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. 2019 Jan 15;9(1):e024179.
doi: 10.1136/bmjopen-2018-024179.

Treatment outcomes for eating disorders in Sweden: data from the national quality registry

Per Södersten  1 , Ulf Brodin  1 , Jennie Sjöberg, Modjtaba Zandian  1 , Cecilia Bergh
Affiliations

Treatment outcomes for eating disorders in Sweden: data from the national quality registry

Per Södersten et al. BMJ Open. .

Abstract

Objective: To report the outcomes of eating disorders treatment in Sweden in 2012-2016.

Design: The number of patients treated and the number of patients not fulfilling an eating disorders diagnosis (remission) at 1 year of follow-up at the clinics listed in the National Quality Registry for Eating Disorders Treatment were analysed. The published outcomes at three clinics, which used survival analysis to estimate outcomes, were compared with their outcomes in the registry. Outcomes at the three biggest clinics were compared.

Setting: All eating disorders clinics.

Participants: All patients treated at eating disorders clinics.

Intervention: Cognitive-behavioural therapy at most clinics and normalisation of eating behaviour at the three clinics with published outcomes.

Outcome measure: Proportion of patients in remission.

Results: About 2600 patients were treated annually, fewer than half were followed up and remission rates decreased from 21% in 2014 to 14% in 2016. Outcomes, which differed among clinics and within clinics over time, have been publicly overestimated by excluding patients lost to follow-up. The published estimated rate of remission at three clinics that treated 1200 patients in 1993-2011 was 27%, 28% and 40% at 1 year of follow-up. The average rate of remission over the three last years at the biggest of these clinics was 36% but decreased from 29% and 30% to 16 and 14% at the two other of the biggest clinics.

Conclusions: With more than half the patients lost to follow-up and no data on relapse in the National Quality Registry, it is difficult to estimate the effects of eating disorders treatment in Sweden. Analysis of time to clinically significant events, including an extended period of follow-up, has improved the quality of the estimates at three clinics. Overestimation of remission rates has misled healthcare policies. The effect of eating disorders treatment has also been overestimated internationally.

Keywords: health policy; public health.

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Conflict of interest statement

Competing interests: Complete openness concerning financial arrangements is intended here. UB, JS and MZ declare that they have no financial interests related to this study. Our research is carried out at the Karolinska Institute, where PS is a professor emeritus. The research is translated clinically by Mando Group AB, a company started by PS and CB, who have 47.5% of the stock each. Professor Michael Leon of the University of California at Irvine has 5%. Mando Group AB contracts with the County Council of Stockholm every fifth year to treat patients with eating disorders. Mando Group AB signed its first contract in 1997 with the County Council of Stockholm and, since then, its treatment is one of the standards of care offered to the citizens of Stockholm. This arrangement is the same as when the County Council of Stockholm contracts with its own clinics to treat patients with all kinds of disease, including eating disorders. That is to say, the County Council of Stockholm provides eating-disorder services to the citizens of Stockholm both through a clinic of its own and through Mando Group AB. There is a third provider of care for patients with eating disorders in Stockholm, which is a private clinic. All healthcare in Sweden is funded through the tax system; private pay is extremely uncommon. It should be added, first, that Mando Group AB is in compliance with the recommendation of the International Committee of Medical Journal Editors on ’Author Responsibilities-Conflicts of Interest', http://www.icmje.org/recommendations/browse/roles-and-responsibilities/author-responsibilities--conflicts-of-interest.html. Second, it should also be added that all profit that Mando Group AB has made has been reinvested in research and development and that there have been no dividends to stock owners. All of the above is declared in all manuscript submissions and thus far, journals have judged it necessary to publish only some of the details. It seems, however, that the potential ethical problem when scientists translate their research findings into the clinic in a company is not unlike that which arises when any scientist, in an academic setting, is developing a theory and needs further economic funding for his or her work and may receive recognition and financial benefits for the work. The incentive is, in part, economic in this case as well and the ethical ’problem' is similar in both cases. However, the more important incentive is the improvement of the treatment of patients with eating disorders. We are researchers working in an academic setting and like many other medical research institutes today, the Karolinska Institute encourages scientists to translate their research into the clinic in companies that aim to generate financial profits to be used for research and development (see: http://ki.se.proxy.kib.ki.se/sites/default/files/summary_strategy2018.pdf).

Figures

Figure 1
Figure 1
Number of patients treated at all clinics in Sweden and proportion of patients followed up and in remission 1 year later. The year on the x-axis indicates the year of follow-up, the corresponding number of patients starting their treatment the year before.
Figure 2
Figure 2
Proportion of patients in remission at all clinics that followed up their patients and at clinics that treated at least one patient to remission.
Figure 3
Figure 3
Number of clinics that treated, followed up and treated at least 20 patients to remission and proportion of clinics that followed up and treated at least 20 patients to remission in 2012 and 2016.
Figure 4
Figure 4
Number of patients treated at clinics that followed up fewer than 10 patients (2013–2016) or 20 patients (2012) and proportion of patients followed up and in remission one year later. The year on the x- axis indicates the year of follow-up, the corresponding number of patients starting their treatment the year before.
Figure 5
Figure 5
Proportion of patients treated to remission at the three clinics that treated more patients to remission than any other clinic, the Stockholm Centre for Eating Disorders (SCED), the Capio Centre for Eating Disorders (Capio) and the Mandometer Clinic in Stockholm (Mando).
See this image and copyright information in PMC

References

    1. Swedish Association of Local Authorities and Regions. Swedish national quality registries [Internet]. http://kvalitetsregister.se/englishpages.2040.html (cited 7 May 2018).
    1. Government Offices of Sweden. Överenskommelse om stöd till nationella kvalitetsregister under 2018 [Internet]. http://www.regeringen.se/overenskommelser-och-avtal/2017/12/nationella-k... (cited 7 May 2018).
    1. Swedish Association of Local Authorities and Regions. Vården i Siffror [Internet]. https://vardenisiffror.se/ (cited 7 May 2018).
    1. Birgegård A, Norring C, Norring S. National quality register for eating disorders treatment [Internet]. https://riksat.registercentrum.se/ (cited 7 May 2018).
    1. von Hausswolff-Juhlin Y. Från evidens till praktiska råd [Internet]. https://urplay.se/program/203090-ur-samtiden-ny-kunskap-om-atstorningar-... (cited 7 May 2018).

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