Next-Generation Sequencing to Help Monitor Patients Infected with HIV: Ready for Clinical Use?

Given the extreme variability of the human immunodeficiency virus (HIV) and its ability to replicate as complex viral populations, HIV variants with reduced susceptibility to antiretroviral drugs or with specific coreceptor tropism (CCR5 and/or CXCR4) may be present as minority members of the viral quasispecies. The sensitivity of current HIV genotypic or phenotypic assays is limited, and thus, these tests usually fail to detect low-abundance viral variants. Next-generation (deep) sequencing (NGS) produces an enormous amount of information that allows the detection of minority HIV variants at levels unimaginable using standard Sanger sequencing. NGS technologies continue to evolve, opening new and more affordable opportunities to implement this methodology in clinical laboratories, and HIV is not an exception. The ample use of a battery of more effective antiretroviral drugs, together with careful patient monitoring based on HIV resistance testing, has resulted in HIV-infected patients whose disease is usually well-controlled. The vast majority of adherent patients without detectable resistance become virologically suppressed; however, a subset of these patients with undetectable resistance by standard methods may fail antiretroviral therapy, perhaps due to the presence of minority HIV-resistant variants. Novel NGS-based HIV assays with increased sensitivity for identifying low-level drug resistance and/or coreceptor tropism may play an important role in the success of antiretroviral treatments.     

Integrated Renal Care: Are Nephrologists Ready for Change in Renal Care Delivery Models?

The Affordable Care Act is the most visible element of health care reform. However, both before the Affordable Care Act and now with the acceleration since its passage, the Centers for Medicare and Medicaid have been and are testing integrated care models in medicine in general as well as nephrology. The pressures to do so come from the well known increasing costs of health care in the face of a number of clear gaps in quality. The future will likely be more and more integrated care with less and less fee for service. More measurement of quality and the linking of quality measures to payments are also all but certain future elements of the health care economy. Nephrologists need to educate themselves on these trends and be prepared to engage them for the good of the profession and the improvement in care for patients.     

Resynchronization Therapy for Patients with Congenital Heart Disease: Are We Ready for Prime Time?

Purpose of Review

This review aims to summarize and provide an update of evidence for cardiac resynchronization therapy (CRT) in pediatric and adult congenital heart disease (CHD).

Recent Findings

CRT is a valuable tool in the treatment of heart failure in the setting of CHD. Current evidence points toward the ability of this therapy to increase hemodynamic parameters and reduce heart failure-related symptoms. Within the CHD population, patients with systemic left ventricles appear to benefit the most from CRT. Utilization of CRT in CHD has been technically difficult due to the complexity and variety of anatomic substrates. However, lateral thoracotomies and other advances have made implantation more feasible.

Summary

The most up-to-date evidence continues to support the use of CRT in the heterogeneous population of CHD with careful and individualized patient selection. Further studies are needed to evaluate the utility of CRT for specific anatomic substrates within this population.

     

Access to What for Whom? How Care Delivery Innovations Impact Health Equity

Achieving health equity (where every person has the opportunity to attain their full health potential) requires the removal of obstacles to health, including barriers to high-quality medical care. Innovations in service delivery can inadvertently maintain, worsen, or introduce inequities. As such, implementation of innovations must be accompanied by a dual commitment to evaluate impact on marginalized groups and to restructure systems that obstruct people from health and healthcare. Understanding the impact innovations have on access to high-quality care is central to this effort. In this Perspective, we join conceptual models of healthcare access and quality with health equity frameworks to conceptualize healthcare receipt as a series of interactions between people and systems unfolding over time. This synthesized model is applied to illustrate the effects of telemedicine on patient, population, and system outcomes. Telemedicine may improve or worsen health equity by altering access to care and by altering quality of care once it is accessed. Teasing out these varied effects is complex and requires considering multilevel influences on the outcome of a care-seeking episode. This synthesized model can be used to inform research, practice, and policy surrounding the equity implications of care delivery innovations more broadly.

