Measuring Health-Related Quality of Life in Children and Adolescents: Implications for Research and Practice

By Dennis Drotar | Go to book overview

ers/the child herself in 59% of our sample and could have relevance to the development of obsessive compulsive disorder, which we have seen in older adolescents with TS.

Psychosocial interventions to help girls with TS become better adjusted during adolescence are much needed. In our view, to be effective, such help must be based on a comprehensive understanding of the cognitive deficits associated with the condition that contributes to impairments of social interaction. Our clinical observations suggest that many girls are neglected by their peers, or even actively avoided, because of their irritating habit of dominating conversations. In addition, they fail to respond appropriately to verbal and nonverbal cues that most children have no difficulty interpreting ( Skuse et al., 1997).

These observations and the present data have both research and clinical implications. For example, it would be important to conduct detailed observational studies of the interactions of girls with TS and their peers to identify specific deficits that may affect their integration into their group. Moreover, interventions that ameliorate the impact of these girls' cognitive deficits on their peer relationship (e.g., social skills training) would be potentially important to enhance their QOL.


ACKNOWLEDGMENTS

This research was supported by the Wellcome Trust and the Child Growth Foundation. Compilation of the national register of Turner syndrome was supported by the British Society for Pediatric Endocrinology and by Pharmacia Ltd. Specific assistance was given by Elinore Percy; Gina Aamodt-Leeper, Monique Bacarese-Hamilton, Catharine Creswell, Rhona McGurk, and Jennifer Smith from the Behavioural Sciences Unit, Institute of Child Health, London. Dorothy Bishop from the Medical Research Council's Applied Psychology Unit in Cambridge assisted in the neuropsychological testing of our subjects. Professor Patricia Jacobs and her colleagues at the Wessex Regional Genetics Laboratory undertook the genetic analyses; we are grateful to her and to Rowena James, Brian Coppin, Paola Dalton, Monica Power, and David Robinson. We are especially grateful to those pediatric consultants who assisted with the recruitment of patients, and we thank all the subjects of our investigation and their families for the time they generously gave to us.


REFERENCES

Achenbach, T. M. ( 1991a). Manual for the Child Behavior Checklist/4-18 and 1991 Profile. Burlington: University of Vermont.

Achenbach, T. M. ( 1991b). Manual for the Youth Self-Report Form and 1991 Profile. Burlington: University of Vermont.

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