Christina Mattina

 (MS) is a multidimensional concept, and health care providers should use this knowledge to plan optimal care for these patients, according to a 

 as “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others,” and the review notes that the World Health Organization considers it to play a pivotal role in health inequalities.

Despite the increasing recognition of health literacy as an important factor in chronic disease outcomes, it is a complex and broad topic, and its meaning can vary across diseases, leading the author to conduct a literature review to solidify its definition for MS.

A systematic literature review identified 860 titles published in Persian or English from 1980 to 2019; after applying inclusion criteria, 19 items (15 original research articles, 3 books, and 1 dissertation) were analyzed in the study. The author used Rodgers’ evolutionary approach to extract the main attributes of health literacy in MS: health information evaluation, understanding the disease and its related issues, reading skills, and capacity to use knowledge.

In order to achieve health literacy, patients need the ability to read, write, and comprehend; access to effective information resources; and interaction with health care professionals and peers, especially those with MS.

“By assessing the presence of the antecedents of health literacy, health care personnel can enhance their ability to identify those patients at risk of misunderstanding and nonadherence,” the author noted.

The positive consequences of health literacy for patients with MS included improved self-care, health promotion (physical, psychological, social, and spiritual), medication adherence, and decreased use of health care services. These benefits can alleviate the burden of unnecessary care utilization on health systems, in addition to improving the patients’ health and productivity.

“The domains of health literacy as a set of capacities also implies that health literacy is somewhat knowledge based, and may be developed through educational intervention,” the author wrote.

The review found that patients with MS can boost their health literacy by accessing information from health care professionals, partnering with clinicians to enhance their self-management of the disease, and interacting with peers who have MS.

Awareness of the attributes and benefits of health literacy in MS can help promote application of this concept by health care providers when creating a care plan for patients with MS.

Limitations of the review included a lack of access to the full text of all articles and that only texts published in Persian or English were considered. Prior studies have indicated that health literacy is a dynamic concept, so future research could examine how the definition of health literacy in patients with MS changes over time.

“These findings not only add to the body of knowledge, but also serve as an important motivation for further theory development and research in this context,” the author concluded.

Dehghani A. Health literacy in multiple sclerosis patients: a concept analysis using the evolutionary method. 

. 2021;10(1):49-56. doi:10.34172/jcs.2021.010

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Because health literacy can have different meanings for patients with different diseases, this review aimed to crystalize a definition in patients with multiple sclerosis (MS) and emphasize its importance in care planning.

Review Explores Health Literacy in Patients With MS

Survey responses revealed the physical and emotional toll of primary hyperoxaluria (PH) on patients and their families,

 while an accompanying paper aimed to identify appropriate end points for clinical trials of treatments.

Clinical Journal of the American Society of Nephrology

, and they highlight areas of need for individuals with PH, a rare genetic condition that causes the body to produce excess oxalate, leading to kidney stones, kidney failure, and oxalosis (oxalate accumulation).

Among the 42 survey respondents (17 patients, 25 parents/caregivers), 60% of the patients had PH type 1 (the most severe form), half were 17 years or younger, and 24% had experienced dialysis. Kidney stones were a top concern for patients and parents. The stones commonly occur in childhood in those with PH and can recur unpredictably throughout the lifespan, sometimes requiring surgical procedures.

“My son has had multiple surgical procedures beginning at 6 months old. These procedures were very traumatic both physically and emotionally,” a parent reported.

Another common theme was anxiety around the prospect of kidney failure, which can lead to oxalosis. Dialysis is initiated early in PH, but it is not completely effective in clearing the oxalate load, meaning that patients may require hemodialysis 6 days per week plus peritoneal dialysis daily. Frequent dialysis can be a great burden on caregivers, with some survey respondents describing the lack of sleep they experienced while coordinating their children’s routines.

Oxalosis was a prominent fear among the respondents; systemic oxalosis can be associated with bone fractures, anemia, joint damage, vision impairment, and neuropathy.

“My brother experienced such intense nerve pain that he was unable to wear gloves during the winter. I ordered special gloves made of light but warm material for him. Unfortunately, he died before they were delivered,” a respondent recounted.

