Carlos Carona

Adult outcomes and lifespan issues for people with childhood‐onset physical disability

This paper aimed to discuss functioning, quality of life, (QoL) and lifespan care issues of adolescents and young adults with childhood‐onset physical disability from a clinical, scientific, and personal perspective. We present a résumé of results of recently performed studies in rehabilitation‐based samples of (young) adults with childhood‐onset conditions such as cerebral palsy (CP) and spina bifida (SB), and different models of transition and lifespan care. The studies showed that many young adults with a childhood‐onset disability experience health‐related problems such as functional deterioration, pain or fatigue, and an inactive lifestyle. A significant number are restricted in participation in work, housing, and intimate relationships. They perceive a lower health‐related and global QoL compared with a reference group. In some centres in the UK and the Netherlands specialized outpatient services are available or being developed. In conclusion, transition to adulthood is a critical phase for reaching autonomous participation in adult life. There is an international challenge to incorporate a lifespan perspective in paediatric, transition, and adult health care services for persons with a childhood‐onset disability.

Development and psychometric properties of the World Health Organization Quality of Life Assessment Instrument (WHOQOL-100) in Portugal.

BackgroundAt the beginning of the 1990s, the World Health Organization (WHO) developed a project in order to create a cross-cultural instrument of quality of life assessment: the World Health Organization Quality of Life (WHOQOL).PurposeThis paper describes the development of the European Portuguese version of the WHOQOL-100, according to the methodology recommended by the WHO.MethodSpecial attention is given to the qualitative pilot study, which led to the development of the Portuguese Facet [Political P], and to the empirical pilot study and the psychometric studies, based on the application of the Portuguese version of the instrument to a sample of 315 subjects from the general population and 289 patients. The assessment protocol also included the Beck Depression Inventory and the Brief Symptom Inventory.ResultsThe Portuguese version of WHOQOL-100 showed acceptable internal consistency (α range 0.84–0.94) and test–retest reliability in all domains (r range 0.67–0.86). Discriminant validity was significant for all domains, except in Spirituality. Convergent validity with the Beck Depression Inventory and the Brief Symptom Inventory was satisfactory for most domains.ConclusionThe WHOQOL showed good psychometric characteristics, suggesting that the Portuguese version of WHOQOL is valid and reliable in the assessment of quality of life in Portugal.

Similarities amid the difference: Caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy

This study had two main objectives: first, to examine the direct and indirect effects, via social support, of caregiving burden on the adaptation outcomes of children/adolescents with cerebral palsy and their parents; and second, to assess the invariance of such models in clinical vs. healthy subsamples. Participants were 210 dyads of children/adolescents and one of their parents (total N=420), divided in 93 dyads of children/adolescents with cerebral palsy and 117 dyads of children/adolescents with no medical diagnosis. Data on caregiving burden, social support and adaptation outcomes were obtained through self-report questionnaires. Caregiving burden was linked to parents and their childrens psychological maladjustment and quality of life both directly (except for childrens quality of life) and indirectly through social support. Findings were invariant across clinical and healthy subsamples. Caregiving burden may influence adaptation outcomes of children/adolescents with CP and their parents both directly and via their social support perceptions. These patterns are similar to those observed in typically developing children/adolescents.

Examining a developmental approach to health-related quality of life assessment: Psychometric analysis of DISABKIDS generic module in a Portuguese sample

The aim of this study was to assess the properties of a generic instrument for pediatric health-related quality of life (HRQL) assessment – DISABKIDS-37 – in a sample of Portuguese children and adolescents with chronic health conditions. Participants were 349 children/adolescents with asthma or epilepsy and their parents/caregivers, who reported on children/adolescents’ HRQL, along with generic quality of life and psychological adjustment measures in self- and proxy-report formats. Using classical statistic validation procedures, reliability, scale inter-correlations, and convergent, divergent, and discriminant validities were analyzed. Results were reported using age group stratifications, attesting the developmental appropriateness of DISABKIDS-37 questionnaire to assess HRQL in children, adolescents, and mixed samples.

