ERIKSBERGSGÅRDEN’S EATING DISORDER TREATMENT UNIT: PATIENT CHARACTERISTICS AND TREATMENT OUTCOME

Örebro University School of Medicine Degree project, 30 ECTS May 23, 2018

Author: Rebecca Jansson, Bachelor of Medicine Supervisor: Sanna Aila Gustafsson, PhD

ERIKSBERGSGÅRDEN’S EATING DISORDER TREATMENT UNIT:

PATIENT CHARACTERISTICS AND TREATMENT OUTCOME

A

BSTRACT

Introduction: Eating disorders are serious psychiatric disorders that often require specialized

care. Associated psychiatric comorbidity is frequent, with the most common comorbid

conditions being anxiety and mood disorders. Eriksbergsgården in Örebro is one of Sweden’s specialized eating disorder treatment units.

Aim: Primary aims were to describe clinical characteristics of the adult patient group at

Eriksbergsgården and to evaluate treatment outcome and patient satisfaction at the one-year follow-up. An additional aim was to examine if factors such as psychiatric comorbidity affected treatment outcome.

Methods: This study used data from Riksät and Stepwise, two large-scale Swedish registers

for eating disorder treatment. Data for this study was registered into Stepwise and Riksät at Eriksbergsgården between August 2010 and December 2017 and 489 adult patients of both genders constituted the study group. Patient characteristics and DSM-IV axis I psychiatric comorbidity were assessed at the initial evaluation. At the one-year follow-up, treatment outcome and patient satisfaction were evaluated.

Results: The most common diagnoses in this patient material were eating disorder not

otherwise specified, 56.6 %, followed by bulimia nervosa, 26.4 %. At the initial evaluation, 62.0 % of the patients suffered from psychiatric comorbidity. Of the patients with initial comorbidity, 43.3 % were recovered at the one-year follow-up, compared to 62.8 % of the patients with no initial comorbidity, p=0.021.

Conclusion: Our results confirm the previously known fact that psychiatric comorbidity

among eating disorder patients is common. Also, the results identify psychiatric comorbidity as a possible factor to have negative effect on the treatment outcome.

Keywords: Eating disorder, psychiatric comorbidity, anorexia, bulimia, binge eating disorder, EDNOS, Riksät, Stepwise, TSS-2

A

BBREVIATIONS

AN Anorexia nervosa

BED Binge eating disorder

BMI Body mass index

BN Bulimia nervosa

CBT Cognitive behavioral therapy

CS Clinical significance

CS/RCI Clinical significance/Reliable change index

ED Eating disorder

EDE-Q Eating Disorder Examination Questionnaire EDNOS Eating disorder not otherwise specified

GAD Generalized anxiety disorder

IPT Interpersonal psychotherapy

NOS Not otherwise specified

OCD Obsessive compulsive disorder

PSR Psychiatric Status Rating scale

PTSD Post-traumatic stress disorder

RCI Reliable change index

Introduction ... 1

Aim ... 2

Methods ... 3

Participants ... 3

Measures ... 3

Structured Eating Disorder Interview (SEDI) ... 4

Structured Clinical Interview for DSM-IV axis I diagnoses (SCID-I) ... 4

Eating Disorder Examination Questionnaire (EDE-Q) ... 4

Psychiatric Status Rating Scale (PSR) ... 4

Treatment Satisfaction Scale 2 (TSS-2) ... 4

Statistical methods ... 4 Ethical considerations ... 5 Results ... 5 Discussion ... 11 Limitations ... 13 Conclusions ... 13 References ... 15 Appendix 1 ... 20

DSM-IV eating disorders ... 20

DSM-5 eating and feeding disorders ... 20 Populärvetenskaplig sammanfattning ... Fel! Bokmärket är inte definierat. Cover letter ... Fel! Bokmärket är inte definierat. Ethical consideration ... Fel! Bokmärket är inte definierat.

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I

NTRODUCTION

Eating disorders (ED) are serious psychiatric disorders that cause significant suffering for affected individuals [1]. They have a life-time prevalence of 1-3 % and most commonly affect young women [2–4]. ED in general and anorexia nervosa in particular are associated with a high risk of premature death [5,6].

