Art & science diabetes
Diabulimia: how eating disorders can affect adolescents with diabetes Davidson J (2014) Diabulimia: how eating disorders can affect adolescents with diabetes. Nursing Standard. 29, 2, 44-49. Date of submission: May 14 2013; date of acceptance: April 22 2014.
Abstract Adherence to self-management and medication regimens is required to achieve optimal blood glucose control in adolescents with type 1 diabetes mellitus. Non-adherence places adolescents at serious risk of short and long-term health complications. Adherence difficulties may be exacerbated by concurrent eating disorders. Diabulimia is a term used to describe the deliberate administration of insufficient insulin to maintain glycaemic control for the purpose of causing weight loss. This article explores the concept of diabulimia and the compounding complications of an eating disorder on maintaining self-management regimens in adolescents with diabetes.
Author Jennifer Davidson Staff nurse, children’s services, Nottingham Children’s Hospital, Queen’s Medical Centre, Nottingham Correspondence to: [email protected]
Keywords Adolescents, blood glucose control, blood glucose monitoring, diabetes, diabulimia, eating disorders, glycaemic control, insulin administration, type 1 diabetes, weight loss
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: rcnpublishing.com/r/author-guidelines
44 september 10 :: vol 29 no 2 :: 2014
DIABETES HAS BECOME one of the greatest health problems in the UK and is currently costing the NHS more than £10 billion annually (Diabetes UK 2012a). Medical advances and diabetic education interventions have been designed to achieve optimal management of type 1 diabetes mellitus and to minimise the risk of health complications and costs to the NHS. However, adherence to self-management and medication regimens remains unsatisfactory, particularly among adolescents (Diabetes UK 2012a). Diabetes UK, a charity supporting diabetes care in the UK, has, therefore, advocated the importance of raising the awareness of risks, preventive measures and improved management strategies in relation to diabetes (Diabetes UK 2012a). Type 1 diabetes affects more than 23,000 young people in the UK and is one of the most common chronic health conditions in individuals under the age of 17 years (Thornton 2009, Diabetes UK 2012a, International Diabetes Federation (IDF) 2013). This increasingly common endocrine disorder is most often diagnosed between the ages of 10 and 14 years (Diabetes UK 2012a). Recent European figures indicate a 22% increase in incidence, with a 3% increase globally, particularly in individuals below five years of age (Diabetes UK 2012a, IDF 2013). Overall incidence is expected to double by 2025 (Diabetes UK 2012a, IDF 2013). The number of UK children and young people diagnosed with diabetes is the highest in Europe (IDF 2013). The UK has the lowest number of children achieving optimal blood glucose control (Department of Health (DH) Diabetes Policy Team 2007, IDF 2011, Diabetes UK 2012a). Diabetes UK (2012a) has reported that more than 140,000 children and young adults display dangerously high blood glucose levels. Less than optimum blood glucose control leads to increasing incidence of long-term complications, including retinopathy and nephropathy, as well as microvascular and macrovascular complications (IDF 2013). Numerous reports suggest more than 80% of children and young people with diabetes
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do not achieve HbA1c (glycated haemoglobin) levels of below 7.5% (DH Diabetes Policy Team 2007, Diabetes UK 2010a). HbA1c level relates to the average plasma concentration of glucose and is used as an indicator of the average blood glucose level and diabetic control in the 8-12 weeks before testing (Diabetes.co.uk 2014). Targets for those who do not have diabetes are 20mmol/mol (4.0-5.9%) and 48mmol/mol (6.5%) for those with diabetes (Diabetes.co.uk 2014). The National Institute for Health and Care Excellence (NICE) (2004) allows an upper limit of 59mmol/mol (7.5%) in adolescents with diabetes to reduce the risk of diabetes-related health implications. Nine per cent of children and young people with diabetes in the UK experience an episode of diabetic ketoacidosis (DKA), a life-threatening emergency, as a result of low blood-insulin levels, high blood glucose levels and high blood levels of counter-regulatory hormones, such as cortisol, glucagon, growth hormones and catecholamines (Wolfsdorf et al 2009, Diabetes UK 2012b). DKA occurs when the body is unable to use glucose as an energy source due to a lack of insulin. The body breaks down fatty acids as an alternative energy source. This form of energy release produces toxic, acidic ketones as by-products, which accumulate in the blood resulting in acidosis (Wolfsdorf et al 2009, Diabetes UK 2012b). DKA is a major cause of hospital admission and the leading cause of morbidity and death in children and adolescents with type 1 diabetes (Curtis et al 2002, Butalia et al 2013). With appropriate outpatient treatment and adherence to self-management regimens, these eventualities could be avoided in more than half the cases (Anderson 2009, Fritsch et al 2011). Where DKA is persistent, it has been suggested that insulin omission is the most likely cause. Persistent DKA is a serious problem for the individuals and their families with the threat of long-term complications (Frank 2005). Although effective self-management of type 1 diabetes is possible, it is demanding. It requires frequent monitoring of blood glucose levels to achieve a delicate balance of dietary carbohydrate intake and daily exercise, coupled with self-administered insulin injections (DH 2007, Guo et al 2011, IDF 2013). A plethora of education and cost-effective management interventions and multidisciplinary support is available to help young people with diabetes (NICE 2004, Viklund and Wikblad 2009). Specialist and school nurses, age-appropriate literature, hospital appointments, availability of inpatient stays for diabetes stabilisation and follow-up clinics are widely available (NICE 2004). However, despite
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all these interventions, an increasing number of young people ignore diabetes advice and education, particularly those aged 14 or 15 years (Hanna et al 2005, Hains et al 2006, Helgeson et al 2009, Pretorius et al 2010). Education alone is not enough to encourage behavioural change. However, it can reduce diabetes management anxiety and promote coping, which can improve clinical outcomes (Diabetes UK 2008, Diabetes UK 2010a, IDF 2011). The most common factors considered to affect adherence to diabetic treatment regimens are listed in Box 1. However, this article focuses primarily on diabulimia, an increasingly recognised eating disorder among adolescents with type 1 diabetes. Diabulimia is a term that is used to describe the deliberate administration of insufficient insulin to maintain glycaemic control for the purpose of causing weight loss. Diabulimia has not been formally recognised in the medical arena, has no formal diagnostic criteria and is often difficult to detect (Hasken et al 2010, Jancin 2011, Shaban 2013). However, its effect on both the short and long-term health of adolescents with diabetes is of great clinical importance. It is, therefore, vital that healthcare professionals are able to detect and support those affected appropriately. This article discusses the evidence regarding factors affecting adolescent adherence to diabetes treatment regimens, with particular emphasis on the mismanagement of insulin administration in adolescents.
