Use of Telemedicine Among People with Multiple Sclerosis Before and During the COVID-19 Pandemic.

Introduction: Multiple sclerosis (MS) is the most common progressive neurological condition with onset in young adulthood. Because people with MS (PwMS) are often separated from specialty care by distance or disability, telemedicine can help alleviate that burden by removing obstacles to accessing care. Methods: We surveyed 762 PwMS in the iConquerMS research network about their use of in-person and telemedicine services prepandemic (January-February 2020) and during the coronavirus disease 2019 (COVID-19) pandemic (September-November 2020). The survey asked PwMS about their use of in-person and telemedicine services, technology access, perceptions and preferences of telemedicine, their most recent telemedicine encounter, and reasons for not using telemedicine. Results: Prepandemic, the most cited reason for not using telemedicine was providers not offering remote visits. During the pandemic, there was a decrease in the use of in-person health care (100% to ∼78%) and an increase in telemedicine utilization (25% to ∼80%). Most participants had access to telemedicine-enabling technologies and a large portion indicated a preference for using telemedicine for some or most/all of their MS health care (41-57%). Before the pandemic, telemedicine utilization was highest for primary care, while during the pandemic, utilization of telemedicine was greatest for general MS care. Mental health telemedicine encounters increased during the pandemic. Discussion: The dramatic increase in telemedicine utilization during the COVID-19 pandemic has provided access for PwMS to multispecialty care. Maintaining the policy changes that enabled remote health care to expand during the pandemic will be critical for sustained access to MS specialty care for this vulnerable population.

Retrospective review of serotonergic medication tolerability in patients with neuroendocrine tumors with biochemically proven carcinoid syndrome.

BACKGROUND: Patients with carcinoid tumors frequently could benefit from the pharmacologic treatment of depression and anxiety. However, many prescribers avoid serotonergic medications due to the theoretical risk of exacerbating carcinoid syndrome. METHODS: The authors conducted a retrospective chart review of patients with carcinoid tumors and elevated serotonin levels (as measured by 24-hour urine 5-hydroxyindoleacetic acid [5-HIAA]) at Dana-Farber/Brigham and Women's Cancer Center who initiated treatment with serotonergic antidepressants after a carcinoid diagnosis from 2003 to 2016. Each medication regimen was categorized based on the presence of adverse interactions as defined by clinical worsening of symptoms of carcinoid syndrome in the absence of progressive disease that temporally correlated with a serotonergic medication trial. RESULTS: A total of 73 serotonergic regimens received by 52 patients were included in the primary analysis. Among these medication trials, 8.2% of the regimens (6 regimens) were categorized as being associated with a likely adverse interaction, 61.6% of the regimens (45 regimens) were categorized as having no adverse reaction, 9.6% of the regimens (7 regimens) were categorized as an unlikely adverse reaction, and 20.6% of the regimens (15 regimens) were categorized as unknown. It is interesting to note that none of the 73 trials resulted in a carcinoid crisis requiring emergency care or hospitalization. Only 3 patients discontinued serotonergic medications due to worsening carcinoid syndrome. CONCLUSIONS: Serotonergic medications appear to be a safe option for the treatment of depressive and anxiety symptoms in the majority of patients with neuroendocrine tumors and carcinoid syndrome. In the current study, <10% of patients developed a combination of flushing, diarrhea, and bloating after the initiation of serotonergic medications. Clinicians can begin with low doses, monitor these symptoms, and reduce the dose or discontinue the medication if necessary. Cancer 2017;123:2735-42. © 2017 American Cancer Society.

A Qualitative, Multiperspective Inquiry of Multiple Sclerosis Telemedicine in the United States.

