The Pediatric Integrated Care Survey (PICS) in a multidisciplinary clinic for Down syndrome.

The Pediatric Integrated Care Survey (PICS) is validated for use to measure the caregiver reported experience of integration and efficiency of all the aspects of their child. We began using the PICS survey to track changes in the patient experience, including throughout changing models of care during the COVID-19 pandemic. From February 2019 to June 2023, 62 responses from caregivers of individuals seen in the Massachusetts General Hospital Down Syndrome Program completed the PICS. Responses were scored using the standardized PICS user manual, and descriptive statistics were completed. The raw scores and composite monthly scores of the PICs were graphed in statistical process control charts. The average PICS score was 12.0 (range 2-19) out of a maximum score of 19; no shifts or trends were seen. Items with lowest scores indicated greatest opportunities for improvement related to: advice from other care team members, impact of decisions on the whole family, things causing stress or making it hard because of child's health, and offering opportunities to connect with other families. Studying the PICS in a specialty clinic for Down syndrome for the first time has established a baseline for future quality improvement work and interventions to increase care integration.

Chronic kidney disease: detect, diagnose, disclose-a UK primary care perspective of barriers and enablers to effective kidney care.

Chronic kidney disease (CKD) is a global public health problem with major human and economic consequences. Despite advances in clinical guidelines, classification systems and evidence-based treatments, CKD remains underdiagnosed and undertreated and is predicted to be the fifth leading cause of death globally by 2040. This review aims to identify barriers and enablers to the effective detection, diagnosis, disclosure and management of CKD since the introduction of the Kidney Disease Outcomes Quality Initiative (KDOQI) classification in 2002, advocating for a renewed approach in response to updated Kidney Disease: Improving Global Outcomes (KDIGO) 2024 clinical guidelines. The last two decades of improvements in CKD care in the UK are underpinned by international adoption of the KDIGO classification system, mixed adoption of evidence-based treatments and research informed clinical guidelines and policy. Interpretation of evidence within clinical and academic communities has stimulated significant debate of how best to implement such evidence which has frequently fuelled and frustratingly forestalled progress in CKD care. Key enablers of effective CKD care include clinical classification systems (KDIGO), evidence-based treatments, electronic health record tools, financially incentivised care, medical education and policy changes. Barriers to effective CKD care are extensive; key barriers include clinician concerns regarding overdiagnosis, a lack of financially incentivised care in primary care, complex clinical guidelines, managing CKD in the context of multimorbidity, bureaucratic burden in primary care, underutilisation of sodium-glucose co-transporter-2 inhibitor (SGLT2i) medications, insufficient medical education in CKD, and most recently - a sustained disruption to routine CKD care during and after the COVID-19 pandemic. Future CKD care in UK primary care must be informed by lessons of the last two decades. Making step change, over incremental improvements in CKD care at scale requires a renewed approach that addresses key barriers to detection, diagnosis, disclosure and management across traditional boundaries of healthcare, social care, and public health. Improved coding accuracy in primary care, increased use of SGLT2i medications, and risk-based care offer promising, cost-effective avenues to improve patient and population-level kidney health. Financial incentives generally improve achievement of care quality indicators - a review of financial and non-financial incentives in CKD care is urgently needed.

Effectiveness of integrated person-centered interventions for older people's care: Review of Swedish experiences and experts' perspective.

Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field.

Integrating Patients Into Programmes to Address the Allergy Knowledge Practice Gap.

There is a wide gap between the first publication of new treatments with efficacy and their successful application in clinical practice. In many respects, the management of allergic diseases is a good exemplar of the knowledge/practice gap. It was assumed that systematic reviews and publication of guidelines would ensure timely delivery of effective care, but this has not proved to be the case. While there are many reasons to explain shortcomings in healthcare delivery, the lack of patient and carer involvement in the planning of research, evidence review, guideline development and guideline implementation is most compelling. To achieve adherence to evidence-based guidelines consistently across all levels of the health service requires the implementation of integrated care with clear pathways through which patients can navigate. Quality improvement methodology could be employed to plan and implement integrated care pathways (ICPs). There is evidence that ICPs achieve improved outcomes for acute hospital-based interventions, but less work has focussed on long-term conditions where more diverse agencies are involved. At all stages, stakeholder representation from the full range of healthcare professionals, patients, their families, social services, education, local government and employers must be involved. In this article we review the step-wise and iterative process by which knowledge is implemented into practice to improve patient experience and outcomes We argue how this process can benefit from the involvement of patients and their carers as equal partners, and we discuss how different initiatives have involved patients with allergic diseases. There currently is a gap in evidence that links patient involvement to improved outcomes. We recommend the use of the Core Outcome Sets (COS) and Patient Reported Experience Measures (PREMS) which have been developed for allergic diseases to monitor the effects of implementation research and the impact of patient and carer involvement on outcomes.

Enhancing clinical service design for multimorbidity management: A comprehensive approach to joined-up care for diabetes, chronic kidney disease, and heart failure.