Diabulimia among adolescents with type 1 diabetes Eating disorders occur in adolescents and young adults, especially young women in Western countries, as the drive for thinness becomes more prevalent (Smith et al 2008). The risk of
BOX 1 Most common factors affecting adherence to diabetic treatment regimens among adolescents Social relationships. Peer pressure. Increasing independence from the family. Increasing time spent away from the family. Adolescent social, cognitive and physical development. The onset of puberty with associated hormone changes. Psychological effect of the disease. Comorbidity of eating disorders. (Jones et al 2000, Wolfsdorf et al 2006, Wolfsdorf et al 2009, Fritsch et al 2011, Tidy 2014)
september 10 :: vol 29 no 2 :: 2014 45
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Art & science diabetes developing an eating disorder is compounded in adolescents with type 1 diabetes (Jones et al 2000, Smith et al 2008, Colton et al 2009, Diabetics With Eating Disorders (DWED) 2010). The presence of an eating disorder in adolescents with diabetes has a direct effect on glycaemic control (Hasken et al 2010, Shaban 2013) and earlier onset of diabetic complications (Jones et al 2000, Darbar and Mokha 2008, Hasken et al 2010, Takii et al 2011). It has been suggested that rates of eating disorders are as high as 30% in adolescent females with diabetes (Jones et al 2000). Jones et al (2000) undertook a cross-sectional, case-control study of over 2,000 Canadian participants aged between 12 and 19 years, with and without diabetes, using self-administered questionnaires to assess the prevalence of eating disorders in females with diabetes compared to their peers. The study showed that those with diabetes were 2.4 times more likely to have an eating disorder than their peers who did not have diabetes. This finding is supported by Smith et al (2008) and Colton et al (2009) who reported twice the incidence of eating disorders, at both threshold and sub-threshold level, in teenagers with diabetes than their non-diabetic counterparts. A sub-threshold eating disorder exists when a set of symptoms does not meet existing eating disorder criteria (Psych Central News Editor 2011). However, young people aged between 12 and 19 years, as in Jones et al’s (2000) study, display great developmental variance. With such developmental variance in the participants, results could have been affected by cognitive functioning and understanding of the disease and its consequences, differing pyschosocial and environmental pressures and priorities, as well as varying levels of independence, autonomy and engagement in risk-taking behaviour related to age (Smith et al 2008, Court et al 2009). Others have argued that areas of the brain, for example, the frontal and parietal lobes – responsible for planning and self-control – are not developed fully in younger adolescents, further affecting their ability to adhere to treatment (Pickrell 2006) potentially skewing data collected. In addition, Jones et al (2000) focused solely on females, possibly exaggerating the occurrence of eating disorders in the general female population. Although the inclusion of a large number of individuals without diabetes in the study enabled comparisons to be made between the two groups, significantly more female participants without diabetes (n = 1098) than with the condition (n = 356) responded, leading the reader to question how representative the results were. 46 september 10 :: vol 29 no 2 :: 2014
There appears to be limited data available on the prevalence of eating disorders in adolescent boys, suggesting this area requires further research. Colton et al (2009) stated that adolescent boys who have type 1 diabetes, have higher average body mass indices and a stronger drive to be thin compared to their peers without diabetes, but that the incidence of eating disorders appears rare in this group. Some authors have suggested that having type 1 diabetes places the individual at increased risk of developing an eating disorder because of the treatment requirements and fluctuating weight before and after diagnosis (Jones et al 2000, NICE 2004, Smith et al 2008, Hasken et al 2010, Takii et al 2011). A higher body mass index (BMI) due to such weight gain often occurs in individuals with diabetes, heightening body dissatisfaction and increasing the risks of dieting (Colton et al 2009). Takii et al (2011) have further argued that the effect of diabetes on psychological development puts the adolescent at risk of developing an eating disorder. Binge eating and insulin under-dosing have been found to be the most common weight loss methods used by adolescents with type 1 diabetes (Jones et al 2000, Frank 2005, Colton et al 2009). Smith et al (2008) suggested that binge eating and inappropriate compensatory behaviour were common weight-management strategies that meet the criteria for eating disorders. Jones et al (2000) found that insulin omission was the most common weight loss behaviour among their study participants with diabetes, with 11% reporting taking less insulin than prescribed and 42% reporting insulin misuse. The unique weight loss strategy provided by insulin omission as a way of ‘purging’ through induced glycosuria is thought to increase the risk of developing eating disorders in young people with diabetes (Jones et al 2000, Frank 2005, Colton et al 2009, Court et al 2009). Such purging behaviour has been associated with impaired metabolic control over time, poor maintenance of appropriate glycaemic levels and body weight (Helgeson et al 2009) and even death (Jones et al 2000). Insulin under-dosing results in higher mean HbA1c concentrations, increasing the risk of microvascular complications, long-term complications affecting multiple body systems, diabetic retinopathy, increased risk of DKA and hospitalisation (Jones et al 2000, Smith et al 2008, Colton et al 2009, Young-Hyman and Davis 2009). The process of omitting insulin is reported to be most common during late teenage years
