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.

Caregiver's burden in disorders of consciousness: a longitudinal study.

OBJECTIVES: To study the changes in the burden of informal caregivers of patients with disorders of consciousness (DOC) over time. MATERIALS AND METHODS: Short Form-12, Family Strain Questionnaire, Beck Depression Inventory and Coping Orientations to Problem Experiences were administered. RESULTS: Data collected on 216 informal caregivers of patients with DOC (59.6% females, mean age 53.4 ± 12.7 years old) were analysed at two time-points (mean distance is 2.7 years). Results of the national study revealed that caregivers' mental health improved (T0: M = 41.1, SD = 11.8; T1: M = 45.8, SD = 11.7), whereas the emotional burden (T0: M = 7.4, SD = 3.6; T1: M = 6.6, SD = 3.9) and the presence of depressive symptoms (T0: M = 14.3, SD = 9.3; T1: M = 11.7, SD = 10.2) as well as the need for information about the disease (T0: M = 2.7, SD = 1.2; T1: M = 2.2, SD = 1.4), thoughts of death (T0: M = 3.6, SD = 1.5; T1: M = 3.1, SD = 1.6) and the use of avoiding coping strategy (T0: M = 7.8, SD = 1.0; T1: M = 6.0, SD = 1.3) decreased at T1. Furthermore, depressive symptoms positively correlated with the emotional burden (0.580) and negatively with the mental health component of caregivers' self-perceived health condition (-0.473). Physical (-0.308) and mental health (-0.444) negatively correlated with emotional burden. Finally, the acute event and patients' health condition still have a deep impact on the economic situation of the family. CONCLUSION: Although high level of burden was observed, it tends to decrease over time, except for financial burden. Hence, this study suggests the importance to plan strategies or targeted interventions in order to reduce the psychosocial and financial burden associated with caregiving.

Difficulties in work activities and the pervasive effect over disability in patients with episodic and chronic migraine.

Migraine is associated with reduced productivity in work-related activities. The degree to which problems with work are, in turn, associated to the level of migraine-related disability as well as to headache frequency has been poorly explored. The aim of the study was to assess if migraine patients with different degrees of work difficulties showed a different level of migraine-related disability. A consecutive sample of patients with episodic migraine (EM) or with chronic migraine (CM) with medication overuse (MO) attending the Headache Centre of the Neurological Institute C. Besta of Milan was studied. All patients completed the MIDAS and the WHODAS 2.0 questionnaires. The total scores of both questionnaires, frequency of headaches, average pain intensity, and the scores of each subscale of the WHODAS 2.0 were calculated separately for EM and CM patients. The score of WHODAS 2.0 "Work difficulties" subscale was used to divide the studied patients into two groups, i.e. those above and those below the median "Work difficulties" subscale score. Independent sample t test was used to compare these two groups as far as all the other studied variables. A total of 296 patients (102 with EM and 194 with CM-MO) were enrolled. Patients with higher work difficulties score also displayed higher scores in the other WHODAS 2.0 subscales; for those with CM-MO, the differences were significant. The results of this study indicate that having more and more severe workplace problems is associated to a higher disability level in migraineurs. Further studies are needed to better understand workplace disability in different migraine forms, particularly in a qualitative way.

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.