International Journal of MS Care: Highlights from the January/February 2023 Issue

IJMSC Jan/Feb 2023

The International Journal of MS Care is a peer-reviewed, multidisciplinary, open access journal and the official journal of the Consortium of MS Centers. The journal strives to be useful and pertinent to all who are part of an MS care team, including physicians, nurses, therapists, and more.

So much is happening in the MS space, with new understandings of disease process and treatments just on the horizon. People with MS are living longer lives and the care they seek is what underpins our efforts.

As part of NeurologyLive's ongoing partnership with the CMSC, we're happy to spotlight some of the lastest peer-reviewed articles published in IJMSC.

What does current research tell us about relationships between people with MS and exercise, diet, mental health, aging, COVID-19, telehealth, and more? What do clinicians need to know about working with people with MS who are transgender or affected by climate change or navigating gender in a disease that affects women more often than men?

Read more below on some of our most recently published articles and head to IJMSC.org for more.

1. Factors Associated With Treatment-Related Changes in Voice Volume in People With Multiple Sclerosis

Crispiatico, Baldanzi, Bertuletti, et al.

doi:10.7224/1537-2073.2021-056

Vocal impairments, including harshness, breathiness, and vocal fatigue, are common in people with MS, but only about 2% of people with MS receive speech therapy. Crispiatico, Baldanzi, Bertuletti, et al, compared the Lee Silverman Voice Treatment LOUD with conventional treatments and hypothesized that treatment specificity, in this case for hypophonia, would promote improvement. The 2 biggest predictors of improvement were treatment specificity and degree of fatigue. Neurological status, disease duration, nor depression affected treatment improvement so even people with MS with high levels of disability may benefit from voice therapy.

2. Prioritizing Components of a Dyadic Physical Activity Intervention for People With Moderate to Severe Multiple Sclerosis

Fakolade, McKenna, and Kamel, et al.

doi:10.7224/1537-2073.2021-079

Health promotion, particularly physical activity, is especially important for people with MS. Although DMTs can slow progression, the best treatment strategies also include nonpharmacological interventions. Care partners of people with MS also have poorer physical and mental health than the general population. The dyad needs care to maintain quality of life. To address this situation, Fakolade, McKenna, and Kamel, et al, created "Physical Activity Together for MS (PAT-MS), a group-based, remote-delivered, dyadic PA intervention for people with moderate to severe MS and their care partners." This Delphi study engaged stakeholders to assess the aspects of PAT-MS on the way to a pilot trial of the program.

3. Establishing the Test-Retest Reliability and Minimal Detectable Change of the Multiple Sclerosis Resiliency Scale

Gromisch, Turner, Neto et al.

doi:10.7224/1537-2073.2021-126

People who demonstrate resilience are more able to cope with the fluctuating demands of living with MS and other chronic illnesses. They can do the things necessary to ensure physical and mental quality of life, including physical and social activities. But how can clinicians measure the resilience of a person with MS? "The Multiple Sclerosis Resiliency Scale (MSRS) is a multidimensional measure based on the conceptual framework that MS-related resilience is an interaction between protective factors and risk factors, which include psychological, physical, and social components." This research by Gromisch, Turner, Neto et al, establishes the test-rest ability and the minimum detectable change of the MSRS and its 5 subscales [Emotional and Cognitive Strategies; Physical Activity and Diet; MS Peer Support; Support From Family and Friends; Spirituality]. A movement of 12 points or more is indicative of reliable change for someone improving their resilience (eg, after a targeted intervention) or needing support while experiencing a loss of resilience.

4. A Systematic Review of the Validity and Reliability of the Patient-Determined Disease Steps Scale

Marrie, McFadyen, Yaeger, and Salter

doi:10.7224/1537-2073.2021-102

To effectively leverage the data collected by MS registries and to combine and compare studies, researchers need to know how to evaluate the measures used and how those measures compare to each other; in other words, there needs to be harmonization. Marrie, McFadyen, Yaeger, and Salter did a review of the Patient-Determined Disease Steps (PDDS), used by at least 3 registries and in over 100 studies. Their review "supports the criterion validity and construct validity of the PDDS scale to assess disability in individuals with multiple sclerosis and mild to moderate disabilities." Areas identified for further study include the PDDS's test-retest reliability, criterion validity for use with people with more severe MS disability, discriminate validity, and measurement invariance.

5. Health-Related Quality of Life and Physical Activity in Older Adults With Multiple Sclerosis

Motl and Baird

doi:10.7224/1537-2073.2021-136

"People with multiple sclerosis (MS) are living longer but not necessarily better lives, and this portends reduced health-related quality of life (HRQOL)." Motl and Baird cut right to the heart of the matter. Older adults with MS experience an increase in comorbidities and a decrease in leg function. There is also research that shows that older adults with MS have lower levels of physical activity and lower HRQOL than the general population. By comparing 2 groups of age- and sex-matched older adults with and without MS, could physical activity and HRQOL be correlated? Would changes in PA and HRQOL be due to MS or due to aging? Partial mediation was found, leaving more areas of inquiry open for exploration, including device-based measurement of physical activity and other areas of influence such as resilience, social support, and mental health factors.

6. Pinch Strength Measurements in Adolescents With Pediatric Multiple Sclerosis

Squillace, Krupp, Ray, and Muratori

doi:10.7224/1537-2073.2021-046

Unfortunately, MS is also expanding into those younger than the typical age of diagnosis. Squillace, Krupp, Ray, and Muratori studied pinch strength, important for activities of daily living and academics, in adolescents. Identification of pinch strength weakness is important: "Because deficits in fine motor control may predict the future severity of MS in a younger population, addressing this issue early may avoid disease complications related to function and quality of life." Adolescents can offset weakness with other strategies, so it may not be reported. Using the Baseline Mechanical Pinch Gauge (model 12-0200; Baseline Instruments, 2009) as the functional assessment tool, 2-point pinch strength was decreased bilaterally and unexplained by differences in age or sex.

7. Addressing Health-Related Quality of Life Among Children with Multiple Sclerosis

Mahony, Marrie, Laporte, and Brown

doi:10.7224/1537-2073.2022-017

Mahony, Marrie, Laporte, and Brown completed a configurative review to establish evidence-based guidelines for psychosocial care for children with MS and their parents. Research has shown that the health-related quality of life of children with MS and their parents is connected. After searching for studies that investigated the HRQOL of children with similar diseases and their parents, the theories of self-concept, hope, and disease-specific knowledge were identified as key to improving HRQOL for the dyad. After interviews with clinicians to align with current practice, recommendations to improve psychosocial care were offered to make HRQOL screening and educational materials more diverse in form and content and more readily available. A final recommendation was to increase the MS psychosocial workforce through grants and fellowships. Readers can earn CE credit with this article.