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1.
Pharmacol Ther ; 225: 107847, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-33819560

RESUMO

Interleukin-33 (IL-33), a member of the IL-1 family, and its cognate receptor, Interleukin-1 receptor like-1 (IL-1RL1 or ST2), are susceptibility genes for childhood asthma. In response to cellular damage, IL-33 is released from barrier tissues as an 'alarmin' to activate the innate immune response. IL-33 drives type 2 responses by inducing signalling through its receptor IL-1RL1 in several immune and structural cells, thereby leading to type 2 cytokine and chemokine production. IL-1RL1 gene transcript encodes different isoforms generated through alternative splicing. Its soluble isoform, IL-1RL1-a or sST2, acts as a decoy receptor by sequestering IL-33, thereby inhibiting IL1RL1-b/IL-33 signalling. IL-33 and its receptor IL-1RL1 are therefore considered as putative biomarkers or targets for pharmacological intervention in asthma. This review will provide an overview of the genetics and biology of the IL-33/IL-1RL1 pathway in the context of asthma pathogenesis. It will discuss the potential and complexities of targeting the cytokine or its receptor, how genetics or biomarkers may inform precision medicine for asthma targeting this pathway, and the possible positioning of therapeutics targeting IL-33 or its receptor in the expanding landscape of novel biologicals applied in asthma management.


Assuntos
Asma , Proteína 1 Semelhante a Receptor de Interleucina-1 , Interleucina-33 , Transdução de Sinais , Asma/tratamento farmacológico , Asma/genética , Asma/patologia , Criança , Humanos , Proteína 1 Semelhante a Receptor de Interleucina-1/genética , Proteína 1 Semelhante a Receptor de Interleucina-1/metabolismo , Interleucina-33/genética , Interleucina-33/metabolismo
2.
Child Care Health Dev ; 44(4): 623-629, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29732598

RESUMO

BACKGROUND: Family-centred services (FCS) is widely regarded as the best practice approach in early interventions. Creating a therapeutic environment, which also stimulates collaboration between parents and service professionals, is a way to conform to the principles of FCS. The present paper describes the project entitled @home, involving the implementation of home consultations by a specialized team working with children aged 0-5 years at our rehabilitation centre in the Netherlands. The objectives of this article are to (a) describe the development and implementation of home consultations as part of regular care and (b) share the experiences of parents and service providers with home consultations. METHOD: The implementation process was divided into 3 steps: (1) interviewing experts, (2) adjusting current rehabilitation trajectories, and (3) service providers offering consultations to children at home. The experiences with the home consultations were immediately incorporated in the system, making the implementation an iterative process. RESULTS: In 82% of the 133 home conducted consultations, the service professionals reported that it was more valuable to offer home consultations than seeing the child at the rehabilitation centre. The semistructured interviews revealed that parents and service providers found that they received and provided more tailored advice, perceived a more equal partnership between service professionals and parents, and reported that the home consultations provided a good natural therapeutic environment where a child can be itself and where the child performs best. CONCLUSION: By using the @home system based on the 3 service models, home consultations are now part of the regular paediatric rehabilitation system at our rehabilitation centre.


Assuntos
Serviços de Saúde da Criança , Doença Crônica/reabilitação , Crianças com Deficiência/reabilitação , Visita Domiciliar/estatística & dados numéricos , Pais/psicologia , Satisfação do Paciente/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Serviços de Saúde da Criança/estatística & dados numéricos , Pré-Escolar , Prestação Integrada de Cuidados de Saúde , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Países Baixos , Projetos Piloto
3.
Res Involv Engagem ; 3: 26, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29238612

