Improving design and evaluation of behaviour change programs for people with younger-onset type 2 diabetes

Type 2 diabetes has long been considered a condition of the elderly, but worldwide, the number of people diagnosed with younger-onset type 2 diabetes (aged under 45 years) is increasing. People with YOT2D have a wrose clinical and behavioural risk factor profile and higher risk of morbidity and premature mortality compared with their similar-age type 1 diabetes and later-onset type 2 diabetes peers. This may be because people with YOT2D experience unique barriers to optimal diabetes self-management including health comorbidities, over representation among lower socioeconomic and ethnic minority groups, life stage demands (e.g. school, job, and family), and diabetes, racial, and obesity-related stigmas.

Health behaviour change programs are an essential element in diabetes care and are crucial to improve health and reduce the risk of diabetes-related complications in people with YOT2D. To date however, there are few such programs, and assessments of effectiveness has been challenging to complete, due to for example low recruitment and engagement, high drop out of programs and loss to follow-up in data collection.

There was a need to understand how we can design our programs and evaluation designs to overcome these problems. We therefore synthesized knowledge based on a literature review of 11 behaviour change programs and from own experiences from two cases. 

Our review highlighted common design and evaluation problems. For example, that many programs were developed for older people with type 2 diabetes or for youth with type 1 diabetes. Thus, the programs had not been adapted for the unique needs of people with YOT2D like their high rates of comorbid stress or depression, social stigmas, their life demands like work and child care or information preferences. We also found that several program evaluations used data collection methods that could disengage participants, such as taking weight and body measurements instead of outcomes with relevance to participants experienced burden of diabetes in their everyday life.

In the study, we propose solutions and tangible examples of do's (and some don'ts) from existing programs. Design recommendations included appropriate adaptation of existing interventions and involvement of people with YOT2D from the beginning. Evaluation recommendations included plan design and analysis around small sample sizes and offer incentives and good information about the research purpose, and use of sensitive and appropriate collection of assessment data.

We hope the study will provide guidance to behavioural and public health researchers who wish to work with health services for a vulnerable and hard to reach high population as represented by people with YOT2D. It gives recommendations on best-practice development and evaluation of age-appropriate, culturally and contextually sensitive interventions to support optimal self-management for people living with YOT2D.

In a PhD study from 2019, second author and formar DDA funded PhD student Anne Bo used register data, survey data, and qualitative interviews to investigate the clinical risk factor profile, the prevalence of psychosocial problems, the perceived quality of chronic care, and stigma and diabetes disclosure among people aged <45 years with type 2 diabetes in Denmark. In line with international literature, the studies showed that that people with YOT2D in Denmark are a clinical high risk group with special care and support needs due to their life stage and psychosocial profile. Around 16000 of 260000 people with type 2 diabetes in Denmark are under 45 years of age.     

The paper is a good example of international collaboration by Early Career Researchers from Denmark (Anne Bo,  post doc, Aarhus University and Defactum), the United Kingdom (Dr Michelle Hadjiconstantinou, Leicester Diabetes Centre) and Australia (Dr Amelia Lake, ACBRD). The study findings were presented as a symposium at the 2021 International Congress of Behavioural Medicine virtual conference in June 2021.

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Read the article:
Lake AJ, Bo A, Hadjiconstantinou M. Developing and evaluating behaviour change interventions for people with younger-onset type 2 diabetes: lessons and recommendations from existing programmes. Current Diabetes Reports, 2021.