BACKGROUND AND AIMS: Multimorbidity is becoming the norm rather than the exception, especially among the ageing population and people with lower socio-economic status. In addition to the rising healthcare cost, multimorbidity poses considerable difficulty in the delivery of adequate holistic care for affected patients. METHODS: This review presents a discussion of the current barriers to delivering holistic care to people with multimorbidity and proposes a model of clinical care for people living with cardiovascular-kidney-metabolic (CKM) syndrome as an exemplar of a multimorbidity cluster. RESULTS: Single organ/disease services may not be able to provide optimum care to people with multimorbidity due to the potential complex interactions between multiple disease symptoms and management. In addition, people with multimorbidity may be required to attend multiple appointments in different healthcare centres. This may negatively impact access to services due to time and financial burden. Other barriers include co-ordinating communication between healthcare professionals and reduced continuity of care. Optimising CKM health requires patient-centred care led by an interdisciplinary care team who ideally should possess CKM competencies utilising a shared care protocol to coordinate evidence-based care and use of telehealth to empower patients. Stakeholders and policymakers need to adapt new policy models to establish and enhance CKM care models by allocating funds and implementing frameworks for educational reforms. CONCLUSIONS: A CKM service has the potential to increase the uptake of cardiac and renal protective medications as well as optimising metabolic care, increase capacity in both primary and secondary care, improve quality of life and clinical outcomes, reduce patient inconvenience, and importantly allow rapid translation of advances in cardiorenal metabolic diseases into clinical practice.

Long-term impact of an integrated HIV/non-communicable disease care intervention on patient retention in care and clinical outcomes in East Africa.

OBJECTIVE: To describe rates of retention in care and control of hypertension, diabetes and HIV among participants receiving integrated care services for a period of up to 24 months in East Africa. METHODS: Between 5 October 2018 and 23 June 2019 participants enrolled into a prospective cohort study evaluating the feasibility of integrated care delivery for HIV, diabetes and hypertension from a single point of care in Tanzania and Uganda (MOCCA study). Integrated care clinics were established in 10 primary healthcare facilities and care was provided routinely according to national guidelines. Initial follow-up was 12 months. Outcomes were rates of retention in care, proportions of participants with controlled hypertension (blood pressure <140/90 mmHg), diabetes (fasting blood glucose <7.0 mmol/L) and HIV (plasma viral load <1000 copies/ml). The study coincided with the COVID-19 pandemic response. Afterwards, all participants were approached for extended follow-up by a further 12 months in the same clinics. We evaluated outcomes of the cohort at the end of long-term follow-up. RESULTS: The MOCCA study enrolled 2273 participants of whom 1911 (84.5%) were retained in care after a median follow-up of 8 months (Interquartile range: 6.8-10.7). Among these, 1283/1911 (67.1%) enrolled for a further year of follow-up, 458 (24.0%) were unreachable, 71 (3.7%) reverted to vertical clinics (clinics providing services dedicated to study conditions), 31 (1.6%) died and 68 (3.6%) refused participation. Among participants who enrolled for longer follow-up, mean age was 51.4 ± 11.7 years, 930 (72.5%) were female and 509 (39.7%) had multiple chronic conditions. Overall, 1236 (96.3%) [95% confidence interval 95.2%-97.3%] participants were retained in care, representing 1236/2273 (54.3%) [52.3%-56.4%] of participants ever enrolled in the study. Controlled hypertension, diabetes and HIV at the end of follow-up was, 331/618 (53.6%) [49.5%-57.5%], 112/354 (31.6%) [26.8%-36.8%] and 332/343 (96.7%) [94.3%-98.4%] respectively. CONCLUSION: Integrated care can achieve high rates of retention in care long term, but control of blood pressure and blood sugar remains low.

Inter-relationships between cardiovascular, renal and metabolic diseases: Underlying evidence and implications for integrated interdisciplinary care and management.

Cardiovascular, renal and metabolic (CaReMe) diseases are individually among the leading global causes of death, and each is associated with substantial morbidity and mortality. However, as these conditions commonly coexist in the same patient, the individual risk of mortality and morbidity is further compounded, leading to a considerable healthcare burden. A number of pathophysiological pathways are common to diseases of the CaReMe spectrum, including neurohormonal dysfunction, visceral adiposity and insulin resistance, oxidative stress and systemic inflammation. Because of the shared pathology and common co-occurrence of the CaReMe diseases, the value of managing these conditions holistically is increasingly being realized. A number of pharmacological and non-pharmacological approaches have been shown to offer simultaneous metabolic, cardioprotective and renoprotective benefits, leading to improved patient outcomes across the CaReMe spectrum. In addition, increasing value is being placed on interdisciplinary team-based and coordinated care models built on greater integration between specialties to increase the rate of early diagnosis and adherence to practice guidelines, and improve clinical outcomes. This interdisciplinary approach also facilitates integration between primary and specialty care, improving the patient experience, optimizing resources, and leading to efficiencies and cost savings. As the burden of CaReMe diseases continues to increase, implementation of innovative and integrated care delivery models will be essential to achieve effective and efficient chronic disease management and to ensure that patients benefit from the best care available across all three disciplines.

