Abstract
Background
Anorexia nervosa is a potentially lethal psychiatric disorder characterised by restrictive eating and weight loss. Adolescent patients were treated as outpatients using a novel method which involved coaching the parents to take full responsibility for their child’s nutrition. In this follow-up cohort study, we compared the long-term outcomes of patients treated in primary care using the family-based coaching method (FBcM-PC) with those treated in tertiary care using traditional treatment.
Methods
The cohort included all adolescent patients with a restrictive eating disorder treated initially in Oulu University Hospital and/or Oulu Primary Health Care centre between 2013 and 2019. Patients (n = 168) were contacted and asked to fill out a health questionnaire. Altogether 73 (43%) responded (30 from the FBcM-PC and 43 from the traditional treatment group). The outcome variables – depression, anxiety, eating disorder symptoms and need for medical appointments – were compared between the treatment groups.
Results
Upon follow-up after a mean of 6.6 years, 77% of the FBcM-PC and 54% of the traditional treatment groups did not need medical appointments (p = 0.052). No differences were found in self-reported health, depression or anxiety between the study groups. Concerns about weight and shape were reported by 40% of both groups. 87% of the FBcM-PC and 9% of the traditional treatment group received outpatient treatment only (p < 0.001).
Conclusion
Adolescent anorexia nervosa patients treated mainly in primary care had at least as favourable long-term outcomes as those treated in tertiary care. The results of this study encourage further development of outpatient treatment methods in primary care.
Keywords: Anorexia nervosa, primary care, family-based treatment, long-term outcome, continuity of care, adolescents
Introduction
Anorexia nervosa is a psychiatric disorder characterised by restrictive eating behaviour and weight loss. It usually affects otherwise healthy adolescent girls, and even when the long-term outcomes of population-based studies [1–3] are relatively successful there are high rates of medical complications and comorbid mental illnesses [4].
Early identification and treatment are associated with favourable outcomes [5]. Primary care providers are in a unique position to identify paediatric patients with eating disorders early in the course of the illness [6,7]. However, there is a lack of evidence on early treatment in primary care [8]. Primary care providers may have a high threshold to take responsibility and initiate a therapeutic relationship with this complex patient group [9], who have traditionally been treated in psychiatric/specialised clinics.
There is evidence that less intensive treatment methods such as day-patient or outpatient treatment approaches achieve similar outcomes to inpatient treatment in medically stable anorexia patients [10]. Also, the high costs of inpatient treatment are a concern [11–13].
Family-based outpatient treatment (FBT) settings, where parents are encouraged to take responsibility for their child’s nutrition, have been found to be effective in treatment of adolescent anorexia nervosa [14–16]. Some favourable results have been reported which indicate that primary care implementation of FBT can restore weight and improve the clinical status of young patients as effectively as traditional FBT [17,18]. Early medical intervention in primary care has the potential to reduce barriers to treatment and thereby improve outcomes in the treatment of adolescent eating disorders.
There is a need for research into the treatment of anorexia nervosa at primary care level, since details of only a few interventions have been published and, to our knowledge, no long-term follow-up studies have been conducted.
We have treated adolescent anorexia patients in primary care for over a decade using a family-based coaching method (FBcM-PC), with favourable short-term results and reduced costs [13,19–21]. Our method is somatic-oriented and concentrates on restoration of nutritional status and normalising eating habits.
The aim of this study is to further investigate the safety of FBcM-PC by analysing the long-term outcomes of patients with adolescent anorexia treated in primary care compared with those who received traditional treatment in tertiary care.
Methods
Study design
This follow-up cohort study took place at Oulu University Hospital and Oulu Primary Health Care Centre in Finland. A search of hospital and health care centre registers was conducted for adolescent patients (aged 10–18 years) who were diagnosed with an eating disorder between 2013 and 2019.
Altogether 311 patients diagnosed with an eating disorder were screened. Patients under 10 years old at the time of the initial diagnosis, patients with autism spectrum disorder, patients without weight loss and patients who had previously received treatment in other special care units were excluded (n = 136). Altogether 175 patients with a restrictive eating disorder and weight loss were included in the study. Seven patients were not reachable due to their address being unknown or death (Figure 1).
Figure 1.
