Clinician perspectives on the perioperative roles and responsibilities of anesthesia, surgery, and primary care.

BACKGROUND: Although high-risk older patients benefit from a multidisciplinary approach to perioperative care, the specific roles and responsibilities of the clinicians involved have yet to be adequately characterized. METHODS: Qualitative analysis of semi-structured interviews with four anesthesia preoperative clinic providers, seven surgeons, and nine primary care providers in northern New England. RESULTS: The analysis revealed both distinct and overlapping roles and responsibilities. Anesthesia providers were described as a "safety net" and surgeons as "captain of the ship", in charge of getting "all the ducks in a row" to avoid surgery delays and cancellations. Primary care providers saw themselves as the "quarterback", ensuring care continuity and consideration of patient psychosocial factors. CONCLUSIONS: While all have a shared responsibility for facilitating patient-centered decision-making and a safe perioperative course, each discipline has different areas of focus and expertise. Role clarification can help optimize the distribution of responsibilities and enhance perioperative communication and collaboration.

Duodenal adenocarcinoma at stage IV: A critical look at diagnostic pathways and treatment modalities.

Duodenal adenocarcinoma is a rare and aggressive gastrointestinal malignancy that frequently presents with symptoms like gastric outlet obstruction and biliary obstruction, leading to delayed diagnosis and challenging prognosis. This case report explores the clinical presentation, diagnostic hurdles, and therapeutic management of late-stage duodenal adenocarcinoma in a 53-year-old woman with no significant prior medical history. The patient presented with severe epigastric pain radiating to the right upper quadrant, nausea, and decreased appetite. Elevated liver enzymes and imaging revealed multiple liver masses and a primary duodenal mass. Biopsies confirmed moderately differentiated adenocarcinoma. Tumor markers were evaluated during the staging phase, showing markedly elevated levels. The patient underwent systemic chemotherapy with FOLFOX but faced complications, including pulmonary emboli and neurological symptoms. Management required a multidisciplinary approach, integrating palliative and supportive care to address symptoms and improve quality of life. The case highlights the necessity of considering duodenal adenocarcinoma when diagnosing persistent gastrointestinal symptoms. It highlights the need for a holistic treatment approach, including tailored chemotherapy regimens and vigilant monitoring of complications. Molecular profiling was crucial in guiding treatment decisions, although MSI, HER2, and PD-1 were negative, and the tumor showed no mismatch repair protein deficiency. This article emphasizes the importance of early integration of palliative care and the value of comprehensive pathological analysis in managing advanced duodenal adenocarcinoma, providing insights into diagnostic and therapeutic strategies for this complex case.

Fracture-Related Infection of a Distal Femur Open Fracture Treated With a Supracutaneous Locking Plate.

Fracture-related infection (FRI) is a challenging complication in open fractures. It can cause major disability to patients and a burden to the public health sector. A multidisciplinary approach is required to eradicate infection and improve the quality of life for patients. We present a case of an FRI in an open fracture of the distal femur treated using a supracutaneous locking plate, which is an uncommon technique. This technique yields excellent outcomes in controlling local infection and providing satisfactory stability, especially for a peri-articular distal femur fracture with FRI. Therefore, supracutaneous plating using a locking plate can be considered an alternative option to conventional external fixations in managing FRIs.

Multidisciplinary care meeting practices across diverse international settings.