Family Support and Type 2 Diabetes Self-management Behaviors in Underserved Latino/a/x Patients.

BACKGROUND: Latino/a/x families experience persistent Type 2 diabetes mellitus (T2DM) disparities, including higher rates of diagnosis and mortality due to disease complications than their non-Hispanic White counterparts. Though greater social support is associated with improved disease outcomes for Latino/a/x patients with diabetes, research has yet to identify the specific pathways through which social support, and specifically family support, influences self-management. PURPOSE: This study tested a theoretical model highlighting the mechanisms and pathways linking social support and physical health. Specifically, self-efficacy and depression were tested as psychological pathways connecting family support to diabetes self-management behaviors and diabetes morbidity in Latino/a/x patients with T2DM. METHODS: Data from 177 patients were analyzed using structural equation modeling. Measures included diabetes-specific family support needed and received, depressive symptoms, self-efficacy in diabetes management, diabetes self-management behaviors, health appraisal, and hemoglobin A1c. RESULTS: Greater diabetes-specific family support was significantly associated with more frequent engagement in diabetes self-management behaviors, both directly (p < .001) and through diabetes self-efficacy's partial mediation of this relationship (p = .013). Depression was not significantly associated with either family support (support received, p = .281; support needed, p = .428) or self-management behaviors (p = .349). CONCLUSIONS: Family support and diabetes self-efficacy may be important modifiable psychosocial factors to target via integrated care interventions aimed at supporting Latino/a/x patients with T2DM. Future research is needed to test empirically based, culturally adapted interventions to reduce T2DM-related health disparities in this population.

Latino/a/x families experience persistent diabetes disparities, including higher rates of diagnosis and mortality due to disease complications than their non-Hispanic White counterparts. Though greater social support is associated with improved disease outcomes for Latino/a/x patients with diabetes, research has yet to identify the specific pathways through which social support, and specifically family support, influences self-management. This study examined diabetes self-efficacy and depression as potential links in the relationship between family support and diabetes self-management behaviors. Analyses revealed a significant association between greater diabetes-related family support and more frequent engagement in diabetes self-management behaviors, both directly and through diabetes self-efficacy's partial mediation of the relationship. This points to family support and diabetes self-efficacy as important modifiable psychosocial factors that can be targeted in integrated care interventions aimed at supporting Latino/a/x patients with diabetes.

A Tailored Virtual Program for Alcohol Use Disorder Treatment Among Liver Transplant Candidates and Recipients Is Feasible and Associated With Lower Post-Transplant Relapse.

BACKGROUND: Alcohol-associated liver disease (ALD) is a leading indication for liver transplant (LT) in the United States. Rates of early liver transplant (ELT) with less than 6 months of sobriety have increased substantially. Patients who receive ELT commonly have alcohol-associated hepatitis (AH) and are often too ill to complete an intensive outpatient program (IOP) for alcohol use disorder (AUD) prior to LT. ELT recipients feel alienated from traditional IOPs. METHODS: We implemented Total Recovery-LT, a tailored virtual outpatient IOP specific for patients under evaluation or waitlisted for LT who were too ill to attend community-based alcohol treatment programs. The 12-week program consisted of weekly group and individual counseling delivered by a master's level Certified Addiction Counselor trained in the basics of LT.  Treatment consisted of 12-Step Facilitation, Motivational Interviewing, and Cognitive Behavioral Therapy. We report on program design, implementation, feasibility and early outcomes. RESULTS: From March 2021 to September 2022, 42 patients (36% female, 23 in LT evaluation, 19 post-transplant) enrolled across five cohorts with 76% (32/42) completing the program. Alcohol relapse was more common among noncompleters versus those who completed the program (8/10, 80% vs. 7/32, 22%, p = 0.002). History of trauma or post-traumatic stress symptoms were associated with lower likelihood of completion. Patients' desire for continued engagement after completion led to the creation of a monthly alumni group. CONCLUSIONS: Our integrated IOP model for patients with high-risk AUD in LT evaluation or post-transplant is well-received by patients and could be considered a model for LT programs.

The role of neuropsychology in the care of patients with functional neurological symptom disorder.

OBJECTIVE: Functional neurological symptom disorder (FNSD) is a neuropsychiatric condition characterized by signs/symptoms associated with brain network dysfunction. FNSDs are common and are associated with high healthcare costs. FNSDs are relevant to neuropsychologists, as they frequently present with chronic neuropsychiatric symptoms, subjective cognitive concerns, and/or low neuropsychological test scores, with associated disability and reduced quality of life. However, neuropsychologists in some settings are not involved in care of patients with FNSDs. This review summarizes relevant FNSD literature with a focus on the role of neuropsychologists. METHODS: A brief review of the literature is provided with respect to epidemiology, public health impact, symptomatology, pathophysiology, and treatment. RESULTS: Two primary areas of focus for this review are the following: (1) increasing neuropsychologists' training in FNSDs, and (2) increasing neuropsychologists' role in assessment and treatment of FNSD patients. CONCLUSIONS: Patients with FNSD would benefit from increased involvement of neuropsychologists in their care.