Health-related quality of life in children with specific learning disability: children's self-reports versus parents' proxy reports

Abstract

Dear Editor, I read with great interest the timely review article by Eiser and Varni and agree that it is necessary to evaluate both children's self-reports and parents' proxy reports to determine the healthrelated quality of life (HRQOL) of children [1]. However, it may not be possible to follow their dictum that both child and parent HRQOL instruments should necessarily measure the same constructs with parallel items in order to make comparisons between self and proxy reports more meaningful [1]. To explain this, I would like to share my team's experience while documenting the HRQOL of children with newly diagnosed specific learning disability (SpLD). In the years 2005–2006, we documented the HRQOL of these children using the Child Health Questionnaire-Parent Form 50 [5]. These parents' proxy reports revealed that their HRQOL was significantly compromised in several psychosocial (role/social limitations as a result of emotional–behavioural problems, general behaviour, and mental health) and physical (physical functioning, role/social limitations as a result of physical health and general health perceptions) domains of health; and in both summary scores with psychosocial > physical [4]. However, we were unable to simultaneously document these children's self-reports as the equivalent child version, namely, the Child Health QuestionnaireChild Form 87 was designed to be completed without interviewer assistance [5], and was too difficult for them to complete, due to their limited reading ability. Subsequently, in the year 2008, with a different study sample, we were able to document the self-reported HRQOL of children with newly diagnosed SpLD by using the selfreport long version of the DISABKIDS chronic generic module instrument, namely the DCGM-37-S [2, 6]. This was possible as the developers of the DCGM-37-S permit the interviewer to offer assistance to read out the question and explain before a child marks his/her response [6]. Their selfreported HRQOL revealed that they perceive their psychosocial, physical, and overall HRQOL to be significantly compromised (social exclusion > emotion > limitation > treatment > independence > social inclusion) [2]. Although we utilised instruments with different constructs, these data helped identify specific domains which guided us to develop counselling strategies to help improve their HRQOL [2, 4]. Lastly, I would like to add to the review by Eiser and Varni [1] by mentioning that evaluating both children's self-reports and parents' proxy reports can reveal contradictory but useful perceptions of the impact of comorbidity. Contrary to parent proxy reports [4], children with newly diagnosed SpLD having comorbid “untreated” attention-deficit/hyperactivity disorder (ADHD) did not perceive their comorbidity to further adversely affect their HRQOL [3]. This information was utilised by us to allay the anxieties of parents who otherwise get overwhelmed coping up when their child has such a dual diagnosis, namely, SpLD + ADHD [3].