Individual therapy was the most common intervention in the total study population, followed by family-based treatment. This result is in contrast to previous studies which have suggested that family-based treatment is the most common intervention among adolescents with a restrictive ED [10, 15]. The incidence of individual therapy increased with the patients’ age and the incidence of family-based treatment decreased, and the fact that FIT (which included patients who received a combination of these treatment forms) was the largest cluster indicates that many patients received a combination of individual and family-based treatment sessions. The main focus in family-based treatment, in addition to restoring weight and normalizing food intake, is on interpersonal processes within the family [10, 15, 17], with adaptations to different age groups . Thus, the need for family-based treatment might decrease in later adolescence, as the young people become more independent and less reliant on their family . At the same time, the need for additional individual treatment sessions might increase, including a broader focus on adolescents’ social contexts outside the family .
Patients in the cluster FTIC, who received mainly family-based treatment and/or inpatient care and had the lowest age in average, were most likely to achieve remission at 1-year follow-up, compared to patients in the other clusters. This is in line with previous evidence for the benefits of identifying early symptoms and inserting treatment at an early stage [1, 53]. Furthermore, the result indicates that the combination of interventions in FTIC, with family-based treatment as one of the main treatments, is effective for young patients.
Severe ED, often in combination with psychiatric comorbidity, generally requires comprehensive treatment efforts and extended treatments [6, 54]. Patients in cluster EMT had the largest amount of health-care consumption and received a mix of all treatment forms, including inpatient care. Most of the patients were diagnosed with AN, and had a low weight at treatment onset. The remission rate at 1-year follow-up was low, and only a small proportion of patients had completed treatment. The proportion of patients on sick leave at 1-year follow-up was high. Most likely, patients in EMT needed more time to achieve remission than 1 year in treatment. In a previous study, examining treatment outcome and treatment duration in adolescents registered in SwEat, the average treatment duration was 15 months. The results indicated that longer treatment duration was positively correlated to higher remission rates .
Cluster IT, with the highest mean age and a large proportion of patients who were diagnosed with subthreshold AN, had an even lower remission rate at 1 year follow-up. However, almost half of the patients in cluster IT had completed treatment by the time for 1-year follow-up. This might illustrate difficulties in finding the right treatment for patients with a more diffuse ED symptomatology , or practical difficulties for older adolescents in combining treatment with other areas in life, such as school and spare-time activities .
Not surprisingly, the results showed that whether treatment was discontinued or followed according to plan predicted outcome at 1-year follow-up in terms of being in remission or not. Patients who terminated treatment prematurely had a decreased chance of achieving remission. Premature termination of treatment might be associated with treatment dissatisfaction, which in turn might lead to slow treatment progress and an increased risk of relapse [25, 31, 32]. This is supported by results from the present study, indicating that patients who terminated treatment prematurely were significantly more dissatisfied with their treatment and with fulfillment of treatment goals. This points to the importance of learning more about how patient satisfaction can be promoted .
Among those who answered the patient satisfaction questionnaire, the patients who received individual therapy were generally more satisfied with their treatment. The patients in the clusters EMT and FIT, which included both individual therapy and family-based treatment, rated individual therapy higher than family-based treatment, and patients in EMT, IT and FIT rated individual therapy higher than complementary interventions. Patients’ perceived importance of individual treatment sessions has been pointed out in earlier studies [23, 24, 26], and patients have been arguing for the possibility of getting at least one individual treatment session as part of their treatment . In the present study, the fact that family-based treatment was less appreciated by the adolescents might have to do with the nature of such treatment form, in which the young peoples’ own thoughts and opinions are given less priority, in favor of joint conversations with the family. In addition, family-based treatment would possibly gain from adapting better to a society in change. Such adaption might include bringing patients’ other social contexts into treatment to a larger extent, and adjusting treatment to different family constellations .
Most of the patients who answered the patient satisfaction questionnaire perceived the form of treatment they received as helpful. The most important treatment goal, from the patients point of view was “to learn to eat normally”, which was also rated high concerning fulfillment. This goes well with the actual groundwork in ED treatment, which includes meal planning and striving for a regular and sufficient eating . However, while most patients reported improvements in behavioral symptoms, far fewer patients felt that they had markedly improved in relation to thoughts of food and weight, fear of gaining weight, and body perception. Rigid thoughts are parts of the core symptomatology , and often lead to resistance in treatment . Working with rigid thoughts and underlying psychological factors in treatment has proven to be particularly important in this diagnose group, in order to achieve a good treatment outcome and decrease the risk of relapse [26, 29, 30, 57]. There seem to be room for improvement in that regard since therapists’ ability to help was rated quite low by the patients.