Flow chart of collecting patients for long-term follow-up study. (FBcM-PC = family-based coaching method in primary care).
The reachable patients (n = 168) were sent a letter asking them to join the long-term outcome study by answering the questions of the Research Electronic Data Capture (RedCAP) online survey [22,23].
The regional medical research ethics committee of North Ostrobothnia Wellbeing Services County approved the study design (84/2021). Participants provided written informed consent in accordance with the Declaration of Helsinki [24].
Treatment procedure
The FBcM-PC was carried out in Oulu Primary Health Care Centre between 2013 and 2019 by a single paediatrician (JR), with the assistance of psychiatric nurses and a nutritional therapist. The goal of the treatment was to normalise eating behaviour and to achieve nutritional stability.
The somatic-oriented FBcM-PC method included evaluation (at least 60 min) within two weeks of the first patient contact and weekly appointments (15–30 min) with the same paediatrician. Additional treatment by psychiatric nurses was offered according to the patient’s and families’ individual needs. Both parents were involved in the treatment and at least one of them was always present at the control visits together with the patient. The potentially life-threating condition of anorexia nervosa disorder and the importance of correction of malnourishment in the beginning of the treatment was explained to them at the first appointment very clearly. Parents received guidance to restore their normal family meal routines with straightforward advice at the weekly appointments. Exact food lists or amounts were avoided but getting back to patient’s earlier portions and normal meals was encouraged. Exercise was banned until food intake improved. Patients were allowed to eat the school lunch by themselves or under the control of the school nurse when needed. Nutritional supplements were introduced in case the weight gain was too slow. Patients were supported to continue their ordinary life by maintaining their schooling and social life during the treatment. Those (4/30) who were not responding to the treatment were sent to the local tertiary care hospital.
During the same period most adolescent patients with restrictive eating disorders were treated with traditional treatment in tertiary care in Oulu University Hospital during the initial stage of their illness. Traditional treatment included inpatient and/or outpatient care in Oulu University Hospital, in the paediatric department and/or the psychiatric department, which provides specialised assessment and treatment for adolescent eating disorders.
Study procedure
Respondents completed a series of questionnaires via the RedCap online database platform [22,23] between 1.4.2022 and 31.12.2022. These included the validated SCOFF (Sick, Control, One, Fat, Food) screening questionnaire for eating disorder symptoms which gives a result in the range 0–5 [25], the PHQ-9 (Patient Health Questionnaire) which screens for depression and gives a result in the range 0–27 [26] and the GAD-7 (Generalized Anxiety Disorder) assessment of symptoms of anxiety which gives a result in the range 0–21 [27]. Respondents were also asked about their current need for medical treatment and medication, status of living, and work/study circumstances.
The complete medical record of each potential participant was reviewed by one of the researchers (JR) to verify the clinical diagnosis of restrictive eating disorder. A medical history including diagnosed psychiatric comorbidities, body mass index, weight loss, duration of symptoms and age was collected retrospectively from medical records and growth data.
Continuous variables
Age (years), body mass index (kg/m2), weight loss (kg), percentual weight loss (%), duration of symptoms (months) at the time of the initial diagnosis, age at follow-up (years) and follow-up time (years) at the end of follow-up were used as continuous variables.
The sums of PHQ-9 points (PHQsum), GAD-7 points (GADsum) and SCOFF points (SCOFFsum) were used as continuous variables.
Categorical variables
Patients were classified in one of two categories (outpatient/inpatient) depending on whether they underwent any length of inpatient stay during treatment. They were also classified in one of two categories (no comorbidity/comorbidity) depending on whether they were diagnosed with any psychiatric comorbidity (depression, post-traumatic stress, compulsive disorder or anxiety disorder) during treatment.
Details of the questionnaire’s categories are given in Supplementary Table 1. In addition, respondents had the opportunity to give more detailed information on their studies, work, living conditions, medication and need for check-ups in their answers to open questions.
Two different categories (studying/working, none) were used to classify work status.
The need for medical appointments was classified using two categories: no check-ups and medical check-ups (including check-ups in primary care or a mental health centre, eating disorder treatment, psychotherapy and check-ups in psychiatric clinics). Those with no check-ups were considered to have a good outcome.
