Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe)

Objectives: To measure the health-related quality of life (HRQoL) of multiple sclerosis (MS) patients and their caregivers, and to assess which factors can best describe HRQoL. Methods: A cross-sectional multicenter study of nine hospitals enrolled MS patients and their caregivers who attended outpatient clinics consecutively. The instruments used were the SF-36 for patients and the SF-12 and GHQ-12 for caregivers. Classification and regression tree analysis was used to analyze the explanatory factors of HRQoL. Results: A total of 705 patients (mean age 40.4 years, median Expanded Disability Status Scale 2.5, 77.8% with relapsing-remitting MS) and 551 caregivers (mean age 45.4 years) participated in the study. MS patients had significantly lower HRQoL than in the general population (physical SF-36: 39.9; 95% confidence interval [CI]: 39.1–40.6; mental SF-36: 44.4; 95% CI: 43.5–45.3). Caregivers also presented lower HRQoL than general population, especially in its mental domain (mental SF-12: 46.4; 95% CI: 45.5–47.3). Moreover, according to GHQ-12, 27% of caregivers presented probable psychological distress. Disability and co-morbidity in patients, and co-morbidity and employment status in caregivers, were the most important explanatory factors of their HRQoL. Conclusions: Not only the HRQoL of patients with MS, but also that of their caregivers, is indeed notably affected. Caregivers’ HRQoL is close to population of chronic illness even that the patients sample has a mild clinical severity and that caregiving role is a usual task in the study context

Investigating shape representation in area V4 with HMAX: Orientation and Grating selectivities

The question of how shape is represented is of central interest to understanding visual processing in cortex. While tuning properties of the cells in early part of the ventral visual stream, thought to be responsible for object recognition in the primate, are comparatively well understood, several different theories have been proposed regarding tuning in higher visual areas, such as V4. We used the model of object recognition in cortex presented by Riesenhuber and Poggio (1999), where more complex shape tuning in higher layers is the result of combining afferent inputs tuned to simpler features, and compared the tuning properties of model units in intermediate layers to those of V4 neurons from the literature. In particular, we investigated the issue of shape representation in visual area V1 and V4 using oriented bars and various types of gratings (polar, hyperbolic, and Cartesian), as used in several physiology experiments. Our computational model was able to reproduce several physiological findings, such as the broadening distribution of the orientation bandwidths and the emergence of a bias toward non-Cartesian stimuli. Interestingly, the simulation results suggest that some V4 neurons receive input from afferents with spatially separated receptive fields, leading to experimentally testable predictions. However, the simulations also show that the stimulus set of Cartesian and non-Cartesian gratings is not sufficiently complex to probe shape tuning in higher areas, necessitating the use of more complex stimulus sets.

Sensor-based evaluation of Circadian motor behavior in people with Dementia. Development and validation of analysis strategies

[ITA]La demenza consiste nel deterioramento, spesso progressivo, dello stato cognitivo di un individuo. Chi è affetto da demenza, presenta alterazioni a livello cognitivo, comportamentale e motorio, ad esempio compiendo gesti ossessivi, ripetitivi, senza uno scopo preciso. La condizione dei pazienti affetti da demenza è valutata clinicamente tramite apposite scale e le informazioni relative al comportamento vengono raccolte intervistando chi se ne occupa, come familiari, il personale infermieristico o il medico curante. Spesso queste valutazioni si rivelano inaccurate, possono essere fortemente influenzate da considerazioni soggettive, e sono dispendiose in termini di tempo. Si ha quindi l'esigenza di disporre di metodiche oggettive per valutare il comportamento motorio dei pazienti e le sue alterazioni patologiche; i sensori inerziali indossabili potrebbero costituire una valida soluzione, per questo scopo. L'obiettivo principale della presente attività di tesi è stato definire e implementare un software per una valutazione oggettiva, basata su sensori, del pattern motorio circadiano, in pazienti affetti da demenza ricoverati in un'unità di terapia a lungo termine, che potrebbe evidenziare differenze nei sintomi della malattia che interessano il comportamento motorio, come descritto in ambito clinico. Lo scopo secondario è stato quello di verificare i cambiamenti motori pre- e post-intervento in un sottogruppo di pazienti, a seguito della somministrazione di un programma sperimentale di intervento basato su esercizi fisici. --------------- [ENG]Dementia involves deterioration, often progressive, of a person's cognitive status. Those who suffer from dementia, present alterations in cognitive and motor behavior, for example performing obsessive and repetitive gestures, without a purpose. The condition of patients suffering from dementia is clinically assessed by means of specific scales and information relating to the behavior are collected by interviewing caregivers, such as the family, nurses, or the doctor. Often it turns out that these are inaccurate assessments that may be heavily influenced by subjective evaluations and are costly in terms of time. Therefore, there is the need for objective methods to assess the patients' motor behavior and the pathological changes; wearable inertial sensors may represent a viable option, so this aim. The main objective of this thesis project was to define and implement a software for a sensor-based assessment of the circadian motor pattern in patients suffering from dementia, hospitalized in a long-term care unit, which could highlight differences in the disease symptoms affecting the motor behavior, as described in the clinical setting. The secondary objective was to verify pre- and post-intervention changes in the motor patterns of a subgroup of patients, following the administration of an experimental program of intervention based on physical exercises.

Parents' guide to the development of preschool children with disabilities : resources and services /

"May 1992."

The dolmens of Ireland, their distribution, structural characteristics, and affinities in other countries; together with the folk-lore attaching to them; supplemented by considerations on the anthropology, ethnology, and traditions of the Irish people. With four maps, and eight hundred illustrations, including two coloured plates.

Mode of access: Internet.

Domestic abuse and neglect of adults with disabilities : study and demonstration act PA 84-881 : a report to the General Assembly and the Governor.

"April 1, 1986."

Outcomes of hearing aid fitting for older people with hearing impairment and their significant others

As hearing impairment affects communication. it seems intuitive that both the person with hearing impairment and the significant other (SO) will experience effects as a result of the impairment and subsequent rehabilitation. The present study examined the effect that hearing impairment and aural rehabilitation has on the person with hearing impairment and the SO's quality of life (QOL). Ninety-three people with hearing impairment completed a measure of hearing-specific QOL (Hearing Handicap Inventory for the Elderly) and health-related QOL (Short Form-36), while 78 SOs completed a modified version of the Quantified Denver Scale and the Short Form-36. prior to and 3 months following hearing aid fitting. The results emphasize the significant impact of hearing impairment on both the person with hearing impairment and the SO. The results also demonstrate the effective role that hearing aids play in reducing Such negative effects for both parties.

Supportive care needs of people with brain tumours and their carers

Goals of work: The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Materials and methods: Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Main results: Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Conclusions: Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.