{"title":"Direct and Indirect Care of Patients With Multiple Sclerosis: Burden on Providers and Impact of Portal Messages.","authors":"Rola Mahmoud, Katie Callahan, Doug Schell, Suzanne Carron, Salim Chahin","doi":"10.7224/1537-2073.2022-102","DOIUrl":"10.7224/1537-2073.2022-102","url":null,"abstract":"<p><strong>Background: </strong>Multiple sclerosis (MS) indirect patient-care time is often underreported and uncompensated. Data on time spent on indirect and direct care by MS providers is lacking.</p><p><strong>Methods: </strong>A survey was designed to understand the practice patterns among MS providers in the United States, including time spent on direct and indirect patient care, as well as managing electronic medical record portal messages. The National MS Society and the American Academy of Neurology facilitated the distribution of the survey to MS providers.</p><p><strong>Results: </strong>Most providers spent at least 1 hour on new and at least 30 minutes on follow-up direct patient care. For indirect patient care, 77% of providers spent more than 1 hour and 57% spent more than 2 hours per day. While some providers have support staff to help with portal messages, many do not have protected time or compensation for portal messages.</p><p><strong>Conclusions: </strong>Multiple sclerosis providers spent a higher-than-average time on direct and indirect patient care tasks, including portal messages, and most lack protected time or compensation for portal messages. These results highlight the potential impact of indirect patient care (notably portal messages) on provider workload and burnout. Better support, protected time and/or compensation for indirect patient care can help ease physician burden and decrease burnout.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"1 1","pages":"13-16"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779709/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41934462","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rosaline van den Berg, Katelijn Blok, Nura Tebayna, Monique van Dijk, Joost van Rosmalen, Janet de Beukelaar
{"title":"Reasons Patients With Primary Progressive Multiple Sclerosis Contact Their Specialist Nurses.","authors":"Rosaline van den Berg, Katelijn Blok, Nura Tebayna, Monique van Dijk, Joost van Rosmalen, Janet de Beukelaar","doi":"10.7224/1537-2073.2022-056","DOIUrl":"10.7224/1537-2073.2022-056","url":null,"abstract":"<p><strong>Background: </strong>Questions asked by patients with primary progressive multiple sclerosis (PPMS) during patient-initiated MS nurse consultations may contain salient information that can help health care providers understand their needs, which, in turn, can help tailor counseling and treatment.</p><p><strong>Methods: </strong>Records of all patients with PPMS visiting the MS center of a large teaching hospital in the Netherlands between January 2007 and January 2021 were studied retrospectively. Number and type (scheduled or patient initiated) of MS nurse consultations, reasons for consultations (in prespecified categories), and frequency of subsequent referrals were registered. Association between factors (living with partner, Expanded Disability Status Scale score, comorbidities, age, sex) and number of patient-initiated consultations was studied using negative binomial regression analysis.</p><p><strong>Results: </strong>In total, 98 patients with PPMS were included, with 720 MS nurse consultations during follow-up (median duration, 8.1 years), of which 274 (38%) were patient initiated. Patients had a broad spectrum of reasons to contact MS nurses. The most common categories were treatment (36%) and micturition and defecation (31%). Patients living without a partner (incidence rate ratio, 2.340; 95% CI, 1.057-5.178) and male patients (incidence rate ratio, 1.890; 95% CI, 0.925-3.861) consulted MS nurses more frequently. The MS nurses made 146 referrals (20% of all contacts); 59 were after patient-initiated consultation (22%). The most frequent referrals were to neurologists, urologists, and rehabilitation specialists.</p><p><strong>Conclusions: </strong>Multiple sclerosis nurses have a pivotal role in PPMS care, especially for patients living without a partner and male patients. Recurring questions about (new) treatment options illustrate the pressing need for highly effective treatment. Micturition and defecation problems are also a considerable concern and warrant close monitoring.