Assessing the Psychological and Behavioural Impact of Living with Diabetes – The Diabetes Health Profile (DHP)


Diabetes mellitus is a chronic disorder of the endocrine system in the regulation of blood glucose. The two main types of diabetes are Type 1 and   Type 2. With Type 1 diabetes, the beta cells of the pancreas no longer make insulin because the body’s immune system has attacked and destroyed them.

Treatment for Type 1 diabetes is by regular insulin injections combined with food choices and regular exercise. Type 2 diabetes usually begins with insulin resistance, a condition in which fat, muscle, and liver cells do not use insulin effectively. This results in the pancreas to lose the ability to secrete enough insulin in response to meals. Treatment of Type 2 diabetes includes insulin injections, oral medication and diet.

Associated with long-term complications including blindness, heart and blood vessel disease, stroke, kidney failure, amputations, and nerve damage, diabetes is widely recognized as one of the leading causes of death and disability and in 2006 was the seventh leading cause of death in the USA.

In addition to the physical limitations and complications, diabetes can have a significant impact on the psychological and behavioural functioning including emotional well-being, family and social  functioning and psychological distress. Click the image to increase size.


The impact on the patient’s quality of life resulting from having diabetes is significant, first, because patients tell us that the way they feel is important to them and secondly, from research we know that better emotional and psychological health leads to better self-care and health outcomes.

Blood glucose and HbA1 levels can inform us about how good or bad the patient’s glycaemic control is, what they cannot tell us is how the patient is feeling and the impact this might be having on adherence to treatment and living a normal life. Click image to increase size.


The requirement to assess the impact of living with diabetes has resulted in the development of a variety of instrument to measure the patient’s psychological and behavioural functioning, quality of life and satisfaction with treatment  based on patient self-report. These are as part of a larger group of measures,  referred to as patient reported outcomes (PROs), which the Diabetes Health Profile (DHP), first published in 1996, was one of the first to be developed to assess the psychological and behavioural outcomes as a result of living with diabetes.

The Diabetes Health Profile (DHP) is a diabetes-specific instrument developed to capture prospectively the impact of living with diabetes has on the patient’s psychological and behavioural functioning.

Sanctioned by the UK Department of Health the DHP for their Long Term Conditions Patient reported outcome measures (PROMS) Programme in Primary Care has been extensively administered across a range of settings including clinical trials, academic research and population and community surveys to more than 10.000 people with either Type 1 or Type 2 diabetes, where it has demonstrated sound psychometric properties and operational performance as well as being highly acceptable to patients.

Available in nearly 30 languages, use of the DHP is supported by a comprehensive user manual. Click here  to view sample pages from the manual.


The DHP is typically used in one of two formats. The DHP-1 which was developed for use with Type 1 and Type 2 (insulin requiring patients)  comprises 32 items which are summed to provide three domain scores and the DHP-18 comprising 18 items for use with Type 1 and Type 2 (insulin, oral and diet). Both the DHP-1 and DHP-18 measure the same three domains which are:
  • Psychological distress –  (dysphoric mood, feelings of hopelessness, irritability, self-harm, feeling of external hostility);
  • Barriers to activity – (perceived limitation to activity, operant anxiety)
  • Disinhibited eating –  (lack of eating control, response to food cues and emotional arousal).
Both the DHP-1 and DHP-18 has been shown to have face
and content validity via patient focus groups and feedback.The construct and discriminant validity as well as reliability has been demonstrated in a number of different studies. The DHP has also demonstrated high levels of convergent validity based on patterns of correlations with other instruments purporting to measure the same constructs.
Both the DHP-1 and DHP-18 have been used in a range of different studies including clinical trials such as a 16-week, randomized, open-label, parallel-group trial conducted in Russia to compare biphasic insulin as given three times daily or twice daily in combination with metformin versus oral antidiabetic drugs alone in patients with poorly controlled Type 2 diabetes. UK Department of Health  PROMs Pilot for Long Term Conditions in Primary Care


Other applications include:

  • a population-based studies including  a  cluster randomized, non-inferiority trial, by self-administered questionnaires in 55 Dutch primary care practices,
  • the Entred study investigating the  demographic and clinical factors associated with psychological and behavioural functioning in people with Type 2 diabetes living in across France
  •  a community based survey of changes in health status of patients with diabetes in Bridgend, South Wales
  • a national survey in the Netherlands to  assess the preferences of patients with Type 2 diabetes regarding self-care activities and diabetes education
  • a study of sex inequalities in access to care for patients with diabetes in primary care.

Academic studies include:

  • the TELFIT Study assessing the reinforcement of the Impact of a Functional Insulin Therapy Training Course by Telemonotoring; The Whole Systems Demonstrator Trial which is comprehensive evaluation of the impact of telemonitoring in patients with long-term conditions and social care needs.

The DHP has also been employed across a number of secondary care settings including:

  • the BITES study which was a randomized trial in secondary care to assess an intensive 5-day educational interventions for people with Type 1; a survey to investigate the prevalence of psychological morbidity in the local secondary care population of people with Type 1 or Type 2 diabetes in order to determine appropriate treatment provision.


The DHP was originally developed and validated for use with English-speaking people in the UK. It has since been translated into nearly 30 different languages. This has included English- speaking in the USA and Canada, Spanish people-speaking in the USA and a range of northern and east –European languages. Table 1 presents a listing of available languages for both the DHP-1 and DHP-18.

Translations of the DHP have been undertaken in accordance with recommended procedures, including forward and backward translations, cognitive debriefing and harmonisation.


  • Mulhern B, Meadows K. (2012). Estimating the minimally important difference of the Diabetes Health Profile-18 (DHP-18) for Type 1 and  Type 2 diabetes mellitis. Quality of Life Research 20:66-67.
  • Meadows K, Mulhern B, Rowen D, Brazier J. (2011). Mapping the diabetes Health profile (DHP-18) onto the EQ-5D and SF-6D generic preference based measures of health. Value in Health 14:A242.
  • Mulhern B, Meadows K. (2012). The validation of the diabetes Health Profile (DHP-18) and the development of a brief measure of health-related quality of life (DHP-12) Value in Health 15: A184.

DHP-18 Score dashboard Click here and enter the following login and  password to view  and use the DHP dashboard. Login: KeithMeadows Password: dhp

This post is an introduction to the forthcoming launch of the new Diabetes Health Profile website at the end of November

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Categories: Patient reported outcomes

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