RESUMO

PLAIN ENGLISH SUMMARY: Parents of children with physical disabilities do a lot to support their child in daily life. In doing this they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on different topics. It is sometimes hard for them to get the right information at the right moment, and to ask the right questions to physicians and other healthcare professionals. In order to develop a digital tool to help parents formulate questions and find information, we thought it would be crucial to work together in a process of co-creation with parents, researchers, IT-specialists and healthcare professionals. In close collaboration with them we developed a tool that aims to help parents ask questions, find information and take a more leading role in consultations with healthcare professionals, called the WWW-roadmap (WWW-wijzer in Dutch).In two groups of parents (one group with and one group without experience of using the tool), we will study the effects of using this tool, on consultations with physicians. We expect that using the tool will result in better empowerment, satisfaction and family-centred care. BACKGROUND: Parents of children with physical disabilities do much to support their child in daily life. In doing so, they are faced with many challenges. These parents have a wide range of unmet needs, especially for information, on various topics. Getting timely and reliable information is very difficult for parents, whereas being informed is a major requirement for the process of empowerment and shared decision-making. This paper describes the development of a digital tool to support parents in this process. During its development, working together with parents was crucial to address relevant topics and design a user-centred intervention. METHODS: In co-creation with parents, healthcare professionals, IT-professionals and researchers, a digital tool was developed, the 'WWW-roadmap' ['WWW-wijzer' in Dutch]. This digital tool aims to enable parents to explore their questions (What do I want to know?), help in their search for information (Where can I find the information I need), and refer to appropriate professionals (Who can assist me further?).During the process, we got extensive feedback from a parent panel consisting of parents of children with physical disabilities, enabling us to create the tool 'with' rather than 'for' them. This led to a user-friendly and problem-driven tool. DISCUSSION: The WWW-roadmap can function as a tool to help parents formulate their questions, search for information and thus prepare for consultations with healthcare professionals, and to facilitate parental empowerment and shared-decision making by parent and professional. Effects of using the WWW-roadmap on consultations with professionals will be studied in the future.

4.
Allergy ; 72(11): 1811-1815, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28440062

RESUMO

Wheezing is common in childhood. However, current prediction models of pediatric asthma have only modest accuracy. Novel biomarkers and definition of subphenotypes may improve asthma prediction. Interleukin-1-receptor-like-1 (IL1RL1 or ST2) is a well-replicated asthma gene and associates with eosinophilia. We investigated whether serum sST2 predicts asthma and asthma with elevated exhaled NO (FeNO), compared to the commonly used Asthma Prediction Index (API). Using logistic regression modeling, we found that serum sST2 levels in 2-3 years-old wheezers do not predict doctors' diagnosed asthma at age 6 years. Instead, sST2 predicts a subphenotype of asthma characterized by increased levels of FeNO, a marker for eosinophilic airway inflammation. Herein, sST2 improved the predictive value of the API (AUC=0.70, 95% CI 0.56-0.84), but had also significant predictive value on its own (AUC=0.65, 95% CI 0.52-0.79). Our study indicates that sST2 in preschool wheezers has predictive value for the development of eosinophilic airway inflammation in asthmatic children at school age.


Assuntos
Asma/diagnóstico , Eosinofilia/diagnóstico , Proteína 1 Semelhante a Receptor de Interleucina-1/sangue , Óxido Nítrico/análise , Valor Preditivo dos Testes , Hipersensibilidade Respiratória/diagnóstico , Sons Respiratórios/diagnóstico , Testes Respiratórios , Pré-Escolar , Humanos
5.
Child Care Health Dev ; 43(5): 663-669, 2017 09.
Artigo em Inglês | MEDLINE | ID: mdl-28326571

RESUMO

BACKGROUND: A family-centred approach to services of children with disabilities is widely accepted as the foundational approach to service delivery in paediatric health care. The 56 items of the Measure of Processes of Care questionnaire (MPOC-56) all reflect elements of family-centred service. In this study, we investigated which elements of family-centred service are rated important by parents of children with cerebral palsy by adding a question on importance to each item of the MPOC-56 (MPOC-56-I). METHODS: In total, 175 parents of children with cerebral palsy completed the MPOC-56-I. For each MPOC item, parents were asked to rate the importance on a 5-point scale ranging from 0 (not important at all) up to and including 4 (very important). We used Spearman's rank correlation coefficient to further explore the variation in parents' importance ratings. RESULTS: Parents' importance ratings of the MPOC-56 items varied. The percentage of parents rating an item important (importance rating 3 or 4) varied between 43.8% and 96.8%. The percentage of parents rating an item unimportant (rating 0 or 1) varied between 0.0% and 20.3%, and the percentage of parents rating an item neutral (rating 2) varied between 3.0% and 36.0%. Most diverse importance ratings were found for five items concerning the provision of general information. Three correlations between these items and child and parent characteristics were found. Six items were rated important by almost all (≥95%) parents. These items concern elements of specific information about the child, co-ordinated and comprehensive care for child and family and enabling and partnership. CONCLUSIONS: Parents rate the importance of family-centred services for their situation in various ways. These findings endorse that family-centred services should recognize the uniqueness of families and should be tailored to what parents find important.


