Psychosocial difficulties in patients with Parkinson's disease.

The aim of this study was to report the most frequent psychosocial difficulties (PSDs) in patients with Parkinson disease (PD), to explore the relationship between PSDs, disability and quality of life (QoL), and to address the predictors of PSDs. Patients with PD were interviewed using a protocol composed of a questionnaire investigating PSDs (PARADISE 24), QoL, disability, comorbidity, and social support questionnaires, scales on resilience, personality traits, and empathy in physician. Most frequent PSDs were reported. Spearman's correlation was used to address the relationship between PARADISE 24 and QoL and disability measures. Multiple linear regression was performed to investigate predictors of PARADISE 24. Eighty patients were enrolled: 40% women, mean age 61.2 years. The most frequent PSDs were related to cognitive and motor slowness, tiredness, sleeping, facing all things to do, depressive mood, and anxiety. PARADISE 24 were correlated with disability (ρ=0.831) and QoL (ρ=-0.685). Lower QoL, higher disability, early age at onset, and shorter disease duration were significant predictors of PSDs (adjusted R=0.762). PARADISE 24 is an easy to use questionnaire that could contribute toward describing the impact of PD on patients' life more extensively, thus helping to define more tailored interventions.

Difficulties in adjustment to multiple sclerosis: vulnerability and unpredictability of illness in the foreground.

PURPOSE: Multiple Sclerosis (MS) is a progressive neurological disease characterized by an unpredictable risk to develop relevant disability over time. Few studies focused on the core psychological features of difficulties in adjustment to MS. This qualitative study aims to explore the illness experience of people with difficulties in adjustment to MS, paying more attention to both illness representation and shifting perspective. METHOD: Nineteen persons with difficulties in adjustment to MS participated in the study and their interviews were analyzed using thematic analysis. RESULTS: Considering the Shifting Perspective Model, illness is rigidly placed in the foreground, and wellness decisively pushed in the background, with a lack of flexibility in shifting between the two perspectives. The thematic analysis delineated three main topics: illness representation; coping strategies; relationships with others. The illness representation is characterized by invalidating symptoms; unclear cause; sudden onset; unpredictable course and uncertain prognosis; severe impact on person's functioning; and low sense of internal control. Participants reported to mainly use emotion-focused coping strategies. CONCLUSIONS: Adjustment can be supported activating psychological intervention addressed to patients' illness representations and more flexibility in the shifting between illness and wellness in the foreground. Implications for Rehabilitation Adjustment to MS is influenced by illness perception. It is important to pay more attention to contents about vulnerability and unpredictability associated to MS. With regards to the Shifting Perspectives Model, difficulties in adjustment are related to the rigidity that prevents an adequate shift between the two perspectives (illness and wellness), with the predominance of the illness perspective in the foreground. Hence, it is important to assess the shifting perspectives preference and flexibility, and the contents of illness representation of a person with MS. Clinicians can support process of adjustment, activating psychological intervention addressed to patients' illness representations and promotion of a more flexibility in the shifting between illness and wellness in the foreground. The Illness Representation Model should be enriched by a social component, able to take into consideration the impact of the disease on interactions with others.

PARADISE 24 instrument: An observational study on psychosocial difficulties, quality of life, and disability levels in patients with epilepsy.

AIM: The aim of this observational study was to test the effectiveness of the PARADISE 24 instrument in describing the psychosocial difficulties (PSDs) reported by people with epilepsy, their relation with disability, and quality-of-life (QoL) levels and, overall, to explore a horizontal epidemiology methodology applied to a sample of patients with epilepsy. METHODS: A convenience sample of 80 adult patients with epilepsy was included in this cross-sectional study. Patients were interviewed using a structured protocol composed of demographic, clinical, and patient-reported outcome measures to collect PSDs associated with epilepsy. RESULTS: There were 80 patients, 40 females; mean age was 41.2years; mean disease duration was 18.7years; and mean number of AED was 2.09. Moderate severity rating according to clinicians' rating scale, low impact of comorbidities (mean: 2.36, SD: 2.97), high levels of QoL (mean: 30.00, SD: 4.4), medium levels of resilience (mean: 13.56, SD: 2.66), high levels of perceived empathy (mean: 15.05, SD: 4.74), poor or moderate perceived social support, and low levels of disability (mean: 10.85, SD: 10.05) were observed. The most frequently reported PSDs were related to tiredness (80%), emotional problems (73.75%), anxiety (68.75%), depressive mood (66.25%), and driving problems (61.25%). The EUROHIS-QOL (p=.003) had a negative significant relationship with PARADISE 24 while WHODAS-12 (p=.000) and CRS (p=.027) had a positive significant relationship with PARADISE 24. CONCLUSIONS: The PARADISE 24 permits data comparison and the creation of a complete description of a person's functioning and of all of his/her PSDs and allows better and more tailored interventions.

