Abstract:
AIM:There are many misconceptions about what constitutes 'quality of life' (QoL). It is often difficult for researchers and clinicians to determine which instruments will be most appropriate to their purpose. The aim of the current paper is to describe QoL instruments for children and adolescents with neurodisabilities against criteria that we think are important when choosing or developing a QoL instrument. METHOD:QoL instruments for children and adolescents with neurodisabilities were reviewed and described based on their purpose, conceptual focus, origin of domains and items, opportunity for self report, clarity (lack of ambiguity), potential threat to self-esteem, cognitive or emotional burden, number of items and time to complete, and psychometric properties. RESULTS:Several generic and condition-specific instruments were identified for administration to children and adolescents with neurodisabilities - cerebral palsy, epilepsy and spina bifida, and hydrocephalus. Many have parent-proxy and self-report versions and adequate reliability and validity. However, they were often developed with minimal involvement from families, focus on functioning rather than well-being, and have items that may produce emotional upset. INTERPRETATION:As well as ensuring that a QoL instrument has sound psychometric properties, researchers and clinicians should understand how an instrument's theoretical focus will have influenced domains, items, and scoring.
journal_name
Dev Med Child Neuroljournal_title
Developmental medicine and child neurologyauthors
Waters E,Davis E,Ronen GM,Rosenbaum P,Livingston M,Saigal Sdoi
10.1111/j.1469-8749.2009.03324.xsubject
Has Abstractpub_date
2009-08-01 00:00:00pages
660-9issue
8eissn
0012-1622issn
1469-8749pii
DMCN3324journal_volume
51pub_type
杂志文章,评审abstract::A child with lobar holoprosencephaly presented with spastic diplegia and mild mental retardation, compounded by attention deficits and hyperactivity. His facial features were normal, and except for borderline microcephaly, there were no other predictors of holoprosencephaly. This patient represents the mild end of the...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1988.tb14565.x
更新日期:1988-06-01 00:00:00
abstract::Blood and saliva were collected from 48 children, aged three to 17 years, before a morning dose of carbamazepine and then at three, six and eight hours afterward. There was no significant difference in the ratio of 10-11 epoxy-carbamazepine to total carbamazepine for children on carbamazepine alone (0.18) and those on...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1986.tb03922.x
更新日期:1986-12-01 00:00:00
abstract::Analysis of nine randomised controlled trials of prophylactic vitamin E supplementation in very low-birthweight infants (less than 1500g) showed no statistically significant reduction in the incidence of acute retinopathy of prematurity. There was a significant reduction (49 per cent) in the incidence of intraventricu...
journal_title:Developmental medicine and child neurology
pub_type: 临床试验,杂志文章,随机对照试验
doi:10.1111/j.1469-8749.1990.tb16963.x
更新日期:1990-05-01 00:00:00
abstract:AIM:In a prospective, longitudinal study, we investigated the influence of the severity of motor impairment on changes in body characteristics in children with moderate-to-severe cerebral palsy (CP). METHOD:Twenty-six single children and adolescents (15 females, 11 males; mean age 10y 6mo, SD 3y 3mo) with spastic (qua...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.2009.03342.x
更新日期:2009-12-01 00:00:00
abstract::Sensory and motor function were evaluated in 84 children and adolescents with epilepsy but not additional neuroimpairments such as mental retardation or cerebral palsy. The influence of sex, age, age at onset of epilepsy, duration, seizure type and frequency and medication was analysed. The Bruininks-Oseretsky Test of...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1997.tb07387.x
更新日期:1997-02-01 00:00:00
abstract::The relation between neurodevelopmental status at one and eight years of age was investigated in a cohort of 207 infants born between 1979 and 1982 at < 33 weeks of gestation. The probability of a major disabling impairment at eight years was only 1 per cent among 164 children with normal neurodevelopment at one year,...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1994.tb11808.x
更新日期:1994-12-01 00:00:00
abstract::Gliomatosis cerebri is the unifying term used when diffuse glial infiltration occurs throughout the cerebral hemispheres. The very few cases reported in children have presented with intractable epilepsy, corticospinal tract deficits, unilateral tremor, headaches, and developmental delay. Antemortem diagnosis is diffic...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1017/s0012162201000214
更新日期:2001-02-01 00:00:00
abstract:AIM:Our aim was to contribute new findings related to the pre-regressional verbal development of females with a variant of Rett syndrome (RTT) as the loss of spoken language is one of the key clinical features of RTT, and it would be of particular interest to study the early speech-language development of females who a...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.2012.04123.x
更新日期:2012-05-01 00:00:00
abstract:AIM:Difficult-to-treat epilepsies and attention-deficit-hyperactivity disorder (ADHD) often co-occur. Because of concerns about the use of stimulants in children with this comorbidity, the impact of ADHD treatment on seizure frequency and severity is not known. This pilot study evaluated the safety and efficacy of meth...
