Subjective quality of life in children with intellectual impairment – how can it be assessed?

White-Koning, Mélanie; Arnaud, Catherine; Bourdet-Loubère, Sylvie; Bazex, Hélène; Colver, Allan; Grandjean, Hélène

doi:10.1017/s0012162205000526

Cited by 84 publications

(57 citation statements)

References 35 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…There are limitations to the ''accuracy'' of parents as proxy responders. Parents may underestimate their child's subjective QOL [32]. Agreement is strongest for physical well-being, but less robust for psychosocial well-being.…”

Section: Discussionmentioning

confidence: 99%

Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy

et al. 2008

View full text Add to dashboard Cite

show abstract

Section: Discussionmentioning

confidence: 99%

Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy

et al. 2008

View full text Add to dashboard Cite

show abstract

“…16 6. Impairment: walking ability described by gross motor function 17 ; fine motor function 18 ; seizures; feeding; communication; intellectual ability 19 ; and CP type. 7.…”

Section: Methodsmentioning

confidence: 99%

Pain in young people aged 13 to 17 years with cerebral palsy: cross-sectional, multicentre European study

Parkinson

Dickinson

Arnaud

et al. 2013

Archives of Disease in Childhood

144

204

View full text Add to dashboard Cite

ObjectiveTo determine the prevalence and associations of self- and parent-reported pain in young people with cerebral palsy (CP).Design and settingCross-sectional questionnaire survey conducted at home visits in nine regions in seven European countries. Participants were 13 to 17-year-olds (n=667) drawn from population CP registers in eight regions and from multiple sources in one region. 429 could self-report; parent-reports were obtained for 657. Data were collected on: severity, frequency, site and circumstances of pain in previous week; severity of pain associated with therapy in previous year.ResultsThe estimated population prevalence of any pain in previous week was 74% (95% CI 69% to 79%) for self-reported pain and 77% (95% CI 73% to 81%) for parent-reported pain. 40% experienced leg pains, 34% reported headaches and 45% of those who received physiotherapy experienced pain during therapy. Girls reported more pain than boys (OR=2.1, 95% CI 1.5 to 3.0) and young people reported more pain if they had emotional difficulties (comparing highest and lowest quartiles: OR=3.1, 95% CI 1.7 to 5.6). Parents reported more pain in children with emotional difficulties (OR=4.2, 95% CI 2.7 to 6.6), or with more impaired walking ability.ConclusionsPain in young people with CP is highly prevalent. Because pain causes immediate distress and is associated with lower subjective well-being and reduced participation, clinicians should routinely assess pain. Clinical interventions to reduce pain should be implemented and evaluated. The efficacy of medical and therapeutic interventions causing pain should be re-examined to establish if their benefit justifies the pain and fear of pain that accompany them.

show abstract

“…Usually the patient and his/her caregiver(s) are the best judges of the severity of the impairments accompanying spasticity, as they are the only people who can assess its impact on the daily life of the patient [33]. Caregivers of children with profound impairments note changes in function far more accurately than staff workers [34]. …”

Section: Methodsmentioning

confidence: 99%

Percutaneous radiofrequency lesions adjacent to the dorsal root ganglion alleviate spasticity and pain in children with cerebral palsy: pilot study in 17 patients

Vles

Kleef

et al. 2010

BMC Neurol

View full text Add to dashboard Cite

BackgroundCerebral palsy (CP) may cause severe spasticity, requiring neurosurgical procedures. The most common neurosurgical procedures are continuous infusion of intrathecal baclofen and selective dorsal rhizotomy. Both are invasive and complex procedures. We hypothesized that a percutaneous radiofrequency lesion of the dorsal root ganglion (RF-DRG) could be a simple and safe alternative treatment. We undertook a pilot study to test this hypothesis.MethodsWe performed an RF-DRG procedure in 17 consecutive CP patients with severe hip flexor/adductor spasms accompanied by pain or care-giving difficulties. Six children were systematically evaluated at baseline, and 1 month and 6 months after treatment by means of the Modified Ashworth Scale (MAS), Gross Motor Function Measure (GMFM) and a self-made caregiver's questionnaire. Eleven subsequent children were evaluated using a Visual Analogue Scale (VAS) for spasticity, pain and ease of care.ResultsA total of 19 RF-DRG treatments were performed in 17 patients. We found a small improvement in muscle tone measured by MAS, but no effect on the GMFM scale. Despite this, the caregivers of these six treated children unanimously stated that the quality of life of their children had indeed improved after the RF-DRG. In the subsequent 11 children we found improvements in all VAS scores, in a range comparable to the conventional treatment options.ConclusionRF-DRG is a promising new treatment option for severe spasticity in CP patients, and its definitive effectiveness remains to be defined in a randomised controlled trial.

show abstract

Subjective quality of life in children with intellectual impairment – how can it be assessed?

Cited by 84 publications

References 35 publications

Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy

Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy

Pain in young people aged 13 to 17 years with cerebral palsy: cross-sectional, multicentre European study

Percutaneous radiofrequency lesions adjacent to the dorsal root ganglion alleviate spasticity and pain in children with cerebral palsy: pilot study in 17 patients

Contact Info

Product

Resources

About