International journal of MS care最新文献

Background: It is recommended that patients taking immunosuppressive anti-CD20 monoclonal antibodies (mAbs) receive pneumococcal vaccinations before their first dose to ensure optimal immune response. An initial medication use evaluation reviewed adherence to Centers for Disease Control and Prevention (CDC) pneumococcal immunization recommendations at the study site, and room for improvement was identified. The nursing team implemented workflow changes to increase nursing involvement in vaccination coordination, education, tracking, and administration. We sought to evaluate the impact of a nursing intervention on optimal pneumococcal vaccination administration rates in patients receiving anti-CD20 mAbs at a multiple sclerosis (MS) center.

Methods: We performed a single-center, retrospective, pre/post medication use evaluation. Inclusion criteria were older than 18 years with a diagnosis of MS and received their first anti-CD20 mAb infusion at the study site during the preintervention or postintervention time frame.

Results: We included 406 and 73 patients in the preintervention and postintervention studies, respectively. The nursing intervention significantly improved the percentage of patients receiving optimal pneumococcal vaccination before their first infusion from 58% to 84% and significantly reduced the number with unknown vaccination status from 17% to 3%. Patients who received optimal follow-up vaccination with 23-valent pneumococcal polysaccharide vaccine after optimal 13-valent pneumococcal conjugate vaccine administration improved from 9% to 56%.

Conclusions: A nursing team intervention improved adherence to CDC pneumococcal immunization recommendations for patients receiving anti-CD20 mAb therapy. This project highlights the value of interdisciplinary team collaboration between health system specialty pharmacies and specialized nursing teams in the care of patients with MS.

Background: Multiple sclerosis (MS) is a common debilitating neurologic disease that affects mostly young women. This review provides an overview of research on the psychosocial impact of parental MS on children to inform clinicians and support people with MS considering parenthood.

Methods: A systematic review of the literature was performed by searching the MEDLINE, PsycINFO, and PSYNDEX databases. We included quantitative and mixed-method studies assessing psychosocial outcomes of children with a parent with MS. Studies were screened for eligibility and evaluated for risk of bias.

Results: We screened 608 references, assessed 72 studies in full-text, and included 28 studies in this review. Most of the studies reported on psychosocial adjustment processes, with most results suggesting negative consequences, including difficulties with mood, behavior, or social interaction. Several studies also described associations between children with a parent with MS and increased incidences of psychiatric disorders. Nevertheless, some studies claimed that children with a parent with MS were not more likely to have psychosocial problems compared with children without a parent with MS. A few studies indicated probable positive effects of parental MS, eg potentially increased social competence. Other investigated outcomes were children's coping skills, early childhood development, body image, and effects on education, and these were unaffected or only slightly affected by having a parent with MS.

Conclusions: Having a parent with MS has a relevant effect on children. However, the heterogeneous nature and varying quality of the included studies limit the interpretability of these findings. Further research is needed to provide robust evidence.

Background: Backward walking (BW) interventions have improved gait and balance in persons with stroke, cerebral palsy, and Parkinson disease but have not been studied in persons with multiple sclerosis (MS). We examined the feasibility of a BW intervention and how it affected strength, balance, and gait vs forward walking (FW) in persons with MS.

Methods: Sixteen persons with MS with a Patient-Determined Disease Steps (PDDS) scale score of 3 to 5 (gait impairment-late cane) were randomized to the FW (n = 8) or BW (n = 8) group. Participants did 30 minutes of FW or BW on a treadmill 3 times per week for 8 weeks (24 visits). Enrollment, adherence rate, and safety were tracked. The Timed Up and Go test, Six-Spot Step Test, single-leg stance, and abbreviated Activities-specific Balance Confidence scale were used to measure balance. Hip and knee flexion and extension strength (isometric peak torque), gait speed, and spatiotemporal gait parameters were measured. A 2×2 factorial multivariate analysis of covariance was used to examine changes in strength, balance, and gait, with the PDDS scale score as the covariate.

Results: Treatment adherence rate was 99.7%, with no safety concerns. After controlling for baseline differences in disability (PDDS scale score; P = .041), the BW group improved dominant hip flexion strength preintervention to postintervention compared with the FW group (F _1,13 = 9.03; P = .010). No other significant differences were seen between groups.

Conclusions: This was the first study to look at BW as an intervention in persons with MS. Based on its feasibility, safety, and significant finding, BW should be studied in a larger, definitive trial in the future.

Background: Fatigue is a particularly debilitating symptom for people with multiple sclerosis (MS). Although personality traits and MS have been studied, interoception and emotional susceptibility and their links to fatigue have not yet been explored.