BACKGROUND: Telemedicine has expanded access to high-quality, appropriate, and affordable health care for people with multiple sclerosis (MS). This study explored how the expansion of MS telemedicine is perceived and experienced by people with MS, health care providers (HCPs), and payers and policy experts (PYs). METHODS: Forty-five semistructured interviews with 20 individuals with MS, 15 HCPs, and 10 PYs were conducted between September 2020 and January 2021. The interviews were recorded on a televideo platform, transcribed, and analyzed for themes using qualitative data software. RESULTS: Interviews revealed the following 4 themes. Technology: Telemedicine increases access and convenience. Technical challenges were the most cited downside to telemedicine. Clinical encounters: Confidence in MS care via telemedicine varies. Virtual "house calls" have clinical benefits. Financing and infrastructure: Reimbursement parity is critical to utilization and expansion of telemedicine. Stakeholders are hopeful and fearful as infrastructure and business models begin to shift. Shifting expectations: The familiar structure of the office visit is currently absent in telemedicine. Telemedicine visits need more intentionality from both providers and patients. CONCLUSIONS: Telemedicine is an efficient, convenient way to deliver and receive many aspects of MS care. To expand telemedicine care, many HCPs need more training and experience, people with MS need guidance to optimize their care, and PYs in the United States need to pass legislation and adjust business models to incorporate benefits and reimbursement for telemedicine health in insurance plans. The future is promising for the ongoing use of telemedicine to improve MS care, and stakeholders should work to preserve and expand the policy changes made during the COVID-19 pandemic.

Use and cost of disease-modifying therapies by Sonya Slifka Study participants: has anything really changed since 2000 and 2009?

BACKGROUND: Disease-modifying therapies benefit individuals with relapsing forms of multiple sclerosis, but their utility remains unclear for those without relapses. OBJECTIVE: To determine disease-modifying therapy use and costs in 2009, compare use in 2009 and 2000, and examine compliance with evidence-based guidelines. METHODS: We determined the extent and characteristics of disease-modifying therapy use by participants in the Sonya Slifka Longitudinal Multiple Sclerosis Study (Slifka) in 2000 (n=2156) and 2009 (n=2361) and estimated out-of-pocket and total (payer) costs for 2009. Two multivariable logistic regressions predicted disease-modifying therapy use. RESULTS: Disease-modifying therapy use increased from 55.3% in 2000 to 61.5% in 2009. In 2009, disease-modifying therapy use was reported by 76.5% of participants with relapsing-remitting multiple sclerosis, 73.2% with progressive-relapsing multiple sclerosis, 62.5% with secondary progressive multiple sclerosis, and 41.8% with primary progressive multiple sclerosis. Use was significantly associated with relapsing-remitting multiple sclerosis, shorter duration of illness, one to two relapses per year, non-ambulatory symptoms, using a cane, younger age, higher family income, and having health insurance. Average annual costs in 2009 were US$939-3101 for patients and US$16,302-18,928 for payers. CONCLUSION: Use rates were highest for individuals with relapsing-remitting multiple sclerosis, but substantial for those with progressive courses although clinical trials have not demonstrated significant benefits for them.

Utilization Patterns of Oral Disease-Modifying Drugs in Commercially Insured Patients with Multiple Sclerosis.

