Adolescents with full or subthreshold anorexia nervosa in a naturalistic sample: treatment interventions and patient satisfaction

Anorexia nervosa (AN) most often has its onset in adolescence [1] and might lead to severe consequences for many young women and men [2, 3]. AN affects mainly girls and young women, and lifetime prevalence is about 3–6 times higher for women than men [4, 5]. However, the rates among boys and young men are increasing [6, 7]. The incidence is the highest between the ages of 15–19, for both genders [8]. Comorbidity between AN and other psychiatric disorders, e.g. anxiety disorders and mood disorders, is common [6, 9].

Most treatment for eating disorders (ED) is interdisciplinary and offered at specialized ED units, where different professions work together in teams [10‐12], although there are only a few uniform recommendations on what interventions to use for different patients in different situations [10, 13]. According to Swedish clinical guidelines, patients are usually offered some form of “main treatment,” either individual, together with family, in a group with other patients or mixed [11]. The main treatment is often supplemented by different kinds of additional interventions. Most individuals with AN can be treated in outpatient care, but brief inpatient care might be necessary for patients with a severe illness, e.g. [10, 11].

Individual therapy is a treatment form where the patient has individual meetings with a therapist, often including counseling and psychoeducation [10, 14, 15]. Common forms of individual treatment are interpersonal psychotherapy [16], adolescent-focused psychotherapy or enhanced cognitive behavioural therapy [10]. Among adolescents, family-based treatment has the strongest empirical support for patients with a restrictive symptomatology [5, 10, 15, 17, 18]. Family-based treatment implies meetings with a therapist in which also the patient’s parent/s, and sometimes siblings, are involved. The treatment is often based on systemic, cognitive behavioral or psychodynamic principles [19]. Apart from a general focus on ED symptoms, family-based treatment have a strong focus on how the illness affects family relationships and how the parents can support their child’s recovery [10, 11, 15]. Group therapy, where one or two therapists meet a group of patients together, is often based on a shared symptomatology and offered to patients who might benefit from exchanging experiences with others in group sessions [11]. Patients with a restrictive symptomatology are not the main target group for such therapy [20], although multi-family therapy, based on conjoint sessions with three or four patients and their families, is a treatment form of increased interest for adolescents with restrictive ED [21, 22]. Complementary interventions include diet counseling (in which the patients meet with a dietician), meal training, physiotherapy, medical treatment and somatic treatment with a focus on physical health issues caused by the ED [11].

Although family-based treatment has proven to be the most effective intervention for adolescents with AN [10, 17, 18], it is not always appreciated by adolescents [23‐26]. In general, young patients rate individual therapy higher than family-based treatment [23, 24, 26, 27] and put strong emphasis on the therapist relationship [26, 28‐30]. Studies of treatment satisfaction among patients with AN are rather uncommon and have shown diverse results. Some studies on adolescents propose that they are generally quite unsatisfied with, or have mixed opinions about their treatment [23‐25], while other studies indicate that the majority of patients are quite satisfied [27, 28]. Therapists’ genuine engagement in treatment and ability to focus on “the whole patient” have been shown to contribute to high patient satisfaction [30], while the opposite is the case for e.g. distrust and experienced lack of information in treatment [26]. Dissatisfaction with treatment has been associated with slow treatment progress and premature termination [25, 31] and might lead to affective symptoms such as anxiety, depression, and loneliness, which increases the risk for weight loss and relapse [32]. Patients’ own opinions, together with research evidence and clinical expertise, are useful when trying to improve existing interventions and developing new forms of treatment, according to the three-legged stool of evidence-based practice in ED treatment [31].

A previous study on adolescents registered in SwEat showed a relatively good outcome for adolescents with AN or subthreshold AN, and the results indicated that treatment for this group of patients has become more effective over the past 15 years [33]. However, it did not examine what treatment interventions the patients received or the patients’ own perspectives, which is the focus of the present study. Since many patients in clinical practice receive more than one type of treatment, our intention was to look at possible differences across patients with different treatment combinations.

The overall aim of the present study was to examine treatment interventions and patient satisfaction in a naturalistic sample of adolescents with AN or subthreshold AN and possible associations to outcome defined as being in remission or not at treatment follow-up. The study is based on the following questions:

This is a naturalistic study based on data from the Swedish national quality register for eating disorder treatment (SwEat). SwEat is a longitudinal internet-based quality assurance register with the objectives to document clinically important key variables such as health-care consumption, treatment duration, different types of treatment interventions, and treatment outcome [34]. A total of 108 units, including all specialized ED units in Sweden and a fair number of general psychiatric units, participated in SwEat between 1999 and 2014 [35]. It has been suggested that studies with a naturalistic design can provide valuable knowledge about results of different treatments in real-life settings, as a complement to more commonly used randomized controlled studies [36, 37].

The objective of SwEat is to gather information about a treatment episode, from when a patient is entering treatment until completion of treatment, and patients are included regardless of age and gender. Information is initially registered in SwEat when a patient is entering treatment, provided that the unit intends to commence treatment, and the patient (or guardians, when the patient is underage) has given her/his consent to registration. A total of 17,611 initial registrations were made in SwEat between 1999 and 2014 [35]. If a patient terminates treatment and later on enters a new treatment episode, information in SwEat is registered again on the same occasions, which means that an individual might be initially registered in SwEat more than once. However, in the present study, solely information about the first treatment episode was included for patients who had more than one episode registered. After initial registration in SwEat, the patient is followed up once a year until end of treatment (EOT) [34]. During the years examined, at the time of follow-up, the patients also received a patient satisfaction questionnaire from the SwEat administration, to fill in and send back [35].

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 [50]. 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 [51]. At the same time, the need for additional individual treatment sessions might increase, including a broader focus on adolescents’ social contexts outside the family [52].

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 [33].

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 [55], or practical difficulties for older adolescents in combining treatment with other areas in life, such as school and spare-time activities [52].

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 [31].

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 [26]. 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 [52].

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 [10]. 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 [44], and often lead to resistance in treatment [56]. 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 [59]. 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 [67].

Young adolescents who received mainly family-based treatment and/or inpatient care seemed to respond more rapidly to treatment compared to older adolescents who more often received individual therapy or mixed treatment interventions.

Individual therapy was the most common treatment form, followed by family-based treatment and somatic treatment, and among the patients who answered the patient satisfaction questionnaire, individual therapy was the most appreciated treatment form.

In general, the adolescent patients were quite satisfied with their therapist relationships, but they gave low ratings to statements associated with their own participation in treatment.

Although most patients of those who answered the patient satisfaction questionnaire reported improvements in their attitude to food and eating, and their ability to eat regularly and sufficiently, far fewer patients felt that they had improved regarding consistent thoughts of food and weight, and fear of gaining weight, which are symptoms of great importance for long term recovery.

The results from the present study contribute to the existing knowledge about treatment interventions, treatment outcome and patient satisfaction in adolescents with AN or subthreshold AN. However, further research is needed to examine patients over longer follow-up intervals using different research methods, with an aim to learn more about the value of different treatment forms and patient satisfaction for clinical improvements.