Monitoring and integrated care coordination of patients with alpha-mannosidosis: A global Delphi consensus study.

INTRODUCTION: Current literature lacks consensus on initial assessments and routine follow-up care of patients with alpha-mannosidosis (AM). A Delphi panel was conducted to generate and validate recommendations on best practices for initial assessment, routine follow-up care, and integrated care coordination of patients with AM. METHODS: A modified Delphi method involving 3 rounds of online surveys was used. An independent administrator and 2 nonvoting physician co-chairs managed survey development, anonymous data collection, and analysis. A multidisciplinary panel comprising 20 physicians from 12 countries responded to 57 open-ended questions in the first survey. Round 2 consisted of 11 ranking questions and 44 voting statements. In round 3, panelists voted to validate 60 consensus statements. The panel response rate was ≥95% in all 3 rounds. Panelists used 5-point Likert scales to indicate importance (score of ≥3) or agreement (score of ≥4). Consensus was defined a priori as ≥75% agreement with ≥75% of panelists voting. RESULTS: Consensus was reached on 60 statements, encompassing 3 key areas: initial assessments, routine follow-up care, and treatment-related follow-up. The panel agreed on the type and frequency of assessments related to genetic testing, baseline evaluations, quality of life, biochemical measures, affected body systems, treatment received, and integrated care coordination in patients with AM. Forty-nine statements reached 90% to 100% consensus, 8 statements reached 80% to 85% consensus, and 1 statement reached 75% consensus. Two statements each reached consensus on 15 baseline assessments to be conducted at the initial follow-up visit after diagnosis in pediatric and adult patients. CONCLUSION: This is the first Delphi study providing internationally applicable, best-practice recommendations for monitoring patients with AM that may improve their care and well-being.

Brief behavioral intervention for chronic pain in integrated primary care: What are we waiting for?

Despite high rates of pain-related concerns among primary care patients and associated increases in health care costs (Gore et al., 2012; Mills et al., 2016), psychological or behavioral treatments that are well suited for use in integrated primary care (IPC) settings remain sparsely implemented. Psychological treatment for chronic pain has been recommended for many years (Darnall, 2021; Institute of Medicine (US) Committee on Advancing Pain Research, Care and Education, 2011; Kligler et al., 2018), and the emphasis on the application of nonpharmacological treatment has intensified following concerns about opioid safety. There is abundant empirical support for the use of psychological treatment for chronic pain, such as cognitive behavioral therapy (CBT) in specialty settings (Williams et al., 2021). The evidence to support the use of "brief treatments" in IPC is in a comparatively early stage. The limited state of the research might suggest that brief behavioral intervention for chronic pain is years away from being ready for translation to everyday clinical practice. But why wait? We therefore conducted a focused narrative review of peer-reviewed research on brief psychotherapy for chronic pain in adults that could be feasibly employed in IPC settings through more widely adopted models, such as primary care behavioral health. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Effects of Practice Ownership and Integration of Health Services on Adherence to Diabetes Guidelines.

OBJECTIVE: There has been a trend toward hospital systems and insurers acquiring privately owned physician practices and subsequently converting them into vertically integrated practices. The purpose of this study is to observe whether this change in ownership of a medical practice influences adherence to clinical guidelines for the management of type 1 and type 2 diabetes. METHODS: This is an observational study using pooled cross-sectional data (2014-2016 and 2018-2019) from the National Ambulatory Medical Care Survey, a nationally representative probability sample of US office-based physician visits. A total of 7499 chronic routine follow ups and preventative care visits to non-integrated (solo and group physician practices) and integrated practices were analyzed to see whether guideline concordant care was provided. Measures included 7 services that are recommended annually for individuals with type 1 and type 2 diabetes (HbA1c, lipid panel, serum creatinine, depression screening, influenza immunization, foot examination, and BMI). RESULTS: Compared to non-integrated physician practices, vertically integrated practices had higher rates of hemoglobin A1C testing (odds ratio 1.58 [95% CI 1.07-2.33], P < .05), serum creatine testing (odds ratio 1.53 [95% CI 1.02-2.29], P < .05), foot examinations (odds ratio 2.03 [95% CI 0.98-4.22], P = .058), and BMI measuring (odds ratio 1.54 [95% CI 0.99-2.39], P = .054). There was no significant difference in lipid panel testing, depression screenings, or influenza immunizations. CONCLUSIONS: Our results show that integrated medical practices have a higher adherence to diabetes practice guidelines than non-integrated practices. However, rates of services provided regardless of ownership were low.