journal_title:Developmental medicine and child neurology
pub_type: 临床试验,杂志文章
doi:10.1111/dmcn.12121
更新日期:2013-07-01 00:00:00
abstract::In a previous study we developed a cognitive assessment battery called the Pediatric Powered Wheelchair Screening Test (PPWST) to help clinicians determine a young child's readiness to drive a powered wheelchair. The current multicenter study sought to determine: (1) whether the PPWST is appropriate for use in a popul...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1017/s0012162204000775
更新日期:2004-07-01 00:00:00
abstract::A large New England family with autosomal dominant familial spastic paraplegia (ADFSP) is described. In a pedigree of 173 family members, 71 affected individuals were identified. 16 cases examined by the authors are described with regard to the natural history of ADFSP in this family, and a staging system for followin...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1990.tb08530.x
更新日期:1990-12-01 00:00:00
abstract::Electromyographic and kinematic data were collected during treadmill locomotion by normal infants and infants with cerebral palsy. Locomotor patterns of the infants with cerebral palsy were similar to those of normal infants during the stage of supported locomotion, but as they matured, some of the characteristics of ...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1991.tb14926.x
更新日期:1991-07-01 00:00:00
abstract::Progressive calcification of the brain and the spinal cord at early infantile onset was observed in two siblings. They showed growth failure, psychomotor deterioration, deafness, vestibular dysfunction, microcytic hypochromic anemia, abnormal ratios of lymphocyte subpopulations, and slightly decreased bicarbonate on b...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1997.tb07410.x
更新日期:1997-03-01 00:00:00
abstract::Self-injury is a defining feature of lesch-nyhan disease (LND) but does not occur in the less severely affected Lesch-Nyhan variants (LNV). The aim of this study was to quantify behavioral and emotional abnormalities in LND and LNV. Thirty-nine informants rated 22 patients with LND (21 males, 1 female), 11 males with ...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1017/S0012162205001374
更新日期:2005-10-01 00:00:00
abstract::Parents and paediatric neurologists need information on the long-term social prognosis of children with cerebral palsy (CP). No large population-based study has been performed on this topic. On 31 December 1999, to find predictors in childhood of subsequent education and employment, 819 participants with CP born betwe...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1017/s0012162205001015
更新日期:2005-08-01 00:00:00
abstract::Cisapride was used to treat gastro-oesophageal reflux in seven children with neurodevelopmental disorders and in 15 children who were neurologically normal. 24-hour lower-oesophageal pH monitoring was carried out before and after treatment. The neurologically normal group had a statistically significant decrease after...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1990.tb08547.x
更新日期:1990-07-01 00:00:00
abstract::One hundred and forty-three healthy children between six months and two years of age were studied to determine the effect of food texture on chewing duration. Texture determined very strongly how long a bite of food was chewed, with solids taking longest, followed by viscous food and purée, respectively. As children g...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1991.tb14786.x
更新日期:1991-01-01 00:00:00
abstract:AIM:The aim of this study was to determine the reliability, validity, and optimal placement of pedometers in children with cerebral palsy (CP) who ambulate without aids. METHOD:Seventeen participants aged 7 to 17 years with CP (eight males, nine females; mean age 12y 4mo; SD 3y 2mo), who could ambulate without aids, w...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/dmcn.12181
更新日期:2013-09-01 00:00:00
abstract::Individuals with congenital adrenal hyperplasia (CAH) provide a test population for the theory that elevated testosterone levels alter prenatal brain development and increase the risk of learning disabilities. Eleven subjects with CAH, five of their non-CAH siblings and 16 matched control subjects participated in two ...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1996.tb15100.x
更新日期:1996-05-01 00:00:00
