Severe and Enduring Eating Disorder Patients at Stockholms Center for Eating Disorders in Sweden
Severe and Enduring Eating Disorder Patients at Stockholms Center for Eating Disorders in Sweden
Patients with severe and enduring eating disorders (SEED) are seriously ill and have a low
 quality of life. In 2014, a special unit based on case management (CM), for patients with
 SEED (the Eira unit) was started at Stockholm Centre for Eating Disorders, Sweden. Eating
 disorder is a serious illness that creates a great deal of suffering. Most patients who
 undergo specialized eating disorder treatment will be healthy, but a small percentage of the
 patients develop a SEED. SEED patient have gone through numerous of treatments and has been
 to several specialists units for years as well as they has completed many different therapies
 without getting fee from the eating disorder (ED). Due to the long term sick in ED the SEED
 patient is often alone and has difficulties to cope with everyday life situations. SEED
 patients are a vulnerable patient population with a great suffering and poverty to release
 the identity of the ED. However, no previous study is done in which patients with SEED
 themselves describe their own theory about why they are still ill and how specialized eating
 disorder care has affected them. In the ED field, there is a growing consensus that treatment
 of patients with SEED needs to be multi-professional, with a focus on improving the patients'
 social situation, minimizing medical complications, and enhancing quality of life and
 independence, rather than focusing one-sided on symptom reduction. Is case management a way
 to help the SEED patients witness a better quality of life? Besides the personal suffering of
 patients and their families, SEED is also associated with high costs for health care and for
 society in general.
1. This is a qualitative study based on semi-structured interviews with 21 patients with
 SEED. Grounded theory was used to analyse data. The patients had suffered from eating
 disorders on average for 21,5 years with a BMI of 15,4 (12,2-19.5) at the time for the
 interview.

 2. Methods for data collection are a semi-structured diagnostic interview, a qualitative
 interview, self-report questionnaires and data from medical records. The diagnostic
 interview and the self-report assessments will be done at start of treatment and at
 follow-ups after one, two, and three years. The qualitative interview will be conducted
 one year after start of treatment. Data from medical records will be collected
 retrospectively.

 The Structured Eating Disorder Interview (SEDI) is a semi-structured diagnostic interview for
 ED diagnoses according to the DSM-IV. The interview consists of a maximum of 30 and normally
 about 20-25 questions.

 The RAND-36 (also known as the SF-36) measures health-related quality of life (HRQoL).
 Changes in the HRQoL over time can be seen by comparing repeated assessments.

 The Eating Disorder Examination Questionnaire (EDE-Q) measures central symptomatic aspects of
 ED by way of patient's self-ratings.

 The Treatment Satisfaction Scale 2 (TSS-2) is a patient-rated assessment of treatment
 satisfaction in a simple 6-item scale. TSS-2 will be used at all follow-ups.

 The qualitative interview is semi-structured and consists of three broad themes:

 1. The patient's thoughts about her/his life situation in the year he/she has been at Eira.

 2. The patient's thoughts and reflections about her/his quality of life, and whether it has
 been affected in the year he/she has been at Eira.

 3. The patient's thoughts about her/his future. The informants will be asked to talk openly
 around these themes. The interviewer, who is the same person for all interviews, is a
 psychologist who is not part of the Eira staff.

 4. The cost-effectiveness analysis consists of costs of the CM intervention, changes in
 quality of life, as well as societal costs such as health care usage and loss of production.
 The perspective of the analysis will be societal and the time horizon three years. The
 analysis method is going to be cost-utility analysis with health effect expressed in quality
 adjusted life years (QALY). The analysis will be complemented with the probability of
 acceptable cost-effectiveness with different willingness to pay for a QALY.

 All costs of the CM intervention occur at Eira. The cost for each patient in the study can be
 calculated by Eira's total cost divided with each patient's share of resource utilization
 based on enrolled time.

 QALYs will be estimated based on RAND-36 transformed to SF-6D based on a British preference
 score. From the measures at baseline, and after 1, 2 and 3 years, changes in QALYs can be
 estimated. From medical records, changes in cost of health care usage can be calculated. The
 participants' employment and change acquisition work rate is followed during the same period
 based on interviews with participants.

 The treatment may also have impact on relatives' quality of life, costs and earnings. These
 aspects will not be considered in the analysis.

 Setting

 During the first 5-6 sessions at Eira, the patient's psychiatric, somatic and social
 condition is carefully investigated as well as her/his medical history and previous treatment
 experiences. Thereafter the CM intervention starts. The patients' needs and preferences
 guides where and how often the meetings take place and some can be done by phone or text
 messages. Another important part of the CM is to help the patients contact the authorities
 and if necessary to aid them with economic issues.

 In addition to the supportive interventions is it also important to regularly monitor the
 somatic condition and the weight of the patients. If the patient is temporarily in need of
 more somatic or psychiatric help, the therapists can help in planning a short, more intensive
 treatment.

 Twice a year, there is a lecture about the SEED condition for the relatives (without the
 patients) at Eira. During the lecture the relatives can ask questions and discuss problems
 they encounter as SEED relatives. With the patients' consent, relatives are invited to
 participate in the CM treatment. Information and support is offered relatives on an
 individual basis, this also includes underage children.
Inclusion Criteria:

 -  Primary diagnosis: eating disorder according to DSM IV (Diagnostic and statistical
 manual of mental disorders fourth edition) Criteria based on diagnostic interview

 -  Illness duration of ED >10

 -  Participated in at least three failed specialized eating disorder treatments

 -  Written informed consent

 -  Having the mental capacity to make provide informed consent to research participation

 -  Somatically stable

 Exclusion Criteria:

 -  Somatically unstable