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The Gothenburg anorexia nervosa study

Participants: Elisabet Wentz, Maria Råstam, Christopher Gillberg, Carina Gillberg, Henrik Anckarsäter & Eva Billstedt.

The Gothenburg anorexia nervosa study (GAN) is a prospective longitudinal study of teenage-onset anorexia nervosa (AN), that has reported the outcome in AN over a period of 18 years. The study is the only one in the world to prospectively follow a representative sample of individuals with teenage-onset anorexia nervosa compared with matched comparison individuals for that duration of time. There has been no attrition.

The GAN study was initiated by Maria Råstam and Christopher Gillberg in 1985, with the aim of conducting an epidemiological study on teenage-onset AN. All individuals born in 1970 who in 1985 were living in Gothenburg and had/had had AN were identified. 25 individuals (23 girls and two boys) were found. One girl participated in the screening stage only, leaving 24 individuals to make up the population-based group. The population group was pooled with another population screening sample of anorexia nervosa cases (26 girls, one boy), reported to the research team mainly by school health nurses and doctors during follow-up of the original population group. Almost all of these individuals were born in 1971–1974. The population-based group and the referred group were compared with regard to various outcome measures. They proved to be similar regarding all aspects except the amount of treatment received. The two groups were therefore put together, resulting in a merged group consisting of 51 individuals with AN (48 girls and three boys). All of the individuals fulfilled DSM-III-R and DSM-IV criteria for anorexia nervosa. Gothenburg school health nurses engaged in the AN screening, were asked to select age-, sex- and school-matched controls with no history of eating disturbances. The comparison group also consisted of 51 individuals; 48 girls and three boys. The AN group and the comparison group have been examined on four occasions, initially at 16 years of age and subsequently in follow-up studies at 21, 24 and 32 years of age.

The epidemiological study showed that the prevalence of AN at 15 years of age was 0.7 %. The accumulated population prevalence for AN up to 18 years of age was 1.08 % for girls and 0.09 % for boys, equivalent to a girl:boy ratio of 11.6:1.

The assessment at 16 years of age showed that half of the AN group had had obsessive compulsive traits with onset before AN onset. Major life events were considered predictors of AN onset in one fifth of the cases. While ill with AN most individuals in the AN group suffered from dysphoria. Diadochokinesis, a neurological examination that measures motor skills and coordination, showed that the AN group was overrepresented regarding inability to perform rapid, alternating movements, so called dysdiadochokinesis.

In the assessment at 21 years of age only three individuals (6 %) still had AN, but 41 % had a persisting eating disorder, in most cases bulimia nervosa. Dysdiadochokinesis was still overrepresented in the AN group. Among psychiatric disorders, obsessive-compulsive disorder and affective disorders, such as major depression, were more common in the AN group. Personality disorders, particularly obsessive-compulsive and avoidant personality disorder, were also more common in the AN group. In the AN group, 20 % were considered to have an autism spectrum disorder (ASD), a diagnosis that only occurred in the AN group. General cognitive ability was comparable between the two groups, but the AN group performed significantly lower on the object assembly test, indicating problems with central coherence. Subgroups with ASD had a general cognitive ability profile largely similar to that seen in ASD. Measuring the cerebral blood flow using SPECT (Single Photon Emission Computed Tomography), hypoperfusion was detected in the frontal and temporal lobe of individuals who had recovered from AN.

At a mean age of 24 years, ten years after AN onset, three individuals still had AN and one in four in the AN group had some type of eating disorder. Somatic problems were significantly more common in the AN group. Hirsutism - i.e. male hair growth on the face and body - occurred in 12 % of the women in the AN group, and occurred only in this group. Bone mineral density (BMD) and body composition were examined. Although the AN group did not deviate in terms of BMI, their mean percentage of body fat was significantly lower than that of the comparison group. Low BMD, so called osteopenia, was common in both groups, but the groups did not differ significantly. When the BMD was followed up four years later, individuals with osteopenia in the AN group had increased their BMD significantly.

At the 18-year follow-up, where the participants had a mean age of 32 years, the mortality was zero in both groups. Psychiatric disease was common in the AN group and was prevalent in 39 % of the individuals. A few individuals had a persisting eating disorder (six individuals in total, half of whom had AN). The average duration of AN was 3.4 years and the total duration of eating disorders (including the anorexia nervosa period) in the anorexia nervosa group was, on average, 7.5 years. Reproduction rates were comparable to those of the comparison group without a history of AN. In the AN group the mothers were significantly younger at the birth of their first child. Children in the AN group had significantly lower birth weight than the children in the comparison group. One group had been considered to meet the criteria for ASD at all four assessments. This group consisted of 12 % and had a very poor outcome regarding AN duration and psychosocial function. Low age at AN onset, obsessive-compulsive personality disorder and autistic traits predicted an unfavourable outcome with regard to psychosocial functioning and AN duration. One in four were on disability benefits or had been signed off sick owing to psychiatric problems including eating disorder.

Articles:

2014
Witt, A.A., Berkowitz, S.A., Gillberg, C., Lowe, M.R., Råstam, M., & Wentz, E. (2014). Weight Suppression and Body Mass Index Interact to Predict Long-Term Weight Outcomes in Adolescent-Onset Anorexia Nervosa. Journal of Consulting and Clinical Psychology, (Epub ahead of print).

