Dynamic disability measures decrease the clinico-radiological gap in people with severely affected multiple sclerosis.

BACKGROUND: Expanded Disability Status Scale (EDSS) is limited when utilized in highly disabled people with multiple sclerosis (pwMS). OBJETIVE: To explore the relationship between disability measures and MRI outcomes in severely-affected pwMS. METHODS: PwMS recruited from The Boston Home (TBH), a specialized residential facility for severly-affected pwMS and University at Buffalo (UB) MS Center were assessed using EDSS, MS Severity Scale, age-related MSS, Scripps Neurological Rating Scale (SNRS) and Combinatorial Weight-Adjusted Disability Score (CombiWISE). In all scores except SNRS, higher score indicates greater disability. MRI measures of T1, T2-lesion volume (LV), whole brain, gray matter, medulla oblongata and thalamic volumes (WBV, GMV, MOV, TV) and thalamic dysconnectivity were obtained. RESULTS: Greatest disability differences between the TBH and UB pwMS were in SNRS (24.4 vs 71.9, p < 0.001, Cohen's d = 4.05) and CombiWISE (82.3 vs. 38.9, p < 0.001, Cohen's d = 4.02). In combined analysis of all pwMS, worse SNRS scores were correlated with worse MRI pathology in 8 out of 9 outcomes. EDSS only with 3 measures (GMV, MOV and TV). In severely-affected pwMS, SNRS was associated with T1-LV, T2-LV and WBV (not surviving false discovery rate (FDR) correction for multiple comparisons) whereas EDSS did not. CONCLUSION: Granular and dynamic disability measures may bridge the clinico-radiologcal gap present in severely affected pwMS.

Covid persistente y discapacidad / Long covid and disability

La long covid o covid persistente es un problema de salud que supondrá un alto coste oculto atribuible a la pandemia años después porque afecta a la capacidad laboral de muchos trabajadores. Dados los millones de casos de covid-19 en todo el mundo y las investigaciones actuales, que muestran que uno de cada 7 pacientes con covid-19 sigue sintomático a las 12 semanas, es probable que el número de pacientes con covid prolongada sea sustancial. La covid prolongada se caracteriza por secuelas heterogéneas que a menudo afectan a múltiples sistemas y órganos con impacto en el funcionamiento y la capacidad del trabajador. Los trabajadores con síntomas de covid persistente pueden regresar a su ocupación, pero esto implica un enfoque individualizado complejo del impacto de los síntomas en el trabajo, ajustes y modificaciones en el lugar del trabajo. Estos pacientes suelen informar de una afectación multisistémica prolongada y una discapacidad significativa. También debe abordarse el coste psicológico para el trabajador. En una encuesta de la Comunidad de Madrid (desarrollada por los sindicatos CC. OO., SATSE, CSIF, AMYTS) de 2022 se observa que el 24,5% de los afectados por covid prolongada estuvieron enfermos durante más de 12 meses y el 30% de los afectados necesita adaptación a su lugar de trabajo. En España se han reportado más de 10millones de personas infectadas por SARS-CoV-2 desde que comenzó la pandemia, por lo que se calcula que podría haber un millón de personas con covid persistente. Solo en 2021 se produjeron en España más de 2,6 millones de bajas laborales por covid-19, cuya duración media fue de 10 días. Cien millones de personas en todo el mundo padecen covid persistente, pero pocos países los cuentan oficialmente, ni ayudan con el empleo a los afectados... (AU)

Long covid is a health problem that will entail a high hidden cost attributable to the pandemic years after it because it affects the work capacity of many workers. Given the millions of covid-19 cases worldwide and current research showing that one in 7covid-19 patients remain symptomatic at 12 weeks, the number of long covid patients is likely to be substantial. Long covid is characterized by heterogeneous sequelae that often affect multiple systems, organs with an impact on the functioning and capacity of the worker. Workers with long covid symptoms can return to their occupation but this involves a complex individualized approach to the impact of symptoms on work, adjustments and modifications to the workplace. Patients with long covid typically report prolonged multisystem involvement and signicant disability. The psychological cost to the worker must also be addressed. A survey by the Community of Madrid (CCOO, SATSE, CSIF, AMYTS) in 2022 reveals that 24.5% of those affected by long covid were sick for more than 12 months; 30% of those affected by persistent covid need and adaption to their workplace. In Spain, more than 10million people infected with SARS-CoV-2 have been reported since the pandemic began, so it is estimated that there could be one million people with persistent covid. In 2021 alone there were more than 2.6 million sick leave due to covid-19 in Spain, the average duration of which was 10 days. One hundred million people around the world suffer from persistent covid, but few countries officially count them, nor do they help those affected with employment. In advanced countries, like the United States, long covid is treated as a disability,and the number of people with disabilities working or looking for work increased by 1.36 million, an increase of 23%, between January 2021 and January 2022... (AU)