abstract::The purpose of this study was to estimate striatal dopamine (D2) receptor availability in non-drug treated children with attention-deficit-hyperactivity disorder (ADHD) before and after methylphenidate therapy, and to examine correlations between severity of symptoms and response rates to stimulant medication with lev...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1017/s0012162201001384
更新日期:2001-11-01 00:00:00
abstract::Although its cause, jaundice in the newborn, is extremely common, the disabling neurological disorder kernicterus is very rare. Kernicterus may be prevented by selecting those infants who are at risk of extreme jaundice or who may be particularly vulnerable to bilirubin neurotoxicity. Because the tools for achieving t...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章,评审
doi:10.1111/j.1469-8749.2011.04059.x
更新日期:2011-09-01 00:00:00
abstract:AIM:To assess the sensitivity and specificity of automated movement recognition in predicting motor impairment in high-risk infants. METHOD:We searched MEDLINE, Embase, PsycINFO, CINAHL, Web of Science, and Scopus databases and identified additional studies from the references of relevant studies. We included studies ...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章,评审
doi:10.1111/dmcn.14800
更新日期:2021-01-09 00:00:00
abstract::Central ventilatory dysfunction (CVD) is a significant complication of myelodysplasia with Arnold-Chiari type II defect. The records of 616 patients with myelodysplasia were reviewed and CVD was documented in 35 cases (5.7 per cent): it was the single most common cause of death in this population. There was no signifi...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1989.tb04005.x
更新日期:1989-06-01 00:00:00
abstract:AIM:The prevalence of severely symptomatic deformities of the first metatarsophalangeal (MTP) joint in adolescents with cerebral palsy (CP) requiring arthrodesis is unknown. Recent literature regarding these deformities is limited. We studied the presentation of severe, symptomatic deformities of the first ray in a lar...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/dmcn.13724
更新日期:2018-06-01 00:00:00
abstract::Monozygotic twin boys with fragile X syndrome underwent thorough genetic, psychiatric, neurological, and language evaluations at 10 years of age. They both demonstrated physical features, speech and language difficulties, social problems, and attentional deficits that characterize the behavioural phenotype of fragile ...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1017/s0012162200001420
更新日期:2000-11-01 00:00:00
abstract:AIM:To determine the prevalence of long-term mechanical insufflation-exsufflation (MI-E) and concomitant mechanical ventilation in children with neurological conditions, with reported reasons behind the initiation of treatment. METHOD:This was a population-based, cross-sectional study using Norwegian national registri...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/dmcn.14797
更新日期:2021-01-03 00:00:00
abstract:AIM:To simultaneously evaluate long-term outcomes of children with drug-resistant epilepsy (DRE) across multiple cognitive domains and compare the characteristics of participants sharing a similar cognitive profile. METHOD:Participants were adolescents and young adults (AYAs) diagnosed with DRE in childhood, who compl...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/dmcn.14815
更新日期:2021-01-26 00:00:00
abstract:AIM:To estimate the prevalence of mental illness in parents of children with cerebral palsy (CP). METHOD:This is a systematic review that follows the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols in the search for observational studies determining the prevalence of depression, anxiety, an...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/dmcn.14321
更新日期:2020-02-01 00:00:00
abstract::Periventricular nodular heterotopia (PNH) is a rare neuronal migration disorder in which immature neurons fail to undergo a directed migration from the ventricular and subventricular zones to the cerebral cortex. Classic PNH occurs predominantly in females and is associated with periods of epilepsy and near-normal int...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.2007.00219.x
更新日期:2007-03-01 00:00:00
abstract::The developmental level and nutritional status of a group of 17 children aged between six and 24 months who were admitted to hospital with severe protein-energy malnutrition were studied from admission to hospital until 36 months after returning home. They were compared with a group of 14 adequately nourished children...
journal_title:Developmental medicine and child neurology
pub_type: 杂志文章
doi:10.1111/j.1469-8749.1982.tb13624.x
更新日期:1982-06-01 00:00:00