Psychosocial difficulties in patients with episodic migraine: a cross-sectional study.

To explore the relationships between psychosocial difficulties (PSDs), quality of life (QoL), and disability and to explore the degree to which PSDs can be predicted by demographic variables, clinical variables, and risk and protective factors. Patients with episodic migraine completed a protocol inclusive of PARADISE 24 questionnaire (the 24-item Psychosocial Difficulties Relevant to Brain Disorders questionnaire), a new questionnaire that captures PSDs relevant to brain disorders, and assessments of disability, QoL, disease severity, presence of comorbidities, social support, and clinical and risk factors (i.e., smoking and body mass index). Spearman's correlation was used to address the relationship between PARADISE 24, and the assessments of disability and QoL; multivariable linear regression analysis was carried out to address PARADISE 24 predictors. Eighty patients were enrolled (86.3 % females, mean age 44.5). PARADISE 24 was well correlated with disability (ρ = 0.787) and moderately with QoL (ρ = -0.526). The regression analysis shows that younger age, higher migraine frequency, higher comorbidities index and being a smoker were predictors of PARADISE 24 (R 2: 0.470). Addressing the burden associated with PSDs in migraineurs is important as these might be the reason why patients look for specialists in headache disorders. PARADISE 24 represents a viable way to address patients' difficulties in daily practice.

Psychosocial difficulties of individuals with multiple sclerosis: the PARADISE-24 questionnaire.

The aim of this study is to identify the most relevant psychosocial difficulties (PSDs) experienced by persons with multiple sclerosis (PwMS); to evaluate the relation between an overall level of PSDs measured with the PARADISE-24 and other variables; to assess which factors may predict PARADISE-24 overall score. Adults PwMS were consecutively enrolled and completed a battery of eight self-reported instruments (i.e. SCQ, EUROHIS-QOL 8, BRS, BFI-10, JSPE, OSS-3, WHODAS-12, PARADISE-24). A clinical evaluation was performed for each patient and the Expanded Disability Status Scale (EDSS) score was determined by neurologists. A total of 80 PwMS, mean age 41.0, 65% women, 62% married, and 76.3% working, 86.3% relapsing-remitting MS, with an EDSS median score of 1.5, took part in the study. The mean disease duration was 7.7 years. The most frequently reported PSDs involved motor and emotional functioning. Free of charge access to medicines; health treatments and family, friends and health professionals' assistance represented the most important facilitators. WHODAS-12 and EUROHIS-QOL 8 were excluded from regression because of their strong correlation with PARADISE-24. EDSS, BRS, OSS-3, and neuroticism were the main predictors of the PARADISE-24 score. Despite MS heterogeneity, a common pattern of PSDs can be observed among PwMS. The level of physical impairment and personal resilience were the main predictors of the overall level of PSDs in PwMS, with a lower but significant additional role played by social support and personality traits. Attention to PSDs and their predictors, using PARADISE-24, can help clinicians to plan tailored and personalized rehabilitation programs.

Perceived efficacy of salbutamol by persons with spinal muscular atrophy: A mixed methods study.

INTRODUCTION: The aim of this study was to assess the perceived effect of salbutamol in adult patients with spinal muscular atrophy and to evaluate the usefulness of the World Health Organization Disability Assessment Schedule II (WHODAS II) and Fatigue Severity Scale (FSS) for its measurement. METHODS: A longitudinal mixed methods study was performed. Ten patients were interviewed and completed WHODAS II and FSS questionnaires to assess disability and fatigue at 2 time-points. Inductive thematic analysis was used for qualitative data. The non-parametric Wilcoxon test was performed for quantitative analysis. RESULTS: All participants reported an improvement in their condition after salbutamol consumption. WHODAS II and FSS reliably captured changes in patients' disability and fatigue. CONCLUSIONS: The mixed methods design allowed us to identify the functional domains in which participants experienced effects of salbutamol. Patients were satisfied with the treatment as shown by decreased fatigue, improved functioning, and infrequent side effects. Muscle Nerve, 2016 Muscle Nerve 54: 843-849, 2016.

