CSII: psychological aspects
Quality of Life
Quality of life is an important measure of the impact of illness, disease and treatments across healthcare. It recognises that health consists not only of physical functioning but also of mental and social well-being.
It is particularly important when considering the burden of chronic conditions such as Type 1 diabetes which require daily and relentless self-management for the maintenance of well-being and the prevention or delay of long term complications.
A recognised outcome in its own right, there are several definitions of quality of life. Gill and Feinstein (1995) define it as:
“generally individuals define quality of life in terms of fulfilment or purpose, personal control, interpersonal relationships, participation in pleasant activities, personal and intellectual growth and material possessions”.
This is particularly appropriate when thinking about Type 1 diabetes because it covers holistic factors but also discrete and specific factors that are pertinent -perception of control over diabetes, its impact on relationships and an individual’s ability to gain employment or alternatively the negative impact on quality of life of discrimination as a consequence of having diabetes.
Health Related Quality of Life
According to the World Health Organisation , health is not defined by only the absence of disease and infirmity, but also by the presence of physical, mental, social and spiritual well-being.
Illness and its treatment can have a major impact on many aspects of life that are highly relevant to individual quality of life, such as cognitive, emotional and sexual functioning, life satisfaction and the ability to fulfill economic and other social roles.
Why Psychological and Quality of Life is Important in the Management of Type 1 Diabetes
Diabetes is a demanding long-term condition that impacts not only on the life of the individual but also on the lives of other family members. It can interfere with daily functioning and can cause problems with work, social life and family relationships. An individual’s quality of life is affected not only by diabetes but also by the therapy required to manage it.
Frequent self-monitoring of blood glucose levels, insulin administration and carbohydrate counting are required for optimal self-management of Type 1 diabetes; Type 2 diabetes is associated with sustained behavior change in lifestyle and adherence to often multiple oral therapies. Being able to balance the demands of diabetes and its therapy with a fulfilling, active and enjoyable lifestyle is crucial to maintain a good quality of life.
Quality of Life and Insulin Pump Therapy
Alongside biomedical benefits to using insulin pump therapy, for example improved glycaemic control, reduced glycaemic variability, prevention of dawn phenomenon and reduced rates of severe hypoglycaemia, there are some specific quality of life benefits.
These include increased flexibility in meal times and food intake, increased control over blood glucose levels during exercise and increased freedom and independence in the self-management of Type 1 diabetes.
Insulin pump therapy is associated with reduced frequency and severity of hypoglycaemia and tighter glycaemic variability. This improved glycaemic control is associated with improvements in psychosocial outcomes including quality of life and psychosocial functioning .
Children and Adolescents: Quality of Life and CSII
Paediatric access to insulin pumps has increased over recent years. NICE guidance states that insulin pump therapy should be recommended as a therapy option for children:
CSII therapy is recommended as a treatment option for children younger than 12 years with type 1 diabetes mellitus provided that MDI therapy is considered to be impractical or inappropriate
It further states that children on insulin pumps would be expected to undergo a trial of MDI therapy between the ages of 12 and 18 years, however does not dictate what that trial would look like or how long it would last.
Difficulties with managing diabetes at school are frequently reported. Dame Barbara Young from Diabetes UK states that "Children with Type 1 diabetes are facing difficulties getting the support they need to manage their condition in school, to participate in normal school life and progress academically. "These difficulties include children not being allowed access to their insulin, which they need to regulate their blood glucose level, or to eat snacks in class if their blood glucose levels drop, and discrimination around school trips and extracurricular activities.”
Challenges such as these can have a detrimental impact on quality of life for both children with type 1 diabetes and their parents.
The three most frequently reported factors important to quality of life by children are family, friends and school. Despite ‘health’ being reported frequently by parents of children with diabetes as important to their own quality of life, this does not figure as highly for children.
Being able to ‘press a button’ rather than having to do an injection, as well as being able to go to friend’s houses without having to come home for injections are cited as key benefits of insulin pump therapy. Similarly, not having to have injections at school contributes to feelings of independence and minimizes the ‘difference’ children feel because of their diabetes.