BACKGROUND: The approval of new oral disease-modifying drugs (DMDs), such as fingolimod, dimethyl fumarate (DMF), and teriflunamide, has considerably expanded treatment options for relapsing forms of multiple sclerosis (MS). However, data describing the use of these agents in routine clinical practice are limited. OBJECTIVE: To describe time trends and identify factors associated with oral DMD treatment initiation and switching among individuals with MS. METHODS: Using data from a large sample of commercially insured patients, we evaluated changes over time in the proportion of MS patients who initiated treatment with an oral DMD and who switched from an injectable DMD to an oral DMD between 2009 and 2014 in the United States. We evaluated predictors of oral DMD use using conditional logistic regression in 2 groups matched on calendar time: oral DMD initiators matched to injectable DMDs initiators and oral DMD switchers matched to those who switched to a second injectable DMD. RESULTS: Our cohort included 7,576 individuals who initiated a DMD and 1,342 who switched DMDs, of which oral DMDs accounted for 6% and 39%, respectively. Oral DMD initiation and switching steadily increased from 5% to 16% and 35% to 84%, respectively, between 2011 and 2014, with DMF being the most commonly used agent. Of the potential predictors with clinical significance, a recent neurologist consultation (OR = 1.60; 95% CI = 1.20-2.15) and emergency department visit (OR = 1.43; 95% CI = 1.01-2.01) were significantly associated with oral DMD initiation. History of depression was noted to be a potential predictor of oral DMD initiation; however, the estimate for this predictor did not reach statistical significance (OR = 1.35; 95% CI = 0.99-1.84). No clinically relevant factors measured in our data were associated with switching to an oral DMD. CONCLUSIONS: Oral DMDs were found to be routinely used as second-line treatment. However, we identified few factors predictive of oral DMD initiation or switching, which implies that their selection is driven by patient and/or physician preferences. DISCLOSURES: This study was funded by CVS Caremark through an unrestricted research grant to Brigham and Women's Hospital. Shrank and Matlin were employees of, and shareholders in, CVS Health at the time of the study; they report no financial interests in products or services that are related to the subject of this study. Spettell is an employee of, and shareholder in, Aetna. Chitnis serves on clinical trial advisory boards for Novartis and Genzyme-Sanofi; has consulted for Bayer, Biogen Idec, Celgene, Novartis, Merck-Serono, and Genentech-Roche; and has received research support from NIH, National Multiple Sclerosis Society, Peabody Foundation, Consortium for MS Centers, Guthy Jackson Charitable Foundation, EMD-Serono, Novartis Biogen, and Verily. Desai reports receiving a research grant from Merck for unrelated work. Gagne is principal investigator of a research grant from Novartis Pharmaceuticals Corporation to the Brigham and Women's Hospital and has received grant support from Eli Lilly, all for unrelated work. He is also a consultant to Aetion and Optum. Minden reports grants from Biogen and other fees from Genentech, EMD Serano, Avanir, and Novartis, unrelated to this study. The other authors have no conflicts to report. This study was presented as a poster at the International Society for Pharmacoepidemiology 32nd Annual Meeting; August 25-28, 2016; Dublin, Ireland.

Quality of life in people with multiple sclerosis: data from the Sonya Slifka Longitudinal Multiple Sclerosis Study.

Current knowledge about the health-related quality of life (HRQoL) experienced by people with multiple sclerosis (MS) is limited. We compared item and component scale scores on the Medical Outcomes Short Form 12 (SF-12) of 2,109 people with MS to U.S. norms and published data on persons with other medical conditions. We also built regression models for SF-12-derived mental (MCS) and physical component scale (PCS) scores. Seventy-five percent of the sample had been diagnosed with MS for over 5 years, and one-half to two-thirds received help with at least one activity of daily living (ADL) or instrumental activity of daily living (IADL), respectively. The mean PCS score was 36.2 (Standard Error: 0.27), significantly lower by 14 points than the U.S. population norm and by 4-12 points than mean scores for individuals with diabetes, congestive heart failure, myocardial infarction, hypertension or depression. The mean MCS score was 49.2 (Standard Error: 0.25), significantly lower than the norm for the U.S. population and the mean scores for the chronic condition groups except congestive heart failure and depression. We identified several demographic, disease, and health services factors that were significantly related to quality of life and highlighted a number of areas for improvement. We concluded that the quality of the lives of people with MS could be enhanced by removing barriers to MS care, general health care, and mental health care; meeting needs for help with activities of daily living and instrumental activities of daily living; supporting employment; and improving access to disease modifying agents and symptomatic treatments.

Predictors and outcomes of delirium.

OBJECTIVES: To determine factors associated with the occurrence of delirium among patients undergoing surgical repair of abdominal aortic aneurysm (AAA). METHODS: The sample included all consenting patients who underwent AAA repair during a 12-month period. Before surgery, daily while in hospital, and at 1 and 6 months after surgery, we assessed patients' mood, mental status and functional status. We compared delirious and nondelirious patients for severity of preoperative depressive symptoms, length of hospital stay and mortality. The effects of delirium on postoperative functional status were assessed in conjunction with postoperative depressive symptoms using regression models. RESULTS: The sample of 35 patients was primarily male and elderly; one-quarter had three or more medical conditions; and eight (23%) developed delirium after surgery. Postoperative delirium was significantly associated with preoperative depressive symptoms, alcohol use and cognitive impairment as well as with longer lengths of stay and poorer functional status at 1 and 6 months after surgery. CONCLUSION: Identification and treatment of patients with depressive symptoms, alcohol use and cognitive impairment prior to AAA surgery could reduce the incidence of postoperative delirium and the prolonged hospital stays and impaired functional status associated with it. Surgeons should consider using simple screening instruments before surgery to identify patients at risk and referring them for psychiatric evaluation and treatment. They should also consider including psychiatrists early in the care of high-risk patients to improve detection of and early intervention for delirium.

Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas.

BACKGROUND: Chronic fatigue syndrome (CFS) is a debilitating illness with no known cause or effective therapy. Population-based epidemiologic data on CFS prevalence and incidence are critical to put CFS in a realistic context for public health officials and others responsible for allocating resources and for practicing physicians when examining and caring for patients. METHODS: We conducted a random digit-dialing survey and clinical examination to estimate the prevalence of CFS in the general population of Wichita, Kan, and a 1-year follow-up telephone interview and clinical examination to estimate the incidence of CFS. The survey included 33 997 households representing 90 316 residents. This report focuses on 7162 respondents aged 18 to 69 years. Fatigued (n = 3528) and randomly selected nonfatigued (n = 3634) respondents completed telephone questionnaires concerning fatigue, other symptoms, and medical history. The clinical examination included the Diagnostic Interview Schedule for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, laboratory testing, and a physical examination. RESULTS: The overall weighted point prevalence of CFS, adjusted for nonresponse, was 235 per 100,000 persons (95% confidence interval, 142-327 per 100,000 persons). The prevalence of CFS was higher among women, 373 per 100,000 persons (95% confidence interval, 210-536 per 100,000 persons), than among men, 83 per 100,000 persons (95% confidence interval, 15-150 per 100,000 persons). Among subjects nonfatigued and fatigued for less than 6 months, the 1-year incidence of CFS was 180 per 100,000 persons (95% confidence interval, 0-466 per 100,000 persons). CONCLUSIONS: Chronic fatigue syndrome constitutes a major public health problem. Longitudinal follow-up of this cohort will be used to further evaluate the natural history of this illness.

Disability in elderly people with multiple sclerosis: An analysis of baseline data from the Sonya Slifka Longitudinal Multiple Sclerosis Study.

This study compares the demographic, clinical, and health care characteristics of 2,156 persons over and under age 65 who are participants in the Sonya Slifka Longitudinal Multiple Sclerosis Study and examines the effects of current age, age at diagnosis, course, and duration of illness on disability-related outcomes. Compared to younger MS patients, significantly higher percentages of older patients lived alone, had lower incomes, and were severely disabled; 85% needed help with activities of daily living and 40% received home care services. Almost all older patients had health insurance, 75% had prescription drug coverage, and few reported difficulty accessing general medical and specialized MS care; perceptions of health status and quality of life were relatively positive. Duration and course of illness were the major predictors of disability, although older current age and younger age at diagnosis were also associated. The relationship among age- and disease-related variables is complex and they likely exert independent effects on disability-related outcomes. Planning is needed by caregivers and policy makers to ensure that the specialized needs of elderly persons with MS are adequately met.

Change in perceived health insurance coverage among people with multiple sclerosis.

BACKGROUND: Previous research suggests that most people with multiple sclerosis (MS) in the United States have health insurance. However, little is known about their coverage or how it differs between public and private insurance. We examined whether the perceived change in health insurance coverage from the previous year differs between individuals with MS who are privately insured compared with those who are publicly insured. METHODS: We present descriptive statistics and odds ratios (ORs) from a multivariate logistic regression using data from the 2009 wave of the Sonya Slifka Longitudinal Multiple Sclerosis Study. RESULTS: We found that individuals with Medicare were significantly less likely to perceive worse coverage compared with those with private health insurance (OR = 0.53; P < .01). Individuals aged 55 to 64 years were more likely to perceive worse coverage than those aged 18 to 34 years (OR = 2.5; P < .05), while the odds of perceiving worse coverage were significantly lower for individuals who had been diagnosed more than 15 years previously relative to those diagnosed in the past 2 years (OR = 0.48; P < .05). CONCLUSIONS: Individuals with MS and other chronic illnesses who can choose between public and private insurance should be aware that there are important differences in perceptions of health insurance coverage between publicly and privately insured individuals.

Evidence-based guideline: assessment and management of psychiatric disorders in individuals with MS: report of the Guideline Development Subcommittee of the American Academy of Neurology.

