Needs of neuro-oncological patients and their caregivers during the hospitalization and after discharge: results from a longitudinal study.

PURPOSE: The aims of this study are to identify neuro-oncological patients' and their caregivers' needs during hospitalization (T0) and at 4 months after discharge (T1); to analyze the longitudinal changes in patients' and caregivers' needs and burden; to identify correlations between patients' needs and caregivers' burden and needs. METHODS: A pilot observational longitudinal study was conducted on 94 neuro-oncological patients and their caregivers using NEQ to evaluate patients' needs, CNA, and FSQ for caregivers' needs and burden at T0 and T1. Descriptive statistics were performed to illustrate the distribution of questionnaires' scores. The longitudinal change of NEQ, FSQ, and CNA scores were investigated using Wilcoxon test. Spearman's correlation was used to measure the relation between NEQ and FSQ and CNA scores. RESULTS: The most frequent patients and caregivers' needs were material and informative. Needs tend to decrease over time; in particular FSQ factor "need for knowledge about the disease", CNA factor "Information/communication needs" and CNA total score significantly decreased (p < 0.001). NEQ total score significantly correlated with FSQ factors "emotional burden" and "need for knowledge about the disease" and CNA total and factors scores at T0 and T1. At T0, NEQ correlated significantly with FSQ factor "thoughts about death", while at T1, it correlated with FSQ factor "problems in social involvement". CONCLUSIONS: It is crucial to plan an assessment of patients' and caregivers' needs from the very beginning, in order to identify those individuals potentially at risk of developing high level of distress and to provide information and support following the illness trajectory of the brain tumor.

Approaches to treatments of chronic migraine associated with medication overuse: a comparison between different intensity regimens.

Treatment of chronic migraine with medication overuse requires withdrawal from acute medications. However, guidelines and clear indications for different intensity regimens, i.e., day hospital (DH) vs. inpatient treatment, are not available. Patients completed disability, quality of life (QoL) and depression questionnaires; headaches frequency and overused medications category were collected. Mann-Whitney U test and Chi square were used to assess differences between inpatients and DH patients; Bonferroni correction was applied. 194 patients aged 43.9 ± 12 (160 females) were enrolled (100 from DH, 94 inpatients). Inpatients were older, less educated and with lower employment rates. Inpatients had higher MIDAS scores (P = 0.003) and headache frequency (P = 0.002). They had lower QoL for restrictive (P = 0.002) and preventive components; no difference was found for disability, mood state and QoL emotional component. Patients treated during hospitalization had higher disease severity and lower quality of life, but similar disability and mood state than those treated in DH.

Development and validation of the multiple sclerosis questionnaire for the evaluation of job difficulties (MSQ-Job).

OBJECTIVE: Multiple sclerosis (MS) affects young adults of working age. Difficulties in work-related activities are usually ascribed to MS symptoms, while the impact of workplace features is underestimated. This article presents the Multiple Sclerosis Questionnaire for Job Difficulties (MSQ-Job), designed to assess working difficulties due to MS symptoms and workplace features. METHODS: A sample of employed MS patients completed the MSQ-Job, the WHO-Disability Assessment Schedule (WHODAS 2.0) and the 54-items MS Quality of Life Questionnaires (MSQOL-54); the expanded disability status scale (EDSS) was used to define MS severity. Factor structure was evaluated using principal component extraction and Oblimin rotation; internal consistency was assessed with Cronbach's alpha; construct and discriminant validity using t-test (EDSS 0-2 vs >2; patients self-reporting need for support vs patients reporting no needs; full-time vs part-time employees); and Pearson's correlation with WHODAS 2.0 and MSQOL-54. RESULTS: The MSQ-Job is a 42-item questionnaire with six scales and an overall factor. Scores range on a 0-100 scale (higher scores indicate more and more severe difficulties); patients with EDSS>2 and self-reporting support needs had worse scores than those with EDSS 0-2 and without needs. Correlations with WHODAS 2.0 and MSQOL-54 were generally significant (P < 0.0007) and below 0.70. CONCLUSIONS: The MSQ-Job jointly measures the impact of respondents' symptoms and workplace features on work activities and enables to assess the effects of clinical and occupational interventions and better describe the impact of MS indirect costs.

The ICF as a framework to collect and interpret data on the extent and variety of disability in neurological conditions.

INTRODUCTION: Neurological conditions are associated with high levels of disability. OBJECTIVES: The aim of this study was to describe, using the International Classification of Functioning, Disability and Health (ICF), the most relevant aspects of disability in patients with neurological conditions. We collated data from previous studies on myasthenia gravis, migraine, Parkinson's disease, multiple sclerosis, traumatic brain injury, stroke, epilepsy, vegetative state and minimally conscious state, and identified as relevant those ICF categories reported by at least 50% of patients in each condition. CONCLUSIONS: Records from 1310 patients were available. A total of 97 ICF categories were reported, and 21 were commonly addressed in more than five conditions. Approximately half of the categories in body functions were related to mental and movement-related functions and more than 25% of the activities-related categories involved activities that require the support from a caregiver. Environmental factors were mostly reported as facilitators. Our data indicate a residual mind-body dichotomy, the relevance of disability not only for the patients but also for their caregivers, and the difficulties in addressing barriers in the environment.