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and it is suggested that between 30% and 40% of adolescent and young females omit insulin regularly to lose weight (Darbar and Mokha 2008, Colton et al 2009, DWED 2010, Hasken et al 2010, Shaban 2013). This reinforces the clinical need for a better understanding of the condition. However, it is also recognised these figures might be skewed, as a result of adolescents failing to admit having such issues during study periods (Diabetes UK 2007). Further understanding of motives and effective management strategies to prevent long-term health complications is imperative for nurses encountering adolescents with diabetes. It is important to recognise that not all young people who do not adhere to insulin regimens have diabulimia. Insulin omission may not always be intentional, but might occur when individuals lack the necessary will and ability to manage their diabetes care (Colton et al 2009). It has been identified that children are being diagnosed with type 1 diabetes at an increasingly young age (DH Diabetes Policy Team 2007). By the time they reach mid-adolescence (age 14-15 years) – the peak age of adherence difficulty (Hanna et al 2005) – they may have had the disease for a long time. The chronic nature of the disease has been identified as a trigger factor for difficulties such as depression and anxiety (NICE 2009). Such conditions can have a compounding effect on adherence, directly affecting metabolic control, especially in conjunction with the age-related increased levels of counter-regulatory hormones (Frank 2005, Colton et al 2009). Together with an indirect effect through failure to carry out self-care (Helgeson et al 2009), these factors can increase the risk of hyperglycaemia (Diabetes UK 2008, Anderson 2009, Guo et al 2011). Hyperglycaemic episodes result in weight loss, which can increase the risk of eating disorders (Bryden et al 2001). While assessing psychological difficulties affecting care of children and adolescents with diabetes, Frank (2005) recognised the effect of depression on self-management regimens required for optimal glycaemic control, arguing many patients with diabetes and depression are often unable to undertake tasks required to maintain safe metabolic control. This puts them at risk of developing short and long-term complications. Other psychosocial problems that result in deliberate insulin omission include embarrassment about blood glucose testing or insulin administration with others present, fear of hypoglycaemia and denial of the condition (Colton et al 2009).
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There is increasing recognition of the influence of eating disorders such as diabulimia on poor adherence to treatment regimens among adolescents with type 1 diabetes. Indeed, there has been a concerted effort for diabulimia to be recognised officially in the medical arena (DWED 2010, Jancin 2011). As stated previously, diabulimia has not been classified as a mental health disorder in the UK, which makes it difficult for healthcare professionals to recognise the condition and respond appropriately to it. Some clinicians, particularly in the United States (US), are beginning to adapt the DSM-IV criteria for bulimia nervosa and eating disorders, in particular the ‘inappropriate compensatory purging behaviours’ under ‘misuse of medications for weight loss’ (Darbar and Mokha 2008). However, formal diagnostic criteria are still lacking (Jancin 2011). Regardless of diagnosis, it is important to support the individual in a multidisciplinary context and stress the importance of dietetic involvement alongside the medical care of adolescents with diabetes (DH Diabetes Policy Team 2007). The introduction of campaigns such as ‘Type 1 Diabetes: Make the Grade’ (Diabetes UK 2014), and emphasis, particularly from charities in the US, to introduce psycho-education in schools about diabulimia, alongside the teaching of other eating disorders (Hasken et al 2010), will hopefully increase understanding of diabulimia by young people and healthcare professionals encountering adolescent with diabetes. The campaign ‘Type 1 Diabetes: Make the Grade’ (Diabetes UK 2014) has been developed in accordance with the Children and Families Bill 2013 (Department for Education 2013). It is aimed at supporting nurses working in the educational context and may further shape and support nursing delivery in school settings, although its influence on adolescent adherence is yet to be evaluated. However, it is also important the voices of young people with diabetes are heard. Policies such as a diabetes children’s charter (Diabetes UK 2010b) are being developed and the opinions of children and adolescents are increasingly being considered.
