United States

Introduction: 
National joint replacement registries allow for evaluation and improvement of joint arthroplasty interventions through extensive data reporting. Many registries now include patient-reported outcome measure (PROM) data. PROM surveys and reporting methods vary widely between registries, and data comparison between them is challenging. The purpose of this study is to: 1) summarize how national joint registries publish patient-reported outcome measure (PROM) survey results differently in their annual reports; 2) explain the utility of being able to compare PROMs data between registries; and 3) identify possible solutions to facilitate harmonization in reporting.

Methods: 
The PROMs reported in the open access 2022 annual reports of five registries were summarized and compared. The five registries were: the American Joint Replacement Registry, Australian Orthopaedic Association National Joint Replacement Registry, Canadian Joint Replacement Registry, National Joint Replacement Registry of the United Kingdom, and the Swedish Arthroplasty Register. 

Results: 
Twelve unique PROMs surveys were identified among the five registries: EQ-5D, EQ-VAS, PROMIS-10, VR-12, Oxford Knee Score, Oxford Hip Score, KOOS-12, HOOS-12, KOOS-JR, HOOS-JR, a patient satisfaction question, and a patient perceived change question. All registries reported different scoring methods. For risk-adjustment, registries used a wide range of different variables to stratify patients.

Conclusions:
Harmonization of the PROMs reporting process will facilitate direct comparison between registries, allowing for identification of which regions have the greatest improvement in PROMs following intervention. Registry data from participating regions can inform future approach, implant, and technique selections worldwide if consistently reported and compared to other registries. Harmonization of reporting could be achieved by standardizing how a minimally important clinical difference (MCID) is calculated or selecting PROMs that fulfill the Outcome Measures in Arthritis Clinical Trials (OMERACT) criteria.

AMA Research Challenge 2023

Harmonizing the Presentation of Patient-Reported Outcome Measure Data in Joint Registries

poster

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Background:
Oral cavity cancer (OCC) and laryngeal cancer are among the most common cancers worldwide. This study investigated survival in non-Hispanic (NH) Black, NH White, Asian, and Hispanic patients with OCC and laryngeal cancer of low, intermediate, and high neighborhood socioeconomic status (nSES).

Methods:
We used data from the SEER 18 Census Tract-level SES and Rurality Database of the National Cancer Institute to create cohorts of OCC and laryngeal cancer patients from 2013 to 2018. Univariate survival analysis was performed with Kaplan–Meier curves and log-rank P values by nSES and then the cross-classification of race, ethnicity, and nSES. We used Cox proportional hazards regression model for multivariable analysis.

Results:
Higher nSES was associated with better OCC survival for NH White, NH Black, and Asian patients, and better laryngeal cancer survival for NH White, NH Black, Hispanic, and Asian patients. In the multivariable analyses of both OCC and laryngeal cancer survival, NH Black patients had worse survival than NH White patients in the high nSES tertile. NH Black patients with OCC were at higher risk of death than NH White patients at all nSES levels. Conversely, Asian patients with laryngeal cancer demonstrated better survival than other races within the high nSES.

Conclusions:
Overall survival differs between racial and ethnic groups of similar nSESs. These health disparities in patients with OCC and laryngeal cancer reflect broader inequities in the cancer control continuum.

Neighborhood Socioeconomic Status and Racial and Ethnic Survival Disparities in Oral Cavity and Laryngeal Cancer