Survey respondents also expressed the psychological toll that comes from living with PH and not knowing when kidney failure may occur. The authors noted that missing work for health reasons can cause significant medical and financial burdens.

Due to the many stressors from living with PH, the survey respondents agreed that new therapies to prevent oxalosis and avoid dialysis and transplant are of utmost importance.

In the accompanying article about end points of clinical trials for PH treatments, the authors note that there are no therapies approved by the FDA. The project reported in the study convened a work group of patients, physicians, investigators, industry representatives, and regulators to discuss the clinical outcomes and end points that could be used to evaluate new treatments. They concluded that the strongest candidates were kidney stone occurrence, change in the estimated glomerular filtration rate, urine oxalate, and plasma oxalate.

The article also detailed the advantages and disadvantages of using each potential end point. For instance, kidney stones have a significant impact on quality of life and functioning for patients with PH, but there are varying standards for measurement and longitudinal monitoring of the stones. Conversely, kidney failure is an outcome that is easy to measure, but it may not occur frequently enough in a trial that it could be evaluated as an outcome, depending on the length and sample size of the trial.

The authors noted that their conclusions on the feasibility of each potential are based mainly on patients with PH type 1, who account for most patients with PH. “Small numbers of patients with [PH] type 2 and [PH] type 3 in [PH] registries do not yet provide a similar strength of evidence for these biomarkers in other forms of [PH],” they explained.

1. Lawrence JE, Wattenberg DJ. Primary hyperoxaluria: the patient and caregiver perspective. 

. 2020;15(7):909-911. doi:10.2215/CJN.13831119

2. Milliner DS, McGregor TL, Thompson A, et al. End points for clinical trials in primary hyperoxaluria. 

. 2020;15(7):1056-1065. doi:10.2215/CJN.13821119

Patients, Caregivers Report Burden of Living With Primary Hyperoxaluria

The coronavirus disease 2019 (COVID-19) pandemic dominated headlines for much of 2020, and most of the top 5 multiple sclerosis (MS) articles of this year discussed the effects of COVID-19 on patients with this disease. Others touched on physician and patient assessments of relapse and potential new treatments for neural damage. Here are the top 5 MS articles of 2020.

5. Patients, Physicians Largely Agree on Presence of MS Relapse, Analysis Finds

With the voice of the patient becoming more prominent in decision-making, this analysis found that patients with MS and their neurologists overwhelmingly agreed on the presence and absence of relapses of the condition. Patients reported slightly more relapses than their clinicians, for an average of 0.55 vs 0.44 during follow-up, which could be due to them interpreting pseudo-relapses as true relapses. Still, the agreement seen between patients and physicians indicates that the patient’s perception of their disease state is important, especially given the lack of objective standard for assessing MS relapses.

4. No Link Between Use of DMT, COVID-19 Severity in Patients With MS, Study Finds

An analysis of patient registry data revealed that there was no association found between COVID-19 severity and patient receipt of disease-modifying therapy (DMT) for MS. In fact, more patients who had no DMT use had worse COVID-19 severity than those who did take a DMT. The authors did note a link between higher Expanded Disability Severity Scale score and higher risk of severe infection. They called for further studies with larger sample sizes across several countries to confirm the lack of association between DMT use and COVID-19 severity.

3. How Has COVID-19 Changed Multiple Sclerosis Care?

The COVID-19 crisis has necessitated a rethinking of care delivery across disease states, including MS, as June Halper, CEO of the Consortium of Multiple Sclerosis Centers, explained in this interview. Although the supply chain for DMTs was not interrupted, some patients have reported challenges with picking up their other drugs at local pharmacies, she explained. Telehealth has proven to be a valuable solution to keep patients at home when possible to avoid risk of infection, and virtual wellness solutions have kept patients connected through yoga programs and podcasts while they are at home.

2. Stem Cells Prove Effective in Treating MS Neural Damage

Although there is no cure for MS and the associated damage to myelin, clinical trial results indicate the safety and efficacy of mesenchymal stem cell (MSC) therapy in modulating immune responses, according to a review. Different types of MSCs exist and each have advantages; whereas human fetal-derived neural stem cells are the precursors of neuronal cells, stem cells sources like adipose tissue or umbilical cord are more easily extracted and do not pose any ethical dilemmas. The review concluded that the various MSC treatments result in “significant improvements in quality-of-life, neurologic disability, and functional scores” in patients with MS.