Implications for practice Failure of adolescents with diabetes to adhere to their treatment regimen is a multi-factorial problem. Current interventions to manage such issues are not effective. NICE (2009) has suggested that further research needs to be conducted to investigate the effectiveness of behavioural and social interventions used for september 10 :: vol 29 no 2 :: 2014 47
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Art & science diabetes the management of anxiety and depression, eating disorders, behavioural and conduct disorders and non-adherence to medication regimens. Adolescence has been identified as the period of least adherence. However, there appears to be minimal research on this age group. Further identification of motives for non-adherence would emphasise the issues, allowing for more focused interventions to be developed. This might result in improved adherence, lowering the risk of short and long-term health complications and leading to more cost-effective schemes being implemented throughout the NHS.
In this article many of the cited sources are literature reviews. More empirical studies would be beneficial in identifying the specific needs of adolescents. This could help to ensure contemporaneous research is being used in the development of services to target this age group. The increasing number of people being diagnosed with diabetes and the high morbidity rates associated with the condition – resulting in significant cost to the NHS – should serve as justification for continued research and better understanding of diabulimia and its effect on self-management regimens required to achieve optimal glycaemic control.
References Anderson B (2009) Psychosocial care for young people diabetes. Pediatric Diabetes. 10, Suppl 13, 3-8.
Recent trends in hospitalization in for diabetic ketoacidosis in Ontario children. Diabetes Care. 25, 9, 1591-1596.
Bryden KS, Peveler RC, Stein A, Neil A, Mayou RA, Dunger DB (2001) Clinical and psychological course of diabetes from adolescence to young adulthood: a longitudinal cohort study. Diabetes Care. 24, 9, 1536-1540.
Darbar N, Mokha M (2008) Diabulimia: a body-image disorder in patients with type 1 diabetes mellitus. Athletic Therapy Today. 13, 4, 31-33.
Butalia S, Johnson J, Ghali W, Rabi DM (2013) Clinical and socio-demographic factors associated with diabetic ketoacidosis hospitalization in adults with Type 1 diabetes. Diabetic Medicine. 30, 5, 567-573. Colton P, Rodin G, Bergenstal R, Parkin C (2009) Eating disorders and diabetes: introduction and overview. Diabetes Spectrum. 22, 3, 138-142. Court JM, Cameron FJ, Berg-Kelly K, Swift PG (2009) Diabetes in adolescence. Pediatric Diabetes. 10, Suppl 12, 185-194. Curtis JR, To T, Muirhead S, Cummings E, Daneman D (2002)
Department for Education (2013) Children and Families Bill 2013. Department for Education, London. Department of Health (2007) Clinical Care of Children and Young People with Diabetes. DH, London. Department of Health Diabetes Policy Team (2007) Making Every Young Person With Diabetes Matter. The Stationery Office, London. Diabetes UK (2007) Diabetes UK Responds to ‘Diabulimia’ Story. Diabetes UK, London. Diabetes UK (2008) Minding the Gap: the Provision of Psychological Support and Care for People with Diabetes in the UK: a Report from Diabetes UK. Diabetes UK, London.
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Diabetes UK (2010a) Diabetes in the UK 2010: Key Statistics on Diabetes. Diabetes UK, London.
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Guo J, Whittemore R, He GP (2011) The relationship between diabetes self-management and metabolic control in youth with type 1 diabetes: an integrative review. Journal of Advanced Nursing. 67, 11, 2294-2310. Hains AA, Berlin KS, Davies WH, Parton EA, Almezadeh R (2006) Attributions of adolescents with type 1 diabetes in social situations: relationship with expected adherence, diabetes stress and metabolic control. Diabetes Care. 29, 4, 818-822. Hanna KM, DiMeglio LA, Fortenberry JD (2005) Parent
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Conclusion Despite advances in medical treatment and management for people with diabetes, long-term complications and hospital admissions still occur. No definitive reason exists for nonadherence to diabetes treatment regimens during adolescence. However, it is important to recognise that adolescents with type 1 diabetes may be at particular risk of developing an eating disorder. The comorbidity of an eating disorder has been identified as a major factor influencing adherence to self-management regimens in adolescents with diabetes. Female adolescents and those exhibiting psychosocial pathology and weight gain after the
initiation of treatment are most at risk of nonadherence to self-management regimens. The unique purging method available to adolescents with type 1 diabetes may cause them to ignore medical advice and misuse their insulin to lose weight. Without adequate intervention adherence may decrease further, compounding the health risks and complications. Further understanding of motives and behaviour should be sought in the hope of bridging the gap between current practice and what adolescents with diabetes are facing. Care for adolescents with type 1 diabetes needs to be evaluated to improve health outcomes for these individuals NS
and adolescent versions of the Diabetes-Specific Parental Support for Adolescents’ Autonomy Scale: development and initial testing. Journal of Pediatric Psychology. 30, 3, 257-271.
Jones JM, Lawson ML, Daneman D, Olmsted MP, Rodin G (2000) Eating disorders in adolescent females with and without type 1 diabetes: cross sectional study. British Medical Journal. 320, 7249, 1563-1566.
Hasken J, Kresl L, Nydegger T, Temme M (2010) Diabulimia and the role of the school health personnel. Journal of School Health. 80, 10, 465-469.
National Institute for Health and Care Excellence (2004) Type 1 Diabetes: Diagnosis and Management of Type 1 Diabetes in Children and Young People. Clinical guideline No. 15. NICE, London.
