Assessing quality of life of children with chronic health conditions and disabilities: a European approach

Abstract

Quality of life has been used as a synonym for a subject-centred or individually appraised perspective on health. Despite the increase in quality of life research in adults, quality of life in children is relatively neglected. While generic measures begin to emerge now, methods to assess the quality of life of children with chronic conditions are still in development. The design of such an assessment tool for different age groups and different levels of disabilities is the objective of a European-Union-funded study: the DISABKIDS project. In addition, it addresses the psychosocial determinants of quality of life in children with disabilities. A major aim of the project is to develop and test instruments for children and adolescents with disabilities (as well as for their families) in seven countries, to assess the impact of the chronic health conditions on quality of life and to provide a tool for systematic monitoring of the quality of care given to children with disabilities. Assessment and monitoring will allow identification of unmet health care needs and, it is hoped, ultimately, the fostering of the development of effective intervention strategies.

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

“…The DISABKIDS project was originally funded by the programme "Quality of Life and Management of Living Resources" (Fifth Framework of the European Union), with its main goal being the development and promotion of the use of standardized instruments to assess HRQL in children and adolescents with chronic conditions (Bullinger, Schmidt, Petersen, & The Disabkids Group, 2002). This project enabled the construction and testing of a battery of instruments, which is now generally called "The DISABKIDS Questionnaires".…”

“…The interpretation of results from the present study must take into account its major limitations: first, the obtained convenience clinical sample mainly included individuals with moderate to severe health conditions and from lower economic backgrounds, demonstrating discrepancies in frequency distribution for clinical (severity) and socio-demographic (SES) variables, which have been extensively reported to influence paediatric adaptation outcomes (Bullinger, Schmidt, Petersen, & The Disabkids Group, 2002); second, interaction effects between clinical and demographic variables were not explored, even if that analysis was not among this study aims; third, the stratification of analyses for two age groups suited the sample size, but it could be further refined by testing, for instance, three groups of children (8-11), preadolescents (12-14) and adolescents (15-18).…”

Children and adolescents on hemodialysis: attributes associated with quality of life

“…However, there are still few or inexistent, depending on the country, validated instruments to use in this population, mainly justified by the difficulties to build tools directed to this age group with this specific intention (2)(3) . Therefore, the development of a proper instrument to adequately represent domains and dimensions that are relevant for this group is needed, which, however, have been identified for adult clientele.…”

Comparison of the self and the proxy versions of the KIDSCREEN quality of life scale: To what extend can parents predict quality of life of their children?

“…Özellikle izleme dayalı tıbbi girişimler ve rutin sağlık hizmetlerinde, algılanan sağlık durumunu yansıtan hasta merkezli Sağlıkla İlişkili Yaşam Kalitesi (SYK) sonuçlarının değerlendirilmesi şiddetle önerilmekte-dir (1)(2)(3)(4)(5) . Birey merkezli değerlendirmenin iki özel sonucundan birisi değerlendirmenin öznel olması, diğeri ise çok boyutlu bir bakış açısının yer almasıdır.…”

“…Çocuklar için genel ve hastalığa özel olarak üreti-len birçok SYK ölçeğine karşın kültürler arası karşı-laştırılabilir ve aynı zamanda geliştirildiği kültürün özelliklerini de yansıtabilen bir ölçeğe olan gereksinim nedeniyle Avrupa'da 13 ülkenin katıldığı çok merkezli bir ölçek geliştirme projesi yürütülmüştür (11)(12)(13) . Bu projede hem genel amaçlı SYK ölçeği KIDSCREEN hem de hastalık ve kronik duruma özel ölçek olan DISABKIDS geliştirilmiştir (5,14) . Modern test tekniklerinin kullanıldığı ve kültürler arası geçer-liliği yapılan KIDSCREEN (13,15) sonradan geçerlilik çalışması ile kültürlerine uyarlanan ülkeler ile toplamda 38 dilde geçerlilik çalışması yapılmış, 50'nin üzerinde klinik ve epidemiyolojik araştırmada kullanılmıştır (16) .…”