Health-related quality of life is an important patient-reported outcome used in intervention trials and for monitoring the consequences of health status on physical, mental, and social domains. Parkinson's disease is a complex disorder that strongly affects patients' quality of life. Several health-related quality of life tools have been used in Parkinson's disease. A Movement Disorder Society Task Force was commissioned to rate the psychometric quality of available health-related quality of life scales as applied to Parkinson's disease. Following the methodology adopted by previous work of the Movement Disorder Society Task Force, a review of generic and specific health-related quality of life scales applied in studies on Parkinson's disease was completed. Considering the scales from 3 perspectives-use in Parkinson's disease, use by multiple research groups, and clinimetric properties-a final classification as "recommended," "suggested," or "listed" was applied to each reviewed instrument. Four generic scales (EuroQoL, Nottingham Health Profile, 36-Item Short-Form Health Survey, and Sickness Impact Profile) and 5 specific scales (39-Item Parkinson's Disease Questionnaire, Parkinson's Disease Questionnaire Short Form, Parkinson's Disease Quality of Life Questionnaire, Parkinson's Impact Scale, and Scales for Outcomes in Parkinson's Disease-Psychosocial) reached the level of "recommended." The 39-item Parkinson's Disease Questionnaire is the most thoroughly tested and applied questionnaire. Three other generic measures (Quality of Life Questionnaire 15D, Schedule for the Evaluation of Individual Quality of Life-Direct Weighting, and World Health Organization Quality of Life Assessment Short Version) and the specific Parkinson's Disease Quality of Life Scale are "suggested." With a little additional effort in completing the stipulated requirements, they could reach the "recommended" level. At present there is a wide variety of health-related quality of life measures for application in the Parkinson's disease setting, and the task force does not recommend the development of a new scale. Selection of the most appropriate instrument for a particular objective requires consideration of the characteristics of each scale and the goals of the assessment.
ABBREVIATIONS
MNDMinor neurological dysfunction MABC-2 Movement Assessment Battery for Children -2nd edition AIM To elucidate the relation between motor impairment and other developmental deficits in very preterm-born children without disabling cerebral palsy and term-born comparison children at 5 years of (corrected) age.METHOD In a prospective cohort study, 165 children (81 very preterm-born and 84 term-born)were assessed with the Movement Assessment Battery for Children -2nd edition, Touwen's neurological examination, the Wechsler Preschool and Primary Scale of Intelligence, processing speed and visuomotor coordination tasks of the Amsterdam Neuropsychological Tasks, and the Strengths and Difficulties Questionnaire.RESULTS Motor impairment (≤15th centile) occurred in 32% of the very preterm-born children compared with 11% of their term-born peers (p=0.001). Of the very preterm-born children with motor impairment, 58% had complex minor neurological dysfunctions, 54% had low IQ, 69% had slow processing speed, 58% had visuomotor coordination problems, and 27%, 50%, and 46% had conduct, emotional, and hyperactivity problems respectively. Neurological outcome (odds ratio [OR]=41.7, 95% confidence intervals [CI] 7.5-232.5) and Full-scale IQ (OR=7.3, 95% CI 1.9-27.3) were significantly and independently associated with motor impairment. Processing speed (OR=4.6, 95% CI 1.8-11.6) and attention (OR=3.2, 95% CI 1.3-7.9) were additional variables associated with impaired manual dexterity. These four developmental deficits mediated the relation between preterm birth and motor impairment.INTERPRETATION Complex minor neurological dysfunctions, low IQ, slow processing speed, and hyperactivity/inattention should be taken into account when very preterm-born children are referred for motor impairment.
The Infant Behavioral Assessment and Intervention Program led to long-term developmental improvements in the intervention group, especially in infants with BPD.
The SCOPA-Cognition is a reliable and valid test to evaluate cognitive functioning in Parkinson's disease and is widely used in clinical and research settings. Recently, the Movement Disorder Society introduced criteria for Parkinson's disease dementia. The objective of the present study was to use these criteria to determine SCOPA-Cognition cutoffs for maximum accuracy, screening, and diagnosing of Parkinson's disease dementia. A total of 282 patients with Parkinson's disease were assessed with the SCOPA-Cognition and the Movement Disorder Society's Parkinson's disease dementia criteria. From the 275 patients with a complete assessment of the dementia criteria, 12% (n = 32) fulfilled the criteria. Data from 268 patients with complete assessments of both the dementia criteria and the SCOPA-Cognition were used to determine cutoffs for maximum accuracy, screening, and diagnosing of Parkinson's disease dementia. The area under the curve was 0.91 (95% confidence interval, 0.85-0.97), showing a strong association between the dementia criteria and the SCOPA-Cognition. The cutoff for maximum accuracy was 22/23, based on the highest sum of sensitivity (0.80) and specificity (0.87), with positive and negative predictive values of 0.43 and 0.97, respectively. The optimal screening cutoff was 24/25, and the optimal diagnostic cutoff was 17/18. Using the recently published Parkinson's disease dementia criteria as a reference, the current study presents SCOPA-Cognition cutoffs for maximum accuracy, screening, and diagnosing of Parkinson's disease dementia. The availability of SCOPA-Cognition cutoffs for Parkinson's disease dementia may contribute to the scale's usefulness and promote its further use in both clinical and research settings.
Post‐discharge preventive intervention programmes with involvement of the parent may support the resilience and developmental outcomes of infants born very preterm. Randomized controlled trials of home‐based family‐centred intervention programmes in very preterm infants that aimed to improve cognitive outcome, at least at age two, were selected and updated on the basis of a recent systematic review to compare their content and effect over time to form the basis of a narrative review. Six programmes were included in this narrative review. Four of the six programmes led to improved child cognitive and/or motor development. Two programmes, which focused primarily on responsive parenting and development, demonstrated improved cognitive outcome up till 5 years after completion of the programme. The programmes that also focused on maternal anxiety remediation led to improved maternal mental well‐being, along with improved child behaviour, in one study – even at 3 years after completion of the programme. The magnitude of the effects was modest. Family‐centred preventive intervention programmes that aim at improvement of child development should be continued after discharge home to improve the preterm child's resilience. Programmes may be most effective when they support the evolvement of a responsive parent–infant relationship over time, as well as the parent's well‐being.
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