Healthcare institutions rapidly implemented care delivery innovations to manage the risks presented by the coronavirus disease 2019 (COVID-19) pandemic. Among the most widespread was a marked increase in the use of telemedicine, which is the practice of medicine using technology to delivery care at a distance. The rapid increased use drew attention to the risks and benefits of this approach.¹ Telemedicine has the potential to improve access for populations historically excluded from high-quality healthcare, but attention must be paid to the context in which it is implemented such that it does not worsen health disparities by exacerbating inequities in access or by introducing inequities in quality.^2–4Anticipating and managing these trade-offs requires an understanding of access as a series of interactions between people and care delivery systems embedded within larger sociopolitical structures that disproportionately oppress certain populations.⁵ In this Perspective, we describe a synthesized conceptual model of healthcare access that joins Levesque’s Conceptual Framework for Healthcare Access⁶ with a model from systems engineering (Systems Engineering Initiative for Patient Safety [SEIPS])^7,8 and anti-oppression frameworks (Public Health Critical Race Praxis and the Remove, Repair, Remediate, Restructure and Provide [R4P] Framework).^9–11 Because these frameworks address concepts that are intimately related (access, patient safety and quality, health equity), they cannot be considered in isolation, yet their connections have not been explicitly articulated. We apply the synthesized model to key questions about the use of telemedicine during the COVID-19 pandemic to demonstrate how the model can be used to (1) critically assess the impact of innovations on the provision of equitable care and (2) inform actions to repair, restructure, remediate, and remove systems of oppression to achieve health equity.⁹     

The Perspective of Patients with Congenital Heart Disease: Does Health Care Meet Their Needs?

Objective. A first step in the delivery of tailored care is answering the following question: does health care meet the needs of patients? Therefore patients' perspective on health care use and their needs was examined. The design used was cross‐sectional questionnaire study. Patients. A total of 1109 adult congenital heart defect (CHD) patients attending one of eight Dutch hospitals were randomly selected from a national database (10% of all registered patients). Main Outcome Measures. Patient reported questionnaires on in‐ and outpatient health care use during the past year and need for additional care. Results. A total of 66% and 40% of patients had contact with their cardiologist and general practitioner, respectively. Six to 10 percent were hospitalized, operated upon, or visited the emergency room. For the majority, the amount of contact was sufficient. Most patients indicated that the communication skills and expertise of the cardiologist and general practitioner were sufficient, and health care improvements were not necessary. Frequent health care users had a poor functional status and frequent contact with their cardiologist and general practitioner. Patients who want more contact with their cardiologist rated the communication skills of the cardiologist as insufficient. Conclusions. For most patients, the amount and quality of care are both sufficient. Patients who rate the communication skills of the cardiologist as insufficient have need more contact. In addition to the recommended training program as described in the American College of Cardiology/American Heart Association (ACC/AHA) and European Society of Cardiology (ESC) guidelines, we recommend the incorporation of communication training. This is the first study to provide insight into health care use and needs of CHD patients in countries with a compulsory health insurance system from the patient perspective.     

Should Health Care Providers be Accountable for Patients’ Care Experiences?

Measures of patients’ care experiences are increasingly used as quality measures in accountability initiatives. As the prominence and financial impact of patient experience measures have increased, so too have concerns about the relevance and fairness of including them as indicators of health care quality. Using evidence from the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) surveys, the most widely used patient experience measures in the United States, we address seven common critiques of patient experience measures: (1) consumers do not have the expertise needed to evaluate care quality; (2) patient “satisfaction” is subjective and thus not valid or actionable; (3) increasing emphasis on improving patient experiences encourages health care providers and plans to fulfill patient desires, leading to care that is inappropriate, ineffective, and/or inefficient; (4) there is a trade-off between providing good patient experiences and providing high-quality clinical care; (5) patient scores cannot be fairly compared across health care providers or plans due to factors beyond providers’ control; (6) response rates to patient experience surveys are low, or responses reflect only patients with extreme experiences; and (7) there are faster, cheaper, and more customized ways to survey patients than the standardized approaches mandated by federal accountability initiatives.KEY WORDS: patient satisfaction, performance measurement, quality assessment, patient-centered care     

How Should We Use Age to Ration Health Care? Lessons from the Case of Kidney Transplantation

Competing visions for health reform in the United States and renewed interest in health technology assessment (HTA) have led to fierce national debates about the appropriateness of rationing. Because of a limited supply of organs, kidney transplantation has always required rationing and overt discussion of the ethics that guide it, but the field of transplantation has also contended recently with internal calls for a new rationing system. The aim of the Life Years from Transplantation (LYFT) proposal is to allocate kidneys to patients who obtain the greatest survival benefit from transplantation, which would lengthen the lives of kidney transplant recipients but restrict the ability of older Americans to obtain a transplant. The debate around the LYFT proposal reveals the ethical and policy challenges of identifying which patients should receive a treatment based on the results of cost‐effectiveness and other HTA studies. This article argues that attempts to use HTA for healthcare rationing are likely to disadvantage older patients. Guiding principles to help ensure that resources such as kidneys are justly allocated across the life span are proposed.     