Quality of life in pediatric asthma patients and their parents: a meta-analysis on 20 years of research.

Introduction: This meta-analytic review was conducted to estimate the magnitude of quality of life (QoL) impairments in children/adolescents with asthma and their parents. Method: A systematic search in four electronic databases revealed 15 quantitative studies published between 1994–2013 that directly compared the QoL of 7- to 18-year-old asthma patients/parents to community/healthy controls. Pooled mean differences (MD) with 95% CI were estimated using the inverse-variance random-effects method. Results: Pediatric asthma patients (n = 1797) presented lower overall QoL (MD = -7.48, CI: -10.67/-4.29), physical functioning (MD = -9.36, CI: -11.85/-6.86), psychological functioning (MD = -5.00, CI: -7.17/-2.82) and social functioning (MD = -3.76, CI: -5.80/-1.72), compared to controls (n = 13,266). For parents (666 cases and 7328 controls), asthma was associated with lower physical functioning (MD = -10.15, CI: -12.21/-8.08). Between-studies heterogeneity was explained by type of informant and selection of controls. Conclusion: The ascertainment of the magnitude of QoL impairments and the most affected QoL dimensions for pediatric asthma patients/parents may contribute to the outlining of realistic goals for multidisciplinary interventions in healthcare settings and evaluate its cost–effectiveness.

Mapping the caregiving process in paediatric asthma: Parental burden, acceptance and denial coping strategies and quality of life.

Based on a multidimensional model of the caregiving process, the main goal of this study was to examine the direct and indirect links, via acceptance and denial coping, between the caregiving burden and the quality of life (QoL) in parents of children with asthma. The sample was composed of 182 parents of a child/adolescent between 8 and 18 years of age with a clinical diagnosis of asthma. Data were obtained via self-report questionnaires assessing the caregiving burden, acceptance and denial coping strategies and QoL. Results from structural equation modelling indicated a good fit for the mediation model, which explained 30% of the variability of the parents’ QoL. Higher levels of caregiving burden were negatively and indirectly associated with the parents’ QoL, via less use of acceptance and greater use of denial coping strategies. Multigroup analyses ascertained the invariance of these links across the children’s asthma severity, age and socio-economic groups. These findings emphasise acceptance and denial as important coping mechanisms in the caregiving process. Thus, broad-spectrum family-centred interventions in paediatric asthma settings can target the development of the parents’ coping tendencies characterised by greater acceptance and less denial as a way of reappraising caregiving demands as less burdensome and improving their QoL.

Applying a developmental approach to quality of life assessment in children and adolescents with psychological disorders: challenges and guidelines

Research on the quality of life (QL) of children/adolescents with psychological disorders has flourished over the last few decades. Given the developmental challenges of QL measurements in pediatric populations, the aim of this study was to ascertain the extent to which a developmental approach to QL assessment has been applied to pedopsychiatric QL research. A systematic literature search was conducted in three electronic databases (PubMed, PsycINFO, SocINDEX) from 1994 to May 2014. Quantitative studies were included if they assessed the self- or proxy-reported QL of children/adolescents with a psychological disorder. Data were extracted for study design, participants, QL instruments and informants, and statistical approach to age-related specificities. The systematic review revealed widespread utilization of developmentally appropriate QL instruments but less frequent use of both self and proxy reports and an inconsistent approach to age group specificities. Methodological guidelines are discussed to improve the developmental validity of QL research for children/adolescents with mental disorders.

