Health professionals managing ‘diabulimia’ patients who restrict insulin for weight loss should ideally assess patterns of insulin use and create individual care plans within a multidisciplinary team setting, according to new Australian guidelines.

New evidence-guided consensus recommendations for managing the condition have been released by Adelaide University-based researchers, highlighting the prevalence and impact of the “understudied problem” of disordered eating from people with type 1 diabetes.

“Health professionals have reported difficulties managing the care of individuals with comorbid eating disorders and Type 1 Diabetes Mellitus, finding it a daunting task and have expressed often feeling unequipped to do so,” said the guideline authors, led by Georgia Goddard, a PhD candidate and psychologist working at the SA Statewide Eating Disorder Service.

“Individuals with Type 1 Diabetes Mellitus and comorbid eating disorders have similarly expressed the need for health professionals to have increased knowledge and understanding of comorbid illnesses,” they noted.

The paper suggested the proportion of people with Type 1 diabetes who deliberately restrict or reduce their insulin use to purge calories was alarmingly high, ranging from 2% to up to 40%.

It is a potentially life-limiting condition said to increase the risk of mortality more than three-fold and with risks including diabetic ketoacidosis.

The guidelines advised health professionals to explore patterns of insulin use without explicitly asking about insulin misuse. “Health professionals should use sensitive, open-ended questions to gather information about insulin use and weight and shape concerns,” they suggest.

Recommendations include being ‘highly alert’ to the disordered behaviour, especially among people whose diabetes onset was between seven and 18 years, and ‘highly suspicious’ of acute and chronic symptoms of hyperglycaemia.

They also advise addressing body dissatisfaction, weight and shape concerns early, and being proactive in managing poor psychological functioning and distress.

“Our research findings indicate Type 1 Diabetes Mellitus may lead to a multifaceted relationship with insulin, whereby weight is prioritised over health, and occasional restriction or omission may escalate to chronic behaviour,” the guidelines authors said.

“Our results also suggest that initial feelings of mastery may lead to an eventual loss of control, and an alien way of thinking, whereby individuals become increasingly distressed, experience widespread acute and chronic complications and are subject to intense feelings of regret, guilt and shame from deliberately inducing hyperglycaemia.”

Engaging with muti-disciplinary teams including an endocrinologist, nurse educator, dietician with eating disorder and diabetes training, and a psychologist or social worker was important, they concluded.

Gaps in implementation

Speaking to the limbic, Dr Emanuala Araia of the Australian Centre for Behavioural Research in Diabetes, Melbourne, said insulin restriction for weight control was a “very significant issue” that was not adequately addressed or identified in clinical practice.

“[It is] often is the primary reason for insulin restriction,” she said.

Dr Araia said while the guidelines were helpful to inform and raise awareness among health practitioners, there remained gaps regarding implementation. Likewise,  some of the language used in the guidelines was not in line with current best practice from Diabetes Australia.

She said the best approach management for diabulimia included a multifaceted approach including frequent collaboration between diabetes and mental health teams, ongoing monitoring, reducing and addressing diabetes distress, and mental health support. This included people who are using insulin pumps.

“Given the need for active self-management within diabetes care, individuals on pump therapy would also benefit in a similar way from the current guidelines and above recommendations for diabulimia management,” she said.

The guidelines were determined using a meta-synthesis of 12 existing qualitative research papers into people’s lived experience of the condition.

They are published in Diabetes Research and Clinical Practice.