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"30-35"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779713/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43322158","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Impact of Insurance Restrictions in Newly Diagnosed Individuals With Multiple Sclerosis.","authors":"Ryan Mizell","doi":"10.7224/1537-2073.2022-069","DOIUrl":"10.7224/1537-2073.2022-069","url":null,"abstract":"<p><strong>Background: </strong>The medical system in the United States has been riddled with insurance restrictions used by insurance companies to limit health care costs. The effects of insurance restrictions on patients receiving disease-modifying therapies for multiple sclerosis (MS) have not been specifically studied.</p><p><strong>Methods: </strong>A retrospective cross-sectional study of 52 individuals recently diagnosed with MS at a tertiary neurology clinic was conducted to measure the association between prior authorization (PA) duration and other variables of interest. The Cox proportional hazards model was used to determine likelihood of approval. Further analysis included multivariable logistic regression to assess the influence of variables of interest on the initial decision from the insurance company and the effect of the PA on disease activity.</p><p><strong>Results: </strong>Of 52 PAs, 50% were initially denied. An initial denial decreased the likelihood of approval by 98% (HR, 0.02; 95% CI, <0.01-0.09; <i>P</i> < .001). The odds of denial for oral medications (odds ratio [OR], 4.91; 95% CI, 1.33-21.52; <i>P</i> = .02) and infusions (OR, 8.35; 95% CI, 1.10-88.77; <i>P</i> = .05) were significantly higher than for injections. Medicaid had higher odds of denial compared with commercial insurance (OR, 4.51; 95% CI, 1.13-22.01; <i>P</i> = .04). An initial denial by insurance significantly increased the likelihood of disease activity (OR, 6.18; 95% CI, 1.33-44.86; <i>P</i> = .03).</p><p><strong>Conclusions: </strong>Insurance restrictions delay necessary treatments, increase the likelihood of disease activity, and rarely change the approved disease-modifying therapy. Reducing PAs may lead to improved outcomes for patients with MS.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"17-21"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779716/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46401296","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Effects of Physical Therapy and Dalfampridine on Function and Quality of Life in Nonambulatory Individuals With Multiple Sclerosis: A Randomized Controlled Trial","authors":"Lacey E Bromley, Bianca Weinstock-Guttman","doi":"10.7224/1537-2073.2023-063","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-063","url":null,"abstract":"\u0000 \u0000 \u0000 Decreases in mobility, quality of life (QOL) and cognition are commonly seen in people with multiple sclerosis (MS). Physical therapy (PT) and exercise have been shown to improve many symptoms in ambulatory individuals with MS, however, evidence in nonambulatory people with MS is lacking. Dalfampridine is a US Food and Drug Administration-approved medication for MS that treats impaired ambulation by enhancing nerve conduction. To our knowledge, no study has examined the combined effect of PT and dalfampridine and very few studies have examined dalfampridine's effect on function in individuals with more progressive disease. The purpose of this study was to examine the effectiveness of PT combined with dalfampridine or a placebo on function, QOL, and cognition in nonambulatory individuals with MS. In addition, we explored the benefits of PT in all participants to increase the extremely limited research in this population.\u0000 \u0000 \u0000 \u0000 Adults with MS were randomly assigned to receive dalfampridine (n = 13) or placebo (n = 14) for 12 weeks in conjunction with PT treatment 2 times a week. Function, QOL, and cognition were assessed at baseline, 6 weeks, and 12 weeks.\u0000 \u0000 \u0000 \u0000 There was a significant time × group interaction for the Multiple Sclerosis Quality of Life-54 favoring the placebo group. Both groups significantly improved on the 9-Hole Peg Test (left arm only), sitting lateral reach (right), transferring from wheelchair to mat, and repeated sit to stand.\u0000 \u0000 \u0000 \u0000 The addition of dalfampridine to physical therapy did not improve function, QOL, or cognitive processing speed. Importantly, this study demonstrated an overall benefit in function and QOL with physical therapy 2 times a week for 12 weeks for nonambulatory individuals with MS.