Cerebral palsy information system with an approach to information architecture: a systematic review

Abstract

BackgroundLong-term complications and high costs of cerebral palsy (CP) as well as inconsistency in data related to this disease reveal the need for extensive planning to obtain accurate and complete data for the effective management of patients.ObjectiveThe present study reviews the information architecture of CP information system.MethodThe relevant articles published from early 1988 to 31 July 2018 were extracted through searching PubMed, Scopus, Cochran, Web of Science and Embase databases conducted independently by two researchers.ResultsA total of 39 articles on CP information system were reviewed. Hospitals, rehabilitation centres and outpatient clinics were found to be the main organisations in charge of generating CP data. Each CP database used several data sources, with hospitals serving as the most important sources of information and the main generators of data. The main CP datasets were categorised into four groups of demographic data, diagnosis, motor function and visual impairment. The majority of data standards were related to the use of the International Classification of Functioning, Disability and Health and the Gross Motor Function Classification System. Finally, accuracy, completeness and consistency were the criteria employed in data quality control.ConclusionDeveloping a robust CP information system requires deploying the principles of information architecture when developing the system, as these can improve data structure and content of CP system, as well as data quality and data sharing.

A cerebralis paresis előfordulása és a betegdokumentáció minőségi vizsgálata a Semmelweis Egyetem klinikáin

“…Jelenleg számos CP-regiszter működik világszerte, melyek többnyire egységes CP-osztályozási módszert követnek, a WHO 2004. évi ICF-(International Classification of Function, Health, and Disability) ajánlása alapján [12]. A súlyossági besorolás szempontjából az okozott korlátozottság a mérvadó, melyre a legelterjedtebb pontozási skála a vizsgálatunkban is használt GMFCS [13].…”

Reliability of the Gross Motor Function Measure-66 scale in the evaluation of children with cerebral palsy: validation for Colombia

“…Conversely, recent studies in the United States, Taiwan, and Egypt have found rates above 3 per 1000 1,2 . Rates in low-and middle-income countries are uncertain; they appear to be higher, with projections of 4.4 to 10 cases per 1000 1 , probably due to higher burden of infectious diseases and deficiencies in prenatal and perinatal care 6,7 .…”

“…Although the sequelae of this disorder affect individuals throughout their lives, most research efforts and management strategies focus on the needs of the pediatric population, their clinical management, and the prevention of secondary problems 1,3,4 . Resources must be justified in assessing needs, among which are those derived from developmental motor disorders, as they acquire relevance due to the negative impact on the quality of life of children, their families, and the community, and the disability burden they generate for health systems 1,[5][6][7] .…”

Estimation of Gross Motor Functions in Children with Cerebral Palsy Using Zebris FDM-T Treadmill

“…Cerebral palsy (CP) is a group of permanent disorders of the development of movement and posture that are considered one of the most frequent causes of non-progressive motor disability in children [1,2]. Symptoms of CP vary from person to person, ranging from mild to very severe movement difficulties [1,2].…”

“…Cerebral palsy (CP) is a group of permanent disorders of the development of movement and posture that are considered one of the most frequent causes of non-progressive motor disability in children [1,2]. Symptoms of CP vary from person to person, ranging from mild to very severe movement difficulties [1,2]. CP is a very diverse problem accompanied by multiple comorbidities such as communication impairment, cognitive impairment, visual and hearing impairment, reduced alertness, epilepsy, seizures, musculoskeletal problems, feeding difficulties, behavioral disorders, mental retardation, and even sleep disorders [1][2][3][4][5].…”