysis was performed using nonparametric, two-tailed Mann-Whitney U-test, the parametric Student's t-test, or analysis of variance (ANOVA) as appropriate. RESULTS: Twenty-three children with a median age of 12 years were seen once, and 16 were followed up. Compared to a non-asthmatic (NA) and asthmatic (A) age-matched cohort, children with severe asthma (SA) had a lower FEV1, and FVC% predicted before and after bronchodilator inhalation, and a higher mean Lung Clearance Index [LCI] (10.5 [SA] versus 7.3 [NA] versus 7.6 [A], p = 0.003). Almost 80% of children with SA had an abnormal LCI, and 48% had a reduced FEV1% at the first SAC visit. Asthma control and FEV1% predicted significantly improved at a follow-up visit, while LCI remained abnormal in the majority of children (83%). CONCLUSION: Over time, many children with severe asthma showed improved clinical outcomes and lung function while lung ventilation inhomogeneities persisted. Future appropriately controlled studies are required to determine if a nurse-led multidisciplinary SAC is associated with better outcomes.

Multidisciplinary clinics reduce treatment costs and improve patient outcomes in diabetic foot disease.

OBJECTIVE: Diabetic foot disease poses a significant and rising financial burden on health care systems worldwide. This study investigated the effect of a new multidisciplinary diabetic foot clinic (MDDFC) in a large tertiary hospital on patient outcomes and treatment cost. METHODS: Patients' records were retrospectively reviewed to identify all patients who had been managed in a new MDDFC between July 2014 and July 2017. The wound episode-the period from initial presentation to the achievement of a final wound outcome-was identified, and all relevant inpatient and outpatient costs were extracted using a fully absorbed activity-based costing methodology. Risk factor, treatment, outcome, and costing data for this cohort were compared with a group of patients with diabetic foot wounds who had been managed in the same hospital before the advent of the MDDFC using a generalized linear mixed model. RESULTS: The MDDFC and pre-MDDFC cohorts included 73 patients with 80 wound episodes and 225 patients with 265 wound episodes, respectively. Compared with the pre-MDDFC cohort, the MDDFC group had fewer inpatient admissions (1.56 vs 2.64; P ≤ .001). MDDFC patients had a lower major amputation rate (3.8% vs 27.5%; P ≤ .001), a lower mortality rate (7.5% vs 19.2%; P ≤ .05), and a higher rate of minor amputation (53.8% vs 31.7%; P ≤ .01). No statistically significant difference was noted in the rate of excisional débridement, skin graft, and open or endovascular revascularization. In the MDDFC cohort, the median total cost, inpatient cost, and outpatient cost per wound episode was New Zealand dollars (NZD) 22,407.465 (U.S. dollars [USD] 17,253.74), NZD 21,638.93 (USD 16,661.97), and NZD 691.915 (USD 532.77), respectively. The MDDFC to pre-MDDFC wound episode total cost ratio was 0.7586 (P < .001). CONCLUSIONS: This study is the first to compare the cost and treatment outcomes of diabetic foot patients treated in a large tertiary hospital before and after the introduction of an MDDFC. The results show that an MDDFC improves patient outcomes and reduces the cost of treatment. MDDFCs should be adopted as the standard of care for diabetic foot patients.

Optimizing patient flow in a multidisciplinary haemophilia clinic using quality improvement methodology.

INTRODUCTION: Multidisciplinary clinics in academic settings are often inefficient and can lead to lengthy clinic visits for patients and staff. AIM: We aimed to use quality improvement (QI) methodology and a multidisciplinary approach to optimize outpatient comprehensive haemophilia clinic flow. METHODS: At baseline, a multidisciplinary QI team created a key driver diagram to identify drivers of haemophilia clinic flow. Identified drivers included patient needs/scheduling, provider flow and laboratory/research requirements. From December 2016 to August 2017, value stream mapping (VSM) was used to identify barriers to clinic flow, and plan-do-study-act cycles were used to address these barriers. Interventions included (a) standardizing the order in which providers saw patients to enable time-sensitive laboratories, (b) improving HTC team meeting functionality, (c) optimizing a visual management board and implementing a flow coordinator, (d) initiating a team huddle prior to clinic start and (e) modifying the clinic appointment template. Timely laboratory draw was used as a surrogate marker of clinic flow, and VSM utilization percentage was used as an objective measure of efficiency. RESULTS: We did not demonstrate a statistically significant improvement in timed laboratory draws; however, clinic utilization percentage increased by 30%, which resulted in adding point-of-care musculoskeletal ultrasound services without lengthening clinic duration. CONCLUSION: Quality improvement methodology is an effective means of improving clinic utilization in a multidisciplinary clinic.