[Long covid and disability]. / Covid persistente y discapacidad.

Long covid is a health problem that will entail a high hidden cost attributable to the pandemic years after it because it affects the work capacity of many workers. Given the millions of covid-19 cases worldwide and current research showing that one in 7covid-19 patients remain symptomatic at 12 weeks, the number of long covid patients is likely to be substantial. Long covid is characterized by heterogeneous sequelae that often affect multiple systems, organs with an impact on the functioning and capacity of the worker. Workers with long covid symptoms can return to their occupation but this involves a complex individualized approach to the impact of symptoms on work, adjustments and modifications to the workplace. Patients with long covid typically report prolonged multisystem involvement and signicant disability. The psychological cost to the worker must also be addressed. A survey by the Community of Madrid (CCOO, SATSE, CSIF, AMYTS) in 2022 reveals that 24.5% of those affected by long covid were sick for more than 12 months; 30% of those affected by persistent covid need and adaption to their workplace. In Spain, more than 10million people infected with SARS-CoV-2 have been reported since the pandemic began, so it is estimated that there could be one million people with persistent covid. In 2021 alone there were more than 2.6 million sick leave due to covid-19 in Spain, the average duration of which was 10 days. One hundred million people around the world suffer from persistent covid, but few countries officially count them, nor do they help those affected with employment. In advanced countries, like the United States, long covid is treated as a disability,and the number of people with disabilities working or looking for work increased by 1.36 million, an increase of 23%, between January 2021 and January 2022. In the United Kingdom, some 200,000 people are not working or are not looking for work due to long-term health problems attributable to long covid, since the pandemic began.

Impact of Robotic-Assisted Gait Training in Subacute Spinal Cord Injury Patients on Outcome Measure.

The improvement of walking ability is a primary goal for spinal cord injury (SCI) patients. Robotic-assisted gait training (RAGT) is an innovative method for its improvement. This study evaluates the influence of RAGT vs. dynamic parapodium training (DPT) in improving gait motor functions in SCI patients. In this single-centre, single-blinded study, we enrolled 105 (39 and 64 with complete and incomplete SCI, respectively) patients. The investigated subjects received gait training with RAGT (experimental S1-group) and DPT (control S0-group), with six training sessions per week over seven weeks. The American Spinal Cord Injury Association Impairment Scale Motor Score (MS), Spinal Cord Independence Measure, version-III (SCIM-III), Walking Index for Spinal Cord Injury, version-II (WISCI-II), and Barthel Index (BI) were assessed in each patient before and after sessions. Patients with incomplete SCI assigned to the S1 rehabilitation group achieved more significant improvement in MS [2.58 (SE 1.21, p < 0.05)] and WISCI-II [3.07 (SE 1.02, p < 0.01])] scores in comparison with patients assigned to the S0 group. Despite the described improvement in the MS motor score, no progression between grades of AIS (A to B to C to D) was observed. A nonsignificant improvement between the groups for SCIM-III and BI was found. RAGT significantly improved gait functional parameters in SCI patients in comparison with conventional gait training with DPT. RAGT is a valid treatment option in SCI patients in the subacute phase. DPT should not be recommended for patients with incomplete SCI (AIS-C); in those patients, RAGT rehabilitation programs should be taken into consideration.

Internet-based cognitive behavioral therapy for psychological distress in older adults without cognitive impairment living in nursing homes during the COVID-19 pandemic: A feasibility study.