Need for psychoactive medication was classified using two categories: no medication and psychoactive drugs (including drugs for attention deficit/hyperactivity, depression or anxiety and antipsychotic drugs).
Self-reported health status was classified in three different categories: good (including the answers very good and good), moderate and poor (including the answers poor and very poor).
Depression and anxiety symptoms were classified in two different categories based on the scores of the PHQ-9 and GAD-7 questionnaires. A total score above 10 was taken to indicate depression (no depression, depression) or anxiety (no anxiety, anxiety), respectively. Similarly, eating disorder symptoms were classified in three different categories according to SCOFF results (negative, 1 point, 2 points or more).
Study sample and attrition
Altogether 73 of 168 (43%) patients completed the questionnaire. Seven patients who could not be reached were considered non-respondents in the attrition analysis.
There were no remarkable differences between respondents (n = 73) and non-respondents (n = 102) in terms of baseline characteristics; mean body mass index was 16.1 kg/m2 for respondents and 15.9 kg/m2 for non-respondents, respectively (p = 0.481). Respondents were slightly older at the time of diagnosis, with a mean age of 14.8 years compared to 14.3 for non-respondents (p = 0.041). The rate of diagnosed psychiatric comorbidities was similar for respondents (n = 31, 43%) and non-respondents (n = 41, 39%) (p = 0.755).
Statistical analysis
The statistical analyses employed for this study were mostly descriptive; for continuous variables, means and standard deviations (SDs; for symmetric distributions) or medians and interquartile ranges (IQRs; for skewed distributions) are presented for the study groups while numbers and percentages are given for the categorical variables.
Statistical tests were performed to compare groups (respondents vs. non-respondents, FBcM-PC respondents vs. traditional treatment group respondents and respondents with a good outcome vs. those attending medical check-ups), including the Pearson’s chi squared test (or Fisher’s exact test when appropriate) for categorical variables and the Student’s t-test (symmetric distributions) or Mann–Whitney’s U-test (for skewed distributions) for continuous variables. IBM SPSS Statistics (version 27) was used for analysis [28]. All tests were two-tailed and p-values less than 0.05 were considered statistically significant.
Results
Baseline characteristics
Altogether 73 (43%) patients completed the questionnaires, 46% in the FBcM-PC group and 42% in the traditional treatment group, respectively (Table 1).
Table 1.
Baseline and follow-up characteristics of adolescent anorexia nervosa patients in study groups.
| FBcM-PC (n = 30) |
Common treatment (n = 43) |
All (n = 73) | ||||
|---|---|---|---|---|---|---|
| Mean (SD) | Median (IQR) | Mean (SD) | Median (IQR) | p-value | Mean (min - max) | |
| Baseline characteristics | ||||||
| Age at diagnosis (years) | 14.8 (1.4) | 14.8 (13.7–15.7) | 14.8 (1.3) | 14.8 (14.1–15.7) | 0.842a | 14.8 (10.8–17.8) |
| BMI at diagnosis (kg/m2) | 16.5 (1.5) | 16.7 (15.4–17.4) | 15.8 (1.6) | 15.9 (14.3–16.8) | 0.049a | 16.1 (12.9–20.3) |
| ISO-BMI (kg/m2) | 17.3 (1.6) | 17.1 (16.1–18.4) | 16.6 (1.6) | 16.8 (15.0–17.5) | 0.057a | 16.9 (13.6–22.1) |
| Weight loss (kg)c | 10.3 (6.1) | 8.8 (5.9–13.1) | 9.1 (5.3) | 9.1 (4.9–12.2) | 0.577b | 9.6 (0.8–31.5) |
| Percentual weight loss (%)c | 18.5 (7.8) | 17.8 (12.9–24.0) | 17.1 (8.0) | 17.5 (10.5–22.3) | 0.724b | 17.7 (2.1–41.5) |
| Duration of symptoms (months)d | 8.5 (5.1) | 7.5 (5.0–12.0) | 8.5 (6.6) | 7.0 (6.0–11.0) | 0.819b | 8.5 (1–42) |
| Follow-up characteristics | ||||||
| Age at follow-up (years) | 20.3 (2.4) | 20.2 (18.9–21.4) | 22.2 (2.9) | 22.3 (20.3–24.4) | 0.005a | 21.4 (15.4–27.7) |
| Follow-up (years) | 5.5 (1.8) | 5.7 (3.8–6.9) | 7.4 (2.7) | 8.0 (5.4–9.4) | 0.003a | 6.6 (2.8–14.8) |
| PHQsum | 7.0 (4.7) | 6.5 (4.0–10.3) | 8.9 (6.1) | 8.0 (4.0–13.0) | 0.232b | 8.1 (0–26) |
| GADsum | 5.6 (4.3) | 4.0 (2.8–9.0) | 6.6 (5.0) | 6.0 (2.0–9.0) | 0.445b | 6.2 (0–21) |
| SCOFFsum | 1.0 (1.1) | 0.5 (0 − 2.0) | 1.2 (1.1) | 1.0 (0 − 2.0) | 0.442b | 1.1 (0–4) |
Continuous variables.
