Identifying definite patterns of unmet needs in patients with multiple sclerosis using unsupervised machine learning.

INTRODUCTION: People with multiple sclerosis (PwMS) exhibit a spectrum of needs that extend beyond solely disease-related determinants. Investigating unmet needs from the patient perspective may address daily difficulties and optimize care. Our aim was to identify patterns of unmet needs among PwMS and their determinants. METHODS: We conducted a cross-sectional multicentre study. Data were collected through an anonymous, self-administered online form. To cluster PwMS according to their main unmet needs, we performed agglomerative hierarchical clustering algorithm. Principal component analysis (PCA) was applied to visualize cluster distribution. Pairwise comparisons were used to evaluate demographics and clinical distribution among clusters. RESULTS: Out of 1764 mailed questionnaires, we received 690 responses. Access to primary care was the main contributor to the overall unmet need burden. Four patterns were identified: cluster C1, 'information-seekers with few unmet needs'; cluster C2, 'high unmet needs'; cluster C3, 'socially and assistance-dependent'; cluster C4, 'self-sufficient with few unmet needs'. PCA identified two main components in determining the patterns: the 'public sphere' (access to information and care) and the 'private sphere' (need for assistance and social life). Older age, lower education, longer disease duration and higher disability characterized clusters with more unmet needs in the private sphere. However, demographic and clinical factors failed in explaining the four identified patterns. CONCLUSION: Our study identified four unmet need patterns among PwMS, emphasizing the importance of personalized care. While clinical and demographic factors provide some insight, additional variables warrant further investigation to fully understand unmet needs in PwMS.

Cost-Analysis of Telemedicine Interventions Compared with Traditional Care in the Management of Chronic Neurological Diseases: A Systematic Review.

Background: Telemedicine has proven successful in relieving the burden of chronic neurological disorders from the national health care systems by ensuring a highly customized and effective management plan. Although many studies focus on assessing telemedicine effectiveness, little is known about the economic implications of telemedicine applications in chronic neurological diseases (CNDs). This issue could account for a lack of widespread implementation. Objective: Our study attempted to fill this gap by systematically reviewing scientific literature on the economic evaluation of telemedicine compared with traditional care in the management of CNDs. Methods: We performed a literature search on PubMed, Google Scholar, Scopus, Embase, and Medline. The inclusion criteria were as follows: (1) studies with a full cost-analysis; (2) randomized controlled trials; (3) studies comparing telemedicine interventions with traditional care; (4) articles focusing only on CNDs. Conversely, the exclusion criteria were as follows: (1) studies focusing on acute neurological conditions or other diseases and (2) study protocols, case report, duplicate articles, abstract only, books, letters to editors, and review articles. Results: Ten articles met the inclusion criteria. Three different approaches of telemedicine intervention could be identified: digital cognitive-behavioral therapy (CBT), motor telerehabilitation, and home monitoring and assessment devices. Conclusion: Cost-analysis showed an overall benefit in terms of both cost and effectiveness from the application of telemedicine instead of in-presence management in CNDs. Among the identified interventions, digital CBT proved to be the most cost-saving. However, promising results were also found in monitoring and assessment devices and in telerehabilitation. Definitely, however, more thorough, comprehensive, and high-quality economic evaluation studies are needed.

Psychometric Calibration of a Tool Based on 360 Degree Videos for the Assessment of Executive Functions.

INTRODUCTION: Over the last decades, interactive technologies appeared a promising solution in the ecological evaluation of executive functioning. We have developed the EXecutive-functions Innovative Tool 360° (EXIT 360°), a new instrument that exploits 360° technologies to provide an ecologically valid assessment of executive functioning. AIM: This work wanted to evaluate the convergent validity of the EXIT 360°, comparing it with traditional neuropsychological tests (NPS) for executive functioning. METHODS: Seventy-seven healthy subjects underwent an evaluation that involved: (1) a paper-and-pencil neuropsychological assessment, (2) an EXIT 360° session, involving seven subtasks delivered by VR headset, and (3) a usability assessment. To evaluate convergent validity, statistical correlation analyses were performed between NPS and EXIT 360° scores. RESULTS: The data showed that participants had completed the whole task in about 8 min, with 88.3% obtaining a high total score (≥12). Regarding convergent validity, the data revealed a significant correlation between the EXIT 360° total score and all NPS. Furthermore, data showed a correlation between the EXIT 360° total reaction time and timed neuropsychological tests. Finally, the usability assessment showed a good score. CONCLUSION: This work appears as a first validation step towards considering the EXIT 360° as a standardized instrument that uses 360° technologies to conduct an ecologically valid assessment of executive functioning. Further studies will be necessary to evaluate the effectiveness of the EXIT 360° in discriminating between healthy control subjects and patients with executive dysfunctions.

Disability assessment using Google Maps.