Background: In the United States, the incidence of head and neck cancer (HNC) is over 54,000 cases per year, resulting in over 11,000 deaths annually. The average hospitalization cost for patients undergoing HNC treatment is $18,371 and the average hospital length of stay (LOS) is 6.6 days. Although much literature focuses on the effect of hemoglobin A1C, weight loss, and smoking status contributing to LOS, less attention has been focused on socioecological metrics. This study aims to identify socioecological factors that may predict increased LOS for patients
undergoing surgical treatment for HNC in Western New York (WNY).
Methods: A retrospective review of patients in WNY with a diagnosis of HNC treated between October 2017 and November 2022. The CDC’s Social Vulnerability Index (SVI) was used at the census tract level. Statistical analysis was conducted using Microsoft Excel and R Studio.
Results: LOS data for 419 patients was analyzed, 31% (n=131) were female, 65% (n=280) identified as white, and 76% (n=319) lived in urban counties. Median LOS was 8 days (range:1-96) for patients from rural counties and 8 days for patients from urban counties (range: 1-189). For areas that had a low or low-medium SVI, average LOS was 13.3 days (SD=18.6). For medium-high and high areas, average LOS was 13.4 days (SD=18.7), demonstrating no significant difference. Poisson regression modeling revealed that distance to hospital, ethnicity, gender, and insurance carrier all contribute significantly to LOS (p<0.0001).
Conclusions: SVI and geographic region independently do not influence LOS for HNC patients, but when socioecological factors are combined into a regression model, there is an influence. This suggests that multiple social determinants of health impact LOS for patients who undergo complex procedures for HNC. Further investigation with multiple institutions in WNY may provide insight into the impact of socioecological factors on LOS in this region.

Socioecological Determinants of Length of Stay for Head and Neck Cancer Patients

Skull base osteomyelitis (SBO) is a rare, but serious condition which can be challenging to diagnose due to broad initial symptomatology, such as headache, fever, or tinnitus, a relatively silent clinical progression which untreated, can cause notable long-term deficits and death. Long courses of antibiotics to target infection and surgical management are potential treatment options, but mortality is noteworthy given the hidden disease nature and ease of progression under delayed treatment. Our paper seeks further insight into predisposing factors of SBO such as comorbidities, gender, age and other clinical factors of significance. We identified 110 patients, 70 of whom had diabetes, and 29 of which had preexisting hypertension, with a mean age of 61.66 ± 10.89 years. The majority (51/110) of patients had solely bacterial pathogens isolated in cultures, 16 were solely fungal, and 11 were a mix of both, while 30 patients had cultures with no isolated organism. Pseudomonas accounted for over half of the bacterial cases, followed by Streptococcus. Most common fungal pathogens include Aspergillus and Rhizopus which were isolated in 9 patients each of 27 total patients with fungal SBO (33.3%). Our population was 73% male and 64% diabetic, supporting the population that is typically regarded being affected by this condition. To best differentiate SBO, initial workup should include CBC with differential, C-reactive protein (CRP) and Erythrocyte Sedimentation Rate (ESR), followed by MRI imaging and nuclear imaging such as Technetium scan, if possible, for stronger evaluation. Treatment has been variable, from broad spectrum antibiotics like ciprofloxacin or ceftriaxone with metronidazole for minimum of 6 weeks IV with up to a year orally, to surgical debridement, if severe and in need of source control, although a strong correlation in surgical treatment to mortality has not been associated.

A comprehensive meta-analysis of Skull Base Osteomyelitis: Predisposing factors and microbiological profile

Background
There are three different treatment options for the newly diagnosed Vestibular Schwannomas (VS) patient. Lack of information about treatment risks and benefits is the foremost barrier to making treatment decisions. The goal of this study was to develop and validate a decision aid (DA) for newly diagnosed VS patients.

Methods
This was an instrument development and randomized control validation trial. The 15 items on the DA were identified through virtual focus groups of VS patients, discussion with treating physicians, and literature review. 77 newly diagnosed patients who had not yet made treatment decision were screened and 58 met enrollment criteria. Subjects completed initial questionnaires and were randomized into either an intervention group consisting of the DA and a fact sheet on VS from the National Institute of Deafness and Other Communication Disorders (NIDCD), or a control group that only received the fact sheet. Subjects were expected to use the materials as they completed initial visits with various physicians. The hypothesis of the study was that the use of the DA would increase shared decision- making and increase subject satisfaction with their decision as demonstrated by a reduction in scores on the Decisional Conflict Scale (DCS), which measures personal perceptions of uncertainty in choosing options; modifiable factors contributing to uncertainty; and effective decision-making. Total score ranges from 0 (no decisional conflict) to 100 (extremely high decisional conflict). A clinically meaningful level of no decisional conflict for VS patients was defined as a DCS score ≤ 1.