FBcM: family-based coaching method; PC: primary care; BMI: body mass index; ISO-BMI: body mass index-for-age; PHQ: Patient Health Questionnaire; GAD: Generalized Anxiety Disorder; SCOFF: Sick, Control, One, Fat, Food; SD: stadard deviation; IQR: interqartile range. aStudent’s T-test. bMann-Whitney U-test. cdata missing from 2 patients. ddata missing from 3 patients.
Most of the respondents were diagnosed with anorexia nervosa (F50.0), 73% in the FBcM-PC and 79% in the traditional treatment group, respectively. The rest of the patients had atypical anorexia nervosa (F50.1).
There were no differences in mean age (14.8 vs. 14.8 years) or duration of symptoms (8.5 vs. 8.5 months) at the time of initial diagnosis between the study groups. Respondents treated with FBcM-PC had slightly higher mean body mass indices (16.5 vs. 15.8 kg/m2, p = 0.049), but mean body mass index for age (17.3 vs. 16.6 kg/m2, p = 0.057), mean weight loss (10.3 vs. 9.1 kg) and mean percentual weight loss (18.5 vs. 17.1%) prior to diagnosis were similar for both groups. The rate of psychiatric comorbidities diagnosed during initial treatment was 30% in the FBcM-PC and 51% in the traditional treatment groups (p = 0.094), respectively.
The outpatient treatment regime was significantly more common in the FBcM-PC than in the traditional treatment group (87% vs. 9%, p < 0.001).
FBcM-PC respondents were slightly younger (20.3 vs. 22.2 years, p = 0.005) when they answered the questionnaire and had shorter follow-up times (5.5 vs. 7.4 years respectively, p = 0.003) than respondents in the traditional treatment group.
Current psychosocial circumstances and self-reported health
No significant differences were found between the study groups in study/work status or self-reported health at follow-up (Table 2).
Table 2.
Self-reported long-term outcome of adolescent anorexia nervosa patients after mean 6.6 years follow-up.
| FBcM-PC (n = 30) | Traditional treatment (n = 43) | All (n = 73) | ||
|---|---|---|---|---|
| n (%) | n (%) | p-value | N (%) | |
| Self-reported health | 0.678a | |||
| Good | 18 (60%) | 22 (51%) | 40 (55%) | |
| Moderate | 11 (37%) | 18 (42%) | 29 (40%) | |
| Poor | 0 | 3 (7%) | 4 (5%) | |
| Need of appointments | 0.052b | |||
| No medical check-ups | 23 (77%) | 23 (54%) | 46 (63%) | |
| Medical check-ups | 7 (23%) | 20 (46%) | 27 (37%) | |
| Need of medication | 0.177b | |||
| No psychoactive drug | 25 (83%) | 29 (67%) | 54 (74%) | |
| Psychoactive drug | 5 (17%) | 14 (33%) | 19 (26%) | |
| Depression symptoms | 0.320b | |||
| No depression | 22 (73%) | 26 (60%) | 48 (66%) | |
| Depressionc | 8 (27%) | 17 (40%) | 25 (34%) | |
| Anxiety symptoms | 0.767b | |||
| No anxiety | 25 (83%) | 34 (79%) | 59 (81%) | |
| Anxietyd | 5 (17%) | 9 (21%) | 14 (19%) | |
| Eating disorder symptoms | 0.213b | |||
| SCOFF negative | 15 (50%) | 15 (35%) | 30 (41%) | |
| SCOFF 1 point | 3 (10%) | 11 (25%) | 14 (19%) | |
| SCOFF 2 point or more | 12 (40%) | 17 (40%) | 29 (40%) |
FBcM: family-based coaching method; PC: primary care.