The classification of ED recently underwent revision with the implementation of DSM-5 [7]. The previous diagnostic manual, DSM-IV, classified ED into three categories: anorexia nervosa (AN), bulimia nervosa (BN) and eating disorder not otherwise specified (EDNOS) [8]. Binge eating disorder (BED) was included as a subcategory to EDNOS [8]. A problem with diagnosing ED based on DSM-IV criteria was that, according to studies, more than 50 % of the patient ended up getting an EDNOS diagnosis [9,10] and therefore less validated treatment options [11]. An important aim of the DSM-5 classification was to provide more specific diagnoses for patients with ED [12]. In order to make this possible, the major changes in DSM-5 compared to DSM-IV were to make the diagnostic criteria for AN and BN more inclusive, to acknowledge BED as a formal diagnosis and to include pica, rumination and avoidant/restrictive food intake disorder among feeding and eating disorders [7]. In DSM-IV, the three latter were listed among “disorders usually first diagnosed in infancy, childhood, or adolescence” [8]. The ED listed in DSM-IV and DSM-5 can be found in appendix 1. Studies have shown that diagnosing ED based on DSM-5 criteria leads to more patients getting a specific diagnosis when compared to the use of DSM-IV [13]. In Sweden, the transition to DSM-5 is ongoing but it is not yet incorporated.

Comorbidity between ED and other psychiatric disorders are common with numbers ranging between 40 and 95 % [6,9,14,15]. Reasons for the wide variety in prevalence estimates found in different studies might be, for example, different diagnostic methods or differences in study populations (e.g. inpatients/outpatients) [9]. Anxiety and mood disorders are the most

common comorbid diagnoses [9,14,15]. Generalized anxiety disorder (GAD), social phobia, specific phobia, post-traumatic stress disorder (PTSD) and obsessive compulsive disorder (OCD) constitute the most commonly co-diagnosed anxiety disorders [9,14,15]. Among mood disorders, major depressive disorder is the most frequent comorbid diagnosis [9,14].

Psychiatric comorbidity is thought to have a negative effect on the course of the ED and is important to take into consideration when tailoring an individualized treatment for the patient [6,16,17].

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ED patients constitute a heterogeneous group, where multiple factors, such as severity of disease, comorbidity, and motivation to participate in therapy may influence the treatment outcome [18]. The focuses of the initial treatment are to stop starvation, gradually restore normal weight in underweight cases and incorporate balanced and regular eating habits [19]. When eating habits begin to stabilize, psychotherapy is recommended to obtain long lasting results [16]. For adult AN patients, no course of psychotherapy have yet been proven superior to another [20] but therapies commonly used are cognitive behavioral therapy (CBT) and interpersonal psychotherapy (IPT). For BN, three treatment options are supported by current evidence: CBT, IPT and pharmacological treatment with SSRI [21–23]. For EDNOS, despite being the most common ED diagnosis in outpatient care [10,24], the scientific evidence for treatment is sparse with one exception, BED, where IPT and CBT have been proven efficient [25,26].

Sweden has two large-scale internet-based data collections for specialized ED care, Riksät and Stepwise, in use since 1999 and 2005, respectively [27,28]. Stepwise is a structured, internet-based tool for patient assessment and data collection, and a part of the initial patient evaluation as well as the patient follow-up in Swedish eating disorder units [29]. Initial evaluation in Stepwise also includes registration in Riksät, a national quality register for ED treatment with the aims to monitor ED healthcare, treatment methods and results as well as patient satisfaction [27].

Eriksbergsgården in Örebro, Sweden is one of the units using Stepwise and Riksät. It is a specialized, multidisciplinary ED treatment unit offering treatment to patients of all ages that meets the criteria for an ED diagnosis based on DSM-IV. Patient contact can be initiated either by medical or self-referral and approximately one hundred patients initiate treatment at the unit each year. [19]

A

The primary aims of this study were to describe clinical characteristics of the adult patient group entering treatment at Eriksbergsgården between 2010 and 2017 and to evaluate treatment outcome as well as patient satisfaction at one-year follow-up. An additional aim was to examine if baseline characteristics, such as psychiatric comorbidity, symptom severity according to the Psychiatric Status Rating scale (PSR) and type of ED diagnosis, affected treatment outcome.