Results
At baseline, the median DCS for the DA group was 1.81 (Range: 1.00-3.00) and for the Control group was 1.88 (Range: 0.69 to 3.19). At Time 2, the median DCS for the DA group was 1.16 (Range: 0-1.88) and for the Control group was 1.31 (0.06-2.81). The (ΔDCS) between Time 1 and Time 2 for the DA group was 0.91 (Range: -0.50 to 2.06) and for the Control group was 0.56 (Range: -0.63 to 2.06). In the DA group, 46% of individuals had a DCSTime 2 ≤ 1 compared to 33% of individuals in the Control group, a 13% reduction in decisional conflict.

Conclusion
The use of the VS DA at the time of making a treatment decision showed a clinically meaningful difference in reducing decisional conflict. Decision aids are helpful in decreasing decisional conflict and increase decision satisfaction and shared-decision-making.

Development and Validation of a Decision Aid for Newly Vestibular Schwannoma Patients

Objective: Salivary gland tumors are a heterogenous group of lesions with variable pathology and clinical outcomes. Most published data is derived from studies conducted at tertiary care centers. Our study analyzed the experience from a community setting to determine significant differences, if any, in pathological distribution and clinical outcomes compared to the existing literature.

Methods: We performed a retrospective analysis of all salivary gland tumors that presented to a large community practice over a 20-year period. Retrospective chart analysis was performed for demographics, clinical presentation, imaging, cytology, histopathology, and clinical outcome data.

Results: Of 806 patients, the parotid gland was the most common site in 683 patients (84.7%), followed by submandibular in 78 (9.7%) and sublingual in 45 (5.6%). 203 patients were managed conservatively without definitive diagnosis or lost to follow up. A total of 495 patients underwent surgical intervention within the community practice. 26 patients underwent surgical excision at an outside hospital. 82 patients were determined to have a benign diagnosis based on FNA or excisional biopsy alone. Final histopathology was benign in 505 cases (83.7%), while 98 tumors (16.3%) received a diagnosis of primary or secondary malignancy. For the parotid gland, pleomorphic adenoma (155) and Warthin’s tumor (155) were the most common benign diagnoses, while mucoepidermoid carcinoma (13), adenocarcinoma (8), and acinic cell carcinoma (8) were the most common primary malignancies. 

Conclusions: We found a higher rate of benign tumor pathology compared to the existing literature. While the outcome data on surgical treatment of benign tumors is comparable to the existing literature, the same conclusion cannot be drawn for malignant tumors, given relatively small numbers in our series and likely disparity in the complexity of the surgical cases in tertiary care centers.

Salivary Gland Tumors: A Twenty-Year Review from a Single Community Practice

**Scoring is only possible in the semifinals hall**

**Abstract:**



Uncovering Patterns between Obstructive Sleep Apnea and Disease Comorbidities: An Exploration of Patient Demographics

