Shearer, Joanna; (2002) The nature and prevalence of eating disorders and eating disturbance in adolescents with cystic fibrosis. Doctoral thesis (D.Clin.Psy), UCL (University College London).

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Abstract

This study surveyed the nature and prevalence of eating disorders and eating disturbance in adolescents with Cystic Fibrosis (CF). CF is an incurable, genetic disorder that is associated with respiratory and digestive problems and consequently inadequate nutrition and poor growth. Good nutrition is considered vital as low weight has a detrimental aid potentially fatal impact upon health status in the CF population. Research has consistently revealed eating difficulties throughout childhood in the population but few studies have examined formal eating disorders or eating disturbance in adolescents with CF, despite clear evidence to support the notion of a developmental continuum between eating disturbance and eating disorders in the general population. Previous studies appear to have a number of methodological limitations, particularly the use of self-report measures, which are unable to provide formal diagnoses, making it difficult to draw any firm conclusions. Because adolescents with CF appear to experience many of the risk factors that have been documented within the eating disorder literature and because eating disorders pose a particular threat to their longevity, this issue requires clarification. This study aimed to improve on previous research designs by utilising a semi-structured interview designed to assess and diagnose eating disorders in an adolescent population. 55 participants aged between 11 and 17 years completed the Harter/Hoare Self-Esteem Questionnaire and the Child Version of the Eating Disorder Examination. Demographic and health status information were obtained for all participants and for those who did not wish to participate. Results revealed that none of the participants met all of the criteria for either Anorexia Nervosa or Bulimia Nervosa. However one male participant met the diagnosis for Eating Disorder Not Otherwise Specified. Eating Disturbance appeared to be prevalent within this sample, irrespective of whether or not puberty had been reached. 16% of participants, some of whom were under weight, were attempting to lose weight or avoid weight gain whilst the majority of the sample described concerns relating to their body shape or weight. There were no significant differences in gender or health status between those with or without eating disturbance but there were significant differences in self-esteem and in shape and weight concerns. Results reveal that both pre and post pubertal male and female adolescents with CF have eating disturbance, which does not necessarily reflect their weight or their health status. This sample may be at risk of developing eating disorders in the future, particularly when they gain more independence and their eating is not monitored as closely by their parents. Patients appear to develop eating disturbance from a young age, which suggests that CF centres should attempt to work systemically to facilitate healthy eating attitudes and behaviours in patients from an early age.

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