Article

Quality of life assessment in preterm children: physicians' knowledge, attitude, belief, practice - a KABP study.

BMC Pediatrics (Impact Factor: 1.92). 04/2013; 13(1):58. DOI: 10.1186/1471-2431-13-58
Source: PubMed

ABSTRACT BACKGROUND: The sequelae of extremely preterm birth have an impact on the quality of life (QoL) of these children. Standardized assessment of their QoL is rarely done in France. The aim of this study is to examine among all the types of physicians involved in the management of children born extremely preterm, their knowledge, use in routine practice and expectations concerning QoL assessment of these children using standardized questionnaires. METHODS: Prospective survey among heads of obstetric, neonatal medicine and paediatric neurology departments, by means of questionnaires. Two qualitative methods were used: focus groups and Delphi method. RESULTS: Seventy-eight physicians participated (obstetricians 24%, neonatologists 58%, paediatric neurologists 18%). The physicians considered QoL a relevant concept which they assessed subjectively. They expressed a need for information on methods of assessment. An ideal QoL questionnaire was described. Expectations regarding availability of QoL data were expressed from a medical, family and societal perspective. The impact of QoL measurement on the ethical aspect of decision-making was approached, in particular the potential impact of this tool on the decision made. Expectations were found to differ between specialties. CONCLUSION: This original study reports the perspective of experts on taking into consideration the QoL of children born extremely preterm. This is a subjective notion that is difficult to implement and which may influence therapeutic choices.

0 Bookmarks
 · 
82 Views
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Little is known about the quality of life (QoL) of disabled children. We describe self-reported QoL of children with cerebral palsy, factors that influence it, and how it compares with QoL of the general population. 1174 children aged 8-12 years were randomly selected from eight population-based registers of children with cerebral palsy in six European countries and 743 (63%) agreed to participate; one further region recruited 75 children from multiple sources. Researchers visited these 818 children. 318 (39%) with severe intellectual impairment could not self-report; 500 (61%) reported their QoL using KIDSCREEN, an instrument with scores in ten domains, each with SD=10. Multivariable regression was used to relate QoL to impairments, pain, and sociodemographic characteristics. Comparisons were made with QoL data from the general population. Impairments were not significantly associated with six KIDSCREEN domains. Comparison of least and most able groups showed that severely limited self-mobility was significantly associated with reduced mean score for physical wellbeing (7.6, 95% CI 2.7-12.4); intellectual impairment with reduced mean for moods and emotions (3.7, 1.5-5.9) and autonomy (3.3, 0.9-5.7); and speech difficulties with reduced mean for relationships with parents (4.5, 1.9-7.1). Pain was common and associated with lower QoL on all domains. Impairments and pain explained up to 3% and 7%, respectively, of variation in QoL. Children with cerebral palsy had similar QoL to children in the general population in all domains except schooling, in which evidence was equivocal, and physical wellbeing, in which comparison was not possible. Parents can be reassured that most children aged 8-12 years with cerebral palsy will have similar QoL to other children. This finding should guide social and educational policy to ensure that disabled children participate fully in society. Because of its association with QoL, children's pain should be carefully assessed.
    The Lancet 07/2007; 369(9580):2171-8. · 39.21 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: BACKGROUND: Pediatric rehabilitation considers Family-centered service (FCS) as a way to increase participation of children with a physical disability in daily life. An important principal is that parents greatly contribute to their childs participation at school, at home, and in the community. However, it is unclear what kind of information is available from literature about what parents actually do to support their childs participation and what problems and needs they experience? Hence, the aim of this study was to provide an overview of the actions, challenges, and needs of parents in enabling participation of their child with a physical disability that is neurological and non-progressive in nature. METHODS: Scoping review with extensive literature search (September 2011) and a thematic analysis to synthesize findings. RESULTS: Fourteen relevant articles revealed two major themes: parents enable and support performance of meaningful activities and parents enable, change and use the environment. Each theme holds a number of actions (e.g. choosing the right type of meaningful activities for facilitating social contacts) and challenges (e.g. negative attitudes of other people). Less information is available about the needs of parents. CONCLUSIONS: This study indicates that parents apply a broad range of strategies to support participation of their children. They experience many challenges, especially as a result of constraints in the social and physical environments. However, this review also shows that little is known about needs of parents in facilitating participation. As Family-centered service (FCS) philosophy is all about the needs of the child and the family, it is essential to further investigate the needs of the parents and to understand if and to what extent they wish to be supported in enabling their childs participation in daily life.
    BMC Pediatrics 11/2012; 12(1):177. · 1.92 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: The term "quality of life" first surfaced in 1920, but it was not until the 1960s that it came to public notice in North America. This article describes the history of quality of life assessment, discusses its current status, and suggests challenges for the future. The development of generic measures began in the early 1970s and continues today. Disease-specific measures have also proliferated. The 1980s and 1990s saw an increase in methodological rigor, and additional emphasis on analytic approaches, interpretation of scale scores, cultural and language issues, as well as on the development of shorter measures. Future challenges include conceptualization and testing of theoretical models, further refinement of individualized measures for use in routine clinical practice, the use of computer adapted testing in quality of life assessment, and the inclusion of quality of life information in health databases.
    Journal of Clinical Epidemiology 05/1999; 52(4):355-63. · 5.48 Impact Factor

Preview (3 Sources)

Download
1 Download
Available from