Despite the impression that the quality of available treatment for eating disorders is steadily improving, research from the last 10 years suggests that an increasing number of eating disorders patients are dropping out of therapy.1 Most studies of treatment drop-outs have focused on demographics and patient characteristics as possible predictors of individuals who might leave treatment early.2 Surprisingly few studies have investigated treatment characteristics or aspects of the therapeutic relationship that might lead patients to drop out of treatment.3 One area that is almost completely neglected in research is the patient’s experience or perception of dropping out. That is, from the patient’s viewpoint, what are the possible motives or reasons for premature termination of treatment?
A Study to Identify Factors in Dropping Out
To get a better insight into the meaning of dropping-out from therapy, we designed a one-year study. In this study, we defined a drop-out as “any termination of the inpatient treatment that was against the initial agreement or was not negotiated between patient and staff.” From January 1 to December 31, 2008, we compared the viewpoints of patients and staff in 21 cases (15.2% of 138 patients) where patients had dropped-out of treatment. The study was done at a 35-bed ward for eating disorders treatment in a general psychiatric hospital. At the treatment unit, female patients 15 years of age or older are accepted for treatment, and their care is covered by the Belgian national health insurance system. Patients stay in treatment for at least 1 week and a maximum of 6 months, and part of their stay may be in day treatment. The multidisciplinary treatment program is offered in a group format, with the exception of a few individually directed sessions at admission, and when necessary.
All newly admitted patients remain for at least 7 days, as a test week, with an explicit agreement that they will be free to leave the hospital except in cases of serious medical risk. Those who remain in the program after the first week then enter a “motivation program,” including 3 weeks of psychoeducation and exploratory group sessions. During the next 3 weeks, the patient decides whether she prefers further specialized inpatient treatment or wishes to continue with outpatient treatment in her home area. Patients who are ambivalent about inpatient or outpatient treatment or treatment at all are welcome to come back for treatment when they feel they are “ready for it.”2 If the patient decides to stay, she begins in the intensive group therapeutic program for at least 2 months.
A Special Self-report Questionnaire
We developed a special self-report questionnaire for the study. Participants were asked to rate a series of 12 explanations for dropping-out, using a 4-point Likert scale ranging from 1 (‘not at all’) to 4 (‘completely agree’). The possible explanations included: (1) There was sufficient progress in the treatment; (2) Trust in the treatment was gone; (3) Treatment was too difficult; (4) Insufficient results; (5) Conflict with the staff; (6) Conflict with other patients; (7) Not enough freedom; (8) Stopped treatment as a result of pressure by the family the family or partner; (9) The selected treatment was not the appropriate approach; (10) The treatment was not a personal choice; (11) The treatment jeopardized school or work; or (12) The treatment was a financial burden.
After each statement, there was room on the form to add a personal comment. If a reason for stopping treatment was not found among the 12 listed, other motives could be filled in at the end of the questionnaire. Most patients filled out the questionnaire shortly before discharge; in four cases, the questionnaire was completed within 10 days of discharge. The ratings by the staff were completed by one of the two nurses who were mainly in charge of that particular patient during her stay at the center.
How the Staff and Patients Responded
Both patients and staff reported that important reasons for dropping out included the following: not enough freedom, treatment was too difficult, and lack of trust. The staff placed far more importance on “lack of trust” than did patients. Patients, on average, placed this in the fifth position of importance. Patients were more often satisfied with treatment and therefore did not expect any benefit from continuing it. They often found their studies or work in danger because of the hospital stay. A conflict with the staff was not regarded to be an important reason for patients, although the staff rated this as somewhat more important.
When the personal comments added at the end of the questionnaire were analyzed, the statement “sufficient progress” elicited the most comments: 12 from patients, and 9 from staff. Patients usually stressed the fact that they were satisfied with the improvement thus far and/or considered themselves ready for further care in an outpatient setting. Most comments by the staff had a “yes-but” quality; that is, some progress was acknowledged but was considered too weak a basis for stopping treatment. Concerning selection of “lack of freedom,” a few patients made the remark that they felt locked-up in the hospital and/or that the rules (permissions to leave the hospital) were too strict. The motive that “treatment was too difficult” was specified by several patients as referring to the difficulty with group therapies and/or the need for more individual therapy. Similar comments, also by staff, were added to the explanation “treatment was inappropriate.” For 7 patients, the motive “lack of trust” meant something very specific: lack of trust in group members, lack of self-confidence, or loss of hope. Other comments did not reveal special meanings or interpretations. Five times patients noted additional reasons for termination: homesickness (2 times), difficult situation at home (2 times), and the wish to be back in their “normal life.”
Should the Term ‘Drop-out’ Be Dropped?
It is difficult to compare drop-out figures in the literature because many elements may influence the course of treatment, including sample compositions, treatment methods, and even the definition of drop-out.4 The term drop-out, in its most neutral definition, means “to abandon an attempt, activity, or chosen path.” Another common definition of drop-out is “to withdraw from established society, especially because of disillusion with conventional values,” and “to give up in the face of defeat or when lacking hope.” Because of such negative connotations, we propose abandoning the term “drop-out” in the context of clinical work. The same holds true for the expression “discharge against medical advice.” Instead, we propose using the phrase, “premature termination of treatment” when the decision is unilaterally made by a patient, and “premature discharge” if the clinician or staff has made the decision.
One limitation of our study was that it only covered the opinions of a small group of patients in one program. However, it is the first time that views of patients as well as staff have been compared on this issue. If clinicians listen to the voices of the patients, as we did in this study, prematurely stopping therapy can be a positive decision and not just a flight from it. Several patients considered further inpatient treatment no longer worthwhile since they had obtained what they had believed to be “sufficient progress.” Several of the women who prematurely halted treatment in our program reported that the treatment was too difficult or inappropriate. We can deduce from the personal comments that our group approach may not be appropriate for patients who expect a more individualized approach. To evaluate this more thoroughly, we are planning a new study with follow-up of our premature terminators to see whether another, more individualized approach would be more beneficial to them.