PURPOSE: Multidisciplinary care (MDC) meetings improve the quality of cancer care by providing a space for interdisciplinary communication. The Pediatric Oncology Facility Integrated Local Evaluation (PrOFILE) tool assesses MDC meetings as part of the Service Integration module. We aimed to evaluate the characteristics of MDC meetings at institutions that completed PrOFILE. METHODS: From 2019 to 2021, 112 institutions from 23 countries collected data by utilizing the abbreviated version of PrOFILE. Within a secondary data analysis, we descriptively analyzed the characteristics of MDC meetings stratified by income level. RESULTS: Participating institutions were located in low-income countries (LICs) (n = 6), lower-middle-income countries (LMICs) (n = 34), upper-middle-income countries (UMICs) (n = 55), and high-income countries (HICs) (n = 17). Of the 112 participating facilities, 79% reported having MDC meetings. The existence of an MDC varied with income, with 50% of LICs and 100% of HICs hosting MDCs. The frequency of MDC meetings also differed, with 100% of MDCs in LICs occurring weekly, while 53% of MDCs in HICs occurred monthly. Specialties regularly represented at MDC meetings across all participating institutions were hematology/oncology (93%), pathology (52%), radiology (60%), general surgery (57%), and radiation oncology (51%). All MDC meetings in LICs reported representation from these specialties. Availability of test results and discussion of new cases did not vary with income. Residual disparities were identified for the following characteristics: discussion of new and interesting cases, inclusion of patient preferences, and ability to meet urgently. CONCLUSIONS: The existence and components of a functional MDC meeting may vary between countries' income levels. Variation in certain components, such as access to tests, may be due to differences in resource distribution, but other factors such as inclusion of patient preferences and ability to meet urgently can be optimized in all settings to foster high-quality teamwork and communication.

A Quality Improvement Study to Identify Deterrents and Improve Voice Patient Compliance with Follow-Up.

OBJECTIVE: Evaluation and treatment for voice disorders may optimally involve multiple treatment modalities. However, even in multispecialty clinics, patients may be less likely to comply with follow-up compared to patients seen for other otolaryngologic complaints. We investigated the factors contributing to noncompliance and then implemented quality improvement metrics aimed at improving our clinical noncompliance rates. METHODS: Noncompliant patients were identified as those who had been seen in our multispecialty voice care clinic and instructed to follow-up but had not returned within 6months. Patients were telephoned for a brief survey. Surveys were completed in two rounds, pre- and post-quality improvement efforts. RESULTS: On the initial round of surveys, the most frequently cited reason for discontinuing care was financial (38.5%), some (30.8%) did not like the clinic location, and some felt follow-up would not be helpful (46.2%). The clinic location was subsequently moved outside of the downtown metropolitan area, and multidisciplinary care team approaches were implemented within this same, larger office space. A second round of surveys was then administered, wherein significantly fewer patients endorsed financial concerns as a reason for care discontinuation of care (Chi2 =8.689, P = 0.003). While fewer patients (22.6%) disliked the clinic location, this difference was not significant. A significantly greater number of patients endorsed feeling better as their reason for not following up (Chi2 =5.551, P = 0.018). CONCLUSIONS: This study reports quality improvement efforts aimed at identifying and addressing factors that contribute to voice care noncompliance. Ease of clinic access and affordability appear to be substantial factors. Optimizing clinic location, emphasizing the importance of continuity of care, and offering comprehensive approaches may improve patient adherence to voice care recommendations. LEVEL OF EVIDENCE: 2b.

Living with peripartum cardiomyopathy: A statement from the Heart Failure Association and the Association of Cardiovascular Nursing and Allied Professions of the European Society of Cardiology.

This statement focuses on the fact that women with peripartum cardiomyopathy (PPCM) have a substantial mortality and morbidity rate. Less than 50% of patients have full recovery of their cardiac function within 6 months of diagnosis. Also, patients with recovered cardiac function often suffer from comorbidities, such as hypertension or arrhythmias, which require long-term treatment. This has major implications which extend beyond the life of the patient, as it may also substantially impact her family. Women with a new diagnosis of PPCM should be involved in the decision-making processes regarding therapies, e.g. the recommendation to abstain from breastfeeding, or the use of cardiac implantable electronic devices. Women living with PPCM face the uncertainty of not knowing for some time whether their cardiac function will recover to allow them a near-to-normal life expectancy. This not only impacts their ability to work, which may have financial implications, but may also affect mental health and quality of life for the extended family. Women living with PPCM must be informed that a future pregnancy always carries a substantial risk and, in case of poor cardiac recovery, is associated with a high morbidity and mortality. Patients with PPCM are best managed by an interdisciplinary and multiprofessional approach including e.g. a cardiologist, a gynaecologist, nurses, a psychologist, and social workers. The scope of this document encompasses contemporary challenges and approaches for the management of women diagnosed with PPCM.

