| 1. |
- Bagazgoitia, N. V. D., et al.
(författare)
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Quality of Life in Young Adults With Cerebral Palsy: A Longitudinal Analysis of the SPARCLE Study
- 2021
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Ingår i: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: While most people with cerebral palsy (CP) will have a life expectancy similar to that of the general population, international research has primarily focused on childhood and adolescence; and knowledge about the quality of life (QoL) of young adults with CP, its trajectories, and associated factors remains scarce.Methods: This longitudinal study included young adults with CP living in five European regions and who had previously participated in the SPARCLE cohort as children and/or adolescents. Their QoL in the psychological well-being and social relationships domains was estimated using age-appropriate validated instruments (KIDSCREEN-52 in childhood/adolescence and WHOQOL-Bref in young adulthood). We used generalized linear mixed-effect models with random intercept to estimate long-term trajectories of QoL in both domains and to investigate whether severity of impairment, pain, and seizure influenced these trajectories. We sought to identify potentially different trajectories of QoL from childhood to adulthood using a shape-based clustering method.Results: In total, 164 young adults with CP aged 22-27 years participated in the study. Psychological well-being linearly decreased by 0.78 points (scale 0-100) per year (95% confidence interval (CI) -0.99 to -0.56) from childhood to young adulthood, whereas QoL in the social relationships domain increased (beta coefficient 1.24, 95% CI 0.92-1.55). Severity of impairment was associated with reduced QoL in all life periods of the study (childhood, adolescence, and young adulthood): motor impairment with social relationships, and more nuancedly intellectual disability with psychological well-being and social relationships. At all periods, frequent pain significantly reduced psychological well-being, and seizures were associated with lower QoL in the social relationships domain. In both domains, we identified a group of individuals with CP who presented a reverse trajectory compared with the general QoL trajectory.Conclusion: Identification of QoL trajectories and their associated factors yields improved knowledge about the experience of individuals with CP until young adulthood. Further studies are needed to better understand the determinants that have the greatest influence on the different shapes of long-term trajectories of QoL.
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| 2. |
- Colver, A., et al.
(författare)
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Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis
- 2015
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Ingår i: Lancet. - : Elsevier BV. - 0140-6736. ; 385:9969, s. 705-716
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Tidskriftsartikel (refereegranskat)abstract
- Background Children with cerebral palsy who can self-report have similar quality of life (QoL) to their able-bodied peers. Is this similarity also found in adolescence? We examined how self-reported QoL of adolescents with cerebral palsy varies with impairment and compares with the general population, and how factors in childhood predict adolescent QoL. Methods We report QoL outcomes in a longitudinal follow-up and cross-sectional analysis of individuals included in the SPARCLE1 (childhood) and SPARCLE2 (adolescent) studies. In 2004 (SPARCLE1), a cohort of 818 children aged 8-12 years were randomly selected from population-based cerebral palsy registers in nine European regions. We gathered data from 500 participants about QoL with KIDSCREEN (ten domains); frequency of pain; child psychological problems (Strengths and Difficulties Questionnaire); and parenting stress (Parenting Stress Index). At follow-up in 2009 (SPARCLE2), 355 (71%) adolescents aged 13-17 years remained in the study and self-reported QoL (longitudinal sample). 76 additional adolescents self-reported QoL in 2009, providing data for 431 adolescents in the cross-sectional sample. Researchers gathered data at home visits. We compared QoL against matched controls in the general population. We used multivariable regression to relate QoL of adolescents with cerebral palsy to impairments (cross-sectional analysis) and to childhood QoL, pain, psychological problems, and parenting stress (longitudinal analysis). Findings Severity of impairment was significantly associated (p<0.01) with reduced adolescent QoL on only three domains (Moods and emotions, Autonomy, and Social support and peers); average differences in QoL between the least and most able groups were generally less than 0.5 SD. Adolescents with cerebral palsy had significantly lower QoL than did those in the general population in only one domain (Social support and peers; mean difference -2.7 [0.25 SD], 95% CI -4.3 to -1.4). Pain in childhood or adolescence was strongly associated with low adolescent QoL on eight domains. Childhood QoL was a consistent predictor of adolescent QoL. Child psychological problems and parenting stress in childhood or their worsening between childhood and adolescence predicted only small reductions in adolescent QoL. Interpretation Individual and societal attitudes should be affected by the similarity of the QoL of adolescents with and without cerebral palsy. Adolescents with cerebral palsy need particular help to maintain and develop peer relationships. Interventions in childhood to alleviate psychological difficulties, parenting stress, and especially pain, are justified for their intrinsic value and for their longer term effect on adolescent QoL. Copyright (C) Colver et al. Open Access article distributed under the terms of CC BY.