Defining the role of a genetic counselor within pediatric hematology and oncology comprehensive care teams: Perspectives of the provider team and patients.

As genetic testing is increasingly integrated into medical care, the genetic counselor (GC) has emerged as a key member of multidisciplinary (MD) teams. Prior research has demonstrated the importance of role clarification when subspecialties are introduced to these teams given the potential differences in team member expectations regarding the division of responsibilities in clinic. To assess perceptions of a GC's role in four pediatric hematology/oncology clinics, Accreditation Council for Genetic Counseling (ACGC) competencies were used to develop two separate surveys for providers and patients and their caregivers. Providers (n = 25) perceived roles related to genetic expertise and coordination of care to be primarily the role of a GC significantly more often than psychosocial roles (p < .0001). Several potential GC roles were perceived as a shared role or the role of another provider, such as eliciting psychosocial history. Patients/caregivers (n = 70) perceived genetic-centric roles as significantly more important than roles related to coordination of care (p = .03) and psychosocial skills (p < .0001). Our findings from a pediatric specialty department suggest that GCs may maximize their potential in MD clinics by functioning as genetic subject matter experts with care coordination responsibilities related to genetic testing. Further communication between team members may be indicated to clarify the division of responsibilities.

Surveillance Testing and Preventive Care After Fontan Operation: A Multi-Institutional Survey.

More children with single ventricle heart disease are surviving after Fontan surgery. This circulation has pervasive effects on multiple organ systems and has unique modes of failure. Many centers have created multidisciplinary programs to care for these patients. Our aim was to survey such programs to better understand current approaches to care. We hypothesized that significant variability in surveillance testing strategy would be present. Eleven academic institutions with established Fontan care programs performing a combined estimated 300 Fontan surgeries per year, with a total population of 1500-2000 Fontan patients, were surveyed using a REDCap survey regarding surveillance testing and basic practice philosophies. Fontan care programs were structured both as consultative services (64%) and as the primary clinical team (9%). Electrocardiograms (73%) and echocardiograms (64%) were most commonly obtained annually. Serum studies, including complete blood count (73%), complete metabolic panel (73%), and Brain-type natriuretic peptide (54%), were most commonly obtained annually. Hepatic testing consisted of liver ultrasound in most centers, obtained biennially (45%) or > every 2 years (45%). Liver biopsy was not routinely recommended (54%). Neurodevelopmental outcomes were assessed at most institutions (54%), with a median frequency of every 3-4 years. There is considerable variability in the surveillance testing regimen and management strategy after a Fontan procedure at surveyed programs. There is an urgent need for surveillance guidelines to reduce variability, define quality metrics, streamline collaborative practice, and prospective research to better understand the complex adaptations of the body to Fontan physiology.

Cleft and Craniofacial Multidisciplinary Team Clinic: A Look at Attrition Rates for Patients With Complete Cleft Lip and Palate and Nonsyndromic Single-Suture Craniosynostosis.

OBJECTIVE: To evaluate attrition rates prior to expected completion of team care for children with complete cleft lip and palate (cleft) or nonsyndromic single-suture craniosynostosis (synostosis). DESIGN: A single-institution retrospective review of attendance data from 2002 to 2016. SETTING: Single cleft and craniofacial center in the United States. PATIENTS/PARTICIPANTS: A sample of 983 patients with either cleft or synostosis. Patients who were more than 2 to 3 years from their last visit were considered lost to follow-up. Patients with cleft older than 16 years or synostosis over 11 years were considered graduated from team care. RESULTS: Survival analysis shows that in our patients with cleft, 25% leave before age 8 and over 60% are lost from team by age 16. In patients with synostosis, 25% leave before age 6 and 45% are lost by age 11. Cox regression showed underrepresented minorities being 1.7 times more likely to become lost in the cleft group (hazard ratio: 1.66, 95% confidence interval [CI]: 1.01-2.74). CONCLUSIONS: Overall, attrition rates were high at our institution. Many patients are lost to follow-up prior to receiving key medical interventions. Improved family education and personalized care are needed to help ensure continuity of care.

Trends in incidence and long-term outcomes of myelomeningocele in British Columbia.