Assuntos
Paralisia Cerebral , Serviços de Saúde da Criança/normas , Prestação Integrada de Cuidados de Saúde/normas , Crianças com Deficiência , Pais/psicologia , Satisfação do Paciente/estatística & dados numéricos , Assistência Centrada no Paciente/normas , Adulto , Paralisia Cerebral/reabilitação , Criança , Serviços de Saúde da Criança/organização & administração , Pré-Escolar , Crianças com Deficiência/reabilitação , Feminino , Humanos , Estudos Longitudinais , Masculino , Países Baixos , Avaliação de Processos em Cuidados de Saúde , Relações Profissional-Família , Inquéritos e Questionários
6.
Res Dev Disabil ; 60: 125-134, 2017 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-27914304

RESUMO

BACKGROUND: Evidence suggests that parents of children with disabilities feel that not all their information needs are being met, but it remains unclear how parents try to fill these information gaps. AIMS: The aim of this study is to describe how parents of children with physical disabilities search for and evaluate information. METHODS: Qualitative semi-structured interviews were conducted with 15 parents of children with a disability, aged 1.5-21 years. Data were analysed using thematic analysis. RESULTS: There was much variation in information needs between parents. Parents used different sources, depending on the type of information needed, the most important being healthcare professionals, peers, and websites. Peers played an important role in information provision and were the preferred source of experience-based knowledge and support. The Internet is a widely used medium to search for information and to access various sources. There was a general preference for closed Internet communities for peer contact. Information was commonly evaluated by comparing sources. CONCLUSIONS AND IMPLICATIONS: Parents use different sources for different information needs, and evaluate information by comparing them. Healthcare professionals and parents can support each other in locating and evaluating information including experience-based knowledge. Healthcare professionals should guide parents in their search for information and experience-based knowledge from peers.


Assuntos
Crianças com Deficiência , Pessoal de Saúde , Comportamento de Busca de Informação , Internet , Pais , Grupo Associado , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Inquéritos e Questionários , Adulto Jovem
7.
Child Care Health Dev ; 42(4): 455-63, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-27117085

RESUMO

AIM: To describe the course of parents' perceptions of the family centredness of rehabilitation services provided to their children with cerebral palsy (CP) before and after the transition from preschool to school-based services. BACKGROUND: Parents of 59 children with CP aged 2.5 to 4.5 years filled in the 56-item Measure of Processes of Care (MPOC-56) on three occasions pre (2) and post (1) transition to school-based services. Friedman tests were used to describe changes in parents' perceptions over time. Mann-Whitney U tests were used to describe differences in course of parents' perceptions between regular school and special school or day care. RESULTS: Parents' perceptions of preschool services were stable between the ages of 2.5 and 3.5 years, with a decline after transition on four of the five domains of the MPOC (P < 0.05). The domain providing general information was scored lowest (median at baseline 3.56, IQR 2.39) compared with the four other MPOC domains, but remained stable over time. No differences in course of parental perceptions were found for school type. CONCLUSION: The transition from preschool to school-based services for children with CP is associated with a decrease in parents' perception of family centredness independent of the type of school. The transition in services has a negative impact on perceived family-centred practices.


Assuntos
Paralisia Cerebral/reabilitação , Serviços de Saúde da Criança/organização & administração , Prestação Integrada de Cuidados de Saúde/organização & administração , Crianças com Deficiência/reabilitação , Pais/psicologia , Transferência de Pacientes/organização & administração , Assistência Centrada no Paciente/normas , Serviços de Saúde Escolar/normas , Paralisia Cerebral/psicologia , Paralisia Cerebral/terapia , Serviços de Saúde da Criança/normas , Pré-Escolar , Crianças com Deficiência/psicologia , Crianças com Deficiência/estatística & dados numéricos , Feminino , Humanos , Estudos Longitudinais , Masculino , Países Baixos , Avaliação de Processos em Cuidados de Saúde , Relações Profissional-Família , Estudos Prospectivos , Inquéritos e Questionários
8.
Clin Exp Allergy ; 46(6): 884-7, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-26850082