2012
Anckarsäter, H., Hofvander, B., Billstedt, E., Gillberg, I.C., Gillberg, C., Wentz, E., & Råstam, M. (2012). The sociocommunicative deficit subgroup in anorexia nervosa: autism spectrum disorders and neurocognition in a community-based, longitudinal study. Psychological Medicine, 42, 1957-1967.

Wentz, E., Gillberg, I.C., Anckarsäter, H., Gillberg, C., & Råstam, M. (2012). Somatic problems and self-injurious behaviour 18 years after teenage-onset anorexia nervosa. European Child & Adolescent Psychiatry, 21, 421-432.

2010
Gillberg, I.C., Billstedt, E., Wentz, E., Anckarsäter, H., Råstam, M., & Gillberg, C. (2010). Attention, executive functions, and mentalizing in anorexia nervosa eighteen years after onset of eating disorder. Journal of Clinical and Experimental Neuropsychology, 32, 358-365.

2009
Wentz, E., Gillberg, I.C., Anckarsäter, H., Gillberg, C., & Råstam, M. (2009). Adolescent onset anorexia nervosa- Missing half of the story? British Journal of Psychiatry, 194, 565.

Wentz, E., Gillberg, I.C., Anckarsäter, H., Gillberg, C., & Råstam, M. (2009). Adolescent-onset anorexia nervosa: 18-year outcome. British Journal of Psychiatry, 194, 168-174.

Wentz, E., Gillberg, I.C., Anckarsäter, H., Gillberg, C., & Råstam, M. (2009). Reproduction and offspring status 18 years after teenage-onset anorexia nervosa--a controlled community-based study. International Journal of Eating Disorders, 42, 483-491.

2007
Gillberg, I.C., Råstam, M., Wentz, E., & Gillberg, C. (2007). Cognitive and executive functions in anorexia nervosa ten years after onset of eating disorder. Journal of Clinical and Experimental Neuropsychology, 29, 170-178.

Wentz, E., Mellström, D., Gillberg, I.C., Gillberg, C., & Råstam, M. (2007). Brief report: Decreased bone mineral density as a long-term complication of teenage-onset anorexia nervosa. European Eating Disorders Review, 15, 290-295.

2005
Wentz, E., Gillberg, I.C., Gillberg, C., & Råstam, M. (2005). Fertility and history of sexual abuse at 10-year follow-up of adolescent-onset anorexia nervosa. International Journal of Eating Disorders, 37, 294-298.

2003
Råstam, M., Gillberg, C., & Wentz, E. (2003). Outcome of teenage-onset anorexia nervosa in a Swedish community-based sample. European Child & Adolescent Psychiatry, 12 Suppl 1, I78-I90.

Wentz, E., Mellström, D., Gillberg, C., Sundh, V., Gillberg, I.C., & Råstam, M. (2003). Bone density 11 years after anorexia nervosa onset in a controlled study of 39 cases. International Journal of Eating Disorders, 34, 314-318.

2002
Westberg, L., Bah, J., Råstam, M., Gillberg, C., Wentz, E., Melke, J., . . . Eriksson, E. (2002). Association between a polymorphism of the 5-HT2C receptor and weight loss in teenage girls. Neuropsychopharmacology, 26, 789-793.

2001
Råstam, M., Bjure, J., Vestergren, E., Uvebrant, P., Gillberg, I.C., Wentz, E., & Gillberg, C. (2001). Regional cerebral blood flow in weight-restored anorexia nervosa: a preliminary study. Developmental Medicine and Child Neurology, 43, 239-242.

Wentz, E., Gillberg, C., Gillberg, I.C., & Råstam, M. (2001). Ten-year follow-up of adolescent-onset anorexia nervosa: psychiatric disorders and overall functioning scales. Journal of Child Psychology and Psychiatry, 42, 613-622.

2000
Ivarsson, T., Råstam, M., Wentz, E., Gillberg, I.C., & Gillberg, C. (2000). Depressive disorders in teenage-onset anorexia nervosa: a controlled longitudinal, partly community-based study. Comprehensive Psychiatry, 41, 398-403.

Wentz, E., Gillberg, I.C., Gillberg, C., & Råstam, M. (2000). Ten-year follow-up of adolescent-onset anorexia nervosa: physical health and neurodevelopment. Developmental Medicine and Child Neurology, 42, 328-333.

1999
Nilsson, E.W., Gillberg, C., Gillberg, I.C., & Råstam, M. (1999). Ten-year follow-up of adolescent-onset anorexia nervosa: personality disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 38, 1389-1395.

1998
Nilsson, E.W., Gillberg, C., & Råstam, M. (1998). Familial factors in anorexia nervosa: a community-based study. Comprehensive Psychiatry, 39, 392-399.

1997
Råstam, M., Gillberg, C., Gillberg I.C., & Johansson, M. (1997). Alexithymia in anorexia nervosa: a controlled study using the 20-item Toronto Alexithymia Scale. Acta Psychiatrica Scandinavica, 95, 385-388.

1996
Gillberg, I.C., Gillberg, C., Råstam, M., & Johansson, M. (1996). The cognitive profile of anorexia nervosa: a comparative study including a community-based sample. Comprehensive Psychiatry, 37, 23-30.

Råstam, M., & Gillberg, C. (1996). Anorexia nervosa rates--conclusions for the wrong reasons. British Journal of Psychiatry, 168, 251-252.

1995
Gillberg, I.C., Råstam, M., Gillberg, C. (1995). Anorexia nervosa 6 years after onset: Part I. Personality disorders. Comprehensive Psychiatry, 36, 61-69. 

Page Manager: Anna Spyrou|Last update: 9/17/2014
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