Fisher’s exact test.
Pearson’s chi-square test.
Patient Health Questionnaire score above 10.
Generalized Anxiety Disorder score above 10. SCOFF = Sick, Control, One, Fat, Food.
Altogether 97% of respondents in the FBcM-PC and 91% in the traditional treatment group were studying or working. In addition, 85% of the young adults (aged 18 years or more) in the FBcM-PC and 85% of those in the traditional treatment group respectively reported living on their own.
Self-reported health was good for 60% of the FBcM-PC and 51% of the traditional treatment group, respectively.
PHQ and GAD
There were no significant differences in results on depression or anxiety questionnaires between the study groups (Table 2).
Altogether, 27% of those in the FBcM-PC and 40% of those in the traditional treatment group had signs of depression. Similarly, 17% of respondents in the FBcM-PC group and 21% of those in the traditional treatment group had signs of anxiety disorder.
Scoff
There were still concerns about eating in both study groups after a mean of 6.6 years of follow-up. In both study groups 40% of respondents answered yes to two or more of the SCOFF questions (Table 2).
Need for medical appointments and medication
Altogether, 77% of respondents in the FBcM-PC and 54% in the traditional treatment group did not need medical check-ups (p = 0.052) (Table 2).
Psychoactive drugs were taken by 17% of the FBcM-PC and 33% of the traditional treatment group (p = 0.177).
Respondents with good outcome
The PHQ, GAD and SCOFF scores of respondents with good outcomes differed significantly from those of respondents who still needed medical check-ups. PHQsum was 6.0 versus 11.7 (p < 0.001), GADsum was 5.1 versus 8.1 (p = 0.006) and SCOFFsum was 0.8 versus 1.6 (p = 0.003) for the two groups respectively.
Discussion
Our study shows that the family-based coaching outpatient treatment method for adolescent anorexia nervosa can be safely implemented in primary care and that long-term outcomes are not inferior to those of patients who receive traditional treatment in tertiary care.
There are not many published studies which discuss interventions treating anorexia nervosa in primary care, and we found no previous publications which report long-term outcomes of anorexia nervosa patients treated in primary care. Our FBcM-PC started when a patient with severe anorexia nervosa (body mass index 14.3 kg/m2) was successfully treated as an outpatient in primary care, at first mostly at the family’s request. That encouraged the paediatrician to start using the FBcM-PC method for other patients instead of sending them directly to tertiary care.
The FBcM-PC resembles the well-known family-based treatment [14] in keeping the parents in the key position to overcome adolescent’s eating disorder. The main difference was that our method was not manualized but tailored to the patient’s and family’s needs and the main responsibility of the outpatient treatment was taken by a single primary care provider.
Our study had some limitations. First, the FBcM-PC was conducted by a single provider with real-life patients and there was no manual to follow in the beginning, so it is not possible to exclude the intuitive and personal influence for the treatment and patients. Moreover, the number of patients was rather low and the study design was not prospective, randomised or controlled. Also, the outcome result depended on self-reported data and did not include current somatic status or face-to-face interviews.
Although the response rate was rather low, we consider that due to the similar base-line characteristics of respondents and non-respondents this study represents the typical adolescent anorexia nervosa patients treated in our area fairly well.
The study groups, based on unselected real-life anorexia nervosa patients, seemed comparable according to their baseline characteristics. Although the patients in the traditional treatment group had a slightly lower mean baseline body mass index indicating possible selection bias, percentual weight loss, body mass index for age and diagnosed psychiatric comorbidities did not differ between the study groups. It is logical that most of the patients in the traditional treatment group received inpatient treatment, since inpatient treatment has been the traditional practice in our area for years. Moreover, the FBcM-PC was a novel method focusing on outpatient treatment and available in only one health care area during those years.