Enhanced Recovery After Surgery Pathways in Pediatric Spinal Surgery: A Systematic Review and Meta-Analysis.

BACKGROUND: Pediatric spinal fusion surgery is a complex procedure that poses challenges in perioperative management. The enhanced recovery after surgery (ERAS) approach is an evidence-based, multidisciplinary strategy to optimize patient care in an individualized, multidisciplinary way. Despite the benefits of ERAS protocol implementation, the role of ERAS in pediatric spine surgery remains understudied. This systematic review and meta-analysis aims to evaluate the current literature regarding pediatric spinal surgery ERAS protocols and their ability to decrease the length of stay, pain, time-to-stand, and complications. METHODS: A systematic review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Statistical analyses were performed using Cochrane's RevMan (version 5.4). RESULTS: Seventeen studies totaling 2733 patients were included in this analysis. Patients treated in an ERAS protocol had significant reductions in length of stay (P < 0.001), time-to-stand (P < 0.001), total complications (P = 0.02), and estimated blood loss (P = 0.001). CONCLUSIONS: ERAS protocol implementation can significantly enhance outcomes for pediatric patients receiving spinal surgery. Consequently, ERAS protocols have the potential to lower healthcare expenses, increase access, and set a new standard of care. Future research should be conducted to expand pediatric ERAS protocols to a diverse range of spinal pathologies and assess the long-term advantages of this practice.

Economic Evaluation of an Integrated Care Program Compared to Conventional Care for Patients With Chronic Kidney Disease in Rural Communities of Thailand.

Introduction: An integrated care program for chronic kidney disease (CKD) in Thailand has shown its effectiveness in delaying the decline in kidney function, as evidenced by the Effectiveness of Integrated Care on Delaying Progression of Stages 3 to 4 CKD in Rural Communities of Thailand (ESCORT-1) randomized control trial and the ESCORT-2 prospective cohort study. Designed for sustainability within the primary healthcare system, the program optimizes the use of the existing workforce by fostering collaboration among local multidisciplinary care teams (MDCTs) and community care networks (CCNs). Methods: A Markov model with a lifetime horizon was used to conduct a cost-utility analysis from a societal perspective. Individual participant level data from ESCORT studies, national registries, and relevant literature were used to estimate model parameters. A budget impact analysis from the payer's perspective was also assessed over a 5-year period. Results: The integrated care program yielded a dominant result with 1.84 quality-adjusted life years (QALYs) gained with "less" lifetime cost, resulting in a negative incremental cost-effectiveness ratio (ICER). Probabilistic analysis showed that the intervention being cost-effective almost 100% of the time at the local willingness-to-pay threshold. The intervention maximized cost-effectiveness when delivered as early as possible, both in terms of age and stage. The budget impact analysis estimated that the introduction of the intervention could save about 7% of the Thai government's total health expenditure or 205 billion Thai-Baht ($5.9 billion) over 5 years with cost savings beginning from the third year onwards. Conclusion: The integrated care program for CKD offers potential benefits and cost savings for patients, caregivers, and payers. Future efforts should focus on the screening and implementation processes across various regions and healthcare settings.

Severe Hyponatremia Secondary to Pituitary Macroadenoma With Internal Hemorrhage in the Postpartum Period: A Case Report.