Standardization of Emergency Department Clinical Note Templates: A Retrospective Analysis across an Integrated Health System.

BACKGROUND AND OBJECTIVE: Clinical documentation is essential for conveying medical decision-making, communication between providers and patients, and capturing quality, billing, and regulatory measures during emergency department (ED) visits. Growing evidence suggests the benefits of note template standardization; however, variations in documentation practices are common. The primary objective of this study is to measure the utilization and coding performance of a standardized ED note template implemented across a nine-hospital health system. METHODS: This was a retrospective study before and after the implementation of a standardized ED note template. A multi-disciplinary group consensus was built around standardized note elements, provider note workflows within the electronic health record (EHR), and how to incorporate newly required medical decision-making elements. The primary outcomes measured included the proportion of ED visits using standardized note templates, and the distribution of billing codes in the 6 months before and after implementation. RESULTS: In the preimplementation period, a total of six legacy ED note templates were being used across nine EDs, with the most used template accounting for approximately 36% of ED visits. Marked variations in documentation elements were noted across six legacy templates. After the implementation, 82% of ED visits system-wide used a single standardized note template. Following implementation, we observed a 1% increase in the proportion of ED visits coded as highest acuity and an unchanged proportion coded as second highest acuity. CONCLUSION: We observed a greater than twofold increase in the use of a standardized ED note template across a nine-hospital health system in anticipation of the new 2023 coding guidelines. The development and utilization of a standardized note template format relied heavily on multi-disciplinary stakeholder engagement to inform design that worked for varied documentation practices within the EHR. After the implementation of a standardized note template, we observed better-than-anticipated coding performance.

Development and validation of impact of early integration of palliative care and oncology(IEI PCO) questionnaire: a survey for medical oncologists and nurses.

OBJECTIVES: Many associations have recently recommended early integration of oncology and palliative care for more standard cancer care and better quality of life. We aimed to create a questionnaire to assess the opinion of medical oncologists and nurses about the clinical impact of the integrated palliative care and oncology (PCO) program. METHODS: A novel semi-structured questionnaire called Impact of Early Integration of Palliative Care Oncology (IEI PCO) questionnaire was developed and tested for validity and reliability then distributed to the oncologists and nurses working in Kuwait Cancer Control Center. RESULTS: After the pilot stage, testing the final questionnaire for validity and reliability was done with satisfactory results. Finally, the complete questionnaires were 170 out of 256 (response rate 66.41%). More awareness about the available palliative care services and the new available PCO services (p-value < 0.001 for all). Most of the oncologists and nurses agreed with the currently available structure of PCO, appreciated the patients' discharge plan and continuity of care of palliative medicine, admitted less work burden, a better attitude, and higher satisfaction (p-value for all < 0.001) toward palliative care. Significant improvements in symptoms were appreciated by oncologists and nurses after the integration of palliative care (p-value for all < 0.001. Oncologists and nurses valued repeated honest communication, discussion of the goals of care, dealing more effectively with ending active treatment, and higher acceptance of patients and families of PC policy of transfer, and significant progress in the care of end-of-life symptoms (p-value for all < 0.001). CONCLUSIONS: The IEI PCO questionnaire demonstrated the psychometric criteria for content, face, and construct validity and reliability. It provides a valuable tool to assess the impact of PCO integration. The opinion of medical oncologists and nurses was significantly positive toward the early integration of PCO in Kuwait in most aspects of care. This integration led to improved symptom control, end-of-life care, communication, and planned discharge and follow-up plans. Moreover, decreases the work burden, improves attitude, higher satisfaction of the oncology staff, and continuity of care.

The expert consensus on care and education for patients with diabetic kidney disease in Taiwan.

Increasing prevalence of type 2 DM (T2DM) and diabetic kidney disease (DKD) has posed a great impact in Taiwan. However, guidelines focusing on multidisciplinary patient care and patient education remain scarce. By literature review and expert discussion, we propose a consensus on care and education for patients with DKD, including general principles, specifics for different stages of chronic kidney disease (CKD), and special populations. (i.e. young ages, patients with atherosclerotic cardiovascular disease or heart failure, patients after acute kidney injury, and kidney transplant recipients). Generally, we suggest performing multidisciplinary patient care and education in alignment with the government-led Diabetes Shared Care Network to improve the patients' outcomes for all patients with DKD. Also, close monitoring of renal function with early intervention, control of comorbidities in early stages of CKD, and nutrition adjustment in advanced CKD should be emphasized.