There is no consensus on how to classify outcomes in anorexia nervosa [29,30] and the natural outcome of anorexia nervosa and its aetiology are still not known. In this study, the respondents who no longer needed medical check-ups were considered to have a good outcome as they reported significantly less signs of depression and anxiety and eating disorder symptoms. Thus, the outcome classification in this study is only indicative since people with eating disorder may be very reluctant to seek help from health care [1].
It has been reported that around 68%–82% of adolescent anorexia patients recover within 7–10 years [1,4,31]. The recovery rate of 82% in a Norwegian county sample using systematic family-based method [31] seems comparable to our 77% recovery rate in FBcM-PC treated patients. We have previously reported that 75% of anorexia nervosa patients (body mass index <16.5 kg/m2) treated mainly using outpatient FBcM-PC were in remission after 3–4 years of follow-up [13]. In light of our earlier results the recovery rate of 77% in the current study is promising and supports the good long-term remission rate in patients treated with FBcM-PC.
The recovered anorexia nervosa patients in this cohort seemed to be doing well, as reported in earlier clinical and community-based studies [3,4], according to which most of them were able to study or work as well as to live on their own as young adults.
Psychiatric comorbidities in former anorexia nervosa patients are a well-known phenomenon in long-term follow-up studies [1,4]. According to their scores on the depression and anxiety questionnaires (PHQ-9 and GAD-7), FBcM-PC-treated anorexia patients’ mental health was not worse than that of the general young population according to the annual school health questionnaire administered in Finland, which found that about 31–35% of female college and vocational students reported having some depressive (PHQ-2) and anxiety (GAD-7) symptoms [32].
Herpertz-Dahlmann et al. concluded in their prospective 10-year follow-up study that adolescent anorexia patients who achieve complete recovery from the eating disorder have a good chance of overcoming other psychiatric disorders [4]. We did not specifically ask about other diagnosed psychiatric disorders in our questionnaire but taken together the low need for psychoactive medication (17%) and medical check-ups (23%) in the long-term follow-up indicate that the majority of the FBcM-PC patients seemed to have overcome any other psychiatric disorders.
The SCOFF screening test can be used as an aid in ruling out the possibility of eating disorders and the threshold of two positive answers seems to have the best ability to detect eating disorders in young adults aged 20–35 years [33]. In a Finnish population-based study administered after COVID-19 in 2023, around 28% of female college and vocational students exceeded the threshold of two positive SCOFF answers [32]; against this background, it is not surprising that two positive SCOFF answers were given by 40% of the former anorexia patients in our study. However, our results confirm earlier findings concerning long-lasting concerns about body shape and weight in patients with eating disorders [34].
Our long-term study shows that the FBcM-PC is a safe first-line treatment method for adolescent anorexia patients, which has advantages such as early access and active age-matched intervention in adolescent anorexia [6] as well as continuity of care [35].
There is a need for a larger randomised controlled study including analysis of the cost-effectiveness of anorexia nervosa treatment in primary care. It is obvious that providers and attending staff treating anorexia patients in primary care need to be interested and well-supervised for family-based treatment methods to be successful. The Mayo Clinic’s 2021 study, where voluntary primary care providers were trained and supervised in FBT methods, reported positive insights due to early access and comparable outcome results to traditional treatment [17,18]. Our clinical experience has been similar and moreover, in our earlier register study of adolescent anorexia patients (body mass index < 16.5 kg/m2) we found that the real costs for the community of outpatients treated in primary care were only 7% of the costs of inpatient treatment during the mean 3.4 years of follow-up [13].
Encouraging the simple goal of treating malnutrition by advising and actively supporting families may lower the threshold for primary care providers to take responsibility for first-line treatment. Unstable patients, those who do not respond to this intervention and those with more severe mental concerns should still be referred to tertiary care when needed.
Conclusion
The family-based coaching method of treating adolescent anorexia nervosa in primary care was found to be as safe as traditional treatment in this long-term follow-up study. The results suggest that focusing resources on research and development of further family-based treatment methods in primary care would be beneficial.
Supplementary Material
Funding Statement
This work was supported by The Alma and K.A. Snellman foundation, Oulu, Finland and The Finnish medical foundation.
Disclosure statement
No potential conflict of interest was reported by the author(s).
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