RESUMO

BACKGROUND: Interleukin-33 (IL-33) has been subject of extensive study in the context of inflammatory disorders, particularly in asthma. Many human biological samples, including serum, have been used to determine the protein levels of IL-33, aiming to investigate its involvement in asthma. Reliable methods are required to study the association of IL-33 with disease, especially considering the complex nature of serum samples. OBJECTIVE: We evaluated four IL-33 ELISA kits, aiming to determine a robust and reproducible approach to quantifying IL-33 in human serum from asthma patients. METHODS: IL-33 levels were investigated in serum of well-defined asthma patients by the Quantikine, DuoSet (both R&D systems), ADI-900-201 (Enzo Life Sciences), and SKR038 (GenWay Biotech Inc San Diego USA) immunoassays, as well as spiking experiments were performed using recombinant IL-33 and its soluble receptor IL-1RL1-a. RESULTS: We show that 1) IL-33 is difficult to detect by ELISA in human serum, due to lack of sensitivity and specificity of currently available assays; 2) human serum interferes with IL-33 quantification, in part through IL-1RL1-a; and 3) using non-serum certified kits may lead to spurious findings. CONCLUSION AND CLINICAL RELEVANCE: If IL-33 is to be studied in the serum of asthma patients and other diseases, a more sensitive and specific assay method is required, which will be vital for further understanding and targeting of the IL-33/IL-1RL1 axis in human disease.


Assuntos
Ensaio de Imunoadsorção Enzimática , Interleucina-33/sangue , Kit de Reagentes para Diagnóstico , Asma/sangue , Asma/diagnóstico , Asma/imunologia , Ensaio de Imunoadsorção Enzimática/métodos , Ensaio de Imunoadsorção Enzimática/normas , Humanos , Kit de Reagentes para Diagnóstico/normas , Reprodutibilidade dos Testes
9.
Child Care Health Dev ; 41(1): 84-92, 2015 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-24797584

RESUMO

BACKGROUND: The aim was to provide an overview of the number, domains and priority of needs as expressed by parents in supporting participation of their school-aged child with a physical disability. Additionally, this study investigated whether the number of needs within each domain is related to the child's gross motor function level, parent's perceived own general health, family socio-economic status and family type. METHOD: A cross-sectional study with a total of 146 participants (84.9% mothers) who completed a survey including the Family Needs Inventory - Paediatric Rehabilitation, the Gross Motor Function Classification System Family Report Questionnaire, the General Health Questionnaire and a demographic questionnaire. A need has been operationalized as 'a family's, parent's or other family member's expressed desire for information, services and supports related to their family'. Descriptive statistics and correlation analysis were applied. RESULTS: Parents (n = 146; response rate 27%) varied in the number of expressed needs (range 0-124; mean = 35.9; median = 30; SD = 25.6). Highest mean percentage scores were found for the domains 'Laws, regulations and fees' (36%), 'Leisure time' (35.6%) and 'Aids, adaptations, facilities and resources' (33.8%). Seven single needs were expressed by 50% or more of the parents. All domains of needs showed a positive correlation with perceived parental general health. The domains 'Laws, regulations and fees', 'Day care & school', 'Emotional and mental support' and 'Raising my child' correlated negatively with family socio-economic status; and child's gross motor function level correlated positively with the domains 'Aids, adaptations, facilities and resources', 'Practical support at home' and 'Leisure time'. CONCLUSIONS: As parents have a major influence on participation of children with a physical disability, meeting their individual needs should become an objective for service providers and policy makers. Family-centred service might be more effective by putting a greater emphasis on changing the environment.


Assuntos
Crianças com Deficiência/reabilitação , Transtornos das Habilidades Motoras/classificação , Pais/psicologia , Participação Social/psicologia , Apoio Social , Adulto , Criança , Pré-Escolar , Estudos Transversais , Características da Família , Feminino , Humanos , Masculino , Avaliação das Necessidades , Países Baixos , Índice de Gravidade de Doença , Classe Social , Inquéritos e Questionários
10.
Child Care Health Dev ; 40(4): 498-506, 2014 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-24844366