BACKGROUND: The COVID-19 pandemic has had a detrimental effect on the mental health of older adults living in nursing homes. Very few studies have examined the effects of Internet-based Cognitive Behavioral Therapy (ICBT) on older adults living in nursing homes during the pandemic. We conducted a feasibility study using a single-group design, to explore the effectiveness of ICBT on psychological distress in 137 older adults (without cognitive impairment) from 8 nursing homes in 4 southeast cities in China, between January and March 2020. METHODS: Symptoms of depression, anxiety, general psychological distress, and functional disability were measured at baseline, post-treatment (5 weeks) and at a 1-month follow-up. Mixed-effects model was used to assess the effects of ICBT. RESULTS: Statistically significant changes with large effect sizes were observed from pre- to post-treatment on the PHQ-9 (p < .001, Cohen's d = 1.74), GAD-7 (p < .001, d = 1.71), GDS (p < .001, d = 1.30), K-10 (p < .001, d = 1.93), and SDS (p < .001, d = 2.03). Furthermore, improvements in treatment outcomes were sustained at 1-month follow-up, and high levels of adherence and satisfaction were indicated. CONCLUSION: ICBT was effective in reducing psychological distress in older adults without cognitive impairments living in nursing homes during the COVID-19 pandemic. Thus, it could be applied in improving the mental health of this vulnerable group during the pandemic.

Evaluation of different suspicion indices in identifying patients with Niemann-Pick disease Type C in clinical practice: a post hoc analysis of a retrospective chart review.

BACKGROUND: Niemann-Pick disease Type C (NP-C) is a lysosomal lipid storage disorder with varying symptomatology depending on the age of onset. The diagnosis of NP-C is challenging due to heterogeneous nonspecific clinical presentation of the disease. NP-C Suspicion Index (SI) was developed to aid screening and identification of patients with suspicion of NP-C for further clinical evaluation. Here we assess the performance of five NP-C SI models to identify patients with NP-C compared with clinical practice to determine the best SI model for identification of each clinical form of NP-C by age. METHODS: This was a post hoc analysis of a retrospective chart review of patient data collected from five expert NP-C centers. The study assessed the proportion of patients with NP-C who could have been identified using the Original SI, Refined SI, 2/7 SI, 2/3 SI, and Early-Onset SI and evaluated the performance of each SI against clinical practice. A score above a threshold of 70 points for the Original SI, 40 points for the Refined SI, 6 points for the Early-Onset SI, and 2 points for the 2/7 and 2/3 SIs represented identification of NP-C. RESULTS: The study included 63 patients, and of these, 23.8% had a family history of NP-C. Of the available SI tools, the Refined SI performed well in identifying patients with NP-C across all age groups (77.8% infantile, 100% juvenile and 100% adult groups), and earlier identification than clinical diagnosis would have been possible in 50.0% of infantile, 72.7% of juvenile and 87.0% of adult patients. Patients who were not detected by the Refined SI prior to clinical diagnosis mainly presented with delayed developmental milestones, visceral manifestations, neurologic hypotonia, clumsiness, ataxia, vertical supranuclear gaze palsy, parent or siblings with NP-C, dysarthria/dysphagia and psychotic symptoms. CONCLUSION: This study demonstrated the applicability of various SI models for screening and identification of patients with NP-C for further clinical evaluation. Although NP-C is rare and the patient population is limited, this study was conducted in a real-world setting and confirms SI models as useful screening tools that facilitate identification of patients with NP-C earlier in their disease course.

Disease characteristics, prognosis and miglustat treatment effects on disease progression in patients with Niemann-Pick disease Type C: an international, multicenter, retrospective chart review.