The Portuguese DISABKIDS Asthma Module: a global index of asthma-specific quality of life for children and adolescents

Abstract Background: The KIDSCREEN and DISABKIDS questionnaires constitute a modular system for assessing the health-related quality of life (HrQoL) of children/adolescents. Objective: This study was aimed at examining the factorial structure of the Portuguese patient- and parent-reported versions of the DISABKIDS-Asthma Module (AsM) and its invariance across age groups and informants, as well as to examine their reliability and construct validity. Methods: The sample included 140 children/adolescents aged 8–18 years, who were diagnosed with asthma, and one of their parents. Both family members assessed HrQoL at the generic (KIDSCREEN-10), chronic-generic (DISABKIDS-12) and asthma-specific (DISABKIDS-AsM) levels. Asthma severity was classified by physicians using Global Initiative for Asthma (GINA) guidelines. Results: Confirmatory factor analysis attested the factorial validity of the correlated two-factor model of the DISABKIDS-AsM, but the low average variance extracted by each factor (Impact and Worry) suggested that a one-factor structure would better fit the Portuguese data. The one-factor model had an acceptable fit (χ2/df = 1.97; comparative fit index = 0.94; root mean square error of approximation = 0.08) and was invariant between age groups (children vs. adolescents) and informants (patient-reports vs. parent-reports). The resulting global index of asthma-specific HrQoL presented good reliability and convergent validity with the generic and chronic-generic measures. The DISABKIDS instruments also detected significant differences in HrQoL regarding asthma severity groups. Conclusions: The DISABKIDS-AsM may be regarded as a specific one-dimensional questionnaire, which, besides suiting pediatric patients in different developmental stages and enabling reliable proxy-reports, is sensitive to asthma clinical characteristics and is cross-culturally comparable, thus representing a valuable tool for assessing asthma-specific HrQoL as a primary health outcome in clinical practice and research contexts.

Does the small fit them all? The utility of Disabkids-10 Index for the assessment of pediatric health-related quality of life across age-groups, genders, and informants

The objective of this study was twofold: First, to conduct a confirmatory factor analysis of the Portuguese versions of Disabkids-10; and second, to examine potential differences in factor structures between age-groups, genders, and informants. The sample included 293 school-aged children and adolescents with chronic health conditions and 197 parents. Both family members (whenever possible) completed the self- and proxy-report versions of Disabkids-10. The factorial model of Disabkids-10 had good fit for self-reported data and minimally acceptable fit for proxy-reported data. The multigroup analyses confirmed the model invariance across age-groups (children vs. adolescents), genders (boys vs. girls), and informants (children vs. parents). The generic developmental applicability of these questionnaires makes them recommended for health care routine assessments on pediatric intervention needs and outcomes.

Social support and adaptation outcomes in children and adolescents with cerebral palsy

Abstract Objectives: This study had two main objectives: first, to describe the social support and psychological maladjustment of children and adolescents with cerebral palsy (CP); and second, to test a mediation model where psychological maladjustment was hypothesized to mediate the link between social support and health-related quality of life (HRQL). In addition, the moderating role of gender and age was examined for this mediation model. Methods: Self- and proxy-report questionnaires on the aforementioned variables were administered to a sample of 96 children/adolescents with CP and 118 healthy controls, as well as one of their parents. Univariate and multivariate analyses of covariance were conducted to examine differences in social support and psychological maladjustment, respectively. PROCESS computational tool was used for path analysis-based mediation, moderation and moderated mediation analyses. Results: Children/adolescents with CP reported lower levels of social support than their healthy peers, but no significant differences emerged in terms of their psychological maladjustment. For children/adolescents with CP, internalizing and externalizing problems were found to mediate the link between social support and HRQL, and these indirect effects were not conditional upon age or gender. Discussion: Children and adolescents with CP are likely have more negative perceptions of social support, but not necessarily more psychological adjustment problems than their healthy, able-bodied peers. Results further suggest that interventions targeting social support perceptions may positively affect HRQL outcomes in children/adolescents with CP, through the improvement of internalizing and externalizing dimensions of their psychological adjustment. Implications for Rehabilitation Social support perceptions are important intervention targets in psychosocial rehabilitation with children and adolescents with CP. Children and adolescents with CP do not necessarily present increased psychological maladjustment. Interventions targeting these children and adolescents’ social support may promote their psychological adjustment and health-related quality of life. Developmental specificities, such as age and gender differences, should be considered when planning and implementing psychosocial interventions.