Racial and Social Disparities in Health and Health Care Delivery among Patients with Parkinson’s Disease and Related Disorders in a Multiracial Clinical Setting

There are racial and socioeconomic disparities in the care of patients with Parkinson’s disease (PD). Bellevue Hospital Center (BHC) in New York City is the oldest public hospital in the United States providing care to a multiracial, socioeconomically diverse and medically underserved population. We investigated racial and social disparities in providing care to patients with PD and related disorders at BHC compared to a NYU Langone Health, a Parkinson’s Foundation Center of Excellence. Retrospective chart review of patients with diagnosis of PD or PD-related disorders evaluated at BHC or at NYU outpatient clinics from January 2012 to August 2017. 100 patients were enrolled from each site: BHC (55% men); NYU (49% men). The majority of patients at NYU were White (77%), compared to 14% at BHC; Hispanic patients comprised the majority at BHC (56%) (p?<?0.001). BHC patients had more clinic visits per year compared to the NYU cohort (2.88 vs. 2.40, p?=?0.001). BHC patients were less likely to self-report exercise (p?=?0.047) or participation in physical therapy (p?=?0.015). There were no clinically significant differences in diagnosis type, time to diagnosis, average Hoehn & Yahr or levodopa equivalent dose. Compared to a Parkinson’s Foundation Center of Excellence, PD patients in a public hospital system are more racially diverse, are less likely to be insured, have higher rates of care utilization and are less likely to access necessary interventions such as physical therapy and exercise.

     

Epilogue: How Will We Care for Patients with Early Arthritis?

This article draws conclusions about pinpointing the actual onset of disease and when interventions should start to occur. The identification of necessary biomarkers will be discussed. We will also examine the incremental consequences of delaying therapy, particularly for 'preclinical' disease. Medical economic analyses can help us balance benefits and avoid some adverse outcomes for patients. To conclude, we will discuss the new roles that need developing for primary care physicians and non-physican providers.     

Is Patients’ Preferred Involvement in Health Decisions Related to Outcomes for Patients with HIV?

BACKGROUND Previous studies suggest that patients who are more involved in their medical care have better outcomes. OBJECTIVES We sought to compare health care processes and outcomes for patients with HIV based on their preferred level of involvement in health decisions. DESIGN Cross-sectional analysis of audio computer-assisted interviews with patients at an urban HIV clinic. PATIENTS One thousand and twenty-seven patients awaiting an appointment with their primary care provider. MEASURES Patients were asked how they preferred to be involved in decisions (doctor makes most or all decisions, doctor and patient share decisions, patient makes all decisions). We also asked patients to rate the quality of communication with their HIV provider, and their self-reported receipt of and adherence to HAART. RESULTS Overall, 23% patients preferred that their doctor make all or most decisions, 63% preferred to share decisions with their doctor, and 13% preferred to make all final decisions alone. Compared to patients who prefer to share decisions with their HIV provider, patients who prefer that their provider make all/most decisions were significantly less likely to adhere to HAART (OR [odds ratio] 0.57, 95% CI 0.38–0.86) and patients who preferred to make decisions alone were significantly less likely to receive HAART or to have undetectable HIV RNA in unadjusted analyses (OR 0.52, 95% CI 0.31–0.87 for receipt of HAART; OR 0.64, 95% CI 0.44–0.95 for undetectable HIV RNA). After controlling for potentially confounding patient characteristics and differences in patient ratings of communication quality, patients who preferred that their provider make all/most decisions remained significantly less likely to adhere to HAART (OR 0.58, 95% CI 0.38–0.89); however, the associations with receipt of HAART and undetectable HIV RNA were no longer significant (OR 0.60, 95% CI 0.34–1.05 for receipt of HAART; OR 0.80, 95% C.I 0.53–1.20 for undetectable HIV RNA). CONCLUSIONS Although previous research suggests that more patient involvement in health care decisions is better, this benefit may be reduced when the patient wants to make decisions alone. Future research should explore the extent to which this preference is modifiable so as to improve outcomes.     

Can the Response to Iron Therapy Be Predicted in Anemic Nondialysis Patients with Chronic Kidney Disease?

