The perception of disability in cerebral palsy: a cross-sectional study using the WHODAS 2.0.

This observational study aims to describe the level of perceived disability in Cerebral Palsy (CP). We described the perception of adults by using the interviewer-administered version of the WHO disability assessment schedule (WHODAS 2.0). In case of intellectual disability (ID), the proxy-administered version was used, and a caregiver was asked to report the difficulties experienced by the patient; 199 patients were enrolled. The level of perceived disability was higher when referred to patients with ID (proxy report) than when referred to patients without ID (p < .001). For all patients, the level of perceived disability varied depending on the severity and the localization of motor impairment (both p < .001). No differences were observed based on the type of motor impairment. The perceived disability was correlated with age only for patients with no ID (p < .05). The WHODAS 2.0 may be a useful tool to explore the perception of disability in CP.

Psychiatric symptoms in adult patients with cerebral palsy: A cohort study.

Background: Patients with cerebral palsy (CP) have an increased risk of developing mental health disorders. Aims: This paper is aimed to investigate the occurrence of psychiatric symptoms in adults with CP and to explore the relation between clinical and psychosocial variables. Methods and procedures: We included 199 adults with a diagnosis of CP. The chi-square and the Mann-Whitney U tests were used to compare clinical and psychosocial variables, the level of perceived disability, and the type of observed parental style in patients with and without psychiatric symptoms. Logistic regression analysis was used to identify variables that could predict the occurrence of mental health disorders. Outcome and results: Anxiety and psychosis were the most represented disorders. Age, living status, assumption of drugs, motor, manual, and global impairment were significantly different between patients with and without psychiatric symptoms. Similarly, a different parental style was observed between the two groups. Logistic regression indicated that living status, prescribed drugs, parental style, and the perceived disability in getting along with others predicted the occurrence of psychiatric symptoms. Conclusions and implications: Results suggest that patients with and without psychiatric symptoms have different clinical and psychosocial characteristics. Some variables should be considered as potentially affecting the mental health of patients with CP.

Trends observed in bilateral cerebral palsy during a thirty-year period: A cohort study with an ICF-based overview.

BACKGROUND: To describe trends observed across thirty years in demographic and clinical characteristics and rehabilitation of patients with bilateral cerebral palsy. METHODS: This retrospective study includes 464 (261 M and 203 F) inpatients with bilateral cerebral palsy, born from 1967 to 1997 and discharged from an outpatient rehabilitative facility from 1985 to 2015. Data concerning the health profile were collected from medical reports and organized in the domains of Body Functions and Structure; Activity and participation and Personal and Environmental factors as proposed in the International Classification of Functioning Disability and Health (ICF). The trend observed over the three birth decades was discussed. RESULTS: The duration of the rehabilitative treatment decreased across decades approximately by two years per decade (from an initial 16.2 yrs to 12.3 yrs). Across the decades the rate of quadriplegia decreased, whereas rates of diplegia increased; spasticity was the prevalent observed motor type for all decades. The most frequent musculoskeletal disorder involved the middle inferior part of the body; among comorbidities a steady decrease in psychiatric disorders was found. With respect to the first decade a slight improvement was observed in the gross motor functioning and in the hand dexterity. No particular trend was observed concerning communication abilities. An increase in the use of pharmacological and surgical treatments for motor symptoms was observed. CONCLUSION: This study presents and describes the functioning of a large sample of Italian patients with bilateral CP on the basis of the ICF framework and it discussed the trend observed across decades.

Becoming a young adult with cerebral palsy.

AIMS: This paper aims to describe the functioning profile of a clinical sample of patients with Cerebral Palsy at the time of transition. METHODS AND PROCEDURE: For this retrospective observational study, we considered data concerning 389 patients born from 1967 to 1997 with a diagnosis of CP and discharged at the age of 18 ±â€¯3 from "La Nostra Famiglia" Children Care Centres. We reported data concerning: identifiable risk factors, the type of CP, the level of motor, manual and communication abilities, the occurrence of associated impairments and environmental factors, and examine the trends over the decades. OUTCOME AND RESULTS: The disorder was mainly bilateral (86%): 57% of patients had quadriplegia and 43% had diplegia. Most of patients had a spastic disorder (86%). Comorbidities were frequent, mainly intellectual developmental disorder (63.5%). One fifth of patients showed a severe impairment of motor, manual and communicative skills in addition to a severe intellectual development disorder. Over decades, the outcome as expressed by the motor functioning profile improved but the outcome as expressed by the global functioning profile worsened because of the growing number of severe multi-disabilities. CONCLUSION AND IMPLICATION: Knowledge about the functioning profile of young adults with cerebral palsy can support health services in the provision of developmentally appropriate care.

Agenesis of the corpus callosum: clinical and genetic study in 63 young patients.

This study reports the clinical features of 63 patients with agenesis of the corpus callosum who received in-depth genetic, clinical, and laboratory testing with the aim to contribute to a better description of the large spectrum of associated malformations and to assist clinicians in the diagnosis. Thirty patients manifested complete agenesis and 33 patients displayed partial agenesis. Other associated nervous system malformations were detected in 14 patients with partial agenesis of the corpus callosum (mostly correlated to posterior fossa malformations) and in 10 patients with complete agenesis (more frequently associated with malformations of cortical development). Involvement of organs and apparatus other than the nervous system was present in 41 patients (ascribed to known syndromes in 21 cases). Cytogenetically detectable chromosomal abnormalities (7 patients) and subtelomeric rearrangements (3 patients) were found. Neuromotor skills were impaired in almost all cases (58/63). Mental retardation of different severity was present in 52 cases, whereas 2 patients were borderline and 9 patients had normal intelligence quotient. This study demonstrates that there is no unique prognosis for agenesis of the corpus callosum as this condition is associated with a broad range of clinical manifestations, oscillating between the limits of the norm and severe psychomotor delay.

International Classification of Functioning, Disability and Health in a cohort of children with cognitive, motor, and complex disabilities.

The recently endorsed World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) is proposed as a new tool to describe human functioning and health in a multiprofessional approach for individuals of all ages. Its application to paediatric neurorehabilitation may be of great help, especially in children with complex disabilities. However, experience with its application in this field is still limited. We tested the application of ICF in 40 children (26 males, 14 females; age range 3 to 18 years; mean age 11 years 1 month, SD 5 years 3 months) with various types and degrees of disability. We tested the applicability and reliability of the classification, and studied its correlation with well-established measures of functioning (Verbal IQ; gross motor function measure; functional independence measure). The ICF proved to be applicable and reliable, and strongly correlated with established scales. However, several of the Activity and Participation components do not fully capture the developmental nature of many abilities of children. Our study, although acknowledging the universal application of the ICF, and the ICF's value as a clinical tool, calls for its specific adaptation to accommodate better the peculiarities of child functioning and disability.