RESUMO

BACKGROUND: Valid tools to assess family needs for children with physical disabilities are needed to help tune paediatric rehabilitation care processes to individual needs of these families. To create such a family needs inventory, needs of families of children with a physical disability (age 0-18 years) were identified. We examined differences in the number and type of needs listed by families when asked for by means of an interview compared with using an inventory. METHODS: Forty-nine families of children with a wide variety of physical disabilities (mean age 7.7 years; SD 4.6) participated in semi-structured interviews, focusing on family needs. They also checked an inventory of 99 items (based on a previously conducted literature review), regarding their family needs. In addition, individual interviews with healthcare professionals, and panel meetings with healthcare professionals and parents were held to further identify relevant family needs for the inventory. RESULTS: The individual parent and healthcare professional interviews raised 41 needs that were not included in the original inventory of 99 items. Moreover, the panel meetings raised a further 49 needs. After restructuring and reformulating several items, a 187-item Family Needs Inventory - Paediatric Rehabilitation (FNI-PR) was created. The parent interviews revealed significantly less family needs (mean number of needs = 10.8; SD = 6.0) compared with using the inventory (mean number of needs = 31.7; SD = 19.7) (P < 0.0001). Most expressed family needs were related to both general and specific information concerning the child's development and treatment, aids and information about legislation and to rules relating to compensation of costs. CONCLUSION: Based on responses of parents and healthcare professionals the FNI-PR has been developed, a comprehensive inventory for family needs that can be used in paediatric rehabilitation. An inventory checked by parents resulted in more family needs than a single open-ended question. The inventory may facilitate the implementation of family-centred care.


Assuntos
Prestação Integrada de Cuidados de Saúde/estatística & dados numéricos , Crianças com Deficiência/reabilitação , Saúde da Família , Avaliação das Necessidades , Pais , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Adolescente , Criança , Pré-Escolar , Prestação Integrada de Cuidados de Saúde/organização & administração , Crianças com Deficiência/estatística & dados numéricos , Equipamentos e Provisões , Feminino , Pesquisa sobre Serviços de Saúde , Humanos , Masculino , Avaliação das Necessidades/organização & administração , Avaliação das Necessidades/estatística & dados numéricos , Países Baixos/epidemiologia , Planejamento de Assistência ao Paciente , Guias de Prática Clínica como Assunto , Relações Profissional-Família , Apoio Social
11.
Clin Rehabil ; 28(4): 388-96, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24113728

RESUMO

OBJECTIVE: To assess the discrepancy between the leisure activities children prefer and the leisure activities they actually participate in, for children with and without a physical disability, and to explore how in both groups this is related to age and gender. DESIGN: Cross-sectional comparison. SUBJECTS: Children with and without physical disabilities that were recruited from schools for special education and regular schools in the Netherlands. MAIN MEASURES: The Children's Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activities of Children (PAC). A discrepancy score was calculated representing high preference but no participation in the activity in the past four months. RESULTS: A total of 141 children (6-18 years) with a physical disability (mean age 12.5, 43% girls, 57% boys) and 156 children without physical disabilities (mean age 11.5, 55% girls,45% boys) were included in the study. There was no significant difference in discrepancy scores between children with and without physical disabilities (informal activities 9.8 ± 5.0 vs. 9.8 ± 4.6, formal activities 6.4 ± 3.4 vs. 6.6 ± 2.8). Discrepancy between preference and performance varied by age and gender for children without disabilities but not for children with disabilities. CONCLUSIONS: Both groups are equally able to participate in the activities they prefer. Age and gender had a significant effect on the discrepancy scores for children and adolescents without physical disabilities but not for children with physical disabilities.


Assuntos
Comportamento do Adolescente/psicologia , Comportamento Infantil/psicologia , Comportamento de Escolha , Crianças com Deficiência/psicologia , Atividades de Lazer/psicologia , Participação Social/psicologia , Adolescente , Distribuição por Idade , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Países Baixos , Análise de Regressão , Distribuição por Sexo
12.
Child Care Health Dev ; 40(6): 787-96, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-23937711

RESUMO

Understanding the experiences of parents with their child's intervention might help meet the needs of parents and, subsequently get them engaged in their child's intervention. As parents' early beliefs regarding their child's intervention has consequences for treatment participation, it is important to understand these parental perspectives. The aim of this mixed studies review was to give an overview of the experiences and related factors of parents of young children (0-5 years of age) with cerebral palsy in relation to the physical and/or occupational therapy of their child in a rehabilitation setting. The literature was searched systematically for qualitative and quantitative studies published between January 1990 and July 2011. Inclusion criteria were (1) the study population consisted of parents of children with cerebral palsy, with at least 25% of children under the age of five; (2) children had received physical and/or occupational therapy in a rehabilitation setting; and (3) the experiences of the parents with their child's therapy were addressed. Data were synthesized with the framework synthesis method resulting in a conceptual framework describing the factors that are related to the parents' experiences with their child's interventions. A total of 13 studies (eight qualitative and five quantitative) were included and evaluated. Parents expressed various aspects in context, process and outcomes when asked about their experiences with their child's intervention. They had different needs over time and needed time to build a collaborative relationship with their child's therapists. The proposed framework acknowledges the various aspects in context, process and outcomes that parents reported when asked about their experiences. Knowing this, the importance of the broader context of the child in a family should be acknowledged; realizing the impact that the demands of daily life, supports and resources provided to parents, attitudes in the community and culture have on parental experiences.