In many centres, children newly diagnosed with type 1 diabetes are initiated on insulin pump therapy immediately.
Adults: QoL and CSII
There are some key quality of life benefits associated with insulin pump therapy. These include feeling in control of diabetes, rather than being controlled by it; flexibility; freedom; positive impact on family members’ quality of life; convenience and independence.
Feeling in control of diabetes has a significant impact on quality of life, expressed in comments such as ‘My blood glucose control has improved no end, I’m a completely different person …. I feel freer than I have for years’. This reflect a broad control than simply blood glucose levels, it encapsulates psychosocial function as well.
Flexibility, convenience and independence …
NICE recognize the importance of optimal quality of life and the impact that both diabetes and its treatment can have on this. The guidance for adults and children over the age of 12 years, clearly cites adverse effects on quality of life of anxiety about recurrent and unpredictable hypoglycaemia, stating:
Continuous subcutaneous insulin infusion (CSII or 'insulin pump') therapy is recommended as a treatment option for adults and children 12 years and older with type 1 diabetes mellitus provided that: attempts to achieve target haemoglobin A1c (HbA1c) levels with multiple daily injections (MDIs) result in the person experiencing disabling hypoglycaemia. For the purpose of this guidance, disabling hypoglycaemia is defined as the repeated and unpredictable occurrence of hypoglycaemia that results in persistent anxiety about recurrence and is associated with a significant adverse effect on quality of life
Downsides of insulin pump therapy
There are also some reported disadvantages to insulin pump therapy that affect an individual’s quality of life. These include constant reminder of disease state, constant attachment to the pump, visibility of the device; concerns about breakdown and reliance on the device; and cost compared to multiple daily injection therapy.
Access to insulin pump therapy remains variable across the UK.
CSII represents the most advanced technology current available for the management of Type 1 diabetes in the UK. It enables people to engage in activities that had been restricted by Type 1 diabetes. The biomedical and quality of life benefits seem to outweigh the negatives for most people and redress the balance between controlling Type 1 diabetes and being controlled by it.
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^ Gill TM and Feinstein AR (1995). A critical appraisal of the quality of quality-of-life measurements. Journal of the American Medical Association 272, 619-626
^ World Health Organisation (1999) WHOQOL: Measuring Quality of Life. The World Health Organisation Instruments (The WHOWoL100 and the WHOQoLBref). Retrieved December 6th 2013 from www.who.int/mental_health/media/68.pdf
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^ Barnard KD (2008) Exploration of the quality of life issues/benefits associated with continuous subcutaneous insulin infusion in type 1 diabetes. British Library
^ Rodrigues IAS, Reid HA, Ismail K and Amiel SA (2005). Indications and efficacy of continuous subcutaneous insulin infusion (CSII) therapy in type 1 diabetes mellitus: a clinical audit in a specialist service. Diabetic Medicine 22, 842-849
^ Hoogma RPLM et al. Comparison of the effects of continuous subcutaneous insulin infusion (CSII) and NPH-based multiple daily insulin injections (MDI) on glycaemic control and quality of life: results of the 5-nations trial. Diabetic Medicine 23, 141-147
^ Barnard KD and Skinner TC (2007). Qualitative study into quality of life issues surrounding insulin pump use in type 1 diabetes. Practical Diabetes International v.24 (3)
^ Barnard, K.D. and Skinner, T.C. Cross-sectional Study into QoL Issues Surrounding Insulin Pump Therapy Use in Type 1 Diabetes, Practical Diabetes International, June 2008
^ NICE guidance TA151 Continuous subcutaneous insulin infusion for the treatment of diabetes mellitus, issued July 2008. http://publications.nice.org.uk/continuous-subcutaneous-insulin-infusion-for-the-treatment-of-diabetes-mellitus-ta151
^ Young B statement. Diabetes UK website accessed 6th December 2013 http://www.diabetes.org.uk/About_us/News_Landing_Page/Postcode-lottery-leaves-children-with-diabetes-without-support-in-school/