Background and objectives: Anemia is iron responsive in 30 to 50% of nondialysis patients with chronic kidney disease (CKD), but the utility of bone marrow iron stores and peripheral iron indices to predict the erythropoietic response is not settled. We investigated the accuracy of peripheral and central iron indices to predict the response to intravenous iron in nondialysis patients with CKD and anemia.Design, setting, participants, & measurements: A diagnostic study was conducted on 100 nondialysis patients who had CKD and anemia and were erythropoiesis-stimulating agent and iron naive. Bone marrow iron stores were evaluated by aspiration. Hemoglobin, transferrin saturation index (TSAT), and ferritin were measured at baseline and 1 month after 1000 mg of intravenous iron sucrose. Posttest predictive values for the erythropoietic response (≥1-g/dl increase in hemoglobin) of peripheral and central iron indices were calculated.Results: The erythropoietic response was noted in a higher proportion in bone marrow iron-deplete than in iron-replete patients (63 versus 30%). Peripheral iron indices had a moderate accuracy in predicting response. The positive (PPV) and negative predictive values (NPV) were 76 and 72% for a TSAT of 15% and 74 and 70% for a ferritin of 75 ng/ml, respectively. In the final logistic regression model, including TSAT and ferritin, the chances of a positive response increased by 7% for each 1% decrease in TSAT.Conclusions: Because an erythropoietic response is seen in half of patients and even one third of those with iron-replete stores responded whereas peripheral indices had only a moderate utility in predicting response, the therapeutic trial to intravenous iron seems to be a useful tool in the management of anemia in nondialysis patients with CKD.Iron deficiency is common, and intravenous iron supplementation is a recognized therapy of anemia in long-term hemodialysis patients (HD), especially in those who are treated with epoetin (1–6). Several studies suggested that iron deficiency—evaluated by bone marrow iron examination—is common also in predialysis patients with chronic kidney diseases (CKD). In the reported series, the prevalence of bone marrow iron depletion varied widely from 23 to 90% (7,8). The role of iron supplementation in nondialysis patients with CKD is much less clear than in HD patients, although studies have reported a positive response to intravenous iron even without concomitant epoetin administration in 38 to 68% of patients (9–12).The prediction of erythropoietic response is clinically important, because the conventional markers of iron status—serum ferritin level and transferrin saturation index (TSAT)—although simple and relatively inexpensive, are not highly accurate in predicting response to iron in this population (5,7,8,11), and the safety of intravenous iron is a matter of concern in patients with CKD (13,14). Moreover, there are no published data relating iron stores, peripheral iron indices, and the response to intravenous iron. We conducted a study to investigate the accuracy of peripheral and central iron status indices to predict the response to intravenous iron in nondialysis patients who had CKD and anemia and were erythropoiesis-stimulating agent and iron naive.     

Are Primary Care Providers Uncomfortable Providing Routine Preventive Care for Inflammatory Bowel Disease Patients?

Background and Aims  

Those with chronic diseases, including inflammatory bowel disease (IBD), often do not receive preventive care at the same rate as the general population. Attitudes of primary care providers could be key factors in the receipt of preventive care.     

Caring for Patients with Dementia: How Good Is the Quality of Care? Results from Three Health Systems

OBJECTIVES: To describe the quality of dementia care within one U.S. metropolitan area and to investigate associations between variations in quality and patient, caregiver, and health system characteristics. DESIGN: Observational, cross-sectional. SETTING AND PARTICIPANTS: Three hundred eighty-seven patient-caregiver pairs from three healthcare organizations MEASUREMENTS: Using caregiver surveys and medical record abstraction to assess 18 dementia care processes drawn from existing guidelines, the proportion adherent to each care process was calculated, as well as mean percentages of adherence aggregated within four care dimensions: assessment (6 processes), treatment (6 processes), education and support (3 processes), and safety (3 processes). For each dimension, associations between adherence and patient, caregiver, and health system characteristics were investigated using multivariable models. RESULTS: Adherence ranged from 9% to 79% for the 18 individual care processes; 11 processes had less than 40% adherence. Mean percentage adherence across the four care dimensions was 37% for assessment, 33% for treatment, 52% for education and support, and 21% for safety. Higher comorbidity was associated with greater adherence across all four dimensions, whereas greater caregiver knowledge (in particular, one item) was associated with higher care quality in three of four care dimensions. For selected dimensions, greater adherence was also associated with greater dementia severity and with more geriatrics or neurologist visits. CONCLUSION: In general, dementia care quality has considerable room for improvement. Although greater comorbidity and dementia severity were associated with better quality, caregiver knowledge was the most consistent caregiver characteristic associated with better adherence. These findings offer opportunities for targeting low quality and suggest potential focused interventions.