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M

ETHODS

In this register study, data was extracted from Riksät and Stepwise. Inclusion criteria for the registers are medical or self-referral to one of the participating treatment units, a diagnosed DSM-IV ED and an intention to treat the patient at the unit in question.

P

Data for this study was registered into Stepwise and Riksät at

Eriksbergsgården, Örebro between August 2010 and December 2017. Figure 1 shows the exclusion process as flowchart. We intended to include all patients, 18 years or older, that received an ED diagnosis and initiated treatment at Eriksbergsgården during the study period. However, for various reasons (e.g. severe psychiatric

comorbidity making completion of the thorough questionnaires included in Stepwise too challenging for the patient) some cases don’t get

registered into Stepwise and Riksät and are therefore not part of this study. During the study period, 734 new registries were made. Patients under the age of 18 and patients not diagnosed with an ED at the initial evaluation were excluded from this study. 6 patients had initiated treatment at the unit twice and in those cases, the treatment periods followed by a registered one-year follow-up were included. One of these patients lacked a one-year follow-up, in this sole case the first registration for the patient was used. Registered one-year follow-ups were available for 107 patients. An additional 4 patients had, instead of a one-year follow-up, an end of treatment follow-up made within ten to fourteen months from their initial registration. Because of the proximity in time, these follow-ups were included in this study.

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All instruments for measures described in the following sections are parts of the Stepwise patient evaluation.

Structured Eating Disorder Interview (SEDI)

A semi-structured interview based on DSM-IV, used to assess ED symptoms [30]. In this study the patients were classified into four summarizing diagnose groups: AN, BN, EDNOS and BED. BED was separated from EDNOS in this study to evaluate the prevalence before transition to DSM-5, where it is acknowledged as a separate diagnosis [7].

Structured Clinical Interview for DSM-IV axis I diagnoses (SCID-I)

A semi-structured interview to assess psychiatric comorbidities. It consists of two parts, part one contains questions about demography, past and present illness, as well as treatment history, while part two aims to establish if DSM-IV axis I diagnostic criteria are met, both during the past month and lifetime. [31]

Eating Disorder Examination Questionnaire (EDE-Q)

A thirty-six-item questionnaire developed to assess ED thought processes and behaviors during the last 28 days. The test consists of four subscales measuring restraint, eating concern, shape concern and weight concern. A total score (EDE-Q total) is also calculated by dividing the means of the subscales by four. [32] When EDE-Q is mentioned in this study, it refers to EDE-Q total.

Psychiatric Status Rating Scale (PSR)

A scale used to rate the ED symptom severity from one (patient is in complete remission) to six (severe ED symptoms) [33]. A PSR rating higher than four were in this study considered severe disease.

Treatment Satisfaction Scale 2 (TSS-2)

A 6-item questionnaire assessing patient satisfaction with the ED treatment unit, staff and treatment. Each question has four answer choices ranged from 0 up to 3, with 0 being the lowest and 3 the highest level of satisfaction [34].

S

For statistical analyses in this study IBM SPSS version 24 was used. A p-value of < 0.05 was considered statistical significant. Comparisons between patient groups were carried out using Student’s t-test, Pearson’s chi-square test and Fisher’s exact test. The proportion of clinically improved patients were analyzed with CS/RCI for the EDE-Q. CS, clinical significance,

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investigates whether the patient’s post-treatment measurement falls within the normal range for a population or not, i.e. if it passes the CS off point for the test. In this study, CS cut-off values derived from a large Swedish study were used [35]. RCI, reliable change index, evaluates if the test score (in this study the EDE-Q test score) statistically significantly differs between the pre-treatment and the post-treatment measurements. This index is obtained by subtracting the post-score from the pre-score and dividing the result with the standard error of the differences. An RCI of ≥ ± 1.96 is a statistically reliable change at the p < 0.05 level. After calculating CS and RCI, four outcome categories were formed, modified from [35]: 1. Recovered (RCI ≥ 1.96 and under cut-off score for CS), 2. Improved (RCI ≥ 1.96 but over cut-off score for CS), 3. No change (RCI ≤ 1.96 and ≥ -1.96 independent of CS), 4.