Spontaneous resolution of visual loss due to optic pathway meningioma: A case report and a review of the literature.

BACKGROUND/AIM: Meningiomas of the anterior cranial fossa are often diagnosed after impaired visual function occurrence. Some epidemiologic studies suggest an association between exogenous or endogenous hormones and meningioma risk. The aim of this study is to briefly review the literature and relate a case report. PATIENT AND METHODS: This study presents a case of a 51-year-old woman with a moderate visual loss of 6/10 and markedly constricted visual field in the right eye. A normal visual acuity and peripheral reduction of visual field in the left eye was documented. During medical interview, she reported a prolonged assumption of oral contraceptive. Her visual deterioration had progressed over the previous 3 months and was associated with occasional headache. MRI scanning showed a small optic pathway meningioma. RESULTS: After various examinations, it was decided to 'wait and see' and no therapy was administered. The patient noticed a progressive improvement in the vision in her right eye, with corresponding improvement in the bilateral visual field. CONCLUSION: The case reports on the spontaneous resolution of visual loss due to the volume reduction of the anterior visual pathway compressive intracranial meningioma after interruption of prolonged assumption of oral contraceptive and focuses on the correlation between sexual hormone pathway and intracranial meningioma.

A qualitative study on perceptions of changes reported by caregivers of patients in vegetative state and minimally conscious state: the "time gap experience".

OBJECTIVE: Our purpose was to provide a comprehensive understanding of how women informal caregivers of patients in vegetative state (VS) or minimally conscious state (MCS) describe, represent, and experience changes that occurred in their life after the acute event of their family member. METHODS: A qualitative study was conducted and fifteen women informal caregivers, mothers, or spouses of patients in VS or MCS were interviewed. RESULTS: Caregivers' narratives revealed (1) important personal and interpersonal changes and (2) difficulties while facing the complex situation and integrating past, present, and future, defined as a "time gap experience." This difficulty is expressed in two ways. First, the reduction of variety of roles into one, caregiver's role. Second, the relationship with the relative is characterised by fluctuation in the relational style between caregiver and relative; it shifts from an adult to adult interaction to an adult to child one. Another fluctuation can be observed in the mixed use of present and past tenses when caregivers speak about their relatives. CONCLUSIONS: Caregiving cause pervasive modifications in one's life. Targeted interventions aiming to empower the caregivers, to support them after the acute event in caregiving activities together with patient-focused interventions, and to promote their health should be implemented.

Linking COURAGE in Europe built environment instrument to the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY).

OBJECTIVES: The aim of the paper is to prove that the COURAGE in Europe Built Environment (CBE) instrument selected items are relevant to health and disability assessment and evaluation. STUDY DESIGN: The two lists of the CBE preliminary items--outdoor checklist and self-reported questionnaire--were linked to the World Health Organization's International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) through established linking rules. RESULTS: The pool of the CBE 162 preliminary items were linked to a total of 184 categories of ICF-CY, and belonged mainly to two out of the four of the ICF-CY components. Fifteen of the items were not linked to any category of the ICF-CY classification at all. The linking process showed that more than 90% of CBE preliminary items were linked to ICF-CY categories and more than 4/5 of them were linked to the ICF-CY component of environmental factors. CONCLUSION: The fact that most of the linked CBE preliminary items referred to few ICF categories, on one hand showed that the ICF framework encompasses a lot of different aspects related to functioning and disability; on the other hand ICF categories are not very detailed for a comprehensive description of the built environment features.

Functioning and disability in persons with epilepsy.

OBJECTIVE: This study aimed to use the International Classification of Functioning, Disability, and Health (ICF) to describe the functioning of people with epilepsy. The main questions we asked were as follows: what are the difficulties that people with epilepsy face on the body level and in daily activities? What are the most relevant environmental factors needed to describe disability in patients with epilepsy? DESIGN: Data collected using the ICF checklist are presented. RESULTS: Forty-nine patients were interviewed. In total, 63 categories, of which 30 were from the component of activities and participation, 18 were from body functions and body structures, and 14 were from environmental factors, were identified. Among body functions, sensation of pain, seeing, and emotional functions were reported most frequently. Among activities and participation, several difficulties were reported, particularly when capacity qualifiers and broad differences between capacity and performance were taken into account. Finally, environmental factor categories were mostly reported as facilitators, particularly those connected with health care. CONCLUSIONS: The description of a profile of functioning and disability can be more comprehensive with the use of the framework of the ICF, which provides a broad picture of functioning. A deeper understanding of functioning can be gained using the ICF conceptualization of disability because it incorporates all relevant aspects of functioning at the levels of the body and the person, as well as the impact of the environment.

