You left our inpatient program a year ago, or two, or four. Perhaps you’re in a totally different place now – physically, mentally, emotionally, geographically even – or maybe you feel like you’re back where you started, experiencing active, debilitating eating disorder symptoms and seeking another trial of structured, intensive care. Or, of course, you might be anywhere in between – making slow but steady progress in eating disorder recovery and in creating the life you’d like outside of the illness.
Any which way, it’s a long time since you signed a consent form for our Longitudinal Follow-Up Study, giving our team permission to call you, or to reach out to friends or family designated by you as alternate contacts, so that we can speak to you and find out how you’re doing.
You might be asking yourself:
- Why do they want to talk to me?
- Do they really want to know how I’m doing if I’m not doing that well?
- What are they going to ask?
- What will it be like for me to answer their questions?
- Are they going to call me again next year?
We are incredibly grateful for the scientific contribution that patients who come to our program make. From admission to discharge from our inpatient unit, we view you as junior collaborators who are helping us learn more about a group of devastating, sometimes very difficult-to-treat illnesses. With the establishment of the Longitudinal Follow-Up Study in 2010, we have asked those who are willing to continue to contribute to research with us even after leaving our care.
We want to talk to you to gather information about what happens with eating and weight problems over time, ultimately to add to the field’s understanding of long-term outcomes for those with anorexia and bulimia nervosa. We also know that it is important to evaluate outcomes of individuals who participate in our specific program, so that we can accurately report it to patients in the future who are evaluating us amongst a range of treatment options.
We absolutely want to know how you’re doing – no matter how you are doing. We know, better than many, that these are very difficult illnesses and that not everyone we treat is guaranteed to be feeling fully (or at all) well at future time-points. If you’re not doing well, we might be able to assist you with another treatment referral, or even simply to remind you that, as Dr. Attia aptly puts it in this video, “recovery is always possible.”
Remember, the information being collected is not about you as an individual; it is about you as part of a group of people who are receiving treatment for an eating disorder. We are not judging – we are learning, and you are helping us to do so.
The phone interview, which can be scheduled at your convenience, is designed to take about 15-20 minutes of your time. We will ask you a range of questions about topics including:
- Current living arrangements
- Work/school/financial situation
- Weight status and recent history
- Current eating behavior
- Treatment for the eating disorder, or other psychiatric problems
- Current or recent medical issues
In some cases, we might ask to verify information—or to obtain information that you don’t have—from your physician or other treatment providers.
Of course, we cannot predict what it will feel like to you to hear from us, or to answer these questions. The experience might elucidate you of how far you’ve come, clarify lapses that you want to now address, or remind you that help is and will be out there for you when you are ready to re-engage with it.
We understand that it can be upsetting to talk about ongoing or past problems—rest assured that you can certainly end the interview at any time you’d like. We invite you let us know what it’s like to be a participant in this kind of study—that’s just as important for us to understand as every other data point your answers to our questions will provide.
The study is designed to collect data for a decade following participation in our inpatient program. That means you can expect to hear from us, year after year, for ten years! After that, we will stop contacting you for Longitudinal Follow-Up Study purposes. But you are more than welcome to stay in touch with us and let us know how you’re doing at any time—we would love to hear from you.