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| 3. |
- Desroches, C, et al.
(författare)
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Synthesis, characterization and optical power limiting behaviour of phenylazo- and 4-nitrophenylazo-tetrahydroxytetrathiacalix[4]arene
- 2001
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Ingår i: Journal of Materials Chemistry. - 0959-9428 .- 1364-5501. ; 11:12, s. 3014-3017
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Tidskriftsartikel (refereegranskat)abstract
- p-Tetrakis(4-nitrophenylazo) tetrahydroxytetrathiacalix[4] arene and p-tetrakis(phenylazo) tetrahydroxytetrathiacalix[4] arene were prepared and fully characterized using H-1 and C-13 NMR, mass spectroscopy, thermogravimetric analysis and differential scanning calorimetry. The solid-state structure of p-tetrakis(4-nitrophenylazo) tetrahydroxytetrathiacalix[4] arene was investigated by single crystal X-ray diffraction. It crystallized in the triclinic system (space group: P (1) over bar). z-Scan experiments were performed on the p-tetrakis(4-nitrophenylazo) tetrahydroxytetrathiacalix[ 4] arene showing non linear absorption due to two photon absorption with a TPA cross-section of about 50 x 10(-50) cm(4) s per photon. Optical power limiting measurements on the p-tetrakis( phenylazo) tetrahydroxytetrathiacalix[ 4] arene at 532 nm (48% linear transmission) was found to limit the energy to similar to9 muJ.
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| 4. |
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| 5. |
- Rapp, M., et al.
(författare)
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Predictors of parent-reported quality of life of adolescents with cerebral palsy: A longitudinal study
- 2017
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Ingår i: Research in Developmental Disabilities. - : Elsevier BV. - 0891-4222. ; 62, s. 259-270
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Tidskriftsartikel (refereegranskat)abstract
- Aim: Parent-reporting is needed to examine Quality of Life (QoL) of children with cerebral palsy (CP) across all severities. This study examines whether QoL changes between childhood and adolescence, and what predicts adolescent QoL. Method: SPARCLE is a European cohort study of children with CP, randomly sampled from population databases. Of 818 8-12-year-olds joining the study, 594 (73%) were revisited as 13-17-year-olds. The subject of this report is the 551 (316 boys, 235 girls) where. the same parent reported QoL on both occasions using KIDSCREEN-52 (transformed Rasch scale, mean 50, SD 10 per domain). Associations were assessed using linear regression. Results: Between childhood and adolescence, average QoL reduced in six domains (1.3-3.8 points, p <0.01) and was stable in three (Physical wellbeing, Autonomy, Social acceptance). Socio-demographic factors had little predictive value. Childhood QoL was a strong predictor of all domains of adolescent QoL. Severe impairments of motor function, IQ or communication predicted higher adolescent QoL on some domains; except that severe motor impairment predicted lower adolescent QoL on the Autonomy domain. More psychological problems and higher parenting stress in childhood and their worsening by adolescence predicted lower QoL in five and eight domains respectively; contemporaneous pain in seven domains. The final model explained 30%-40% of variance in QoL, depending on domain. Interpretation: In general, impairment severity and socio-demographic factors were not predictors of lower adolescent QoL. However, pain, psychological problems and parenting stress were predictors of lower adolescent QoL in most domains. These are modifiable factors and addressing them may improve adolescent QoL. (C) 2016 Elsevier Ltd. All rights reserved.
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