Assuntos
Adaptação Psicológica , Paralisia Cerebral/reabilitação , Terapia Ocupacional , Pais , Especialidade de Fisioterapia , Paralisia Cerebral/psicologia , Pré-Escolar , Crianças com Deficiência , Humanos , Lactente , Recém-Nascido , Relações Pais-Filho , Pais/psicologia , Satisfação do Paciente , Assistência Centrada no Paciente , Apoio Social
13.
Child Care Health Dev ; 39(3): 374-80, 2013 May.
Artigo em Inglês | MEDLINE | ID: mdl-22676329

RESUMO

OBJECTIVE: This longitudinal study aims to determine which child, family and environmental variables measured at 2 years of age predict leisure participation in formal and informal activities in school aged children with cerebral palsy (CP). METHODS: Parents of 46 children with CP (mean age at baseline: 2 years 6 months, SD 0 years 1 month; at follow-up 6 years 7 months, SD 0 years 9 months; n = 26 boys, n = 20 girls; Gross Motor Classification System I = 30%, II = 7%, III = 28%, IV = 24%, V = 11%) completed the Children's Assessment of Participation and Enjoyment indicating their child's participation. Multivariate regression models were used to identify early predictors of participation. RESULTS: Movement ability was a significant child-related predictor for formal activities (R(2) 17%, P < 0.05). Movement ability and social skills were most predictive (R(2) 62%, P < 0.00) for informal activities. The feeling of being restricted in family participation was the single most predictive factor for formal and informal activities at family level (R(2) 12%, P < 0.05, R(2) 25%, P < 0.05). Type of daycare was the only environmental variable that was predictive, and only for informal activities (R(2) 16%, P < 0.05). In the overall model movement ability was most predictive for leisure participation in formal activities (R(2) 17%, P < 0.05). Movement ability and social skills are the most important predictors for informal leisure participation (R(2) 62%, P < 0.01). CONCLUSIONS: Several variables are found to be related to formal and informal participation at age 6. Movement ability and social skills at age 2 are most predictive of leisure participation when the child is 6 years old.


Assuntos
Paralisia Cerebral/reabilitação , Crianças com Deficiência/reabilitação , Meio Ambiente , Atividades de Lazer , Participação Social , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/psicologia , Criança , Pré-Escolar , Avaliação da Deficiência , Crianças com Deficiência/psicologia , Saúde da Família , Feminino , Humanos , Relações Interpessoais , Estudos Longitudinais , Masculino , Destreza Motora , Psicometria , Apoio Social , Inquéritos e Questionários
14.
Disabil Rehabil ; 35(8): 686-93, 2013 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-22897114

RESUMO

PURPOSE: The purpose of this paper is to describe the course of the health-related quality of life (HR-QoL) of children with cerebral palsy (CP) between the ages of 2.5 and 4.5 years, at both group and individual level. We also examined whether CP characteristics are helpful in understanding which children show a decrease in HR-QoL. METHODS: HR-QoL of 72 children with CP was measured using the TNO-AZL Preschool children Quality of Life (TAPQOL) questionnaire at the ages of 2.5, 3.5 and 4.5 years. The course of HR-QoL was compared between groups with different CP characteristics. RESULTS: Median scores for 10 of the 12 domains of the TAPQOL were found to be stable between ages 2.5 and 4.5 years. However, individual children showed great changes in HR-QoL at these ages, for all domains. A larger proportion of children with less severe CP showed a decrease in HR-QoL for the behaviour problems domain (p = 0.02), and a larger proportion of unilaterally affected children showed a decrease in HR-QoL regarding the anxiety (p < 0.001) and social functioning (p = 0.01) domains. CONCLUSIONS: Although the median HR-QoL of children with CP is generally stable at these ages, much variation in the course of HR-QoL exists between individual children. There is no clear association between motor functioning or limb distribution and a decrease in HR-QoL.