Integrated health and social care for people experiencing homelessness

This guideline covers providing integrated health and social care services for people experiencing homelessness. It aims to improve access to and engagement with health and social care, and ensure care is coordinated across different services. Who is it for?: Local authorities Commissioners and providers of services Healthcare practitioners in primary, secondary and tertiary care Social care practitioners People who experience homelessness, their families, advocates, and the public

Defining High-Quality Integrated Head and Neck Cancer Care Through a Composite Outcome Measure: Textbook Outcome.

OBJECTIVES/HYPOTHESIS: To further improve the quality of head and neck cancer (HNC) care, we developed a composite measure defined as "textbook outcome" (TO). METHODS: We analyzed a retrospective cohort of patients after curvative-intent primary surgery, radiotherapy (RT), or chemoradiation (CRT) for HNC between 2015 and 2018 at the Netherlands Cancer Institute. TO was defined as 1) the start of treatment within 30 days, 2a) satisfactory pathologic outcomes, without 30-day postoperative complications, for the surgically treated group, and 2b), for RT and CRT patients, no unexpected or prolonged hospitalization and toxicity after the completion of treatment as planned. RESULTS: In total, 392 patients with HNC were included. An overall TO was achieved in 9.6% of patients after surgery, 20.6% after RT, and 2.2% after CRT. Two indicators (margins >5 mm and start treatment <30 days) reduced TO radically for both groups. CONCLUSION: TO can aid the evaluation of the quality of care for HNC patients and guide improvement processes. LEVEL OF EVIDENCE: 3 Laryngoscope, 132:78-87, 2022.

Aligning care with the personal values of patients with complex care needs.

OBJECTIVE: To identify opportunities to align care with the personal values of patients from three distinct groups with complex medical, behavioral, and social needs. DATA SOURCES/STUDY SETTING: Between June and August 2019, we conducted semi-structured interviews with individuals with complex care needs in two integrated health care delivery systems. STUDY DESIGN: Qualitative study using semi-structured interviews. DATA COLLECTION METHODS: We interviewed three groups of patients at Kaiser Permanente Washington and Kaiser Permanente Colorado representing three distinct profiles of complex care needs: Group A ("obesity, opioid prescription, and low-resourced neighborhood"), Group B ("older, high medical morbidity, emergency department, and hospital use"), and Group C ("older, mental and physical health concerns, and low-resourced neighborhood"). These profiles were identified based on prior work and prioritized by internal primary care stakeholders. Interview transcripts were analyzed using thematic analysis. PRINCIPAL FINDINGS: Twenty-four patients participated; eight from each complex needs profile. Mean age across groups was 71 (range 48-86) years. We identified five themes common across the three groups that captured patients' views regarding values-aligned care. These themes focused on the importance of care teams exploring and acknowledging a patient's values, providing access to nonphysician providers who have different perspectives on care delivery, offering values-aligned mental health care, ensuring connection to community-based resources that support values and address needs, and providing care that supports the patient plus their family and caregivers. CONCLUSIONS: Our results suggest several opportunities to improve how care is delivered to patients with different complex medical, behavioral, and social needs. Future research is needed to better understand how to incorporate these opportunities into health care.

Clinical Outcomes Following Regionalization of Gastric Cancer Care in a US Integrated Health Care System.

PURPOSE: In 2016, Kaiser Permanente Northern California regionalized gastric cancer care, introducing a regional comprehensive multidisciplinary care team, standardizing staging and chemotherapy, and implementing laparoscopic gastrectomy and D2 lymphadenectomy for patients eligible for curative-intent surgery. This study evaluated the effect of regionalization on outcomes. METHODS: The retrospective cohort study included gastric cancer cases diagnosed from January 2010 to May 2018. Information was obtained from the electronic medical record, cancer registry, state vital statistics, and chart review. Overall survival was compared in patients with all stages of disease, stage I-III disease, and curative-intent gastrectomy patients using annual inception cohorts. For the latter, the surgical approach and surgical outcomes were also compared. RESULTS: Among 1,429 eligible patients with gastric cancer with all stages of disease, one third were treated after regionalization, 650 had stage I-III disease, and 394 underwent curative-intent surgery. Among surgical patients, neoadjuvant chemotherapy utilization increased from 35% to 66% (P < .0001), laparoscopic gastrectomy increased from 18% to 92% (P < .0001), and D2 lymphadenectomy increased from 2% to 80% (P < .0001). Dissection of ≥ 15 lymph nodes increased from 61% to 95% (P < .0001). Surgical complication rates did not appear to increase after regionalization. Length of hospitalization decreased from 7 to 3 days (P < .001). Overall survival at 2 years was as follows: all stages, 32.8% pre and 37.3% post (P = .20); stage I-III cases with or without surgery, 55.6% and 61.1%, respectively (P = .25); and among surgery patients, 72.7% and 85.5%, respectively (P < .03). CONCLUSION: Regionalization of gastric cancer care within an integrated system allowed comprehensive multidisciplinary care, conversion to laparoscopic gastrectomy and D2 lymphadenectomy, increased overall survival among surgery patients, and no increase in surgical complications.