Helgeson VS, Siminerio L, Escobar O, Becker D (2009) Predictors of metabolic control among adolescents with diabetes: a 4-year longitudinal study. Journal of Pediatric Psychology. 34, 3, 254-270.
National Institute for Health and Care Excellence (NICE) (2009) Depression in Adults with a Chronic Physical Health Problem: Treatment and Management. Clinical guideline No. 91. NICE, London.
International Diabetes Federation (2011) Global IDF/ISPAD Guideline for Diabetes in Childhood and Adolescence. IDF, Brussels.
Pickrell J (2006) Introduction: Teenagers. www.newscientist.com/ article/dn9938 (Last accessed: August 12 2014.)
International Diabetes Federation (2013) Diabetes in the Young: A Global Perspective. IDF, Brussels.
Psych Central News Editor (2011) Prevalence of Eating Disorders Among Teens. tinyurl.com/73rwvmc (Last accessed: August 12 2014.)
Jancin B (2011) Type 1 Diabetic Teens: Depression vs. Diabulimia. tinyurl.com/nxyntyt (Last accessed: August 12 2014.)
Pretorius C, Walker SP, Esterhuyse KGF (2010) Coping responses as predictors of satisfaction with
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life amongst a group of patients diagnosed with diabetes mellitus. Journal of Interdisciplinary Health Sciences. 15, 1, 127.
Tidy C (2014) Childhood Ketoacidosis. www.patient.co.uk/ doctor/childhood-ketoacidosis (Last accessed: August 12 2014.)
Shaban C (2013) Diabulimia: mental health condition or media hyperbole? Practical Diabetes. 30, 3, 104-105a.
Viklund G, Wikblad K (2009) Teenagers’ perceptions of factors affecting decision-making competence in the management of type 1 diabetes. Journal of Clinical Nursing. 18, 23, 3262-3270.
Smith FM, Latchford GJ, Hall RM, Dickson RA (2008) Do chronic medical conditions increase the risk of eating disorder? A cross-sectional investigation of eating pathology in adolescent females with scoliosis and diabetes. Journal of Adolescent Health. 42, 1, 58-63. Takii M, Uchigata Y, Kishimoto J et al (2011) The relationship between the age of onset of type 1 diabetes and the subsequent development of a severe eating disorder by female patients. Paediatric Diabetes. 12, 4 Part 2, 396-401. Thornton H (2009) Health promotion in childhood diabetes. In Moyse K (Editor) Promoting Health in Children and Young People: The Role of the Nurse. Wiley-Blackwell, Oxford, 220-227.
Wolfsdorf J, Craig ME, Daneman D et al (2009) Diabetic ketoacidosis in children and adolescents with diabetes. ISPAD Clinical Practice Consensus Guidelines 2009 Compendium. Pediatric Diabetes. 10, Suppl 12, 118-133. Wolfsdorf J, Glaser N, Sperling MA, American Diabetes Association (2006) Diabetic Ketoacidosis in Infants, Children and Adolescents. Diabetes Care. 29, 5, 1150-1159. Young-Hyman DL, Davis CL (2009) Disordered eating behaviour in individuals with diabetes: importance of context, evaluation, and classification. Diabetes Care. 33, 3, 683-689.
september 10 :: vol 29 no 2 :: 2014 49
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Diabulimia: how eating disorders can affect adolescents with diabetes Davidson J (2014) Diabulimia: how eating disorders can affect adolescents with diabetes. Nursing Standard. 29, 2, 44-49. Date of submission: May 14 2013; date of acceptance: April 22 2014.
Abstract Adherence to self-management and medication regimens is required to achieve optimal blood glucose control in adolescents with type 1 diabetes mellitus. Non-adherence places adolescents at serious risk of short and long-term health complications. Adherence difficulties may be exacerbated by concurrent eating disorders. Diabulimia is a term used to describe the deliberate administration of insufficient insulin to maintain glycaemic control for the purpose of causing weight loss. This article explores the concept of diabulimia and the compounding complications of an eating disorder on maintaining self-management regimens in adolescents with diabetes.