Methods: Study participants provided demographic information and completed standardized patient-reported outcomes of walking function, physical activity, subjective fatigue, interoceptive awareness, and emotional susceptibility. A subset of participants participated in semistructured interviews discussing fatigue, body sensations, emotions, and their effects on exercise. Quantitative data were analyzed using multiple regression. Qualitative data were analyzed using thematic analysis.

Results: Mean ± SD Fatigue Severity Scale scores (5.0 ± 1.3) indicated that fatigue was a problematic symptom. Mean ± SD Multidimensional Assessment of Interoceptive Awareness, Version 2 (2.8 ± 0.6) and Emotional Susceptibility Scale (3.0 ± 1.0) scores indicated lower levels of interoceptive awareness and emotional susceptibility. Quantitative data indicated no relationship between fatigue and interoceptive awareness (β = -0.20; P = .88) and emotional susceptibility (β = 0.03; P = .83), and neither were these related to physical activity (β = -0.07; P = .64). Qualitative themes indicated strong fatigue experiences involving the whole body and individual limbs, anger and frustration, and effects on physical activity.

Conclusions: Physically active people with MS report strong sensations of fatigue closely linked to frustration and helplessness. There was agreement between qualitative and quantitative assessments of fatigue but dissonance regarding interoceptive awareness and physical activity. The practice of clinicians, particularly those involved with facilitating or planning physical activity for persons with MS, would benefit from these findings about fatigue.

Background: People with multiple sclerosis (MS) who use a wheelchair or scooter full-time fall frequently; however, fall prevention programming that meets the unique needs of this population is limited. This study examined the preliminary efficacy of a group-based online fall prevention and management intervention designed specifically for people with MS.

Methods: This pre/post intervention, mixed-methods study included people with MS who used a wheelchair or scooter full-time, experienced at least 1 fall within the past year, and transferred independently or with minimal or moderate assistance. Participants engaged in a 6-week, online, individualized, multicomponent fall prevention and management intervention: Individualized Reduction of Falls-Online (iROLL-O).

Results: No statistically significant change in fall incidence occurred after iROLL-O. However, fear of falling significantly decreased (P < .01) and knowledge related to fall management (P = .04) and fall prevention and management (P = .03) significantly improved. Qualitative results indicated that participants valued the opportunity for peer learning and iROLL-O's attention to diverse influences on fall risk.

Conclusions: This study is the first to examine the preliminary efficacy of an online fall prevention and management intervention for people with MS who use a wheelchair or scooter full-time. iROLL-O has promise, and participants found it valuable. Further efforts are needed to retain iROLL-O participants with lower confidence and functional mobility, and more research is needed to investigate the impact of the intervention on key outcomes over time.

Background: Multiple sclerosis (MS) is a degenerative disease with typical onset between 20 and 50 years of age. An increase in MS cases has been found in the adolescent US population. Adolescents require fine motor manipulation skills for their functional and academic performance. Deficits in the major components of manipulation skills may result in insufficient function. This study examined the 2-point, 3-point, and lateral pinch strength of adolescents diagnosed as having MS.

Methods: Seventy-four adolescents, 37 with a diagnosis of relapsing-remitting MS and a control group of 37 age-matched peers, participated in this study. Data on 2-point, 3-point, and lateral pinch strength in both hands were collected using a pinch meter. Analyses of covariance were used to describe differences across the 2 groups, and effect sizes (Cohen d) were calculated by finding the mean difference between the study groups divided by the pooled SD.

Results: A significant difference was found in the 2-point pinch strength of the right hand of participants with pediatric MS compared with age- and sex-matched control participants. There were no significant differences in 2-point pinch strength of the left hand or in 3-point or lateral pinch strength of the right and left hands.

Conclusions: Pinch grasp strength was differentially affected in adolescents with MS. Pinch strength should be assessed and considered in adolescents with MS for a better understanding of their functional performance of fine motor tasks in activities of daily living and academics.

Background: Children with the chronic disease multiple sclerosis (MS) report lower health-related quality of life (HRQOL) compared with children who experience transient illness. The relationship between an MS diagnosis and the HRQOL of affected children is mediated by parental HRQOL. Interventions to improve the HRQOL of children with MS should, therefore, include parents of affected children.

Methods: We performed a configurative review for improvements in the HRQOL of children facing diseases similar to MS and their parents. We used the generated concepts to form theories. Next, we performed qualitative interviews with clinicians who care for children with MS to characterize overlap between the proposed theories and usual care. Finally, we generated recommendations for improving the HRQOL of children with MS and their parents.

Results: We theorize that the HRQOL of children with MS and their parents may be improved by strengthening self-concept, hope, and knowledge. Qualitative interviews with 7 clinicians who care for children with MS revealed no common psychosocial care protocol. The interviews did, however, reveal sources of psychosocial care that overlap with the proposed theories and barriers to optimizing such care.