OBJECTIVE: To make evidence-based recommendations for screening, diagnosing, and treating psychiatric disorders in individuals with multiple sclerosis (MS). METHODS: We reviewed the literature (1950 to August 2011) and evaluated the available evidence. RESULTS AND RECOMMENDATIONS: Clinicians may consider using the Center for Neurologic Study Emotional Lability Scale to screen for pseudobulbar affect (Level C). Clinicians may consider the Beck Depression Inventory and a 2-question tool to screen for depressive disorders and the General Health Questionnaire to screen for broadly defined emotional disturbances (Level C). Evidence is insufficient to support/refute the use of other screening tools, the possibility that somatic/neurovegetative symptoms affect these tools' accuracy, or the use of diagnostic instruments or clinical evaluation procedures for identifying psychiatric disorders in MS (Level U). Clinicians may consider a telephone-administered cognitive behavioral therapy program for treating depressive symptoms (Level C). Although pharmacologic and nonpharmacologic therapies are widely used to treat depressive and anxiety disorders in individuals with MS, evidence is insufficient to support/refute the use of the antidepressants and individual and group therapies reviewed herein (Level U). For pseudobulbar affect, a combination of dextromethorphan and quinidine may be considered (Level C). Evidence is insufficient to determine the psychiatric effects in individuals with MS of disease-modifying and symptomatic therapies and corticosteroids; risk factors for suicide; and treatment of psychotic disorders (Level U). Research is needed on the effectiveness in individuals with MS of pharmacologic and nonpharmacologic treatments frequently used in the non-MS population.

Assessments of nursing home guidelines for quality of care provided to residents with multiple sclerosis.

This study assessed the opinions of nursing directors about quality guidelines developed by the National Multiple Sclerosis Society (NMSS) to assist with the care of nursing home residents with multiple sclerosis (MS). Data were collected in a survey of nursing directors at 800 nursing facilities, with 64 nursing directors participating (8.2% response rate). Participating nursing facilities are similar to other nursing homes for facility characteristics and the number of MS residents receiving care. Large majorities of participants thought these NMSS guidelines were important to the development of care plans and staff training. However, most nursing directors were unaware of these guidelines.

A pilot study of young adults with multiple sclerosis: demographic, disease, treatment, and psychosocial characteristics.

BACKGROUND: Although multiple sclerosis (MS) is the most common neurologic disease disabling younger adults, very little is known about the characteristics of young adults with MS and the impact of MS on their lives. OBJECTIVES: To conduct a pilot study of the demographic, disease, treatment, and psychosocial characteristics of young adults with MS (aged 18 and 31 years). METHODS: We solicited participation from all 452 members of the Registry of the North American Research Committee On Multiple Sclerosis (NARCOMS) Project aged 18 to 31 years, collecting data from 100 of these young adults (22%) by computer-assisted telephone interviews. Data included basic demographic, disease, and treatment characteristics, ratings of satisfaction with access to and quality of MS and mental health care, and beliefs about the impact of MS on their current and future lives. RESULTS: Participants were 93% female and averaged 28.6 years of age, and 88% had relapsing-remitting MS. Forty-three percent received the majority of their MS-focused care at an MS clinic and 94% had seen a neurologist in the previous 12 months. More than 40% reported depressive symptoms at the time of the survey. These young adults with MS had relatively low rates of concern about the impact of MS in the present but higher rates of worry about their future. CONCLUSIONS: These findings suggest the need for a study with a larger, representative sample of young adults with MS to guide development of programs, interventions, and services tailored to meet their needs.

A typology of organizational and contractual arrangements for purchasing and delivery of behavioral health care.

The evolution of behavioral health care financing and delivery has led to a wide variety of arrangements connecting consumers to behavioral health services. In this paper, we present a typology based on three distinguishing features of behavioral health arrangements along which there is a high degree of variability and this variability has been shown to affect the cost and quality of behavioral health care: (1) the extent to which sponsor oversight over care is outsourced by way of contracts rather than performed directly; (2) whether financing for behavioral health is partitioned from health care financing overall; and (3) the amount of financial risk shared by the sponsor with third parties.