Author Jennifer Davidson Staff nurse, children’s services, Nottingham Children’s Hospital, Queen’s Medical Centre, Nottingham Correspondence to: [email protected]
Keywords Adolescents, blood glucose control, blood glucose monitoring, diabetes, diabulimia, eating disorders, glycaemic control, insulin administration, type 1 diabetes, weight loss
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: rcnpublishing.com/r/author-guidelines
44 september 10 :: vol 29 no 2 :: 2014
DIABETES HAS BECOME one of the greatest health problems in the UK and is currently costing the NHS more than £10 billion annually (Diabetes UK 2012a). Medical advances and diabetic education interventions have been designed to achieve optimal management of type 1 diabetes mellitus and to minimise the risk of health complications and costs to the NHS. However, adherence to self-management and medication regimens remains unsatisfactory, particularly among adolescents (Diabetes UK 2012a). Diabetes UK, a charity supporting diabetes care in the UK, has, therefore, advocated the importance of raising the awareness of risks, preventive measures and improved management strategies in relation to diabetes (Diabetes UK 2012a). Type 1 diabetes affects more than 23,000 young people in the UK and is one of the most common chronic health conditions in individuals under the age of 17 years (Thornton 2009, Diabetes UK 2012a, International Diabetes Federation (IDF) 2013). This increasingly common endocrine disorder is most often diagnosed between the ages of 10 and 14 years (Diabetes UK 2012a). Recent European figures indicate a 22% increase in incidence, with a 3% increase globally, particularly in individuals below five years of age (Diabetes UK 2012a, IDF 2013). Overall incidence is expected to double by 2025 (Diabetes UK 2012a, IDF 2013). The number of UK children and young people diagnosed with diabetes is the highest in Europe (IDF 2013). The UK has the lowest number of children achieving optimal blood glucose control (Department of Health (DH) Diabetes Policy Team 2007, IDF 2011, Diabetes UK 2012a). Diabetes UK (2012a) has reported that more than 140,000 children and young adults display dangerously high blood glucose levels. Less than optimum blood glucose control leads to increasing incidence of long-term complications, including retinopathy and nephropathy, as well as microvascular and macrovascular complications (IDF 2013). Numerous reports suggest more than 80% of children and young people with diabetes
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do not achieve HbA1c (glycated haemoglobin) levels of below 7.5% (DH Diabetes Policy Team 2007, Diabetes UK 2010a). HbA1c level relates to the average plasma concentration of glucose and is used as an indicator of the average blood glucose level and diabetic control in the 8-12 weeks before testing (Diabetes.co.uk 2014). Targets for those who do not have diabetes are 20mmol/mol (4.0-5.9%) and 48mmol/mol (6.5%) for those with diabetes (Diabetes.co.uk 2014). The National Institute for Health and Care Excellence (NICE) (2004) allows an upper limit of 59mmol/mol (7.5%) in adolescents with diabetes to reduce the risk of diabetes-related health implications. Nine per cent of children and young people with diabetes in the UK experience an episode of diabetic ketoacidosis (DKA), a life-threatening emergency, as a result of low blood-insulin levels, high blood glucose levels and high blood levels of counter-regulatory hormones, such as cortisol, glucagon, growth hormones and catecholamines (Wolfsdorf et al 2009, Diabetes UK 2012b). DKA occurs when the body is unable to use glucose as an energy source due to a lack of insulin. The body breaks down fatty acids as an alternative energy source. This form of energy release produces toxic, acidic ketones as by-products, which accumulate in the blood resulting in acidosis (Wolfsdorf et al 2009, Diabetes UK 2012b). DKA is a major cause of hospital admission and the leading cause of morbidity and death in children and adolescents with type 1 diabetes (Curtis et al 2002, Butalia et al 2013). With appropriate outpatient treatment and adherence to self-management regimens, these eventualities could be avoided in more than half the cases (Anderson 2009, Fritsch et al 2011). Where DKA is persistent, it has been suggested that insulin omission is the most likely cause. Persistent DKA is a serious problem for the individuals and their families with the threat of long-term complications (Frank 2005). Although effective self-management of type 1 diabetes is possible, it is demanding. It requires frequent monitoring of blood glucose levels to achieve a delicate balance of dietary carbohydrate intake and daily exercise, coupled with self-administered insulin injections (DH 2007, Guo et al 2011, IDF 2013). A plethora of education and cost-effective management interventions and multidisciplinary support is available to help young people with diabetes (NICE 2004, Viklund and Wikblad 2009). Specialist and school nurses, age-appropriate literature, hospital appointments, availability of inpatient stays for diabetes stabilisation and follow-up clinics are widely available (NICE 2004). However, despite
© NURSING STANDARD / RCN PUBLISHING
all these interventions, an increasing number of young people ignore diabetes advice and education, particularly those aged 14 or 15 years (Hanna et al 2005, Hains et al 2006, Helgeson et al 2009, Pretorius et al 2010). Education alone is not enough to encourage behavioural change. However, it can reduce diabetes management anxiety and promote coping, which can improve clinical outcomes (Diabetes UK 2008, Diabetes UK 2010a, IDF 2011). The most common factors considered to affect adherence to diabetic treatment regimens are listed in Box 1. However, this article focuses primarily on diabulimia, an increasingly recognised eating disorder among adolescents with type 1 diabetes. Diabulimia is a term that is used to describe the deliberate administration of insufficient insulin to maintain glycaemic control for the purpose of causing weight loss. Diabulimia has not been formally recognised in the medical arena, has no formal diagnostic criteria and is often difficult to detect (Hasken et al 2010, Jancin 2011, Shaban 2013). However, its effect on both the short and long-term health of adolescents with diabetes is of great clinical importance. It is, therefore, vital that healthcare professionals are able to detect and support those affected appropriately. This article discusses the evidence regarding factors affecting adolescent adherence to diabetes treatment regimens, with particular emphasis on the mismanagement of insulin administration in adolescents.