Even if the majority of the responding patients in general were quite satisfied with the therapist relationship, they rated the following aspects low: the therapist’s ability to help them, their own participation in the planning of the treatment, the therapist’s ability to understand their problems and estimate their own struggle against the ED, and their agreement with the therapist/s about treatment goals and how the treatment should be conducted. This is in line with results from previous studies, suggesting that therapist alliance in adolescent treatment is difficult to achieve [58, 59]. Nevertheless, adolescents in general place great emphasis on the therapist relationship [30, 33], and therapist alliance has proven to be crucial for a good treatment outcome [60, 61]. The ego-syntonic aspect of AN, and patients’ denial of illness sometimes poses a real challenge to therapists . In such cases, the families’ engagement in treatment might constitute an important substitute. In family-based treatment, the parents’ alliance with the therapist often becomes stronger than that of the patients’ [24, 59].
Patients’ wish to be listened to in treatment has been highlighted previously, and a sound therapeutic dialogue seems to be a prerequisite for a well-established therapeutic alliance [59, 62]. Patients’ low rating of their therapist’s ability to help them indicates a lack of trust, but might have to do more with the patients’ low confidence in their own ability to recover. In general, therapists need to involve patients in the planning of their treatment to a larger extent, which implies talking more openly, asking the patients about their opinions and expectations [63, 64], and, when possible, letting the patients have more to say about the treatment plan [26, 65, 66].
Goals that more than 90% of the patients rated as important were “to learn how to handle unreasonable views on food and body size,” “to be more satisfied with myself and my body,” and “get help to handle strong emotions like sadness and anxiety,” but fewer than 60% of the patients considered these goals completed or almost completed. This points to the importance of updated treatment interventions focusing on body image, self-perception and emotion regulation. In a previous qualitative study, patients themselves argue for the benefits of such focus in treatment .
Strengths and limitations
A strength of this study is its naturalistic design, lending the results high external validity and allowing a generalizability to a clinical environment . Another strength is the number of participating units, which provides good national coverage. Nevertheless, the naturalistic design also implies major limitations [9, 69]. One example is lack of control over the assessments of symptoms and diagnoses and the content of different treatment forms at different units. The fact that we do not have any reliable data on psychiatric comorbidities is an obvious limitation, although we have no reason to believe that comorbidity would be different in the different study samples or clusters.
Considerable attrition at follow-up in SwEat, and low response rates regarding the patient satisfaction questionnaire are limitations over which we had no control when designing the study. In addition, the two study populations differ remarkably in size, despite coming from the same initial sample. Participating in the 1-year follow-up, as well as filling in the patient satisfaction questionnaire, is voluntary for the patients, but the follow-up registration is part of the patient administration and conducted by patients and the therapists together, whereas the patient satisfaction questionnaire is sent home to the patients to fill in by themselves. In other words, more responsibility is put on the patients in the patient satisfaction registration, which might explain the low response rate and the small sample size. Another possible explanation for the large amount of missing data is that forms that are filled in manually, which was the case for the patient satisfaction questionnaires during the first years examined, are sometimes difficult to interpret.
The low response rate regarding the patient satisfaction questionnaire decreases the generalizability of the results, and there is a risk that the results are misrepresentative to some extent. Patients who have stronger opinions about their treatment, both positive and negative, might be more likely to answer a patient satisfaction questionnaire than patients who have more neutral opinions. It has been shown that high participation rates in similar surveys generally correlate to a good outcome, although the effects of non-response bias on final results often are quite small . Some questions in the questionnaire have a larger number of missing or invalid answers than others, which might be due to that patients tend to skip questions that do not apply to them.
An obvious limitation is the fact that the patient satisfaction questionnaire has not been validated, although it can be considered to have face validity as it was developed by clinicians who are well experienced in working with ED patients.
Despite the missing registrations, the large sample sizes in the present study can be considered a strength. In total, we have valuable information about approximately 2000 individuals, providing a good representation of the total population, and responses from nearly 500 young patients, which may indicate possible response patterns in a larger population.