Recovery from an eating disorder involves more than a retreat of symptoms.
“Recovery” is frequently heard in the realm of eating disorders treatment, but how best to define it? Four sessions at the International Conference on Eating Disorders (ICED) in Prague offered thought-provoking ways to better define and improve recovery for patients. One conclusion from the sessions was there is still no clear consensus on what constitutes “recovery” from an eating disorder. This lack of agreement has much to do with the different ways clinicians and patients and families view “recovery.”
Taking a Patient-Centered Approach to Recovery
Sara Forman, MD, of Boston Children’s Hospital and Massachusetts General Hospital, Boston, told the audience that recovery has largely been defined by physiologic markers and behaviors, including weight restoration, resumption of menses, and scores on eating disorder measures. She added that the current definition of “recovery” has largely been driven by clinicians.
Dr. Forman reminded the audience that the Institute of Medicine defines patient-centered care as “Providing care that is respectful of, and responsive to, individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” She described her group’s recent collaboration with the National Eating Disorder Quality Improvement Collaborative (NEDQIC), a national 18-site collaborative of adolescent medicine-based programs seeking to improve care for youth with eating disorders by using quality improvement methods.
In a recent study, Dr. Forman and her colleagues sought ways to improve and provide quality care for younger patients with EDs. Study participants were recruited from adolescent medicine programs at Boston Children’s Hospital, the C.S. Mob Children’s Hospital at the University of Michigan, and Penn State Hershey Children’s Hospital. The adolescents and their parents were recruited from outpatient and partial hospitalization programs. Clinicians recruited for the study mostly came from previous clinical collaborations and from the Society for Adolescent Health and Medicine Eating Disorder Special Interest Group. The final study group included 24 patients 12 to 23 years of age (mean age: 16.7 years). The young patients had diagnoses all across the ED spectrum (17 with AN, 4 with BN, 1 with BED, and 2 with avoidant restrictive food intake disorder [ARFID]).
Different definitions of recovery. The study results showed that patients and parents were far more likely to define recovery by self-acceptance, living without a constant focus on food, and by their overall quality of life. In contrast, clinicians frequently judged recovery from an ED solely by physiologic markers such as weight gain and BMI.
Dr. Forman stressed the importance of looking beyond physiologic markers and acknowledging the whole person when evaluating recovery from an eating disorder. Collaboration and communication among clinical team members, the patient and family members are crucial because healthcare providers may judge “recovery” differently from patients and their families. Dr. Forman said the study is ongoing and the next steps will include launching the Boston prospective registry pilot program and expansion of the prospective registry to include additional NEDQIC sites.
Establishing Criteria for Recovery
Psychologist Jan Alexander de Vos, of the University of Twente, Enschede, the Netherlands, noted that researchers and current as well as recovered ED patients have emphasized that remission of symptoms alone is an incomplete reflection of recovery. Dr. deVos cited a meta-analysis by Vall and Waid showing that remission of symptoms was used to define recovery in 80% of 126 studies (Int J Eat Disord. 2015; 48:946).
In addition to a reduction in symptoms, de Vos pointed out that a number of criteria for recovery include emotional regulation and self-management, self-esteem, self-acceptance, the presence of healthy interpersonal relationships, self-empowerment, and identity development. When Dr. de Vos and his co-workers did a thorough literature search, some patient characteristics stood out. The three criteria most often rated by patients were: psychological well-being reflected by personal growth (18.5%), self-acceptance (17.6%), and positive relationships with others (13.4%). Slightly more than 50% of all criteria for recovery involved psychological well-being, while 20.8% centered on remission of eating disorder pathology.
“We conclude that recovery is not only about the remission of symptoms but also about the presence of positive health dimensions,” said de Vos. He and his colleagues recommend that clinicians include instruments that at the least measure psychological well-being and self-adaptability in research, paired with routine outcome monitoring.