Introduction: Thyroid cancer is the most common endocrine cancer reported world-wide, with an increasing incidence over the past decades. Although the effect of numerous variables on thyroid cancer has been studied, the role of socioeconomic status (SES) remains a topic of interest. SES encompasses a range of factors such as occupation, household income, education, and health insurance, which have been shown to influence health outcomes in different diseases. Understanding the correlation between SES and thyroid cancer diagnosis and prognosis is critical for determining potential disparities and developing targeted interventions to improve patient outcomes. We conducted a review to provide a comprehensive synthesis of the existing literature through which we aim to illuminate the relationship between socioeconomic status and key outcomes in thyroid cancer, including diagnostic delays, disease stage at diagnosis, and survival rates. By identifying the specific socioeconomic factors that influence thyroid cancer outcomes, we can target interventions and policies to improving access to timely diagnosis and enhancing patient outcomes in diverse socioeconomic populations.
Methods: A pubmed literature search with the following search strategy was conducted: ("effect"[All Fields] OR "effecting"[All Fields] OR "effective"[All Fields] OR "effectively"[All Fields] OR "effectiveness"[All Fields] OR "effectivenesses"[All Fields] OR "effectives"[All Fields] OR "effectivities"[All Fields] OR "effectivity"[All Fields] OR "effects"[All Fields]) AND ("socioeconomic factors"[MeSH Terms] OR ("socioeconomic"[All Fields] AND "factors"[All Fields]) OR "socioeconomic factors"[All Fields]) AND ("thyroid neoplasms"[MeSH Terms] OR ("thyroid"[All Fields] AND "neoplasms"[All Fields]) OR "thyroid neoplasms"[All Fields] OR ("thyroid"[All Fields] AND "cancer"[All Fields]) OR "thyroid cancer"[All Fields]) AND ("prognosis"[MeSH Terms] OR "prognosis"[All Fields] OR "prognoses"[All Fields]). 
Abstract review of the resulting 13 studies was performed, of which 7 studies were included in the final review per inclusion and exclusion criteria. A comparative analysis was performed considering the methods, results, and conclusions of the studies. 
Results: Socioeconomic status (SES) was examined in seven studies in relation to the outcomes of thyroid cancer. Among these studies, four specifically looked at income, one investigated insurance access, and two considered multiple SES factors. The findings consistently showed that individuals with lower SES had worse overall survival rates (based on four studies) and were more likely to be diagnosed at a later stage (based on two studies), suggesting possible delays in accessing healthcare. Additionally, one study indicated a lower incidence of papillary thyroid cancer among individuals with lower SES indicative of lower early screenings.
Conclusion: Based on findings from the included studies, lower socioeconomic status is associated with unfavorable outcomes in thyroid cancer with delayed diagnoses and poorer overall survival. 


The Effect of Socioeconomic Status on Diagnosis and Prognosis of Thyroid Cancers


Background: It is well known that small bowel length is a dominant prognostic indicator in patients with short bowel syndrome (SBS). The relative importance of jejunum, ileum, and colon is less well defined in children with SBS. Here we review the outcome of children with SBS with respect to the type of remnant intestine. Methods: A retrospective review of 51 children with SBS was conducted at a single institution. The duration of parenteral nutrition use was the main outcome variable. The length of the remaining in- testine as well as the type of intestine were recorded for each patient. KaplaneMeier analyses were conducted to compare the subgroups.
Results: Children with greater than 10% expected small bowel length or more than 30 cm of small bowel achieved enteral autonomy faster than those with less. The presence of ileocecal valve enhanced the ability to wean from parenteral nutrition. The presence of ileum significantly enhanced the ability to wean from parenteral nutrition. Patients with the entire colon also achieved enteral autonomy sooner than those with partial colon.
Conclusions: The preservation of ileum and colon is important in patients with SBS. Approaches to preserve or lengthen ileum and colon may be beneficial for these patients.