Deteriorated (RCI ≤ -1.96 independent of CS) [35,36].

E

Upon registration in Stepwise and Riksät, informed consent is obtained from each patient to have their data stored in the registers and for it to be used for research purposes. All data is part of current initial evaluation and follow-up routines and no data was collected exclusively for this study. All patients were anonymous for me as I was given SPSS-files with

de-identified data.

R

ESULTS

A total of 489 patients were included in this study. Table 1 shows demographic and clinical characteristics of the patient group as a whole, as well as subdivided into ED diagnoses. Ninety-six percent of the patients in this material were females and the mean age at initial evaluation was 26.5 years. The most frequent diagnosis in this patient material was EDNOS, 56.6 %, followed by BN, 26.4 %, AN 12.1 % and BED 4.9%.

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Table 1. Baseline characteristics for the patients included in the study, as a total and subdivided into eating disorder diagnoses. The table shows number of patients (%) and means (standard deviations).

Almost two thirds of the patients, 62.0 %, had, in addition to the ED, at least one other DSM-IV axis I diagnosis at the initial evaluation, shown in table 2. The highest prevalence, 66.7 %, was found among the BN patients and the lowest, 54.2 %, among the AN patients. Anxiety disorders affected 45.0 % of the patients and were the most common comorbid diagnose group. The most frequent diagnoses among anxiety disorders were specific phobia and GAD. Mood disorders were found in 34.4 % of the patients, with major depression being the most common diagnosis. No statistically significant differences in the comorbidity distribution between the ED diagnose groups were found.

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Table 2. Axis I psychiatric comorbidity at the initial patient evaluation.

Out of the 489 patients included in this study, 111 (22.7 %) had a registered one-year follow-up. A non-response analysis, shown in table 3, was conducted to evaluate if the patients with and without a follow-up differed at the initial patient evaluation. A higher proportion of the patients without a follow-up suffered from psychiatric comorbidity, 63.5 % compared to 56.8 % among the patients with a follow-up. Also, suicidal ideation was over three times more

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frequent among the patients without a follow-up, 25.4 % compared to 8.1 % among those with a follow-up. The differences between the groups were not statistically significant.

Table 3. Non-response analysis comparing baseline measurements between the patients with and without a one-year follow-up.

Out of the 111 followed-up patients, 107 had been assessed for ED diagnoses at the one-year point. Figure 2 illustrates the diagnostic flux between the initial evaluation and the follow-up for these patients. At the follow up, 52 patients (48.6 %) no longer met the criteria for an ED diagnosis. This proportion was the lowest for patients initially diagnosed with AN (26.7 %) and the highest for patients initially diagnosed with BED (80.0 %). Regarding diagnose stability between the initial evaluation and the follow-up, no diagnostic flux occurred between the AN, BN and BED patient groups but 14 patients initially diagnosed with AN, BN or BED received an EDNOS diagnose at the follow-up.

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Figure 2. Illustration of the diagnostic changes between the initial evaluation, shown on the left side, and the one-year follow-up, shown on the right side. The line thickness represents the size of the patient flux. (AN = anorexia nervosa, BN = bulimia nervosa, EDNOS = eating disorder not otherwise specified, BED = binge eating disorder)

At the one-year follow up, 100 patients had filled out the scale measuring patient satisfaction, TSS-2. Results from the six-item questionnaire are shown in figure 3. Overall, the results showed an over 90 % patient satisfaction to a great or fair extent on all six question items. On the questions concerning agreement on treatment goals and satisfaction with received

treatment, slightly lower levels of satisfaction were declared. When treatment satisfaction was compared between the ED diagnose groups, no statistically significant differences were found.

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Figure 3. Patient satisfaction at the one-year follow-up according to TSS-2.