Describing functioning, disability, and health with the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke.

OBJECTIVE: The aim of this article was to demonstrate that stroke diagnosis alone does not explain differences and variety in the functioning and disability of patients. We suggest that the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke is a useful, brief, and functional instrument to produce a functioning profile for stroke patients. DESIGN: This article reports the baseline results of a longitudinal study with 111 patients with stroke and their functioning profiles obtained with the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke. RESULTS: Most frequently reported problems in body functions were memory, muscle power functions, and attention functions. Walking activities, speaking, and understanding spoken messages are the main restricted and limited activities. Principal differences between capacity and performance (i.e., the impact of environment in performing the activities) were found in activities of self-care, such as washing oneself or dressing. Immediate family and health professionals are the main facilitators reported by patients. CONCLUSIONS: The International Classification of Functioning, Disability, and Health Brief Core Set for Stroke reports accurately on the main problematic areas of functioning and activities of daily living of people after stroke. It is a brief and useful instrument to use in clinical practice and it can be proposed as a "starting point" to plan interventions and organize services for patients after stroke.

The relationship between health-related quality-of-life and disability in patients with controlled epilepsy: a cross-sectional observational study.

OBJECTIVE: The aims this study were to assess the impact of epilepsy on the health-related quality-of-life (HRQoL) of patients and on patterns of disability and to describe the relationship between disability and HRQoL in adult patients with controlled epilepsy. DESIGN: Disability was measured with the World Health Organization Disability Assessment Schedule, second version (WHO-DAS II), whereas HRQoL was measured with the 36-item Short-Form Health Survey (SF-36). The relationships between SF-36 and WHO-DAS II were evaluated with Pearson correlation. The impact of epilepsy on disability and HRQoL was assessed by comparing WHO-DAS II and SF-36 scores with the Italian normative values and by evaluating different disability and HRQoL profiles in patients self-reporting change in health state against those reporting no change. RESULTS: Few differences between patients' and normative scores were observed. In particular, patients with a stable health state reported higher HRQoL and lower disability status, compared with those reporting an improvement or a decline in health state. The relationships between WHO-DAS II and SF-36 were significant but were generally low or moderate. CONCLUSIONS: Disability and HRQoL scores of patients with controlled epilepsy were not significantly different compared with those of the general population, in particular among stable patients. Measures of HRQoL and disability evaluate different psychosocial aspects of epilepsy and can be used jointly to evaluate outcomes.

Quality-of-life and disability in patients with stroke.

OBJECTIVE: The aim of this study was to assess the impact of stroke on health-related quality-of-life (HRQoL) and disability, the relationships between the two constructs, and to what extent these two constructs are affected when perceived health state changes. DESIGN: The World Health Organization Disability Assessment Schedule (WHO-DAS II) and the 36-Item Short-Form Health Survey (SF-36) were administered via mail to a sample of adult stroke survivors. Comparison against normative Italian values was made using one-sample t test. SF-36 and WHO-DAS II scores were compared between employed and unemployed patients and between patients self-reporting improved, unchanged, and decreased health state using analysis of variance with least significant difference post hoc test. The relationships between SF-36 and WHO-DAS II were assessed using Pearson correlation. RESULTS: A total of 111 patients were enrolled. The SF-36 and WHO-DAS II scores of stroke patients were worse in comparison with Italian normative values. Moderate to strong correlations between all scales and the summary score of WHO-DAS II and SF-36 were found: The worse the disability is, the lower the HRQoL. Patients reporting worse health status in the previous year reported higher levels of disability and lower HRQoL. Employed persons had higher HRQoL and lower disability levels. CONCLUSIONS: The generic HRQoL instrument and disability schedule used in this study demonstrated strong relationship between these two dimensions. It also gave a more detailed picture of the aspects of disability and HRQoL that are most relevant for the persons after stroke and that should be studied further in the future research.

