Adolescent-onset anorexia nervosa in the acute phase and after 30 years

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First of all, I wonder if you could tell me a bit about yourself? 

I am a trained psychologist and graduated from Mid Sweden University in 2013, after which I did my PTP placement at the Anorexia and Bulimia Clinic (now called the Eating Disorders Centre for Children and Young Adults), Queen Silvia Children's Hospital, Sahlgrenska University Hospital. After the PTP year, I was employed there as a licensed psychologist and after a couple of years of clinical work, I had the opportunity to start researching part-time. Clinically, I work mainly in the treatment of adolescents and young adults with eating disorders. My treatment focus is Cognitive Behavioural Therapy (CBT) but I also have further training in Interpersonal Therapy (IPT).  

How did you become interested in research? What issues interest you? 

My interest in research was sparked during my psychology training when I was doing my thesis, I enjoyed the process of planning a study, collecting and analysing data and synthesising the results. It gave me a taste for research. The next step was to apply for a research PTP position where I could work on a research project half-time while working clinically and gaining experience with the eating disorder patient group. Being able to investigate issues raised in clinical work in a scientific way added an extra dimension to the psychology profession. Clarifying and better understanding the links between eating disorders, autism and ADHD are issues that interest me. I am also interested in the course of anorexia nervosa (AN) over the long term and through the different phases of life, part of which relates to pregnancy and parenting in individuals with AN. 

You are a PhD student at GNC, what is your project about? What questions do you want answers to? 

My PhD project is about the eating disorder AN, in the acute stage of the disease as well as in a long-term perspective. AN is a severe psychiatric disorder with a high mortality rate that mainly affects young women. There are few studies that follow individuals with AN for a very long time and the first three sub-studies are based on the 30-year follow-up of "The Gothenburg anorexia nervosa study". The study began in 1985 and was initiated by Maria Råstam and Christopher Gillberg. The study follows 51 individuals with AN onset who in adolescence and 51 matched comparison participants. Half of the AN group consists of an age cohort, i.e., all cases with AN born in a certain year in Gothenburg. The study is unique in that it is not based on a clinical group but reflects the natural long-term course of AN in the population. All individuals have been examined at previous occasions 16, 21, 24 and 32 years of age. In the 30-year follow-up, the aim was to examine the prevalence of eating disorders, psychiatric morbidity, rate of full recovery, mortality, and quality of life. We also wanted to investigate how the next generation is faring and obtain answers to questions such as whether birth outcomes differ between children born to mothers with previous AN and comparison participants. We also wanted to find out whether the children were at increased risk of mental health problems and poorer somatic health. 

The fourth sub-study examines the cognitive profile of adolescents with acute AN and we look at the associations with autism and ADHD in this group. In adult individuals with AN, inflexible thinking and weak central coherence have been found. Whether these cognitive impairments are present in young individuals with AN, where the disease duration is shorter, is more unclear. Increased knowledge about cognitive impairment and the relationship with autism and ADHD in AN may guide how treatment may need to be adapted to achieve better outcomes. We know that early treatment interventions in which starvation is rapidly reversed are associated with a better prognosis, and it is therefore of great importance to understand the various factors that impede or complicate the course of treatment in AN. 

You have published your first article? What were the main results?

The results of the study "Anorexia nervosa: 30-year outcome" showed that AN with adolescent onset has a good "lifetime outcome" in terms of mortality and recovery. The majority of individuals who developed AN 30 years ago were now recovered from their eating disorder and all participants were alive. Nineteen percent had an eating disorder and about 40% met criteria for some other psychiatric diagnosis; anxiety disorder was the most common diagnostic category. Over the thirty years, the average duration of AN was 4.9 years. The study also found that older age at onset of adolescent AN and premorbid perfectionism predicted better outcomes. The results also highlighted that relapse can occur even after many years without an eating disorder. 

What are the implications of the findings for practice and therefore for clinical work?

The results have practical implications as clinicians need to know about the prognosis and outcome of AN in the long term. We need to understand what factors might predict a better or worse outcome in AN, and this will assist in treatment planning. The study also answers questions that we face in the clinic, that patients and their families are wondering about. Based on the results, we as clinicians always need to consider that there is a risk of relapse in eating disorders, even in individuals who have been healthy from their eating disorder for many years.  

What are the other three studies about? 

Study two is entitled "Mental and physical health in children of women with a history of anorexia nervosa" and is about the children of the participants in the long-term follow-up. We want to get a picture of several aspects of the children's health; perinatal as well as physical and mental. We also look at the proportion of women with a history of AN who have had children in relation to the comparison group and look at birth outcomes of the children such as weight, height, Apgar score and preterm birth. The study interviews the women, who are in their 44s, regarding the health of their children via semi-structured parent interviews. This information is supplemented with information from various registers; the medical birth register and the national patient register. 

In study three, we instead take a health economic perspective and seek answers to questions such as what is the cost of psychiatric treatment and drug consumption in the group with AN over the 30-year period. The study is based on register data. 

In study four, the aim is to evaluate the cognitive profile of adolescents with AN, during the acute phase of the disease and after weight loss, and to investigate the relationship between cognitive profile, ADHD symptoms and autistic traits. Participants, recruited from the Child and Young Adult Eating Disorders Centre, will undergo various neuropsychological tests both during the acute phase of the disease and in a 1-year follow-up after weight regain. The results are compared with an age-matched comparison group. The study also investigates whether there is an agreement in cognitive profile between the adolescents and their parents.

What has been the highlight of your research career so far?    

Presenting research results at an eating disorder conference in Iceland at the Reykjavik Concert Hall, with geysers and hot springs in the surroundings, was a memorable experience. The ESSENCE conference in Gothenburg 2018 was also a highlight! I was there as an audience member and was able to hear expert knowledge from experienced researchers which was very inspiring.  

What are you currently working on and what will you be working on in the future research-wise? 

At the moment I am mainly engaged in data analysis and manuscript writing. In the last few weeks I have been attending a PhD course in register research in preparation for study three which is based on register data. 

Om Sandra

Most of my free time is currently spent hanging out at playgrounds, soccer fields and swimming pools with my three children aged 6, 4 and 1. Skiing is a great interest but unfortunately it has been difficult to get any good ski training here in Gothenburg as there is rarely enough snow in the winters.