1. Ocrelizumab, Rituximab Linked With More Severe COVID-19 in Multiple Sclerosis

Results shared at the MSVirtual2020 meeting indicate that 2 anti-CD20 biologics are associated with higher likelihood of needing hospitalization, intubation, and intensive care unit admission among patients with MS who contract COVID-19. Ocrelizumab and rituximab were linked with higher frequencies of these 3 outcomes compared with all other DMTs and compared with natalizumab, but no associations were found between DMTs and death. The researchers called for further research that examines the effects of comorbidities, smoking, and body mass index on the relationship between MS therapies and COVID-19 outcomes.

The coronavirus disease 2019 (COVID-19) pandemic dominated headlines for much of 2020, and most of the top 5 multiple sclerosis articles of this year discussed the effects of COVID-19 on patients with this disease. Others touched on physician and patient assessments of relapse and potential new treatments for neural damage. 

Top 5 Most-Read Multiple Sclerosis Articles of 2020

) explored drivers of success in accountable care organizations (ACOs), responses to payment reform efforts, and more.

Here are the 5 most-read articles published in 

5. Leveraging Health Information Technology for ACO Success

The author of this Insights article explains how health information technology (IT) can enable ACOs to transition away from traditional siloed care to a more coordinated model by allowing for easier data sharing and reporting. For instance, one ACO invested in an IT solution to supplement claims information and provide actionable insights for clinicians at the point of care. Health IT can compile information in nearly real time, which may help clinicians keep patients out of the hospital and avert unnecessary utilization.

4. Hospital Responses to DSRIP Program Reforms in New Jersey

How do hospitals respond to new initiatives that rethink reimbursement to tie funds to quality outcomes? The authors of this research study aimed to answer this by surveying hospitals about their responses to and perceptions of the Delivery System Reform Incentive Payment (DSRIP) program, and the answers revealed that the perceived benefit of DSRIP project activities, as well as of data sharing, increased over time. DSRIP was thus successful in accelerating hospitals’ evolution toward data-driven population health care, they conclude.

3. One Size Will Not Fit All: Factors That Drive Strategy in Accountable Care Organizations

ACOs have meaningful differences in many characteristics, including the clinical and social complexity of their populations and how their network is configured, so applying the same strategy to all ACOs will not yield success, according to this Insights piece. For example, care management interventions should emphasize management of multiple chronic diseases in Medicare populations, whereas that strategy may not be as beneficial in commercial populations. The type of clinical pathways designed and implemented within ACOs will also vary by the types of care sites and specialty practices situated within their networks.

2. Implementation of Pharmacist-Driven Comprehensive Medication Management as Part of an Interdisciplinary Team in Primary Care Physicians’ Offices

This Reform Trends article reports on the outcomes of an effort to integrate pharmacists into interdisciplinary care teams, where they can perform comprehensive medication management to address any barriers to patients taking their prescribed medications. In this health system that participates in an ACO, pharmacists provided 836 recommendations over a 3-month period and more than 90% of patients agreed the pharmacists helped them feel confident managing their medications. Additionally, 93% of prescribers agreed that their patients benefited from the pharmacist’s help.

1. Accountable Care Organizations and Patient-Centered Medical Homes: Health Expenditures and Health Services

ACOs and patient-centered medical homes (PCMHs) have both gained attention as possible solutions to ever-growing health care expenditures, and this article assesses their effect, both separately and in combined hybrid models. The investigators found that care received in ACO and PCMH facilities is associated with lower total care costs than standard care, but hybrid models actually had slightly higher costs than stand-alone models. They called for further evaluation of health care delivery and reimbursement innovations.

In 2020, articles published in The American Journal of Accountable Care® (AJAC) explored drivers of success in accountable care organizations, responses to payment reform efforts, and more.

Christina Mattina

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Review Explores Health Literacy in Patients With MS

Patients, Caregivers Report Burden of Living With Primary Hyperoxaluria

Top 5 Most-Read Multiple Sclerosis Articles of 2020

Top 5 Most-Read AJAC Articles of 2020