The psychological and behavioural impact of living with diabetes

Diabetes 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.

Since 1996 the number of people diagnosed with diabetes in the UK has increased from 1.4 million to 2.6 million. By 2025 it is estimated that over four million people will have diabetes of which the majority will be Type 2 diabetes, because of the aging population and rapidly rising numbers of overweight and obese people. Worldwide, diabetes is expected to affect 438 million people by 2030.

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

The impact on 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. Whereas  HbA1 levels can inform us about how good or bad the patient’s glycaemic control is, what it cannot tell us is how the patient is feeling and the impact this might be having on adherence to treatment.

The emotional well-being of the patient is often sub-clinical in the sense that for example expressed anxiety or depression are not clinically defined as a major depressive disorder  but, are directly related to the patient’s response to the diabetes. These might include for example feelings of anxiety or distress due to a fear of hypoglycemia and other complications, restriction in carrying out normal daily activities, or feelings of  being down all of which can impact on the patient’s level of treatment adherence. Evidence of the impact of severe co-morbid depression in people with diabetes are well documented and that diabetes-related distress accounts for much of the variance in depressive symptoms which in turn can be associated with HbA1 levels.(See Stone et al).

As pointed out by a recent guest blog by Professor Jane Speight, when it comes to managing diabetes and preventing complications, what makes the difference is a focus on improving self-management skills, reducing diabetes-related distress and improving clinician–patient communication.

Because the management of diabetes requires the active participation of the patient, the importance of evaluating the impact of diabetes on the psychological and behavioral functioning has resulted in approaches to quantify the patient’s psychological and behavioral functioning based on patient self-report, which as part of a larger group of measures, are referred to as patient reported outcomes (PROs).

How we can we best use a PRO to improve patients lives?

There are a number of ways in which PROs can be used in the management of diabetes and help improve the emotional and social well-being of the patient.

  • Doctor/patient communication – effective communication between the health care professional (HCP) and patient is obviously  essential, but, often the more emotional issues are not  raised during the consultation and or go undetected. Getting a patient to complete a PRO prior to seeing the HCP can be a useful means of spotting potential problems. For example, noting that the patient was reporting that they were feeling more anxious than during their last visit. During my own research when interviewing a woman with Type 1 diabetes, she expressed fear of going out before lunch and as a result would stay at home, planning her days around the afternoon. Clearly here was a breakdown in communication and identification of the problem coupled with some simple advice on insulin adjustment would have prevented this unnecessary stress.
  • Establishing treatment benefits – This is  one of the commonest means of using a PRO, normally done as part of a formal clinical trial when treatment A is compared with treatment B in terms of improving the emotional and behavioural functioning of the patient. However, with the growing emphasis on real world data PROs will play an increasing role in collecting patient self-report in an every day setting unconstrained by the requirements of a clinical trial.
  • Identifying need – PROs can provide valuable information on specific patient groups For example Measuring psychological morbidity for diabetes commissioning was a study to investigate the prevalence of psychological morbidity in the local secondary care population of people with Type 1 diabetes or type 2 diabetes  in order to determine appropriate treatment provision.

These are just some example of how PROs can be used to improve the patient’s emotional well-being, reduce stress and enhance management. However, there are some very real challenges we need to face. For example:

  • How can we best embed PROs into the decision making process?
  • What are the practical issues to overcome?
  • How can we combine PRO data with other clinical data?
  • Do PROs tell us everything we need to know?
  • Do clinicians ‘want’ or ‘believe’ in PROs?

The last point is particularly relevant – Do clinicians want or believe in PROs?  Only in a culture where clinical practice values equally the  psychological and biomedical processes and outcomes will PROs play a significant  part in diabetes care.

Reference: Ali S, Stone MA, Peters JL, et al. The prevalence of co-morbid depression in adults with Type 2 diabetes: a systematic review and meta-analysis. Diabet Med 2006; 23: 1165-1173.

The Diabetes Health Profile is one such instrument developed to evaluate the impact of living with diabetes on the psychological and behavioural functioning. CLICK ON THE IMAGE BELOW


Categories: Diabetes Health Profile, Patient reported outcomes

Tags: , , , , ,

5 replies

  1. Hi Keith. Your article is very interesting, but it sort of stereotypes diabetics to a certain degree. I don’t think having diabetes is as black and white as you make it to be. Diabetes affects everyone differently, both emotionally and physically. My anxiety, for example, was created by doctors who have given me the wrong advice for years, insurance companies who’ve refused me benefits “because I was diabetic,” and people stereotyping me based on what they’ve heard in the media. I’ve been depressed because I had to endure a kidney transplant, I had a ruptured appendix, and because I wasn’t getting the support I needed to help me get through all of these situations. It was not because I fear going into a hypoglycemic episode, which happens more than you know with type 1’s. It was because MY LIFE was at risk.

    There were a couple things I didn’t understand in your article. You talk about “morbid depression” and measuring physical morbidity for diabetes commissioning, but I don’t really understand what you are talking about. Could you please elaborate on those issues?


    • Thanks Janice for your real life examples of the problems experienced by people with diabetes. My example of hypoglycemia was just that. In my research I’ve come across a range of causes of anxiety including poor advice and how people with diabetes are often viewed. It is just these things that impact on the emotional well-being as you pointed out and it’s not just hypo’s.

      Regarding the couple of things you did not understand when we talk about co morbid depression it’s the depression along side the diabetes due to the issues resulting from diabetes as in your case with transplant. However, there needs to be a distinction when discussing depression and how it’s measured. Depression can be clinically defined based on the type and severity of the symptoms. Depression can also be due to organic reasons or reactive in response to a situation in life. So one must always be aware of the significance of talking about depression with diabetes because when assessing whether someone is depressed based on their symptoms, many of the symptoms resulting from diabetes – the biomedical symptoms e.g. fatigue, lack of concentration etc. are also symptoms experienced in serious depression. This why it’s so important that when assessing the level of distress and the emotions of people with diabetes that when ever possible diabetes-specific measures should be used.

      Finally,when commissioning services we need to know what the level of the need is. Undertaking surveys such as the example in my blog provides us with that information around which care of patients can be planned.

      I hope I’ve answered your point and again thanks for your input.

  2. Reblogged this on Letter To A Diabetic and commented:
    Diabetes has a very real impact on all parts of our lives and we can learn to be our own advocates as Diabetics. Our thoughts and knowledge do matter in our treatment of OUR diabetes.


  1. ePROs in Diabetes Studies | DHP Research thepatientoutcomesblog

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