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"80 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138998725","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"High-Intensity Gait Training in an Individual With Neuromyelitis Optica and Research Recommendations for Individuals With Multiple Sclerosis","authors":"Rebecca Phelan, Kirsten Potter","doi":"10.7224/1537-2073.2023-035","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-035","url":null,"abstract":"\u0000 \u0000 \u0000 Neuromyelitis optica (NMO), similar to multiple sclerosis (MS), is an autoimmune disorder affecting the central nervous system. In people with central nervous system diagnoses, high-intensity gait training (HIGT) can support neuroplasticity, improving functional mobility. While low- to moderate-intensity exercise is beneficial in improving outcomes in individuals with NMO and MS, the impact of HIGT has not been thoroughly explored. This case study explores the safety and efficacy of HIGT in an individual with NMO.\u0000 \u0000 \u0000 \u0000 A 43-year-old man with NMO participated in a HIGT program utilizing the least amount of body weight support necessary to achieve a target heart rate of 60% to 80% of heart rate reserve or a Borg Rating of Perceived Exertion score of 15 to 17 during an in-patient rehabilitation stay. Interventions incorporated stair training, gait variances, and virtual reality.\u0000 \u0000 \u0000 \u0000 The patient successfully completed a 90-minute training session 4 to 7 times per week for 6 weeks following a HIGT regimen for 40% to 60% of each session. Meaningful gains in bed mobility, transfers, and gait allowed for a discharge to his home.\u0000 \u0000 \u0000 \u0000 This case suggests that HIGT in patients with NMO can be safe and effective in improving functional mobility. Due to the similarities between NMO and MS, this case provides a framework to assist clinicians in developing a HIGT plan of care for individuals with MS. Additional research is needed to clarify HIGT parameters, including intensity and duration, to improve functional mobility in individuals with MS.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"32 5","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138603794","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarah B. Simmons, Alexis Skolaris, Ryan Love, Tori Fricker, Amanda L Penko, Yadi Li, Brittany Lapin, Matt Streicher, Francois Bethoux, Susan M. Linder
{"title":"Intensive Aerobic Cycling Is Feasible and Elicits Improvements in Gait Velocity in Individuals With Multiple Sclerosis: A Preliminary Study","authors":"Sarah B. Simmons, Alexis Skolaris, Ryan Love, Tori Fricker, Amanda L Penko, Yadi Li, Brittany Lapin, Matt Streicher, Francois Bethoux, Susan M. Linder","doi":"10.7224/1537-2073.2023-042","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-042","url":null,"abstract":"\u0000 \u0000 \u0000 Aerobic exercise (AEx) has many potential benefits; however, it is unknown whether individuals with multiple sclerosis (MS) can attain the optimal intensity and duration to harness its effects. Forced-rate exercise (FE) is a novel paradigm in which the voluntary pedaling rate during cycling is supplemented to achieve a higher exercise intensity. The aim of this pilot trial was to investigate the feasibility and initial efficacy of a 12-week FE or voluntary exercise (VE) cycling intervention for individuals with MS.\u0000 \u0000 \u0000 \u0000 Twenty-two participants with MS (Expanded Disability Severity Scale [EDSS] 2.0-6.5) were randomly assigned to FE (n = 12) or VE (n = 10), each with twice weekly 45-minute sessions at a prescribed intensity of 60% to 80% of maximum heart rate (HR).\u0000 \u0000 \u0000 \u0000 Eighteen individuals (FE = 11; VE = 7) completed the intervention, however, adaptations were required in both groups to overcome barriers to cycling. Overall, participants exercised for an average of 42.2 ± 2.3 minutes at an aerobic intensity of 65% ± 7% of maximum HR and a pedaling cadence of 67.3 ± 13.3 RPM. Cycling led to improved treadmill walking speed (0.61 to 0.68 m/sec, P = .010), with somewhat greater improvement with FE compared to VE (increase of 0.09 vs 0.03 m/s, respectively, P = .17) post intervention. Notably, the participant with the highest disability level (EDSS 6.5) tolerated FE but not VE.\u0000 \u0000 \u0000 \u0000 Aerobic exercise is feasible for individuals with MS, although those with increased disability may require novel paradigms such as FE to achieve targeted intensity. Further trials are warranted to investigate the effects of FE across the MS disability spectrum.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"31 7","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138601868","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rosalind C Kalb, Deborah Miller, Jon Strum, Sara Loud