OBJECTIVES: To evaluate the concordance between Google Maps® application (GM®) and clinical practice measurements of ambulatory function (e.g., Ambulation Score (AS) and respective Expanded Disability Status Scale (EDSS)) in people with multiple sclerosis (pwMS). MATERIALS AND METHODS: This is a cross-sectional multicenter study. AS and EDSS were calculated using GM® and routine clinical methods; the correspondence between the two methods was assessed. A multinomial logistic model is investigated which demographic (age, sex) and clinical features (e.g., disease subtype, fatigue, depression) might have influenced discrepancies between the two methods. RESULTS: Two hundred forty-three pwMS were included; discrepancies in AS and in EDDS assessments between GM® and routine clinical methods were found in 81/243 (33.3%) and 74/243 (30.4%) pwMS, respectively. Progressive phenotype (odds ratio [OR] = 2.8; 95% confidence interval [CI] 1.1-7.11, p = 0.03), worse fatigue (OR = 1.03; 95% CI 1.01-1.06, p = 0.01), and more severe depression (OR = 1.1; 95% CI 1.04-1.17, p = 0.002) were associated with discrepancies between GM® and routine clinical scoring. CONCLUSION: GM® could easily be used in a real-life clinical setting to calculate the AS and the related EDSS scores. GM® should be considered for validation in further clinical studies.

Assessment of Multiple Sclerosis Disability Progression Using a Wearable Biosensor: A Pilot Study.

BACKGROUND: The evaluation of walking activity of people with multiple sclerosis (pwMS) is desirable. We evaluate the power of the correlation of motor parameters detected by the accelerometer in the Samsung Gear S2 smartwatch with multiple sclerosis (MS) disability measures and patient reported outcomes (PROs). METHODS: We enrolled 25 relapsing remitting MS patients. We assessed disability with the expanded disability status scale, two-minute walking test (2MWT), timed 25-foot walk test (T25FWT), and nine-hole peg test. We collected PROs measuring fatigue, ambulatory ability, depression, quality of life, and bladder/bowel function. Participants were asked to wear the accelerometer for a period of 30 days. RESULTS: The Spearman's rank correlation coefficient showed a moderate negative correlation between the patient-determined disease steps (PDDS) score with the mean steps/day, a strong negative correlation between the PDDS score with the maximum number of daily steps (MNDS) and a moderate negative correlation between the fatigue severity scale score and MNDS. A moderate negative correlation between MNDS and the 2MWT and a moderate negative correlation between MNDS and the T25FW was found. CONCLUSION: Our results suggest that motor parameters derived from the accelerometer could be a reliable measure of motor disability in pwMS.

Online Validation of a Battery of Questionnaires for the Assessment of Family Functioning and Related Factors.

BACKGROUND: Family functioning relies on different factors that are related to the individual characteristics of each member, the social context in which the family nucleus is integrated, and the internal and interpersonal family factors. The Short Version of the Family Assessment Measure-III, Dyadic Adjustment Scale, Inventory of Parent and Peer Attachment, Twenty-item Toronto Alexithymia Scale, Hospital Anxiety and Depression Scale, and Multidimensional Scale of Perceived Social Support are among the most commonly employed self-report measures for the assessment of family functioning and related factors. Traditionally, these scales have been administered using paper-and-pencil versions. However, with increased access to the Internet, online administration of questionnaires has become more common. The present study aimed to validate an online version of each of the above-mentioned questionnaires in a heterogeneous sample of Italian healthy individuals. METHODS: One-hundred participants were recruited for each questionnaire. A crossover design was used in each validation. The minimum important difference (MID) was applied to evaluate the differences in the variances of the paper-and-pencil and online format scores. A MID >0.5 is a reasonable first approximation of a threshold of important change. Taking into account the cross over design, mean difference between pencil-and-paper and online versions, and Intraclass Correlation Coefficient were also estimated by mixed models. RESULTS: The MID was <0.5 for all the instruments used. Therefore, no significant difference was observed between the score variances of the paper-and-pencil and online formats of all the questionnaires. Moreover, for each questionnaire the difference between the means of online and paper-and-pencil administrations scores (mean O-P) was calculated. We reported 95% confidence intervals that did not include the 0; therefore, mean (O-P) was not statistically significant. CONCLUSIONS: The current findings indicate that the online versions of all the questionnaires we administered can be considered reliable tools for the assessment of family functioning and related factors.

Health-care disparities stemming from sexual orientation of Italian patients with Multiple Sclerosis: A cross-sectional web-based study.

Lesbian, gay, bisexual and transgender (LGBT) patients might experience unique difficulties and barriers to treatment of chronic diseases related to their sexual orientation. Thus, we investigated concerns experienced by LGBT patients with multiple sclerosis (MS). We conducted a web-based survey using a multi-choice questionnaire published in an Italian social-network (www.smsocialnetwork.com) for MS patients. The survey investigated: socio-demographic factors, lifestyle habits, MS-related health status and LGBT specific issues (e.g. friendliness to their sexual orientation and eventual homophobic behaviors in the MS Center). Among MS patients willing to use psychological services, LGBT patients were associated with a smaller number of psychological consultations, compared to heterosexuals (Coeff.=-0.449; p<0.001; 95%CI=-0.682 to -0.217). LGBT patients were more likely to change MS Center, compared to heterosexuals (OR=2.064; p=0.046; 95%CI=1.011-4.212). The number of MS Center changes was associated with MS Center friendliness (p=0.037; rho=-0.229) and with the occurrence of homophobic behaviors (p=0.036; rho=0.234). LGBT MS patients more frequently changed MS Center and had a reduced use of psychological services, compared to heterosexuals. The attitude towards LGBT MS patients might affect resource utilizations and LGBTs health status.