Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes

Abstract

With an increasing number of paediatric quality of life (QOL) instruments being developed, it is becoming difficult for researchers and clinicians to select the most appropriate instrument. Reviews of QOL instruments tend to report only basic properties of the instruments such as domains and psychometric properties. This paper seeks to appraise critically the conceptual underpinnings of paediatric QOL instruments. A systematic review was conducted to identify QOL instruments for children aged 0 to 12 years, and to examine and compare their conceptual frameworks, definitions employed, and structure. Both generic and condition-specific measures were reviewed. Fourteen generic and 25 condition-specific QOL instruments were identified. Eleven types of definition of QOL and health-related QOL and three theories of QOL were identified. QOL was measured by a variety of domains including emotional, social and physical health, and well-being. Items commonly assessed difficulties, or intensity/frequency of feelings/symptoms, in contrast to positive aspects of life and happiness. The findings highlight the diversity that is apparent in the conceptualization of paediatric QOL and draw attention to the lack of empirical evidence for many of the fundamental assumptions. The impact of the conceptual underpinnings of the instruments on the resulting QOL scores is discussed.

Brief Assessment of Parental Perception (BAPP): Development and validation of a new measure for assessing paediatric outcomes after bilateral cochlear implantation

“…Consistent with recommendations in the QoL literature (Davis at al., 2007) items were selected which assessed well-being rather than ill-being. For example, an item was worded "getting on with friends and family" as opposed to "problems with relationships with friends and family".…”

Quality of life and health‐related quality of life of adolescents with cerebral palsy

“…During the past decade there has been a growing interest in concepts and measures associated with quality of life (QOL). Discussion continues about the meaning of various constructs of QOL, 1 as people work to describe the important conceptual variations among terms such as functional status, health status, and health-related quality of life (HRQOL). Livingston et al 2 have reviewed the literature that reports various aspects of well-being among adolescents with CP.…”

Avaliação da Qualidade de Vida Infantil: O Inventário Sistémico de Qualidade de Vida para Crianças

“…Contudo, subsistem difi culdades quanto à sua conceptualização e avaliação. De um modo geral, a literatura evidencia um pobre desenvolvimento de modelos teóricos subjacentes aos instrumentos de avaliação da qualidade de vida infantil (e.g., Davis et al, 2006).…”

“…Contudo, subsistem difi culdades quanto à sua conceptualização e avaliação. De um modo geral, a literatura evidencia um pobre desenvolvimento de modelos teóricos subjacentes aos instrumentos de avaliação da qualidade de vida infantil (e.g., Davis et al, 2006).A avaliação da qualidade de vida infantil apresenta determinadas especifi cidades metodológicas. Desde logo, uma questão central prende-se com a utilização de instrumentos de auto ou de heteroavaliação.…”

“…Uma revisão desses instrumentos (Bullinger & Ravens-Sieberer, 1995;Connolly & Johnson, 1999;Davis et al, 2006;Eiser & Morse, 2001a, 2001bLevi & Drotar, 1998;Matza et al, 2004;Raat, Mohangoo, & Grootenhuis, 2006;Schmidt, Garratt, & Patrick, 2002;Spieth & Harris 1996) (Dupuis, Taillefer, Rivard, Roberge, & St-Jean, 2001). Trata-se de uma medida genérica de autoavaliação da qualidade de vida, à qual podem ser acrescentados módulos específi cos para a avaliação da qualidade de vida em determinadas doenças (e.g., cancro, asma, obesidade), tornando-se assim um instrumento modular.…”