Health Related Quality of Life for Patients With Anorexia Nervosa in Denmark.

INTRODUCTION Anorexia nervosa (AN) is an eating disorder of unknown etiology. The evidence base for treatment is still very limited considering the extent to which this disorder erodes lives and still carries the highest fatality rate of any psychiatric disease as well as any other chronic disease in adolescence.

There is no consensus on appropriate effect goals in AN. Assessment of biomedical parameters alone is not sufficient, why evaluation tools that consider the patient's own perception of their health and well-being are essential. However, patients with AN characteristically have a different opinion of their needs to that of the health professionals, which can lead to differences in treatment goals, ambivalence towards treatment, and immense compliance difficulties.

Health-related quality of life (HRQOL) can be defined as the overall effect of a medical condition and/or its consequent therapy upon a patient. HRQOL is subjective and multidimensional, encompassing physical and occupational function, psychological state, social interaction and somatic sensation. Discrepancy between one's current level of function and one's ideals or expectations can result in lower self-rated HRQOL, while cognitive flexibility is believed to contribute to good HRQOL. Patients with AN typically have unrealistically high expectations of themselves, are often rigid and usually do not consider weight gain to be a necessity for a positive outcome. Therefore, treatment may potentially lead to further reduction of HRQOL (for example due to coerced hospitalization), despite significant positive improvements in biomedical parameters.

In a recently published meta-analysis examining the HRQOL of patients with eating disorders, several methodological challenges were identified such as variations in study design, diagnostic criteria and health outcome measurement. It is essential that HRQOL measures are valid and reliable for the patient group in question. These measures can be either generic (applicable to all patient groups) or disease-specific (designed to detect HRQOL changes specific to a disease).

Only a few disease-specific HRQOL measures for AN have been developed. The Eating Disorder Quality of Life (EDQLS) questionnaire was published by a Canadian research group and consists of 40 items on selected topics including relationships with family and others, physical and psychological health and eating. Subsequent studies have shown that the EDQLS demonstrates excellent psychometric properties in terms of validity, reliability and responsiveness to change.