BACKGROUND: Niemann-Pick disease Type C (NP-C) is a lysosomal lipid storage disorder characterized by progressive neurodegenerative symptomatology. The signs and symptoms of NP-C vary with age at disease onset, and available therapies are directed at alleviating symptoms and stabilizing disease progression. We report the characteristics and factors related to disease progression, and analyze the effect of miglustat treatment on disease progression and patient survival using NP-C disability scales. METHODS: This retrospective, observational chart review included patients with NP-C from five expert NP-C centers. Patient disability scores were recorded using three published NP-C disability scales, and a unified disability scale was developed to allow comparison of data from each scale. Disease progression was represented by scores on the unified NP-C disability scale. Patients were stratified as infantile (< 4 years), juvenile (≥ 4 - < 16 years), and adult (≥ 16 years) based on age at diagnosis, and treated ≥1 year and non-treated/treated < 1 year based on the duration of miglustat treatment. RESULTS: The analysis included 63 patients; the majority (61.9%) were on miglustat therapy for ≥1 year. Ataxia and clumsiness/frequent fall were the most common neurologic symptoms across age groups, whereas, hypotonia and delayed developmental milestones were specific to infantile patients. In both infantile and juvenile patients, visceral signs preceded diagnosis and neurologic signs were noted at or shortly after diagnosis. Adult patients presented with a range of visceral, neurologic, and psychiatric signs in years preceding diagnosis. Patients on miglustat therapy for ≥1 year had a lower mean annual disease progression compared with those untreated/treated < 1 year (1.32 vs 3.54 points/year). A significant reduction in annual disease progression in infantile patients, and a trend towards reduced disease progression in juvenile patients after ≥1 year of miglustat treatment, translated into higher age at last contact or death in these groups. CONCLUSIONS: The type and onset of symptoms varied across age groups and were consistent with descriptions of NP-C within the literature. Miglustat treatment was associated with a reduced rate of disability score worsening in infantile and juvenile patients, both in agreement with increased age at last contact.

Finger and foot tapping as alternative outcomes of upper and lower extremity function in multiple sclerosis.

BACKGROUND: While magnetic resonance imaging contrast-enhancing lesions represent an excellent screening tool for disease-modifying treatments in relapsing-remitting multiple sclerosis (RRMS), this biomarker is insensitive for testing therapies against compartmentalized inflammation in progressive multiple sclerosis (MS). Therefore, alternative sensitive outcomes are needed. Using machine learning, clinician-acquired disability scales can be combined with timed measures of neurological functions such as walking speed (e.g. 25-foot walk; 25FW) or fine finger movements (e.g. 9-hole peg test; 9HPT) into sensitive composite clinical scales, such as the recently developed combinatorial, weight-adjusted disability scale (CombiWISE). Ideally, these complementary simplified measurements of certain neurological functions could be performed regularly at patients' homes using smartphones. OBJECTIVES: We asked whether tests amenable to adaptation to smartphone technology, such as finger and foot tapping have comparable sensitivity and specificity to current non-clinician-acquired disability measures. RESULTS: We observed that finger and foot tapping can differentiate RRMS and progressive MS in a cross-sectional study and can also measure yearly and two-year disease progression in the latter, with better power (based on z-scores) in comparison to currently utilized 9HPT and 25FW. CONCLUSIONS: Replacing the 9HPT and 25FW with simplified tests broadly adaptable to smartphone technology may enhance the power of composite scales for progressive MS.

Considerations in Spinal Fusion Surgery for Chronic Lumbar Pain: Psychosocial Factors, Rating Scales, and Perioperative Patient Education-A Review of the Literature.

OBJECTIVE: Despite widespread use of lumbar spinal fusion as a treatment for back pain, outcomes remain variable. Optimizing patient selection can help to reduce adverse outcomes. This literature review was conducted to better understand factors associated with optimal postoperative results after lumbar spinal fusion for chronic back pain and current tools used for evaluation. METHODS: The PubMed database was searched for clinical trials related to psychosocial determinants of outcome after lumbar spinal fusion surgery; evaluation of commonly used patient subjective outcome measures; and perioperative cognitive, behavioral, and educational therapies. Reference lists of included studies were also searched by hand for additional studies meeting inclusion and exclusion criteria. RESULTS: Patients' perception of good health before surgery and low cardiovascular comorbidity predict improved postoperative physical functional capacity and greater patient satisfaction. Depression, tobacco use, and litigation predict poorer outcomes after lumbar fusion. Incorporation of cognitive-behavioral therapy perioperatively can address these psychosocial risk factors and improve outcomes. The 36-Item Short Form Health Survey, European Quality of Life five dimensions questionnaire, visual analog pain scale, brief pain inventory, and Oswestry Disability Index can provide specific feedback to track patient progress and are important to understand when evaluating the current literature. CONCLUSIONS: This review summarizes current information and explains commonly used assessment tools to guide clinicians in decision making when caring for patients with lower back pain. When determining a treatment algorithm, physicians must consider predictive psychosocial factors. Use of perioperative cognitive-behavioral therapy and patient education can improve outcomes after lumbar spinal fusion.