PURPOSE: Myelomeningocele is typically a disabling condition that results in neurologic, orthopedic, and urologic morbidity. The aim of this study was to examine the trends over time in both incidence and outcomes of myelomeningocele (MMC) in British Columbia (BC). METHODS: A retrospective chart review was performed of all children with MMC followed in the British Columbia Children's Hospital (BCCH) Spinal Cord Clinic between 1971 and 2016. The incidence of new MMC cases and the long-term outcomes of MMC were compared between two 10-year cohorts. The first cohort comprised children born with MMC between 1971 and 1981, and the second cohort comprised children born with MMC between 1996 and 2006. RESULTS: A total of 309 children with MMC were followed in the BCCH Spinal Cord Clinic between 1971 and 2016. There were 101 and 46 children with MMC in the two-time cohorts, respectively. Between the earlier and later cohorts, there was a significant difference in the following: MMC incidence [2.5/10,000 births vs 1.1/10,000 births, respectively (p = 0.0002)], mortality [18 vs 0% (p = 0.0009)], and the proportion of cases repaired in under 48 h [56 vs 98% (p < 0.0001)]. For surviving children, the proportion of children attending special classes was significantly different between the earlier and later cohorts [16 vs 46%, respectively (p = 0.0002)], whereas all other outcome measures, including the proportion with hydrocephalus, kyphoscoliosis, Chiari II surgery, bowel and bladder continence, recreation participation, obesity, and ambulation, were not significantly different. CONCLUSIONS: In BC, the incidence of new cases of MMC has decreased between 1971 and 2016, while the probability of survival for these patients has increased. Despite earlier and more universal post-natal repair, long-term outcomes have not improved significantly over time. Future research should focus on developing ways of reducing disability and improving quality of life for MMC patients and their families.

Review of Current Care Models for Transgender Youth and Application to the Development of a Multidisciplinary Clinic - The Seattle Children's Hospital Experience.

Care of transgender and gender diverse youth is complex and requires a multidisciplinary approach. Many transgender patients and providers feel the limited availability of affirming, knowledgeable professionals is a barrier to obtaining care. Such care can be provided through a clinic with providers from different disciplines who are trained in the unique care of transgender youth. In this paper, we discuss the care guidelines for transgender youth and the unresolved challenges that need to be addressed during the development of a transgender clinic. We describe our experience at Seattle Children's Hospital in the development of a multidisciplinary Gender Clinic which incorporates the expertise of social work, mental health professionals, pediatric endocrinology, adolescent medicine, and bioethics. Other institutions may build from our experience, with the ultimate goal of further decreasing health disparities for young transgender patients.

Longitudinal regret after treatment for low- and intermediate-risk prostate cancer.

BACKGROUND: Prostate cancer patients diagnosed with low- and intermediate-risk disease have several treatment options. Decisional regret after treatment is a concern, especially when poor oncologic outcomes or declines in health-related quality of life (HRQoL) occur. This study assessed determinants of longitudinal decisional regret in prostate cancer patients attending a multidisciplinary clinic and treated with radical prostatectomy (RP), external beam radiation therapy (EBRT), brachytherapy (BT), or active surveillance (AS). METHODS: Patients newly diagnosed with prostate cancer at the Walter Reed National Military Medical Center who attended a multidisciplinary clinic were enrolled into a prospective study from 2006 to 2014. The Decision Regret Scale was administered at 6, 12, 24, and 36 months posttreatment. HRQoL was also assessed at regular intervals using the Expanded Prostate Cancer Index Composite and 36-item RAND Medical Outcomes Study Short Form questionnaires. Adjusted probabilities of reporting regret were estimated via multivariable logistic regression fitted with generalized estimating equations. RESULTS: A total of 652 patients met the inclusion criteria (395 RP, 141 EBRT, 41 BT, 75 AS). Decisional regret was consistently low after all of these treatments. In multivariable models, only African American race (odds ratio, 1.67; 95% confidence interval, 1.12-2.47) was associated with greater regret across time. Age and control preference were marginally associated with regret. Regret scores were similar between RP patients who did and did not experience biochemical recurrence. Declines in HRQoL were weakly correlated with greater decisional regret. CONCLUSION: In the context of a multidisciplinary clinic, decisional regret did not differ significantly between treatment groups but was greater in African Americans and those reporting poorer HRQoL. Cancer 2017;123:4252-4258. © 2017 American Cancer Society.