Pituitary macroadenomas, especially those complicated by internal hemorrhage (pituitary apoplexy), can lead to severe endocrine dysfunction and visual disturbances. This is particularly challenging to diagnose in the postpartum period due to physiological changes associated with childbirth and breastfeeding. This case report aims to highlight the diagnostic and therapeutic complexities of managing severe hyponatremia and visual changes in a woman with a pituitary macroadenoma in the postpartum period.A 34-year-old female, five months postpartum, presented with a one-month history of intermittent nausea, headaches, and blurry vision, which worsened over the past week. Initial laboratory results revealed severe hyponatremia with a sodium level of 112 mEq/L. Imaging studies, including MRI, confirmed a 1.9 x 1.8 x 1.7 cm pituitary macroadenoma with internal hemorrhage exerting mass effect on the optic chiasm. The patient was managed with hypertonic saline for hyponatremia and empiric glucocorticoid supplementation for suspected adrenal insufficiency. A multidisciplinary approach involving endocrinology, neurosurgery, and ophthalmology was employed to address her complex medical needs. This case underscores the importance of considering pituitary pathology in women presenting with severe hyponatremia and visual changes postpartum. A multidisciplinary approach is essential for optimal management and prevention of long-term complications. Early recognition and appropriate intervention are crucial in ensuring a favorable outcome.

Enabling decision-making: what assists people with motor neurone disease when they consider gastrostomy insertion?

PURPOSE: This study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported. MATERIALS AND METHODS: The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52-73 years; disease duration 6-99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual's experience of decision-making about PEG. The data were synthesised and analysed thematically. RESULTS: Three main themes and two sub-themes captured participant views on their decision-making. The first, "What matters most to me," comprised optimising quality of life and maintaining family membership. The second theme explored "Understanding PEG and the clinical pathway." The third theme was "Thoughts on using a decision aid." CONCLUSIONS: This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.

People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG.

Non-Genetic Healthcare Providers' Experiences and Perspectives with Rapid Genome-Wide Sequencing in Canadian Neonatal Intensive Care Units.

BACKGROUND/OBJECTIVES: Rapid genome-wide sequencing (rGWS) continues to transform the care provided to infants with genetic conditions in neonatal intensive care units (NICUs). Previous research has demonstrated that rGWS has immense benefits on patient care; however, little is known about non-genetic healthcare providers' (HCPs) experiences and perspectives of working with rGWS and supporting families through the rGWS testing process in Canadian NICU facilities. To address this gap, we surveyed and conducted semi-structured interviews with non-genetic HCPs of diverse professions from NICUs in British Columbia. METHODS: An interpretive description approach was used to analyze interview transcripts to identify patterns and variations in non-genetic HCPs' experiences and perceptions with rGWS. RESULTS: Participants had varying degrees of exposure to rGWS and levels of comfort with the testing process. Numerous barriers affecting the implementation of rGWS were identified, including low levels of comprehension of rGWS, longer turn-around times than expected, and having to apply for provincial government approval to access testing. Participants desired more education on rGWS, clear guidelines on the use of rGWS in NICUs, and resources for non-genetic HCPs and parents to support implementation. CONCLUSIONS: The results from this study can inform the development of workflows and educational resources on the use of rGWS in NICUs, helping to ensure that the NICU team is supported to optimize rGWS implementation.

Expectations and needs of people with illicit substance use disorders in general practice: a qualitative study in Belgium.

BACKGROUND: People who use illicit drugs cumulate medical and psychosocial vulnerabilities, justifying a rounded health approach. Both caregivers and patients can form barriers to accessing care, leading to inadequate care. This study aimed to identify the needs and expectations of such patients in general practice. METHODS: Qualitative research was conducted using semi-structured interviews with 23 people with illicit substance use disorder in Brussels in 2020. Multicentric recruitment was conducted to obtain a heterogeneous mix of sociodemographic profiles and care trajectories. Thematic analysis was performed using RQDA package software. RESULTS: Participants highlighted several vulnerabilities. These include the presence of significant self-stigmatization and guilt, sometimes to the extent of self-dehumanization, even after years of care, and overdoses masking suicide attempts and early memory disorders. Multiple substance use, smoking in almost all participants, and misuse of benzodiazepines were also noted. The majority of participants expressed the need for an open-minded, non-stigmatizing and empathic GP with a holistic approach that could guide them throughout their life course. The competencies of the GPs in the field of addiction seemed secondary to the participants. Knowledge and good collaboration with the mental health network were assets. CONCLUSION: Participants expressed the need for GPs with good interpersonal skills, including a non-stigmatizing attitude. The care coordinator role of the GP was highlighted as a key element, as it was a holistic approach focusing on global health (including the social determinants of health) and not only on substance use disorders.