Diabulimia among adolescents with type 1 diabetes Eating disorders occur in adolescents and young adults, especially young women in Western countries, as the drive for thinness becomes more prevalent (Smith et al 2008). The risk of
BOX 1 Most common factors affecting adherence to diabetic treatment regimens among adolescents Social relationships. Peer pressure. Increasing independence from the family. Increasing time spent away from the family. Adolescent social, cognitive and physical development. The onset of puberty with associated hormone changes. Psychological effect of the disease. Comorbidity of eating disorders. (Jones et al 2000, Wolfsdorf et al 2006, Wolfsdorf et al 2009, Fritsch et al 2011, Tidy 2014)
september 10 :: vol 29 no 2 :: 2014 45
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Art & science diabetes developing an eating disorder is compounded in adolescents with type 1 diabetes (Jones et al 2000, Smith et al 2008, Colton et al 2009, Diabetics With Eating Disorders (DWED) 2010). The presence of an eating disorder in adolescents with diabetes has a direct effect on glycaemic control (Hasken et al 2010, Shaban 2013) and earlier onset of diabetic complications (Jones et al 2000, Darbar and Mokha 2008, Hasken et al 2010, Takii et al 2011). It has been suggested that rates of eating disorders are as high as 30% in adolescent females with diabetes (Jones et al 2000). Jones et al (2000) undertook a cross-sectional, case-control study of over 2,000 Canadian participants aged between 12 and 19 years, with and without diabetes, using self-administered questionnaires to assess the prevalence of eating disorders in females with diabetes compared to their peers. The study showed that those with diabetes were 2.4 times more likely to have an eating disorder than their peers who did not have diabetes. This finding is supported by Smith et al (2008) and Colton et al (2009) who reported twice the incidence of eating disorders, at both threshold and sub-threshold level, in teenagers with diabetes than their non-diabetic counterparts. A sub-threshold eating disorder exists when a set of symptoms does not meet existing eating disorder criteria (Psych Central News Editor 2011). However, young people aged between 12 and 19 years, as in Jones et al’s (2000) study, display great developmental variance. With such developmental variance in the participants, results could have been affected by cognitive functioning and understanding of the disease and its consequences, differing pyschosocial and environmental pressures and priorities, as well as varying levels of independence, autonomy and engagement in risk-taking behaviour related to age (Smith et al 2008, Court et al 2009). Others have argued that areas of the brain, for example, the frontal and parietal lobes – responsible for planning and self-control – are not developed fully in younger adolescents, further affecting their ability to adhere to treatment (Pickrell 2006) potentially skewing data collected. In addition, Jones et al (2000) focused solely on females, possibly exaggerating the occurrence of eating disorders in the general female population. Although the inclusion of a large number of individuals without diabetes in the study enabled comparisons to be made between the two groups, significantly more female participants without diabetes (n = 1098) than with the condition (n = 356) responded, leading the reader to question how representative the results were. 46 september 10 :: vol 29 no 2 :: 2014
There appears to be limited data available on the prevalence of eating disorders in adolescent boys, suggesting this area requires further research. Colton et al (2009) stated that adolescent boys who have type 1 diabetes, have higher average body mass indices and a stronger drive to be thin compared to their peers without diabetes, but that the incidence of eating disorders appears rare in this group. Some authors have suggested that having type 1 diabetes places the individual at increased risk of developing an eating disorder because of the treatment requirements and fluctuating weight before and after diagnosis (Jones et al 2000, NICE 2004, Smith et al 2008, Hasken et al 2010, Takii et al 2011). A higher body mass index (BMI) due to such weight gain often occurs in individuals with diabetes, heightening body dissatisfaction and increasing the risks of dieting (Colton et al 2009). Takii et al (2011) have further argued that the effect of diabetes on psychological development puts the adolescent at risk of developing an eating disorder. Binge eating and insulin under-dosing have been found to be the most common weight loss methods used by adolescents with type 1 diabetes (Jones et al 2000, Frank 2005, Colton et al 2009). Smith et al (2008) suggested that binge eating and inappropriate compensatory behaviour were common weight-management strategies that meet the criteria for eating disorders. Jones et al (2000) found that insulin omission was the most common weight loss behaviour among their study participants with diabetes, with 11% reporting taking less insulin than prescribed and 42% reporting insulin misuse. The unique weight loss strategy provided by insulin omission as a way of ‘purging’ through induced glycosuria is thought to increase the risk of developing eating disorders in young people with diabetes (Jones et al 2000, Frank 2005, Colton et al 2009, Court et al 2009). Such purging behaviour has been associated with impaired metabolic control over time, poor maintenance of appropriate glycaemic levels and body weight (Helgeson et al 2009) and even death (Jones et al 2000). Insulin under-dosing results in higher mean HbA1c concentrations, increasing the risk of microvascular complications, long-term complications affecting multiple body systems, diabetic retinopathy, increased risk of DKA and hospitalisation (Jones et al 2000, Smith et al 2008, Colton et al 2009, Young-Hyman and Davis 2009). The process of omitting insulin is reported to be most common during late teenage years
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and it is suggested that between 30% and 40% of adolescent and young females omit insulin regularly to lose weight (Darbar and Mokha 2008, Colton et al 2009, DWED 2010, Hasken et al 2010, Shaban 2013). This reinforces the clinical need for a better understanding of the condition. However, it is also recognised these figures might be skewed, as a result of adolescents failing to admit having such issues during study periods (Diabetes UK 2007). Further understanding of motives and effective management strategies to prevent long-term health complications is imperative for nurses encountering adolescents with diabetes. It is important to recognise that not all young people who do not adhere to insulin regimens have diabulimia. Insulin omission may not always be intentional, but might occur when individuals lack the necessary will and ability to manage their diabetes care (Colton et al 2009). It has been identified that children are being diagnosed with type 1 diabetes at an increasingly young age (DH Diabetes Policy Team 2007). By the time they reach mid-adolescence (age 14-15 years) – the peak age of adherence difficulty (Hanna et al 2005) – they may have had the disease for a long time. The chronic nature of the disease has been identified as a trigger factor for difficulties such as depression and anxiety (NICE 2009). Such conditions can have a compounding effect on adherence, directly affecting metabolic control, especially in conjunction with the age-related increased levels of counter-regulatory hormones (Frank 2005, Colton et al 2009). Together with an indirect effect through failure to carry out self-care (Helgeson et al 2009), these factors can increase the risk of hyperglycaemia (Diabetes UK 2008, Anderson 2009, Guo et al 2011). Hyperglycaemic episodes result in weight loss, which can increase the risk of eating disorders (Bryden et al 2001). While assessing psychological difficulties affecting care of children and adolescents with diabetes, Frank (2005) recognised the effect of depression on self-management regimens required for optimal glycaemic control, arguing many patients with diabetes and depression are often unable to undertake tasks required to maintain safe metabolic control. This puts them at risk of developing short and long-term complications. Other psychosocial problems that result in deliberate insulin omission include embarrassment about blood glucose testing or insulin administration with others present, fear of hypoglycaemia and denial of the condition (Colton et al 2009).
