Purpose: To underline the importance of Environmental Factors for reducing Disability and to demonstrate the complex condition of life, especially in terms of social inclusion and participation for children and adolescents affected by brain tumour.
Method: An observational study applying the ICF version for Children and Youth (ICF-CY), the quality of life KIDSCREEN questionnaires and the Vineland assessment was performed. Age-specific ICF-CY Questionnaires were used to interview children at three time-points.
Results: Twenty-nine children were enrolled. Social life and relationships were crucial for defining children's disability level: formal and informal relationships showed to be very relevant to improve functioning (presence of facilitators in terms of more that 20% of cases). The severity of the disease makes the attention deeply focussed on treatment, neglecting other very important aspects in children's or adolescents' life such as their participation in life.
Conclusions: The project highlighted some relevant issues about functioning and disability of these patients, in light of ICF's Biopsychosocial model of disability. Different rehabilitation projects are necessary for children and adolescents living after brain tumour. Considering treatment and the severity of tumour is very important to define pathways that should also include social and interpersonal aspects.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.3109/09638280903317856 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Cross-cultural adaptation, reliability, validity and responsiveness of Urdu version of hip disability and osteoarthritis outcome score.
Disabil Rehabil
December 2024
Margalla Institute of Health Sciences, Rawalpindi, Pakistan.
Purpose: To linguistically and cross-culturally translate Hip Disability and Osteoarthritis Outcome Score into Urdu language (HOOS-U), and test its psychometric properties among patients with hip pain.
Materials And Methods: Translation and cross-cultural adaptation of English version of HOOS were carried out following international guidelines. Psychometric testing included reliability (internal consistency and test-retest reliability), validity (content and construct validity) and responsiveness.
Real-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study.
Ann Med
December 2025
Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.
Purpose: This study describes the experience of parents of children with developmental and epileptic encephalopathies (DEE) and how the disease impacts their daily lives.
Materials And Methods: A descriptive qualitative study was conducted using purposeful sampling. Twenty-one parents of children with DEEs caused by SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included.
Musculoskeletal ultrasonography versus conventional radiography: Correlation with DAS28 and MDHAQ scores in early rheumatoid arthritis.
J Int Med Res
December 2024
Department of Rheumatology and Rehabilitation, RinggoldID:63527 Cairo University, Cairo, Egypt.
Objectives: To compare the value of musculoskeletal ultrasound (MSUS) with conventional radiography in the detection of patients with early rheumatoid arthritis (RA) and to correlate the sonographic findings with disease activity, and functional disability scores.
Methods: Patients >18 years of age with RA ≤2 years who satisfied the 2010 EULAR/ACR classification criteria for rheumatoid arthritis and disease activity score 28 (DAS28) >2.6, were enrolled.
[Safety and efficacy of Relatox in comparison with Dysport in the treatment of focal spasticity of the upper limb in patients after stroke and traumatic brain injury (results of a prospective simple blind randomized comparative study in parallel groups)].
Zh Nevrol Psikhiatr Im S S Korsakova
December 2024
GUTA-CLINIC LLC, Moscow, Russia.
Objective: Evaluation of the safety and effectiveness of Relatox, botulinum toxin type A in patients with focal spasticity (FS) of the upper limb as a result of a cerebrovascular accident (CVA) or traumatic brain injury (TBI).
Material And Methods: A multicenter, prospective, single-blinded, randomized, comparative clinical study included 210 patients of both sexes aged 18-75 years after moderate to severe TBI and CVA in seven sites in the Russian Federation. The patients were randomized into two groups.
From spastic paraplegia to infantile neurodegenerative disorder: Expanding the phenotypic spectrum associated with biallelic SPAST variants.
Eur J Neurol
January 2025
Service de Génétique Médicale, CHU Bordeaux, Bordeaux, France.
Purpose: Heterozygous pathogenic variants in SPAST are known to cause Hereditary Spastic Paraplegia 4 (SPG4), the most common form of HSP, characterized by progressive bilateral lower limbs spasticity with frequent sphincter disorders. However, there are very few descriptions in the literature of patients carrying biallelic variants in SPAST.
Methods: Targeted Sanger sequencing, panel sequencing and exome sequencing were used to identify the genetic causes in 9 patients from 6 unrelated families with symptoms of HSP or infantile neurodegenerative disorder.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!