Multidisciplinary Perspectives on Medical Decision-Making for Ostomy Surgery in Pediatric IBD: Themes from Focus Groups.

Pediatric Inflammatory Bowel Disease (IBD) is a chronic illness where patients may undergo ostomy surgery. Medical decision-making (MDM) for ostomy surgery is complex for patients/families and multidisciplinary healthcare professionals (HCPs) alike, with current uncertainty about how multidisciplinary HCPs think about ostomy care to inform future interventions to facilitate equitable multidisciplinary care for patients. This study sought to understand pediatric IBD multidisciplinary HCPs' perceptions regarding ostomy-related MDM and education. Multidisciplinary HCPs (e.g., gastroenterology medical providers, social workers, surgeons, and ostomy nurses) participated in semi-structured focus groups. Focus group data underwent qualitative analysis to identify themes. Three multidisciplinary focus groups were conducted, with n = 12 participants across all groups. Qualitative analysis identified three main themes, including (1) HCP perceptions of ostomies, (2) Patient/family-related factors, and (3) Professional roles and collaboration challenges. Ostomy surgery in pediatric IBD requires complex multidisciplinary MDM and education. Perspectives of multidisciplinary HCPs identified patient, HCP, and systems factors that may impact MDM for ostomy surgery. This work highlights nuances in MDM and education in IBD, and the critical role of ongoing research and improved standardized processes to coordinate multidisciplinary ostomy-related MDM and education in this population.

The need for primary care providers in the clinical management of hypermobility spectrum disorders and ehlers-danlos syndrome: a call to action.

Patients with joint-hypermobility and joint-hypermobility spectrum disorders (HSD), including hypermobile Ehlers-Danlos Syndromes (EDS) present numerous co-morbid concerns, and multidisciplinary care has been recommended. The complexity of these patient's needs and increased demand for medical services have resulted in long delays for diagnosis and treatment and exhausted extant clinical resources. Strategies must be considered to ensure patient needs are met in a timely fashion. This opinion piece discusses several potential models of care for joint-hypermobility disorders, several ways in which primary providers can be involved, and argues that primary providers should be an essential and integrated part of the management of these patients, in collaboration with multidisciplinary teams and pediatric subspecialists. We review several strategies and educational opportunities that may better incorporate primary providers into the care and management of these patients, and we also discuss some of the limitations and barriers that need to be addressed to improve provision of care. This includes establishing primary care physicians as the medical home, providing initial diagnostic and treatment referrals while connecting patients with specialty care, and collaboration and coordination with multi-disciplinary teams for more complex needs. Several barriers exist that may hamper these efforts, including a lack of available specialty trainings for providers interested in providing care to patients with EDS and HSD, a lack of expertly derived consensus guidelines, and limited time resources in extant primary care practices. Also, primary providers should have an active voice in the future for the further consideration and development of these presented strategies.

Personalized Exercise Prescription in Long COVID: A Practical Toolbox for a Multidisciplinary Approach.