Assuntos
Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/psicologia , Nível de Saúde , Destreza Motora , Qualidade de Vida , Pré-Escolar , Avaliação da Deficiência , Feminino , Seguimentos , Humanos , Classificação Internacional de Doenças , Masculino , Países Baixos , Relações Pais-Filho , Pais/psicologia , Índice de Gravidade de Doença , Perfil de Impacto da Doença , Inquéritos e Questionários
15.
Dev Neurorehabil ; 15(5): 369-85, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-23030304

RESUMO

PURPOSE: To investigate whether there are differences in participation in leisure activities between children with and without disabilities in Sweden, Norway and the Netherlands and how much personal and environmental factors explain leisure performance. METHODS: In a cross-sectional analytic design, the Children's Assessment of Participation and Enjoyment, CAPE, was performed with 278 children with disabilities and 599 children without disabilities aged 6-17 years. A one-way between-groups ANOVA explored the differences in participation between the countries. Hierarchical multiple regression analysis assessed if age, gender, educational level, living area and country of residence explained the variance in participation. RESULTS: Scandinavian children with disabilities participated in more activities with higher frequency compared to Dutch children. The strongest predictor was country of residence. For children without disabilities, differences existed in informal activities, the strongest predictor was gender. CONCLUSION: Differences in school- and support systems between the countries seem to influence patterns of participation, affecting children with disabilities most.


Assuntos
Crianças com Deficiência/psicologia , Felicidade , Atividades de Lazer/psicologia , Adolescente , Criança , Comparação Transcultural , Estudos Transversais , Feminino , Humanos , Masculino , Países Baixos , Noruega , Jogos e Brinquedos/psicologia , Inquéritos e Questionários , Suécia
16.
Clin Genet ; 81(4): 325-33, 2012 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-21981075

RESUMO

As monozygotic (MZ) twins are believed to be genetically identical, discordance for disease phenotype between MZ twins has been used in genetic research to understand the contribution of genetic vs environmental factors in disease development. However, recent studies show that MZ twins can differ both genetically and epigenetically. Screening MZ twins for genetic and/or epigenetic differences could be a useful and novel approach to identify modifying factors influencing phenotypic expression of disease. MZ twins that are phenotypically discordant for monogenic diseases are of special interest. Such occurrences have been described for Huntington's disease, spinocerebellar ataxias, as well as for familial forms of Alzheimer's disease. By comparing MZ twins that are phenotypically discordant, crucial factors influencing the phenotypic expression of the disease could be identified, which may be of relevance for understanding disease pathogenesis and variability in disease phenotype. Overall, understanding the crucial factors in development of a neurodegenerative disorder will have relevance for predictive testing, preventive treatment and could help to identify novel therapeutic targets.


Assuntos
Doenças Neurodegenerativas/genética , Fenótipo , Gêmeos Monozigóticos/genética , Doença de Alzheimer/genética , Metilação de DNA , Epigênese Genética , Humanos , Doença de Huntington/genética , Ataxias Espinocerebelares/genética
17.
Res Dev Disabil ; 32(5): 1521-9, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21388783

RESUMO

In 2001 the International Classification of Functioning (ICF) defined participation as 'someone's involvement in life situations'. Participation in leisure activities contributes to the development of children and their quality of life. Children with physical disabilities are known to be at risk for participation in fewer activities. The group of children with physical disabilities is highly heterogeneous consisting of children with different diagnosis and different ages. This systematic review aims to analyse the literature for the purpose of looking for variables involved in the frequency of participation in leisure activities for children and youth with different diagnoses and ages. Frequency of participation in leisure activities for children and youth with physical disabilities is associated with a variety of variables. Gross motor function, manual ability, cognitive ability, communicative skills, age and gender are the most important variables. The current evidence suggests that similar variables seem to apply to children with different diagnoses. Age is an important variable in participation of children and youth. However evidence about those variables associated with children at different ages is still lacking.


Assuntos
Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/psicologia , Crianças com Deficiência/psicologia , Atividades de Lazer/psicologia , Psicologia do Adolescente , Psicologia da Criança , Adolescente , Criança , Humanos
18.
J Intellect Disabil Res ; 55(6): 550-62, 2011 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21435067