Setting up a Relapse Prevention Plan
In her presentation, “Rate, Timing, and Predictors of Relapse,” Tamara Berends, nurse practitioner with the Altrecht Eating Disorders Rintveld group in Holland, described the post-treatment program her group developed to help prevent relapse and promote recovery for ED patients (BMC Psychiatry. 2016; 16:36). The relapse prevention guideline has three major parts. Part 1 is a theoretical framework for relapse and relapse prevention, developed on the basis of both the literature and practical experience of experts and patients, leading to conclusions and recommendations for clinical practice. Part 2 translates the recommendations into a practical manual for professionals. Part 3 is a workbook for patients and the network members.
Berends pointed out that up to 57% of patients with AN relapse after treatment, and the greatest risk for relapse occurs within the first 18 months after discharge. She then described the results of a cohort study of 83 AN patients who had inpatient and outpatient treatment. The group’s mean body mass index (BMI) at the beginning of treatment was 16.4 mg/kg2. The mean age of the study participants was 17.9 years, and the mean age of onset of AN was 14 years. The mean BMI at the start of the aftercare program was 20 mg/kg2.
To qualify for the study, all participants had successfully completed treatment, were weight-restored, and had a diagnosis of AN or EDNOS. In addition all had had been given a personalized relapse prevention program. The study offered an aftercare program, which lasted an average of 18.4 months.
Berends reported that the full relapse rate, 11%, was relatively low. Seventy percent, or 58 patients, did not relapse after treatment ended. Nineteen percent (n=16) of patients had partial relapses, defined as the reappearance of 1 or more core symptoms. Once the aftercare program was intensified for up to 3 months, all these patients returned to the recovered status.
The author said, “We recommend that all patients with AN have a personalized relapse prevention plan at the end of their treatment, and be monitored at least 18 months after discharge.” [Note: Materials for the authors’ relapse program, including the background and explanation, clinician manual, and patient workbook, can be downloaded at no cost at: www.relapse-an.com .]
Using Patient Narratives to Help Support Recovery
Australia’s Butterfly Foundation was founded in 2002 by Claire Middleton to help improve gaps in public health care for people with eating disorders. Middleton had much personal experience with EDs, including having two daughters with AN and personal bouts with bulimia early in life.
Christine Morgan, CEO of the Butterfly Foundation, headquartered in Sydney and Melbourne, Australia, and Lesley Cook, of Partners in Practice, developed an “Insights in Recovery Guide” designed to use patient narratives to give patients support during recovery. Recovery support is not an optional afterthought, said Morgan, but a vital component of treatment and prevention. Providing access to professional and peer support during and after treatment helps patients sustain behavior changes and prevents relapse.
Morgan underscored some of the challenges of recovery, including still unacceptably high rates both of dropout from treatment and of relapse, recurrence of symptoms after treatment, and the fact that many people with EDs never seek treatment. Another challenge, she said, is working with the ‘whole person’ when the patient is severely unwell and cannot see beyond his or her disorder. A solution to this may be international adoption of a person-centered and recovery-oriented practice, she said.
Morgan and Cook developed an anonymous online collection of narratives, using input from face-to-face focus groups and from clinicians and others with life experience with eating disorders. The primary question was, “What would you want health professionals to know about recovery?”
When the individual patient narratives were merged, a key message emerged, according to Cook and Morgan. The message was: “Help me (the whole person in the context of my family and friends, my life and dreams) to feel (help me deal with thoughts and feelings in a positive way) safe (to feel understood, less afraid and more helpful in my journey through recovery). Of the 104 adults who had recovered from severe illness, 95% were females, and all had undergone multiple forms of treatment: 77.2% had seen a psychologist, 49% had inpatient treatment, 38.6% had visited a psychiatrist, 33.3% had visited a nutritionist, 21.2% had visited an eating disorders day program, and 14% had participated in an ED day program. Only 13% viewed their treatment as unsuccessful.
According to the authors, the narratives of ED patients who have recovered can be a powerful tool. It directly engages the knowledge of real-life experiences and also enables clinician and patient to work together to design treatment approaches, using the stories and direct voices of those who have recovered in learning resources and practice guides, said Morgan.