Objective: To describe our methodology and share the practical tools we have developed to operationalize a multidisciplinary Long COVID clinic that incorporates progressive, personalized exercise prescription as a cornerstone feature. Background: There is a lack of evidence-based guidance regarding optimal rehabilitation strategies for people with Long COVID. Existing guidelines lack precision regarding exercise dosage. As one of Australia's few established multidisciplinary Long COVID clinics, we describe our novel approach to safely incorporating exercise of both peripheral and respiratory muscles, with essential monitoring and management of post-exertional symptom exacerbation. Methods: Working closely with primary health-care providers, our multidisciplinary team screens referrals for people aged 16 and older with Long COVID. Staff apply a three tier model of triage, dependent on the consumer's presenting problems. Exercise-based interventions necessitate detailed monitoring for post-exertional symptom exacerbation both in the clinic and at home. Personalized exercise prescription includes resistance training at a submaximal threshold (4-6 exercises, 3 days/week); whole-body endurance exercise titrated to the individual's progress, at an intensity 4-6/10 (Rate of Perceived Exertion); and for those limited by dyspnoea, high-intensity inspiratory muscle training using a threshold-based handheld device (30 repetitions per day, ≥50% of their maximum inspiratory pressure). Discussion: We have used these approaches for the past 2 years in 250 consumers with no serious adverse events and promising consumer feedback. Our exercise prescription is less conservative than the methods advocated in international guidelines for people with Long COVID, and these more progressive tools may be valuable in other contexts. Conclusion: In our experience, a multidisciplinary clinic-based approach to safely prescribing progressive exercise in Long COVID is feasible. Both peripheral and inspiratory muscle exercise can be effectively titrated to each individual's symptoms, and careful monitoring for post-exertional symptom exacerbation is crucial.

Long COVID affects 5-10% of people following COVID infection. There is little specific guidance on how exercise can be safely prescribed in Long COVID. This paper is the first to provide a detailed description of an Australian multidisciplinary Long COVID clinic, including specific tools and guidance about how exercise can be prescribed while minimising post-exertional symptom exacerbation. The tools described could be valuable to other health facilities striving to optimise multidisciplinary care for people with Long COVID, incorporating safe exercise prescription.

Navigating phenylketonuria management to improve it in Latin America: a systematic literature review and applicability analysis.

Introduction: Phenylketonuria (PKU) is an autosomal recessive metabolic disorder resulting from phenylalanine hydroxylase deficiency, which impacts neurodevelopment. Lifelong low-phenylalanine diets and multidisciplinary care are pivotal for managing PKU. Latin American challenges in PKU care include diverse newborn screening programs, limited specialized healthcare, and resource scarcity. Methods: A systematic literature review was conducted (2010-2023) on PKU management following PRISMA guidelines. Inclusion criteria encompassed English/Spanish articles focusing on PKU management guidelines approved by an organization as well as articles focusing on PKU management in Latin America. After screening 127,276 results, 6 articles were included. Results: Six articles were analyzed, highlighting shared principles like multidisciplinary care, lifelong dietary adherence, personalized plans, and regular monitoring. Guides emphasized regional variations, breastfeeding complexities, and challenges for pregnant women with PKU. Discussion: Multidisciplinary care emerges as critical, incorporating physicians, psychologists, dietitians, nurses, and genetic counselors. Lifelong adherence to low-phenylalanine diets and personalized strategies for different life stages are emphasized. Challenges in Latin America include healthcare gaps, scarce resources, and reliance on international guidance. The importance of breastfeeding, preconception care, and comprehensive support for pregnant women with PKU is underscored. Conclusion: Collaborative efforts are essential to address PKU challenges in Latin America. Advocacy for awareness, specialized training, regional databases, and international collaborations can enhance diagnosis and management, ensuring a better quality of life for PKU individuals in the region. Embracing lessons from existing guides will contribute to improved PKU care and overall well-being.

The Interplay Between Cardiovascular Disease and Lung Cancer.

Cardiovascular disease (CVD) and lung cancer are among the leading causes of mortality worldwide, with a significant interplay that complicates patient management and treatment outcomes. This review explores the complex relationship between various forms of CVD - such as coronary artery disease, heart failure (HF), arrhythmias, and valvular heart disease - and lung cancer. Shared risk factors, including smoking, aging, and chronic inflammation, contribute to the co-occurrence of these conditions. Additionally, treatments for lung cancer, particularly chemotherapy and radiation therapy, can exacerbate CVD, necessitating a multidisciplinary approach to patient care. We delve into specific CVD-related impacts on lung cancer prognosis and vice versa, examining mechanisms, clinical outcomes, and management strategies. Our findings highlight the need for integrated care involving oncologists, cardiologists, and other healthcare providers to optimize treatment plans and improve patient outcomes. Emphasizing comprehensive cardiovascular risk management in lung cancer patients, we advocate for further research to deepen our understanding and develop novel therapeutic approaches, ultimately enhancing the quality of life and survival rates in patients suffering from both CVD and lung cancer.