Importance of Ileum and Colon in Children with Short Bowel Syndrome

Background
Extracorporeal membrane oxygenation (ECMO) is a complex medical intervention that is increasingly being used by the pediatric population. It is associated with significant morbidities and high mortality. ECMO therapy involves multiple ethical dilemmas and is associated with greater moral distress than routine intensive care, including significant parental psychological distress. Communication during ECMO courses is often unclear, with one study reporting that nearly a quarter of parents felt they were not told about the possibility of death until their child failed to improve on ECMO and discontinuation was discussed. High-quality communication is crucial to the support that clinical teams can provide families. To date, no consensus guideline on best practices for communicating during pediatric ECMO therapy exists, nor have areas of disagreement amongst experts been assessed. This study sought to develop the first consensus guideline for communicating during pediatric ECMO therapy and identify areas of disagreement.
Methods
We used the Delphi methodology, which consists of 3 iterative rounds. During Round 1, we conducted semi-structured interviews with each panelist, who were pediatricians from the US and Canada from the following pediatric specialties: intensive care, cardiac intensive care, and neonatology. We then used content analysis to code the interviews and develop potential recommendations. During Round 2, panelists evaluated each item via a Likert scale as a potential recommendation. Before Round 3, panelists were provided personalized feedback reports of the results of Round 2. During Round 3, panelists re-evaluated items that did not reach consensus during Round 2. Items that reached consensus in Rounds 2 and 3 were translated into the final framework.
Results
Consensus was defined as (1) a median rating >7 and (2) >70% of the panelists rating the recommendation >7. The final framework included 105 recommendations. The recommendations emphasized the importance of clarifying the goal of ECMO, its time-limited nature, and the possibility of its discontinuation resulting in patient death. The recommendations also provide guidance on how to share updates with the family and perform compassionate discontinuation.
Conclusion
A panel of experts developed recommendations for communicating with families during pediatric ECMO therapy. The recommendations offer guidance for communicating during the introduction of ECMO, providing updates throughout the ECMO course, and during the discontinuation of ECMO. Areas of disagreement on best communication practices were also identified and should be further explored.

Communicating with families during Pediatric ECMO: recommendations from a Delphi panel

Background
In our original study, we utilized clinical next-generation sequencing to identify pathogenic (P) or likely pathogenic (LP) sequence variations that are not associated with a patient's primary indication for testing within a large pediatric cohort. These variations are called secondary findings (SFs). Our cohort was enriched for Black or African-American (AA) children, which comprised 51.8% (8667 subjects) of the total cohort (16713 subjects) at the Center for Applied Genomics at The Children’s Hospital of Philadelphia. The inclusion rate of individuals (adults and pediatrics) with African ancestry in published genome-wide studies is <3% which highlights the unmet need for further genetics research on this population. The strong representation of Black or AA children in our cohort allowed us to present information on the types and frequencies of P/LP SFs primarily affecting Black or AA children and families.

Methods
The original study searched for P/LP variants in disease-causing genes, specifically in 78 American College of Medical Genetics and Genomics (ACMG)-recommended and 93 non-ACMG genes that were defined as SFs in patients of four large pediatric cohorts. The 93 non-ACMG genes were selected after an extensive literature search for relevant genes proposed for addition to the ACMG list. Variants were filtered by P/LP classification as per ACMG/Association for Molecular Pathology (AMP) recommendations, Combined Annotation Dependent Deletion (CADD) vs Mutation Significance Cutoff (MSC) scores, variant type, presence in disease-causing variant databases, and Integrative Genomics Viewer (IGV) visualization for manual variant quality inspection. We divided the patient's P/LP variants into four disease categories: cancer, cardiovascular, metabolic, and miscellaneous. We further divided our patients by self-reported ethnicity.

Results
Black or AA subjects comprised 307/320 (82%) of TTR variants (ACMG), 29/48 (60%) of RYR1 variants (ACMG), and 22/39 (56%) of LDLR variants (ACMG).
Out of 307 Black or AA subjects with P/LP variants in TTR, the most common variant (304) was p.V142I. The other three variants were p.V50M, p.V113M, and p.D119V.
Additionally, Black or AA subjects comprised 335/350 (95%) of G6PD variants (non-ACMG). The most common variant (327) was p.V98M which was excluded from final reports since it has mild clinical manifestations.

Conclusion
These SF data provide valuable insight into common P/LP genetic variations and associated diseases which mainly affect Black or AA children. The implications of identifying most TTR, RYR1, and LDLR gene variants in this underrepresented patient population include: better informed medical management, reproductive planning, and family member genetic testing for Black or AA children and families specifically.

Next from AMA Research Challenge 2023

Neighborhood Socioeconomic Status and Racial and Ethnic Survival Disparities in Oral Cavity and Laryngeal Cancer

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