Dual-eligible beneficiaries and inadequate access to primary care.

OBJECTIVES: To determine whether enough primary care providers are in close proximity to where dual-eligible beneficiaries live to provide the capacity needed for integrated care models. STUDY DESIGN: Secondary data analysis using dual-eligible enrollment data and health care workforce data. METHODS: We determined the density of dual-eligible beneficiaries per 1000 population in 2017 for each of 3142 US counties. County-level supply of primary care physicians (PCPs), primary care nurse practitioners, and physician assistants was determined. RESULTS: One-third of the 791 counties with the highest density of dual-eligible beneficiaries had PCP shortages. Counties with the highest density of dual-eligible beneficiaries and the fewest primary care clinicians of any type were concentrated in Southeastern states. These areas also had some of the highest coronavirus disease 2019 outbreaks within their states. CONCLUSIONS: States in the Southeastern region of the United States with some of the most restrictive scope-of-practice laws have an inadequate supply of primary care providers to serve a high concentration of dual-eligible beneficiaries. The fragmented care of the dually eligible population leads to extremely high costs, prompting policy makers to consider integrated delivery models that emphasize primary care. However, primary care workforce shortages will be an enduring challenge without scope-of-practice reforms.

Scaling-Up Stage 4 Pediatric Obesity Clinics: Identifying Barriers and Future Directions Using Implementation Science.

Nearly one-fifth of the pediatric population in the United States has obesity. Comprehensive behavioral interventions, with at least 26 contact hours, are the recommended treatment for pediatric obesity; however, there are various barriers to implementing treatment. This Perspective applies the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework to address barriers to implementing multidisciplinary pediatric weight management clinics and identify potential solutions and areas for additional research. Lack of insurance coverage and reimbursement, high operating costs, and limited access to stage 4 care clinics with sufficient capacity were among the main barriers identified. Clinicians, researchers, and patient advocates are encouraged to facilitate conversations with insurance companies and hospital and clinic administrators, increase telehealth adoption, request training to improve competency and self-efficacy discussing and implementing obesity care, and advocate for more stage 4 clinics.

Natural Language Processing Performance for the Identification of Venous Thromboembolism in an Integrated Healthcare System.

Real-time identification of venous thromboembolism (VTE), defined as deep vein thrombosis (DVT) and pulmonary embolism (PE), can inform a healthcare organization's understanding of these events and be used to improve care. In a former publication, we reported the performance of an electronic medical record (EMR) interrogation tool that employs natural language processing (NLP) of imaging studies for the diagnosis of venous thromboembolism. Because we transitioned from the legacy electronic medical record to the Cerner product, iCentra, we now report the operating characteristics of the NLP EMR interrogation tool in the new EMR environment. Two hundred randomly selected patient encounters for which the imaging report assessed by NLP that revealed VTE was present were reviewed. These included one hundred imaging studies for which PE was identified. These included computed tomography pulmonary angiography-CTPA, ventilation perfusion-V/Q scan, and CT angiography of the chest/ abdomen/pelvis. One hundred randomly selected comprehensive ultrasound (CUS) that identified DVT were also obtained. For comparison, one hundred patient encounters in which PE was suspected and imaging was negative for PE (CTPA or V/Q) and 100 cases of suspected DVT with negative CUS as reported by NLP were also selected. Manual chart review of the 400 charts was performed and we report the sensitivity, specificity, positive and negative predictive values of NLP compared with manual chart review. NLP and manual review agreed on the presence of PE in 99 of 100 cases, the presence of DVT in 96 of 100 cases, the absence of PE in 99 of 100 cases and the absence of DVT in all 100 cases. When compared with manual chart review, NLP interrogation of CUS, CTPA, CT angiography of the chest, and V/Q scan yielded a sensitivity = 93.3%, specificity = 99.6%, positive predictive value = 97.1%, and negative predictive value = 99%.

Implementation outcomes of national decentralization of integrated outpatient services for severe non-communicable diseases to district hospitals in Rwanda.