RESUMO

BACKGROUND: Children with cerebral palsy (CP) are at greater risk for a limited intellectual development than typically developing children. Little information is available which children with CP are most at risk. This study aimed to describe the development of non-verbal intellectual capacity of school-age children with CP and to examine the association between the development of non-verbal intellectual capacity and the severity of CP. METHODS: A longitudinal analysis in a cohort study was performed with a clinic-based sample of children with CP. Forty-two children were assessed at 5, 6 and 7 years of age, and 49 children were assessed at 7, 8 and 9 years of age. Non-verbal intellectual capacity was assessed by Raven's Coloured Progressive Matrices (RCPM). Severity of CP was classified by the Gross Motor Function Classification System, type of motor impairment and limb distribution. manova for repeated measurements was used to analyse time effects and time × group effects on both RCPM raw scores and RCPM intelligence quotient scores. RESULTS: The development of non-verbal intellectual capacity was characterised by a statistically significant increase in RCPM raw scores but no significant change in RCPM intelligence quotient scores. The development of RCPM raw scores was significantly associated with the severity of CP. Children with higher levels of gross motor functioning and children with spastic CP showed greater increase in raw scores than children with lower levels of gross motor functioning and children with dyskinetic CP. CONCLUSIONS: Children with CP aged between 5 and 9 years show different developmental trajectories for non-verbal intellectual capacity, which are associated with the severity of CP. The development of non-verbal intellectual capacity in children with less severe CP seems to resemble that of typically developing children, while children with more severe CP show a limited intellectual development compared to typically developing children.


Assuntos
Paralisia Cerebral/diagnóstico , Paralisia Cerebral/psicologia , Deficiência Intelectual/diagnóstico , Deficiência Intelectual/psicologia , Testes de Inteligência/estatística & dados numéricos , Resolução de Problemas , Paralisia Cerebral/reabilitação , Criança , Pré-Escolar , Estudos de Coortes , Avaliação da Deficiência , Feminino , Humanos , Deficiência Intelectual/reabilitação , Estudos Longitudinais , Masculino
19.
Disabil Rehabil ; 33(15-16): 1421-32, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21091046

RESUMO

PURPOSE: This study provides information on the psychometric properties of a newly developed Dutch-language instrument for measuring parental perceptions of participation of preschool children (aged 2+ to 5+ years): the PART. METHOD: The PART was administered to parents of preschool children with (n = 51) and without (n = 285) physical developmental disabilities. In the group with disabilities, children with no or relatively minor mobility limitations (capability scores in mobility domain higher than one standard deviation below population mean) were excluded from all analyses. A subgroup of parents of children without disabilities (n = 56) filled out the PART a second time, after a five-week interval. Hypotheses regarding group differences in PART scores and correlations of PART scores with different, but related ICF-constructs were tested. Test-retest reliability of the PART scales was examined. RESULTS: Expectations about group differences were confirmed. PART scores were associated in predicted ways with related constructs. PART scales showed good test-retest reliability (ICCs from 0.76 to 0.87). CONCLUSIONS: These findings indicate that the Dutch-language PART is a reliable and valid instrument for measuring parental perceptions of participation of preschool children with and without mobility limitations. The PART can prove useful for both clinical and research purposes.


Assuntos
Atividades Cotidianas , Avaliação da Deficiência , Crianças com Deficiência/reabilitação , Limitação da Mobilidade , Pais/psicologia , Estudos de Casos e Controles , Pré-Escolar , Humanos , Masculino , Países Baixos , Consentimento dos Pais , Participação do Paciente/estatística & dados numéricos , Percepção , Psicometria , Valores de Referência , Reprodutibilidade dos Testes , Medição de Risco
20.
Am J Occup Ther ; 64(4): 614-20, 2010.
Artigo em Inglês | MEDLINE | ID: mdl-20825133

RESUMO

OBJECTIVE: Our aim in this study was to investigate the relationship between (a) the manual abilities of children with cerebral palsy (CP), assessed with the Manual Ability Classification System (MACS) in a school rehabilitation setting, and (b) the children's performance of self-care activities at home, assessed with the Pediatric Evaluation of Disability Inventory (PEDI). In addition, we assessed the interobserver reliability of the MACS. METHOD: Sixty-one children with CP were included (mean age = 10.3 yr, range = 5-14). The MACS was classified by 2 independent raters. The PEDI was scored in a structured interview. RESULTS: The Spearman correlation coefficient between the MACS and the self-care domain of the PEDI Caregiver Assistance Scale was high and statistically significant (r = .72). The interobserver reliability of the MACS was good (weighted kappa = .86). CONCLUSION: The MACS is a reliable instrument in a school environment and is related to the performance of daily life self-care activities at home.


Assuntos
Paralisia Cerebral/reabilitação , Avaliação da Deficiência , Destreza Motora/classificação , Serviços de Saúde Escolar , Atividades Cotidianas , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Variações Dependentes do Observador , Autocuidado
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