Objective
The objective of this research is to understand what people with diabetes believe put them at risk to begin restricting their insulin, and how their healthcare professionals, during clinic appointments, might help identify that risk and prevent insulin restriction. The research questions are, “What are the risk factors and behavioral cues that signify a person with T1D may develop an eating disorder?” and “What behavioral cues could be used by healthcare professionals who manage diabetes to identify and prevent eating disorder behaviors?” This qualitative study will be conducted in two aims over a period of three years, with an outcome of creating a resource guide of best practices to use in diabetes clinics to identify and prevent eating disorders.
Background Rationale
Eating disorders in type 1 diabetes (T1D) are rarely understood or recognized outside the T1D patient and diabetes medical community. In this proposal, we define eating disorder as the uniquely dangerous symptom for diabetes: insulin restriction as a means of weight control and calorie purging, often called “diabulimia” by the media and lay public. Insulin restriction can lead to rapid and dramatic weight loss, but also increases the risk of both acute and long-term complications and increases the risk of premature death.
As many as 31% of women with T1D report intentional insulin restriction, with these rates peaking in adolescents and early adulthood (40% of women between age 15-30 years). Eating disorders often persist, become more common, and increase in severity over the young adult years; indeed, the average onset is around 23 years of age. Research suggests that women with T1D have close to 2.5 times the risk for developing an eating disorder than women without diabetes. The percentage of females who admit to insulin restriction varies with age and by study, from ∼15% of girls in their mid-teen years to ∼30% of older teenagers and adult females. In an 11-year study of adult women with T1D (n=234), results showed insulin omission to be common with omission persisting over the follow-up period; this was associated with higher rates of diabetes-related medical complications and tripled risk of death. For these reasons, it is important to learn early identification strategies to assist with prevention of insulin restriction and eating disorders in T1D.
One person with diabetes and insulin omission said: "Ignorance and misunderstanding. They just don’t get it, have never heard of it, or don’t understand how stuck you are."
Healthcare professionals have difficulty identifying people with type 1 diabetes and disordered eating, and have described the problems of insufficient awareness and lack of skills. Healthcare professionals report feeling that insulin manipulation to control weight can be more challenging to detect than more typical behaviors like food restriction or symptoms of calorie purging; consequently, healthcare professionals feel they lack competency to identify and treat disordered eating in type 1 diabetes. Specific quotes included:
"A lot of the patients [with diabetes] that have eventually been referred to us actually don't meet the criteria in terms of weight and BMI, and there isn't that obvious sense that there might be an issue."
"We probably see people with eating disorders and diabetes but don't quite pick it up when they come in."
By interviewing patients with T1D and eating disorders and healthcare professionals, we hope to give healthcare professionals the guide that they need to obtain the skills in addressing this severe problem of insulin omission in diabetes patients.
Description of Project
Eating disorders in type 1 diabetes (T1D) are not well understood, especially the harmful and dangerous restriction of insulin to lose weight. This restriction of insulin is called diabulimia. Diabulimia happens when a person skips the insulin needed to treat their type 1 diabetes on purpose in order to lose weight. When you have type 1 diabetes, your body can’t make insulin. This means you can’t use sugar for energy, so blood sugars rise and are released in excess in your urine. Without enough insulin, you also create ketones as a source of energy, which can also lead to weight loss. Research suggests that people (especially women) with T1D have close to three times the risk for developing an eating disorder than people without diabetes. Insulin restriction has a higher risk of diabetes-related medical complications and tripled risk of death. For these reasons, it is important to learn how to identify signs of eating disorders before they become out of control.
Diabetes healthcare professionals are also frustrated because they don't know what to do to prevent insulin restriction. They don't have enough training in eating disorders and miss some of the signs of an eating disorder when they are working with someone in clinic. For this proposal, we want to create a guide for healthcare professions so they can know the warning signs of an eating disorder, and know how to better communicate with that person to prevent problems. We are going to create this guide in two different ways. First, we are going to have interviews with 30 people who have T1D and a history of insulin restriction to identify the warning signs of a potential eating disorder. We are going to ask questions such as:
• What do you think triggered you to start restricting insulin and how did you “learn” this?
• Was there anyone who “caught onto” your eating disorder?
• Did anyone at your healthcare appointments ask you directly about your eating disorder? Who, and how?
• Did you give any “warning signs,” such as small hints or things you said or did that might have indicated an eating disorder?
• Did you avoid talking about your eating disorder? What are the questions you avoided that the clinician asked?
• Was there anything else you were silent about, that you didn’t want the healthcare professional to know?
• What do you wish they understood about your eating disorder?
Second, we are going to ask healthcare professionals questions that relate to how comfortable they are in identifying someone who might be restricting insulin, and what education they would like to receive that would help them feel more confident. Questions might include:
• What do you think puts people with type 1 diabetes at risk for an eating disorder?
• How much education have you received in the prevention of eating disorders?
• What behaviors might clue you in to the fact that someone with T1D may have an eating disorder?
• What information, specifically, do you lack to help identify and try to prevent eating disorders?
• If a resource were available to help you identify eating disorders (specifically insulin restriction), how would you use it in clinic?
• What specific things would you want it to include?
• How useful would this resource be to you and why/why not?
The interview data will be transcribed and analyzed. The result will be the completion of a resource for diabetes professionals to use in helping to identify an eating disorder and an educational section on questions to ask in the event of a suspected eating disorder.
Anticipated Outcome
Diabetes healthcare professionals report feeling frustrated by their lack of training in eating disorders in T1D. Some screening tools specifically looking at eating disorders in type 1 diabetes do exist, but these remain challenging to incorporate into routine clinical care in busy diabetes consultations, and diabetes clinicians can feel concerned about whether they have the necessary skills to open up this area of conversation. Therefore, the outcome of this proposal is to create a guide of behaviors for healthcare professions who treat people with T1D. Knowledge of diabetes and eating disorders is currently scattered among practitioners of eating disorders, avoided (to a large extent) by healthcare professionals, and not confidently addressed by diabetes care and education specialists. This guide will raise awareness of clues, observations and behaviors, that may signal a potential eating disorder. The guide will also include questions to ask when an eating disorder is suspected, and strategies to overcome the potential reluctance of the person with diabetes to reveal their eating disorder.
Relevance to T1D
People who manipulate their insulin suffer severe consequences to their health. This includes diabetic ketoacidosis (DKA), a potentially fatal and acute complication of diabetes. There are also serious long-term microvascular and macrovascular complications associated with insulin restriction, including retinopathy (diabetes-related eye disease), neuropathy (nerve damage), and nephropathy (kidney damage). Although a common and life-threatening condition, there is a lack of research specifically on how best to prevent, detect and treat the problem of insulin restriction. This proposal is significant and novel because the guidelines that will be established during this project will assist in the identification of insulin omission, and will be created from the perspectives of people with T1D who have the disorder and the healthcare professionals who treat them.
Many people with diabetes who have eating disorders do not know where to turn to seek help. They may not feel safe telling family members or friends because it is “their secret.” They have learned how to control their weight through insulin restriction and manipulation, and they may be reluctant to tell their healthcare provider because they have difficulty conveying their struggle or they may be shamed by telling them. To identify insulin restriction, healthcare professionals require awareness, education and support when caring for people with type 1 diabetes to improve their own competencies. The development of effective screening tools based on lived experience will be key to improving outcomes for people with T1D and insulin restriction. People with diabetes who have restricted their insulin will be addressed and understood, and early detection can allow them to have the chance to live their fullest lives possible.