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There is increasing recognition of the influence of eating disorders such as diabulimia on poor adherence to treatment regimens among adolescents with type 1 diabetes. Indeed, there has been a concerted effort for diabulimia to be recognised officially in the medical arena (DWED 2010, Jancin 2011). As stated previously, diabulimia has not been classified as a mental health disorder in the UK, which makes it difficult for healthcare professionals to recognise the condition and respond appropriately to it. Some clinicians, particularly in the United States (US), are beginning to adapt the DSM-IV criteria for bulimia nervosa and eating disorders, in particular the ‘inappropriate compensatory purging behaviours’ under ‘misuse of medications for weight loss’ (Darbar and Mokha 2008). However, formal diagnostic criteria are still lacking (Jancin 2011). Regardless of diagnosis, it is important to support the individual in a multidisciplinary context and stress the importance of dietetic involvement alongside the medical care of adolescents with diabetes (DH Diabetes Policy Team 2007). The introduction of campaigns such as ‘Type 1 Diabetes: Make the Grade’ (Diabetes UK 2014), and emphasis, particularly from charities in the US, to introduce psycho-education in schools about diabulimia, alongside the teaching of other eating disorders (Hasken et al 2010), will hopefully increase understanding of diabulimia by young people and healthcare professionals encountering adolescent with diabetes. The campaign ‘Type 1 Diabetes: Make the Grade’ (Diabetes UK 2014) has been developed in accordance with the Children and Families Bill 2013 (Department for Education 2013). It is aimed at supporting nurses working in the educational context and may further shape and support nursing delivery in school settings, although its influence on adolescent adherence is yet to be evaluated. However, it is also important the voices of young people with diabetes are heard. Policies such as a diabetes children’s charter (Diabetes UK 2010b) are being developed and the opinions of children and adolescents are increasingly being considered.
Implications for practice Failure of adolescents with diabetes to adhere to their treatment regimen is a multi-factorial problem. Current interventions to manage such issues are not effective. NICE (2009) has suggested that further research needs to be conducted to investigate the effectiveness of behavioural and social interventions used for september 10 :: vol 29 no 2 :: 2014 47
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Art & science diabetes the management of anxiety and depression, eating disorders, behavioural and conduct disorders and non-adherence to medication regimens. Adolescence has been identified as the period of least adherence. However, there appears to be minimal research on this age group. Further identification of motives for non-adherence would emphasise the issues, allowing for more focused interventions to be developed. This might result in improved adherence, lowering the risk of short and long-term health complications and leading to more cost-effective schemes being implemented throughout the NHS.
In this article many of the cited sources are literature reviews. More empirical studies would be beneficial in identifying the specific needs of adolescents. This could help to ensure contemporaneous research is being used in the development of services to target this age group. The increasing number of people being diagnosed with diabetes and the high morbidity rates associated with the condition – resulting in significant cost to the NHS – should serve as justification for continued research and better understanding of diabulimia and its effect on self-management regimens required to achieve optimal glycaemic control.
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Conclusion Despite advances in medical treatment and management for people with diabetes, long-term complications and hospital admissions still occur. No definitive reason exists for nonadherence to diabetes treatment regimens during adolescence. However, it is important to recognise that adolescents with type 1 diabetes may be at particular risk of developing an eating disorder. The comorbidity of an eating disorder has been identified as a major factor influencing adherence to self-management regimens in adolescents with diabetes. Female adolescents and those exhibiting psychosocial pathology and weight gain after the
initiation of treatment are most at risk of nonadherence to self-management regimens. The unique purging method available to adolescents with type 1 diabetes may cause them to ignore medical advice and misuse their insulin to lose weight. Without adequate intervention adherence may decrease further, compounding the health risks and complications. Further understanding of motives and behaviour should be sought in the hope of bridging the gap between current practice and what adolescents with diabetes are facing. Care for adolescents with type 1 diabetes needs to be evaluated to improve health outcomes for these individuals NS
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