Determinants of disability using count-based approaches to ICF-based definition of neurological disability.

INTRODUCTION: The aim of this study was to explore the most relevant determinants of severe disability in a heterogeneous sample of patients with neurological conditions. OBJECTIVES: We used data from previous studies on patients with myasthenia gravis (MG), migraine, Parkinson's disease (PD), multiple sclerosis, traumatic brain injury (TBI), stroke and epilepsy (349 patients, aged 18-74 years; mean 48.0, SD 11.7). We calculated count-based extension indexes to address severe disability, and hierarchical logistic regression to assess the association between severe disability, sociodemographic and health status information. CONCLUSIONS: Results show that sociodemographic variables played a minor role, while health state information was a stronger determinant of severe disability. Compared to the reference value of TBI patients, those with MG, PD and epilepsy had higher odds to have severe difficulties undertaking daily activities despite the presence of environmental factors. Our results contrast with those of previous studies, mostly derived from general populations, showing the different impact of clinical and sociodemographic variables.

Do diagnostic differences between vegetative state and minimally conscious state patients correspond to differences in functioning and disability profiles? Results from an observational multi-center study on patients with DOC.

BACKGROUND: Patients in vegetative (VS) and minimally conscious state (MCS) have different degrees of consciousness recovery but both display severe levels of disability. AIM: To describe and compare VS and MCS patients' functioning and disability according to ICF model (International Classification of Functioning, Disability and Health). DESIGN: Observational cross-sectional multi-center study involving sixty-nine Italian centers. SETTING: Patients recruited in post-acute, long-term care facilities and at home in Italy. POPULATION: Adult patients in VS and MCS. METHODS: ICF Functioning profiles were completed and, for each ICF chapter and domain, extension and severity indexes were developed. Indexes have been compared between VS and MCS patients with Mann Whitney U test. Descriptive statistics have been applied to describe the most relevant categories that had a percentage of missing below 25% and that were reported as a problem by at least 50% of patients. RESULTS: A total of 564 patients were enrolled: 396 in VS (mean age 56.8), 168 in MCS (mean age 54.2). Fifty-eight ICF categories were selected: of them, 24 were from Activity and Participation (A&P). Few differences between patients in VS and MCS were reported in Body Functions (BF), mostly referred to mental, sensory and digestive functions; among A&P, differences were found only in learning chapter. For VS patients less environmental barriers were reported than MCS patients. CONCLUSION: Patients in VS and MCS have similar functioning and disability profiles and similar needs thus levels of care and assistance should not be different across the two conditions. CLINICAL REHABILITATION IMPACT: An ICF-based methodology of data collection enables to describe VS and MCS patients' functioning and disability: this is helpful when rehabilitation programs based on the features of single patients with DOC need to be planned.

A 14-month study of change in disability and mood state in patients with chronic migraine associated to medication overuse.

This paper aims to evaluate changes in disease severity, disability and mood state in patients with chronic migraine associated to medication overuse (CM-MO). MIDAS was used for assessing disease activity, WHO-DAS-2 for disability, DBI-2 for mood state. ANOVA was used to test change over time; t-test to assess follow-up differences in WHO-DAS-2 and BDI-2 between patients with MIDAS ≤20 and ≥21. Change in MIDAS, WHO-DAS-2 and BDI-2 scores were computed: Pearson's index was used to assess correlation between them; linear regression to assess change in WHO-DAS-2, using MIDAS and BDI-2 change as predictors. Mean MIDAS decreased significantly (from 101.9 to 52.0). In 26.1 % of the sample, MIDAS fell below 21 at follow-up: these patients had lower WHO-DAS-2 score. WHO-DAS-2 change was little correlated to MIDAS change and strongly correlated to changes in BDI-2 scores. 57.1 % of WHO-DAS-2 change variance is explained by change in BDI-2 and MIDAS scores. There was a clear clinical improvement 14 months after detoxification, and a modest reduction in disability which is explained by reduced disease activity and improved mood state. An appropriate treatment of CM-MO, based on detoxification and prophylaxis, is likely to reduce disease burden: recognition and treatment of mood problems may be a key factor to reduce disability.

Disability and mood state in patients with episodic and chronic migraine associated to medication overuse.

This study aims to compare disability and mood state in patients with episodic (EM) and chronic migraine associated to medication overuse (CM-MO), and to assess the relationships between the two outcomes. Patients, matched for age and gender, were administered the MIDAS, the WHO-DAS-2 and BDI-2. Difference between EM and CM-MO was assessed with the Kolmogorov-Smirnov Test; difference in distribution of patients with severe disability and low mood was tested with contingency coefficient; the correlation between MIDAS, WHO-DAS-2 and BDI-2 was tested with Spearman's index. Seventy patients were enrolled: CM-MO patients reported higher BDI-2 scores and higher MIDAS and WHO-DAS-2 scores, and were more likely to have severe disability and low mood state than those with EM; BDI-2 scores were correlated with disability scores, particularly with WHO-DAS-2. The study shows that disability and mood state are negatively impacted by the presence of more frequent headaches and by the overuse of acute medications.