Analysis of general population surveys with regard to comparable estimates of disability and its correlates across selected European surveys.

This article presents a methodology developed by the Multidisciplinary Research on Health and Disability in Europe project researchers for the retrieval of information about disability using the conceptual framework of the International Classification of Functioning, Disability and Health. A comprehensive review and analysis of European surveys was performed and it is presented here briefly. Recommendations and guidelines for future statistical studies and development of disability surveys are provided. The methodology proposed shows the utility and feasibility of the ICF in research.

Multidisciplinary research network on health and disability training on the International Classification of Functioning, Disability and Health, Ethics, and Human Rights.

This article provides a brief description of a training course in International Classification of Functioning (ICF), Disability and Health, Ethics and Human Rights done in the field of the European MURINET project. This course, in its three annual editions, was the product of a joint collaborative work among the Neurological Institute Carlo Besta, the Catholic University, and the National Council of Disability. The training program was formulated to provide knowledge and skills in the field of disability and in the use of ICF. The main result is that a new generation of European researchers was trained. Thanks to this specialized training program, they are now able to conduct and manage research on health and disability, applying the new concept of health and disability based on the ICF biopsychosocial model.

The selection of items for the preliminary version of the COURAGE in Europe built environment instrument.

The built environment can increase or decrease disability through its impact on mobility or accessibility to infrastructures, and through its relation to social environment. There is a need for the development of a tool which allows to assess built environment in both objective and self-reported manner, contemplating also issues of accessibility and disability, and that allows data comparability across countries and populations. The present paper describes the preliminary process of the development of a new built environment instrument. It describes the process of the selection, creation and categorisation of a pool of items from the 31 instruments resulting from the UDHP Project. A pool of items was created and was used to produce two lists: the outdoor checklist, and the self-reported questionnaire. These two lists formed the basis of the COURAGE in Europe built environment instrument. The outcome of this selection and categorisation process was the creation of two lists of items, that are meant to measure the interaction between the built environment and aspects of health and disability in ageing.

Systematic literature review on ICF from 2001 to 2009: its use, implementation and operationalisation.

PURPOSE: To present a systematic literature review on the state of the art of the utilisation of the International Classification of Functioning, Disability and Health (ICF) since its release in 2001. METHOD: The search was conducted through EMBASE, MEDLINE and PsychInfo covering the period between 2001 and December 2009. Papers were included if ICF was mentioned in title or abstract. Papers focussing on the ICF-CY and clinical research on children and youth only were excluded. Papers were assigned to six different groups covering the wide scenario of ICF application. RESULTS: A total of 672 papers, coming from 34 countries and 211 different journals, were included in the analysis. The majority of publications (30.8%) were conceptual papers or papers reporting clinical and rehabilitation studies (25.9%). One-third of the papers were published in 2008 and 2009. CONCLUSIONS: The ICF contributed to the development of research on functioning and on disability in clinical, rehabilitation as well as in several other contexts, such as disability eligibility and employment. Diffusion of ICF research and use in a great variety of fields and scientific journals is a proof that a cultural change and a new conceptualisation of functioning and disability is happening.

ICF in neurology: functioning and disability in patients with migraine, myasthenia gravis and Parkinson's disease.

PURPOSE: To report and compare functional features of patients with migraine, myasthenia gravis (MG) and Parkinson's disease (PD) with the International Classification of Functioning, Disability and Health (ICF). METHOD: Adult patients with migraine, MG and PD were enrolled and the ICF checklist administered. Count-based indexes were calculated for each ICF chapter and domain. Indexes were compared across conditions by means of ANOVA; relationships between ICF domains were evaluated using Spearman's correlation; group based on disability status were defined through cluster analysis and compared with disease groups using chi(2) test. Finally, most prevalent ICF categories were identified. RESULTS: A total of 300 patients were enrolled and specific differences in BF, BS, A&P and EF indexes are reported. Spearman's correlations reported moderate relationships between BF and A&P indexes, whereas the correlation between A&P and EF is lower. Cluster analysis and chi(2) test show that patients with Migraine and MG are more likely to report moderate and low disability, whereas patients with PD are more likely to report moderate or severe disability. A total of 60 ICF relevant categories, mostly from A&P, were identified. CONCLUSIONS: Our study provided a description of functioning and disability domains in migraine, MG and PD and enabled to report the impact of EF in determining the actual disability experience.