Conclusions: Grounded in theory and clinically oriented practice, recommendations to improve the HRQOL of children with MS and their parents are to implement standardized screening, pool provider counseling strategies, create computer applications with psychosocial interventions, promote age-appropriate education resources, and secure positions for MS specialists.

Background: The Multiple Sclerosis Resiliency Scale (MSRS) was designed to assess factors connected to resilience when facing MS-related challenges. Although the MSRS has demonstrated good internal consistency and construct validity, its test-retest reliability has yet to be established. Identifying the minimal detectable change (MDC) of the scale will also improve its utility as an outcome measure for resilience-based interventions. This study aimed to determine the test-retest reliability and MDC of the MSRS.

Methods: Participants were 62 persons with MS who completed the MSRS twice, with a mean ± SD of 16.60 ± 3.97 days (range, 14-30 days) between assessments. Test-retest reliability was evaluated using a 2-way, random-effects, single-measurement intraclass correlation coefficient (ICC), with agreement between time 1 and time 2 visualized with a Bland-Altman plot. The MDC was calculated using the standard error of measurement with a 95% CI.

Results: At time 1, the mean ± SD MSRS score was 77.19 ± 11.97 (range, 45.83-97.00); at time 2, the mean ± SD score was 76.38 ± 12.75 (range, 46-98). The MSRS total score had good test-retest reliability (ICC = 0.88), with the subscale ICCs ranging from 0.77 (MS Peer Support) to 0.93 (Spirituality). The MDC for the total score was 11.95.

Conclusions: These findings suggest that the MSRS has good test-retest reliability and that persons with MS with a difference of 12 points or more between assessments have experienced a reliable change. The results support the utility of the MSRS as a potential outcome measure for MS-related resilience.

Background: People with moderate to severe multiple sclerosis (MS) and their family care partners do not engage in sufficient physical activity (PA) for health benefits. Dyadic PA interventions need to be developed to benefit each individual and the dyad. The objective of this study was to engage expert stakeholders in prioritizing and refining key intervention content, delivery methods, and the practical/logistical aspects of a dyadic PA intervention for persons with MS and their care partners.

Methods: Thirty-two stakeholders (14 clinicians, 11 people with MS, 5 MS care partners, and 2 representatives of organizations that provide support services for people with MS and/or MS care partners) completed 2 rounds of a modified e-Delphi survey. In round 1, participants rated items across 3 domains: key intervention content (n = 8), delivery methods (n = 9), and practical/logistical aspects (n = 4). Participants contributed additional ideas about these domains, which were incorporated into round 2. Items that did not reach consensus in round 1 were forwarded to round 2 for rerating. Data were analyzed using descriptive statistics and content analysis.

Results: A 24-item list of recommendations was generated, including ensuring that presentation of the intervention content encouraged lifestyle activities in addition to exercise, using videoconferencing rather than teleconferencing as a delivery platform, and stressing the importance of flexibility during the support calls.

Conclusions: Feedback will be used to improve the quality of the intervention. The next step in this line of research involves evaluating the refined intervention in a pilot feasibility trial.

Background: People with multiple sclerosis (MS) are living longer but not necessarily better lives, and this portends reduced health-related quality of life (HRQOL). Physical activity (PA) may be a correlate of HRQOL for people with MS. We examined differences in HRQOL and PA between older adults with and without MS to determine whether PA is associated with HRQOL and whether it accounts for group differences in HRQOL.

Methods: Thirty-one older adults with MS and 30 age- and sex-matched controls without MS completed the 36-Item Short Form Health Survey (SF-36) and the Godin Leisure-Time Exercise Questionnaire (GLTEQ). Data were analyzed using the Baron and Kenny approach for examining PA via the GLTEQ as a mediator of group differences in HRQOL.

Results: The MS group had significantly lower component scores on the SF-36 and the GLTEQ than the control group. The GLTEQ scores were correlated with SF-36 physical component scores (r = 0.52), whereas the correlation with mental component scores (r = 0.23) was small and nonsignificant. Group assignment initially explained 31% of the variance in physical component scores (β = 0.55) and adding GLTEQ to the model accounted for an additional 12% of the variance in physical component scores. Thus, group (β = 0.42) and GLTEQ (β = 0.37) were both significant correlates of physical component scores. The group effect was modestly attenuated with the addition of GLTEQ in step 2 (step 1 β = 0.55; step 2 β = 0.42) and indicated partial rather than full mediation.

Conclusions: These results provide cross-sectional support for future research examining approaches to increase PA to possibly improve the physical component of HRQOL in older adults with MS.