Educational and psychosocial programmes for adolescents with diabetes: approaches, outcomes and cost-effectiveness

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Abstract

Diabetes incurs heavy personal and health system costs. Self-management is required if complications are to be avoided. Adolescents face particular challenges as they learn to take responsibility for their diabetes. A systematic review of educational and psychosocial programmes for adolescents with diabetes was undertaken. This aimed to: identify and categorise the types of programmes that have been evaluated; assess the cost-effectiveness of interventions; identify areas where further research is required. Sixty-two papers were identified and subjected to a narrative review. Generic programmes focus on knowledge/skills, psychosocial issues, and behaviour/self-management. They result in modest improvements across a range of outcomes but improvements are often not sustained, suggesting a need for continuous support, possibly integrated into normal care. In-hospital education at diagnosis confers few advantages over home treatment. The greatest returns may be obtained by targeting poorly controlled individuals. Few studies addressed resourcing issues and robust cost-effectiveness appraisals are required to identify interventions that generate the greatest returns on expenditure.

Introduction

Diabetes mellitus is a relatively common chronic disease for which there is, as yet, no known cure. Type 1 diabetes, or insulin-dependent diabetes mellitus (IDDM), usually develops in childhood and adolescence, whereas type 2 (non-insulin-dependent) diabetes is not usually diagnosed before the age of 40 years. Type 1 diabetes is the third most common chronic condition in young people after asthma and cerebral palsy [1], and there is evidence that the incidence is rising [2], [3].

There are two acute complications of diabetes. In hypoglycaemia, which is relatively common but treatable, blood glucose levels drop to dangerously low levels resulting in confusion, lack of co-ordination and cognitive dysfunction. Hyperglycaemia, which leads to ketoacidosis, is the single most common cause of death for those under 40 with type 1 diabetes. It is a particular problem for adolescents and is treated by hospital admission to prevent complications. People with diabetes have elevated risks for retinopathy, renal failure, neuropathy, atherosclerosis, peripheral artery disease, coronary heart disease and cerebrovascular disease. It is likely that better diabetes control from an early age will postpone or even prevent some of these complications [4].

Attempts to estimate the economic burden of diabetes for affected individuals or society are beset with data-related problems [5], [6], but it is well established that people with diabetes consume disproportionate amounts of health care resources [7], [8], [9], and that much of this excess expenditure is associated with vascular complications [5]. Productivity losses associated with type 1 diabetes were found to be at least equal to the direct treatment costs [9]. The potential for cost savings have been demonstrated by modelling studies that project the impact of interventions that improved metabolic control on future morbidity and mortality rates [10], [11], [12].

People with type 1 diabetes are usually managed on an outpatient basis by a health care team that includes a medical consultant, specialist nurse and a dietician. The objective is to maintain blood glucose levels as near as possible to the normal range. The gold standard for estimating average blood glucose control over an 8–12-week period is glycated haemoglobin (GHb) and regular testing is used to guide insulin prescribing and other management advice.

In order to avoid acute episodes of hypoglycaemia and ketoacidosis and the development of longer-term complications, people with diabetes must assume responsibility for regulating their blood glucose levels. Self-management involves a complicated, multi-component treatment regimen that includes daily insulin administration by injection or pump, and co-ordinating dietary intake and energy expenditure to be compatible with circulating insulin levels. Capillary blood glucose tests should be undertaken using an automated metering device to guide self-regulation.

Adolescence is a particularly critical time for young people with diabetes. Whether diagnosed in childhood or adolescence, during this transitional period young people learn to take responsibility for and manage their own diabetes [13], [14], [15], [16]. As they integrate self-management of diabetes into their emerging lifestyles, adolescents experience directly the relationship between their actions and their blood glucose levels, and this influences their beliefs about diabetes and its treatment, which may endure through adulthood and predict future self-care and well-being [17], [18], [19], [20], [21].

Research consistently demonstrates that there is a marked worsening of metabolic control during adolescence [22], [23], [24], associated with the onset, and progression of complications [4], [25], [26]. Although this decline is partly attributable to physiological changes occurring at this time, the decline in self-care behaviour is of at least equal importance [14], [24], [27], [28], [29]. This deterioration is particularly marked and of concern in the area of insulin administration [30], and attending for diabetic healthcare [20], [31], [32].

It is widely recommended that educational and psychosocial interventions should be an integral part of diabetes care [1], [33], [34]. It is arguable that these are particularly important in adolescence when young people face the same developmental challenges associated with that life-stage as their non-diabetic peers, in addition to learning to manage and live with their condition. Educational interventions primarily teach the diabetes-related knowledge and skills required for self-management, including testing blood glucose levels and injecting insulin correctly. Psychosocial interventions are diverse, and provide training and support in areas such as social skills, diabetes-related problem-solving and coping, communication skills, and individual and family-based counselling.

Although reviews of educational and psychosocial interventions for adults with diabetes have previously been conducted and have shown beneficial effects [35], [36], [37], [38], [39], [40], no study has concentrated exclusively on programmes that seek to meet the particular needs of adolescents. The systematic review reported here addressed this issue. It categorises the types of programmes that have been offered to adolescents, assesses their outcomes and cost-effectiveness and identifies areas where knowledge is lacking and future research efforts should be directed.

Section snippets

Review methodology

The methodology was based on accepted principles of systematic reviewing [41], and has been described in greater detail elsewhere [42]. A summary of the process is shown in Fig. 1. Eleven databases were searched from their start date through December 2002. Researchers were contacted by personal letters, notices in journals, web sites and flyers distributed at conferences, to solicit reports of completed or ongoing work, published or unpublished. Reference lists were scanned for further

Overview of studies

Descriptive features of the 62 studies are presented in Table 1. Most studies were published between 1985 and 1995. Just over a half were theoretically based, and 42% included control groups. Subject numbers per study tended to be small, 58% of studies had fewer than 40 participants. The majority of studies were (68%) conducted in the USA, and the UK was the second most likely location. Almost 20% of studies were unclear about the setting of the intervention, and by whom it was delivered.

Programmes for adolescents with diabetes for more than 1 year

This

Discussion and conclusion

The search process revealed a heterogeneous group of education programmes for adolescents with diabetes, and a variety of approaches to evaluation. Across a range of outcomes that were measured, most studies were able to report at least one favourable effect. Despite the breadth of research, many unanswered questions remain.

Knowledge is a necessary but not a sufficient condition for successful diabetes management [84]. Education is routinely provided at diagnosis. Although researchers have

Acknowledgements

This review was supported by Grant 96/45/02 from the UK National Health Service Health Technology Assessment Programme. The views and opinions expressed represent those of the authors and do not necessarily reflect those of the funding body. The authors are indebted to Professor Ken Shaw, Dr. Jo Walker, and Professor Rosemary Crow for their input at various stages of this project. They also thank Anne Bird for typing the manuscript. This paper was written whilst Heather Gage was on sabbatical

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