The additional aim of this study was to evaluate if baseline characteristics such as psychiatric comorbidity, symptom severity and type of ED diagnosis affected treatment outcome. At the one-year follow-up, 103 patients had a registered follow-up value for EDE-Q and for those patients, CS/RCI were calculated. Table 4 shows treatment outcome, according to CS/RCI for EDE-Q, as a comparison between patients with and without comorbidity at the initial

evaluation. Of the patients with initial comorbidity, 43.3 % were recovered at the one-year follow-up, compared to 62.8 % of the patients with no initial comorbidity. Statistical analysis (two-sided Fisher's exact test) confirmed a statistically significant difference in the treatment outcome between patients with and without psychiatric comorbidity at the initial evaluation (p = 0.021). No significant associations were found for neither symptom severity according to PSR and treatment outcome, nor type of ED diagnosis and treatment outcome.

0% 20% 40% 60% 80% 100% I was treated respectfully

Satisfaction with received treatment

Satisfaction with caregiver's ability to listen and understand

Trust in caregiver

Agreement regarding treatment goals

Satisfaction with treatment unit as a whole

Treatment satisfaction scale 2

To a great extent To a fair extent To some extent Not at all

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Table 4. Treatment outcome according to CS/RCI for EDE-Q. Total sample and comparison between patients with and without comorbidity at the initial evaluation.

D

ISCUSSION

The primary aims of this study were to describe clinical characteristics of the studied patient group as well as to evaluate treatment outcome and patient satisfaction at the one-year follow-up.

As expected and in line with other studies [9,10], the most common diagnosis in our patient material was EDNOS, followed by BN, AN and BED. When we compared our results to the annual reports from Riksät [37–41] covering ED units from all over Sweden, we found that the patients in our study to a lower degree had been diagnosed with the more specific diagnoses AN or BN and to a higher degree with EDNOS compared to Sweden as a whole. The reasons for this are hard to speculate in but one potential factor could be that the patients may come to Eriksbergsgården earlier in the course of disease, before they potentially meet all criteria for the more specific diagnoses.

Almost two thirds of the patients in our study, 62.0 %, suffered from axis I psychiatric

comorbidity. Even though this number is high, the prevalence found in our study was slightly lower than what was found in a large nationwide Swedish study conducted between 2005 and 2014 [9]. The study in question also used data from Stepwise and found comorbidity in 71.2 % of the cases. One factor that may contribute to the lower number found in our study could be that Örebro has a low proportion of patients treated in inpatient settings. Higher

proportions of comorbidity have been found among inpatients than outpatients [42]. Another possibility is if a lower proportion of the patients in our material, compared to the national average, were asked about all types of psychiatric comorbidity. If so, this could lead to an underestimation of comorbidity in our study.

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Regarding the diagnostic fluxes between the initial evaluation and the one-year follow-up a couple of things stood out. First, the high proportion of BED patients no longer having a diagnosable ED at the follow-up. This can probably, at least in part, be attributed to the fact that out of the BED patients in our study, only ten had a registered follow-up diagnosis. As a result, a single patient can considerably change the proportions in our study. Second, no diagnostic crossover occurred between the AN and BN patient groups and vice versa. This was surprising since crossovers between AN and BN diagnoses are a common finding in studies [43–45]. One factor contributing to this may be the limited follow-up time in our study compared to other studies [44,46]. Possibly, diagnostic shifts between the AN and BN

diagnose groups may take a longer time to appear, partly because of the rather strict BN and AN diagnostic criteria of DSM-IV [8], Had the follow-up time in our study been longer, maybe a different pattern would have emerged.

The results from the TSS-2 at the one-year follow-up showed overall high rates of patient satisfaction with Eriksbergsgården’s treatment unit. When our results were compared with data from Riksät’s annual reports, Eriksbergsgården was above the national average on all question items [37–41]. Slightly lower proportions of satisfaction to a great or fair extent were found on the questions regarding agreement on treatment goals and satisfaction with received treatment. Even though patient satisfaction is still high in these areas, this may be of

importance to work on since compliance to treatment is more likely if patients feel involved in their treatment plan [47].