{"title":"Addressing the Needs of Multiple Sclerosis Caregivers From Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol.","authors":"Rosalind C Kalb, Deborah Miller, Jon Strum, Sara Loud","doi":"10.7224/1537-2073.2023-075","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-075","url":null,"abstract":"<p><strong>Background: </strong>Caregivers of individuals with multiple sclerosis (MS) have emotional, instrumental, wellness, and social needs beginning with their partner's diagnosis and continuing throughout the disease course. Their feelings of grief, anxiety, depression, isolation, and fatigue, as well as the limited time they have for their own self-care, impact their health and quality of life; yet caregiver needs often go unrecognized by health care providers, extended family, friends, and employers. This project creates an online caregiver resource that will benefit caregivers, enable MS clinicians to offer caregivers the support and resources they need in a timely and time-efficient way, and thereby benefit individuals with MS as well.</p><p><strong>Methods: </strong>We assembled a caregiver advisory board to help us identify caregiver needs and corresponding resources starting from diagnosis and continuing throughout the disease course. We then surveyed the larger MS caregiver community for validation and refinement of the resource list. Each of the identified resources was then vetted for quality and accuracy by the authors.</p><p><strong>Results: </strong>The caregiver resources are now ready to be put into a dedicated website that will allow easy access to information, support, tools, and resources as needed.</p><p><strong>Conclusions: </strong>The process of creating this caregiver resource confirmed longstanding findings in the literature about the caregiving role. The resource that has been created will benefit caregivers of individuals with MS, their loved ones, and MS clinicians.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 6","pages":"273-277"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10634596/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134648928","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Complete Transcript: Opportunities in Multiple Sclerosis Care Partner Research: An Interview.","authors":"","doi":"10.7224/1537-2073-25.6.278a","DOIUrl":"https://doi.org/10.7224/1537-2073-25.6.278a","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 6","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10660195/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138459866","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sara L Douglas, Matthew Plow, Tanya Packer, Amy R Lipson, Michelle J Lehman
{"title":"Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals With Multiple Sclerosis: A Randomized Pilot Study Trial.","authors":"Sara L Douglas, Matthew Plow, Tanya Packer, Amy R Lipson, Michelle J Lehman","doi":"10.7224/1537-2073.2022-111","DOIUrl":"10.7224/1537-2073.2022-111","url":null,"abstract":"<p><strong>Background: </strong>Caregivers of people with multiple sclerosis (MS) report poor emotional outcomes yet few interventions have been tested. The goal of this study was to compare the effectiveness of a remotely delivered intervention with 2 arms (ie, website and telecoaching vs website only) aimed at reducing depression, anxiety, stress, and distress in informal caregivers of individuals with MS.</p><p><strong>Methods: </strong>From March 2021 through August 2021, 151 care-givers were enrolled in the study. The intervention occurred over a 4-month period. The website plus telecoaching arm received (a) a monthly coaching session focused on information, skill building, and support that was delivered by a licensed social worker via videoconference or telephone, and (b) had access to a study-designed website for caregivers of individuals with MS. The website-only arm did not receive coaching sessions and had the same website access. Data were obtained at baseline, immediately after the intervention period, and 6 weeks after the intervention.</p><p><strong>Results: </strong>A linear mixed-effects model using an autoregressive covariance structure was used. It showed that the group by time interaction was statistically significant for the overall composite emotion score (depression, anxiety, stress) (<i>P</i> = .037) and the stress subscale score (<i>P</i> = .047), and it indicated that the website plus telecoaching arm demonstrated greater effectiveness at reducing the overall composite emotion and stress subscale scores.</p><p><strong>Conclusions: </strong>Use of a remotely delivered psychoeducational intervention that included individual coaching sessions as well as website access demonstrated preliminary efficacy in improving emotional outcomes in caregivers of individuals with MS. Further testing of the intervention with a larger sample is recommended.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"252-258"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10634597/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43417122","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}