Consensus-based expert recommendations on the management of MPS IVa and VI in Saudi Arabia.

BACKGROUND: Mucopolysaccharidosis type IVa (Morquio A syndrome) and mucopolysaccharidosis type VI (Maroteaux-Lamy syndrome) are rare inherited lysosomal storage diseases associated with significant functional impairment and a wide spectrum of debilitating clinical manifestations. These conditions are thought to have higher-than-average prevalence rates in Saudi Arabia due to high rates of consanguineous marriage in the country. There are several unmet needs associated with the management of these diseases in Saudi Arabia. MAIN BODY: The aim of this manuscript is to contextualize unmet management needs and provide recommendations to optimize diagnosis, multidisciplinary care delivery, and local data generation in this disease area. An expert panel was assembled comprising seven consultant geneticists from across Saudi Arabia. The Delphi methodology was used to obtain a consensus on statements relating to several aspects of mucopolysaccharidosis types IVa and VI. A consensus was reached for all statements by means of an online, anonymized voting system. The consensus statements pertain to screening and diagnosis, management approaches, including recommendations pertaining to enzyme replacement therapy, and local data generation. CONCLUSION: The consensus statements presented provide specific recommendations to improve diagnostic and treatment approaches, promote multidisciplinary care and data sharing, and optimize the overall management of these rare inherited diseases in Saudi Arabia.

Health markers, depressive symptoms, and community deprivation in a type 2 diabetes multidisciplinary care clinic for youth.

INTRODUCTION: Type 2 diabetes disproportionately affects non-Hispanic/Latino Black and Hispanic/Latino youth. The purpose of this study was to examine whether differences in metabolic risk factors and depressive symptoms exist by race/ethnicity and socioeconomic deprivation and whether these impact clinic attendance and health markers over 1 year in a multidisciplinary type 2 diabetes clinic for youth. METHODS: This study was a retrospective chart review of 54 youth with type 2 diabetes who had both an initial and follow-up visit. Demographic information, metabolic health markers [body mass index (BMI), hemoglobin A1C, liver enzymes, lipid panel, and urine microalbumin], depressive symptoms, and clinic attendance data were obtained from the medical record. Patient address was geocoded to the census tract level to calculate community socioeconomic deprivation. RESULTS: Liver enzymes (ALT and AST) were significantly higher in patients identifying as Hispanic/Latino (ALT M = 97.0 ± 40.6, AST M = 53.6 ± 21.4) and lowest in patients identifying as non-Hispanic/Latino Black (ALT M = 23.1 ± 11.3, F = 10.6 p < .001; AST M = 23.1 ± 11.4, F = 8.1; p < .001) at initial visit. From initial visit to follow-up, there were significant improvements in ALT (F = 13.43, p < .001), AST (F = 6.58, p < .05), and BMIz (F = 18.39, p < .001). Patients identifying as Black or Hispanic showed an increase in depressive symptoms over time, while patients identifying as non-Hispanic White showed a decrease (F = 11.08; p < .05). Unexpectedly, patients living in areas with higher socioeconomic deprivation showed a decrease in hemoglobin A1C over time, while patients living in lower socioeconomic deprivation showed an increase (F = 5.15, p < .05). CONCLUSIONS: Differences exist in metabolic health parameters by race/ethnicity and by socioeconomic deprivation. Multidisciplinary care for youth with type 2 diabetes needs to consider and work to address the systems of inequity experienced by patients that drive disparities in health outcomes.