Loss to follow-up in our study was substantial. Even though there were no statistically significant differences between the patients with and without a one-year follow-up, the trend pointed towards higher proportions of psychiatric comorbidity in the patient group without a follow-up. This may suggest that patients without a follow-up were more severely comorbidly ill and maybe, as a consequence, less susceptible to treatment. In addition, suicidal ideation were more than three times more common among the patients without a follow up. This shows on a need to address any suicidal ideation as a part of the treatment. The reasons for the substantial loss to follow-up could be a combination of many different factors, e.g. follow-ups are time-demanding, or some patients decline to participate after terminated treatment. The fact that so few patients had a registered one-year follow-up is worrisome since follow-ups provide important information to both the caregiver and the patient about the treatment process. They are also a crucial part of healthcare quality work. The findings in this study showed that Eriksbergsgården during the time period had a lower proportion of follow-ups

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compared to Sweden as a whole [37–41], this is an area where a lot can be won from improvement.

An additional aim of this study was to examine if factors such as psychiatric comorbidity affected treatment outcome. Statistical analysis confirmed a significant difference in treatment outcome between patients with and without comorbidity at the initial evaluation. Our results show that psychiatric comorbidity may have a negative effect on treatment outcome,

something that has also been the findings of other studies [6,17]. This demonstrates on the need for future large-scale studies that further investigate the connection between psychiatric comorbidity and inferior treatment outcome. Another possible topic for future studies is to investigate if ED can be treated more successfully by first treating any psychiatric

comorbidity.

L

Our study has some limitations. First, only the initial and the one-year follow-up patient observations were included, thereby restricting our knowledge about the patients and

treatment outcome to these two points in time. Also, the substantial loss to follow-up reduced the possibilities to draw conclusions from our study material. Second, patient assessment may have differed between assessors, even though the risk was reduced by the use of the

standardized computer-based Stepwise and Riksät systems. Third, limitations with register studies include that the study material is restricted to the data stored in the registers. For example, we have no information on the number of patients receiving simultaneous treatment for their comorbidity. Furthermore, Stepwise and Riksät are treatment and not diagnose registers. Since a considerable proportion of ED patients never seeks treatment [14], it is important to be cautious about extrapolating our results to ED patients as a diagnose group. Fourth, our study is small and includes just one eating disorder treatment unit. This makes it hard to conclude if any findings in our study are generalizable or may be due to local factors, for example if the patient group substantially differs between Eriksbergsgården and other treatment units.

C

ONCLUSIONS

Our study confirms the previously known fact that psychiatric comorbidity among ED patients is common. Also, the results indicate that psychiatric comorbidity may have a

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negative effect on treatment outcome. The later shows the need for large-scale studies that further investigates the connection between psychiatric comorbidity and inferior treatment outcome. This could in the future lead to new treatment approaches for ED patients with psychiatric comorbidity.

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A

PPENDIX

1

DSM-IV

• Restricting type

• Binge eating/purging type

Bulimia nervosa (BN)

• Purging type • Nonpurging type

Eating disorder not otherwise specified (EDNOS)

• EDNOS 1: meets all other criteria for AN but has regular menstruations

• EDNOS 2: meets all other criteria for AN but weight is currently within the normal range, despite significant weight loss

• EDNOS 3: meets all criteria for BN except that binge eating and compensatory behavior occur at a frequency of less than twice a week or the duration of the condition has been less than 3 months

• EDNOS 4: regular use of compensatory behavior without binging • EDNOS 5: chewing and spitting out food

• EDNOS 6: binge-eating disorder

Adapted from Diagnostic and Statistical Manual of Mental Disorders, fourth edition [8].

DSM-5

• Restricting type

• Binge eating/purging type

Bulimia nervosa

Binge-eating disorder (BED)

21 • Atypical AN

• Atypical BN • Atypical BED • Purging disorder • Night eating syndrome

Unspecified feeding or eating disorder Pica

Rumination disorder

Avoidant/Restrictive Food Intake Disorder