OBJECTIVES: Effective coverage of non-communicable disease (NCD) care in sub-Saharan Africa remains low, with the majority of services still largely restricted to central referral centres. Between 2015 and 2017, the Rwandan Ministry of Health implemented a strategy to decentralise outpatient care for severe chronic NCDs, including type 1 diabetes, heart failure and severe hypertension, to rural first-level hospitals. This study describes the facility-level implementation outcomes of this strategy. METHODS: In 2014, the Ministry of Health trained two nurses in each of the country's 42 first-level hospitals to implement and deliver nurse-led, integrated, outpatient NCD clinics, which focused on severe NCDs. Post-intervention evaluation occurred via repeated cross-sectional surveys, informal interviews and routinely collected clinical data over two rounds of visits in 2015 and 2017. Implementation outcomes included fidelity, feasibility and penetration. RESULTS: By 2017, all NCD clinics were staffed by at least one NCD-trained nurse. Among the approximately 27 000 nationally enrolled patients, hypertension was the most common diagnosis (70%), followed by type 2 diabetes (19%), chronic respiratory disease (5%), type 1 diabetes (4%) and heart failure (2%). With the exception of warfarin and beta-blockers, national essential medicines were available at more than 70% of facilities. Clinicians adhered to clinical protocols at approximately 70% agreement with evaluators. CONCLUSION: The government of Rwanda was able to scale a nurse-led outpatient NCD programme to all first-level hospitals with good fidelity, feasibility and penetration as to expand access to care for severe NCDs.

Partners in care.

This festschrift contribution, written for my colleague and mentor John Graham, reflects on geneticist-genetic counselor interactions in clinical care, samples of alternative models of care for pediatric and general genetic counselors, and avenues for expanding access to genetic healthcare services utilizing genetic counselors.

Development of integration indexes to determine the extent of family planning and child immunization services integration in health facilities in urban areas of Nigeria.

BACKGROUND: Integrating family planning into child immunization services may address unmet need for contraception by offering family planning information and services to postpartum women during routine child immunization visits. However, policies and programs promoting integration are often based on insubstantial or conflicting evidence about its effects on service delivery and health outcomes. While integration models vary, many studies measure integration as binary (a facility is integrated or not) rather than a multidimensional and varying continuum. It is thus challenging to ascertain the determinants and effects of integrated service delivery. This study creates Facility and Provider Integration Indexes, which measure capacity to support integrated family planning and child immunization services and applies them to analyze the extent of integration across 400 health facilities. METHODS: This study utilizes cross-sectional health facility (N = 400; 58% hospitals, 42% primary healthcare centers) and healthcare provider (N = 1479) survey data that were collected in six urban areas of Nigeria for the impact evaluation of the Nigerian Urban Reproductive Health Initiative. Principal Component Analysis was used to develop Provider and Facility Integration Indexes that estimate the extent of integration in these health facilities. The Provider Integration Index measures provider skills and practices that support integrated service delivery while the Facility Integration Index measures facility norms that support integrated service delivery. Index scores range from zero (low) to ten (high). RESULTS: Mean Provider Integration Index score is 5.42 (SD 3.10), and mean Facility Integration Index score is 6.22 (SD 2.72). Twenty-three percent of facilities were classified as having low Provider Integration scores, 32% as medium, and 45% as high. Fourteen percent of facilities were classified as having low Facility Integration scores, 38% as medium, and 48% as high. CONCLUSION: Many facilities in our sample have achieved high levels of integration, while many others have not. Results suggest that using more nuanced measures of integration may (a) more accurately reflect true variation in integration within and across health facilities, (b) enable more precise measurement of the determinants or effects of integration, and (c) provide more tailored, actionable information about how best to improve integration. Overall, results reinforce the importance of utilizing more nuanced measures of facility-level integration.

Customer Centricity in Medical Affairs Needs Human-centric Artificial Intelligence.

The evolution of healthcare, together with the changing behaviour of healthcare professionals, means that medical affairs functions of pharmaceutical organisations are constantly reinventing themselves. The emergence of digital ways of working, expedited by the COVID-19 pandemic, means that pharmaceutical-healthcare relationships are evolving to operate in an increasingly virtual world. The value of the pharmaceutical medical affairs function is dependent on understanding customers' needs and providing the right knowledge at the right time to physicians. This requires a human-centric artificial intelligence (AI) approach for medical affairs, which allows the function to query internal and external data sets in a conversational format and receive timely, accurate and concise intelligence on their customers.