Nine of the twelve studies utilized unique patient identifiers, which made it possible to view single participants in the studies through the lens of DD. Several individual participants reported experiences matching multiple DDS item criteria across various subscales. While no single participant was reported as experiencing criteria in more than three subscales, it can be inferred that more life experiences meeting DD criteria could have been uncovered if these people had been administered a DDS.

The primary sources reviewed in this study reported the most participant experiences within the Negative Social Experiences subscale, while issues regarding Hypoglycemia Distress received the least attention, far less than any of the others. This could be reflective of patients’ efforts to prioritize outward appearance and weight, and thereby their perceived social status, over their own health and safety. This conclusion appears to be supported by the results of the meta-synthesis by Goddard and Oxlad [13]. Using the DDS, our research was able to elucidate more specific themes within the patients’ experiences. Commonly met DDS item criteria included “Feeling that people treat me differently when they find out I have diabetes” (item 4), “Feeling that my friends or family act like ‘diabetes police’” (item 20), “Feeling that I am not as skilled at managing diabetes as I should be” (item 1), “Feeling that no matter how hard I try with my diabetes, it will never be good enough” (item 25) [13]. These insights begin to build a profile of an archetypal patient whose feelings of low efficacy and perceived inability to live up to the standards of diabetes management cause them to seek validation in other ways, including harmful weight loss methods such as insulin restriction.

This archetypal patient model is echoed by De Paoli and Rogers, who found that the difficulty in T1D management creates frustration among patients, which leads to negative perceptions of themselves that, in turn, can prompt disordered eating behaviors [25]. Goddard and Oxlad view disordered eating behavior as patients’ attempts to regain the control they feel that diabetes has stolen from them [10]. Occasional insulin restriction yields the desired result of weight loss, but positive perceptions of this behavior are replaced with feelings of guilt as it becomes more habitual and self-management is neglected. As insulin restriction escalates, so does the feeling of distress. Patients who go on to experience diabetes-related complications because of their insulin restriction also express guilt over their prior actions [10].

The literature provides a context for this proposed model of DD leading to disordered eating behavior or eating disorders in T1D. The risk of developing an eating disorder or disordered eating behavior continues to rise as children with T1D progress through adolescence and into their twenties [26]. In addition, experiencing symptoms of DD within an hour of eating increases the risk of binge eating behavior [25], which raises the likelihood of DD influencing other eating behaviors. Because of the heightened risk that a person with T1D will develop disordered eating behaviors, such as diabulimia, or eating disorders [9], the distress experienced by these patients must be addressed in their treatment and recovery.

Implications for management and prevention

Non-compliance with treatment in young people with T1D is reason for initiating screening for an eating disorder or disordered eating behavior, especially in the setting of risk factors such as female gender, high body mass index prior to T1D diagnosis, diagnosis of T1D between 7 and 18 years of age, dissatisfaction with bodily appearance, and low self-esteem [9]. Frequently used screening instruments include the modified Eating Disorder Inventory (mEDI), Diabetes Eating Problem Survey (DEPS), or the modified SCOFF (mSCOFF) questionnaire [26]. The letters in mSCOFF are partly derived from an acronym for its criteria, with a score of two or more suggesting an eating disorder:

1.

Do you make yourself Sick because you feel uncomfortably full?

2.

Do you worry you have lost Control over how much you eat?

3.

Have you recently lost > 14 pounds (One stone) in a 3-month period?

4.

Do you believe yourself to be Fat when others say you are too thin?

5.

Do you ever take less Insulin than you should?

In light of the results of this study, the clinicians may consider utilizing the PAID scale or DDS to evaluate for the presence of underlying DD as a driver for disordered eating behaviors [10]. Candler, et al. propose a multidisciplinary approach to diabulimia consisting of a diabetes management team, dietician team, and mental health team [26]. Considerations for the diabetes management team informed by the presence of DD include emphasizing “good enough” glycemic control over “optimal” [3]. Decreasing time spent on diabetes self-management can decrease diabetes distress and thus can play a role in diabulimia recovery [3]. While diabetes care providers may be reluctant to relax their treatment regimens, having patients spend less time on their diabetes management is a part of the recovery process as patients work toward more incremental health goals [3, 9]. It is also important to involve the patient in the decisions made for further diagnosis and treatment [27].

For the dietician team, goals should include re-establishing a regular meal pattern, establishing intuitive approaches to meal planning, and potentially relaxing carbohydrate counting [26]. Providers should avoid giving positive reinforcement for any weight loss that occurs during recovery because of the potential for sabotaging patient recovery, especially in the setting of diabulimia [3]. Online group seminars addressing the facts of diabetes diet and management have been found to be as efficacious in reducing DD and hemoglobin A1C as online group meetings discussing the emotional aspects of diabetes management [28]. However, those with poor emotion regulation or poor cognitive skills benefited the most from the emotion-focused intervention [28], with patients reporting long-term gains in emotional perspective about the realities of managing T1D and decreased self-blame [29]. Dieticians will need to be prepared to address the non-productive emotions of their patients with diabulimia and DD and work closely with the mental health team when treating a patient with poor emotion regulation abilities.

The mental health team should conduct cognitive behavioral therapy and assess and address the impacts of the T1D and eating disorder on daily living [9]. DD-informed talk therapy may touch on themes of attachment theory and relationships. A role for attachment theory has been proposed for patients’ ability to self-manage their T1D, as secure attachments in interpersonal relationships are associated with better glycemic control across multiple studies [30]. Underscoring this idea is that DD criteria encompass diabetes’ effects on interpersonal relationships. DD can directly impact a young patient’s parents as well [30]. A potential consideration for young people with diabulimia and DD may be the integration of family therapy into the recovery plan. Family therapy can be key to recovery, as poor family dynamics can exacerbate the patient’s condition [3]. Other useful therapy modalities for reducing DD include mindful self-compassion interventions and mindfulness-based cognitive therapy [31].

People with T1D are at increased risk of developing eating disorders [25], making it worthwhile to screen every patient with T1D for DD. The greatest potential for enhanced knowledge of DD lies in its ability to prevent disordered eating behaviors in patients with T1D. If feelings of frustration with diabetes management can lead to restriction of food or insulin, then screening for DD could uncover distress before patients begin to act on it.

Limitations and future directions

While the studies surveyed in this review contained valuable insight from patients with diabulimia and eating disorders in the setting of T1D, none of the studies specifically sought to quantify their symptoms using a diabetes distress assessment tool. Although many of the patients reported symptoms associated with DD, it is impossible to know how many of them would have been diagnosed with DD, nor can we ascertain severity, had such an assessment been administered. Thus, while we have estimates of the prevalence of diabulimia and DD within the T1D population, the prevalence and severity of DD within the diabulimia population remain unknown. Future research should continue to investigate the links between DD and diabulimia; a study administering DDS assessments to patients with diabulimia would be especially helpful. While this paper does not demonstrate a causative relationship between DD and diabulimia, it brings sufficient evidence for a likely association between the two. Because of the potentially lethal complications that arise from diabulimia, DD screening in every patient with diabetes could one day be a vital tool for prevention and early intervention.