Changing from the paediatric to the adult service: guidance on the transition of care

The majority of people who develop type 1 diabetes (T1D) are diagnosed in childhood. Consequently, as they move through puberty and adolescence,† they have to cope not only with the issues of their society and culture surrounding their position as adolescents, but also with the practical issues of managing their diabetes. At the same time they move from a children's health service into the adult health care system. Therefore, it is accepted that young people with T1D have specific health needs relating to the physical and socio-cultural changes of adolescence. Unfortunately, this period frequently leads to deterioration in glycaemic control. The Diabaud survey in 1998 across Scotland1 showed worsening glycaemic control with increasing age (see Figure 1); a pattern repeated in several cohort studies of young people with T1D.2-5 Rise in HbA1c in young people with type 1 diabetes in Scotland (age <15 years). Glycaemic control is significantly worse in the older child (average HbA1c [%] age range 10–15 years 9.5% vs all other ages 8.6%, p<0.001). No significant differences between boys and girls Several factors appear to combine in preventing teenagers achieving ‘tight glycaemic control’.‡ There are undoubtedly physiological changes in glucose metabolism that lead to an apparent need for an increase in insulin dosage to maintain a similar level of glycaemia when moving from childhood to adolescence. Combined with the changes in insulin-like growth factor and IGF binding protein, and growth hormone concentration6, 7 and body composition,8 insulin glucose homeostasis, therefore, is affected, producing higher levels of glycaemia in T1D. However, there are major behavioural, social and cultural changes in adolescence that appear to affect the ability of young people to manage their diabetes successfully over time. Adolescence is a critical time for young people with diabetes, with individuals required to take responsibility for the management of their own diabetes,9-11 experiencing the relationship between their own actions, blood glucose levels and physical symptoms, which all influence beliefs about diabetes and its management. These are formative years in the development of such beliefs, which, once fully integrated and accepted by the young person, may prove difficult to change. Therefore, they are in the unenviable position of facing the same developmental tasks and demands as all young people, but with the additional challenge of learning to manage their diabetes. The main challenge is to improve diabetes control through this transitional phase, without depriving young people of the appropriate age-related experiences.12 The complex array of diabetes and general developmental issues has generated a wealth of literature on the psychological aspects of paediatric chronic illness, and diabetes in particular. Research has focused primarily on the relationship between adolescents and their families, with support and cohesion within the families consistently associated with better metabolic control and self-care.13 Furthermore, early responsibility for diabetes care, accompanied by lack of parental involvement, is predictive of lower concordance, poor control and diabetic ketoacidosis.14 However, there is a paucity of research on the role of the adolescent's peer group in relation to concordance, at a time when peer influence becomes important. Importantly it has been recommended that ‘greater attention be paid to the social context’ in which the adolescent lives.15-17 The few studies that have been conducted indicate that peers are an important source of emotional support, and that this support is essential for optimal self-care and emotional well being.18, 19 Responsibility was encouraged at an early age, separating them from family and peer support. Parents and peers were excluded at an age irrespective of development—i.e. categorisation was by age, not by individual ability and preference. Exclusion of the parents obscured non-concordance suggesting ‘normal progress towards adulthood and independence’. ‘Good controllers’ were more likely to be rewarded with less clinic visits, intensifying their sense of isolation. Breaking down of reciprocal social networks (such as family, peer groups) providing community support of the young. This contrasted with considerable reciprocity between the health carers (e.g. conferences, team meetings, social support network). Health care professionals appeared to comply with British social pressures to concentrate on the individuality of their patients, irrespective of their social situations, to make them accountable for their own illness. There is a mismatch between the health goals of the young person with diabetes and their health care professionals supporting them. This is compounded by the ‘medicalisation of adolescence’, i.e. the expectation that adolescence is a medical entity and leads automatically to a disruption of health. Health carers expect poor concordance in young people and there is a notion of low success and ‘good concordance is viewed as abnormal in this age’. This leads to the expectation that the diabetes strategies are damned in this group from the outset. We believe that this view of the teenager operates in many societies, particularly where a ‘Western View of Adolescence’ operates. For many young people, therefore, the outcome of the pressure of having a chronic disease at a time of major physiological, social and behavioural change is to reject the rigors of the strategies proposed by the health professionals for the management of their diabetes. Non-adherence to insulin therapy and other care strategies is a major factor in the deterioration of glycaemic control in this age range.22, 23 Taking these views of T1D in the teenage years into consideration and the consequence of poor control with its major risk of acceleration of early micro-vascular complications,2 it is appropriate to consider that this age group requires a special service. This should take into account the practical needs of this age range and the special features of a transition clinic across the health provision for children and adults. The National Institute for Clinical Excellence (NICE) through the National Collaborating Centre for Women's and Children's Health has recently (September 2004) reviewed and published the evidence of effective transition of care as part of the Guidelines for the UK on the Management of Type 1 Diabetes in Children and Young People (http://www.nice.org). The latest available review for the UK found that over half of all diabetes services surveyed transferred young people into special young adult diabetes clinics as opposed to general adult diabetes clinics.24 NICE found no studies that examined the clinical or cost effectiveness of transition clinics. However, several studies compared children's and adult clinics. A survey investigating the transfer of young people from children's to adult clinics in the Oxford region showed that age of transfer ranged from 13.3 years to 22.4 years (mean age 17.9 years).25 The rate at which clinic attendance occurred at least every six months dropped from 98% at two years before transfer to 61% at two years after transfer. A letter of transfer was identified in the clinical records for 86% of the young people, and the attendance rate at the first appointment in the new clinic was 79%. Another study examined young people's knowledge of adult clinics before transfer, preparation for transfer, and how young people felt about the move.26 Young people who were attending an adolescent or transition clinic seemed to have little knowledge about the clinic they would be going to in the future. Of the young people attending adult clinics, 35% had discussed the change beforehand, 16% reported having had a choice about the move, 84% felt they were ready to move, and 40% felt they were well prepared by staff for the move. However, 79% were not pleased to move. A Canadian survey examined the experience of young people with T1D during the period of transfer from paediatric to adult care.27 The mean age at transfer was 18.5 years, and this was lower than the age of transfer suggested by the patients (18.8 years); 21% of patients felt they should have been transferred earlier, whereas 65% felt they should have been transferred later. After transfer, 13% had no regular contact with adult care services, 3% had contact with a family physician, and the remainder had contact with an endocrinologist or a diabetes clinic. Thirty-three percent of patients felt they had a problem with the transition from paediatric to adult care. Twenty-seven percent experienced a delay of more than six months between their last visit to the paediatric clinic and their first visit to the adult clinic (in 17% of patients this delay was greater than one year). A Finnish study examined glycaemic control in young people one year before and one year after they were transferred from a paediatric clinic to an adult clinic,28 with the mean age at transfer at 17.5 years and the mean HbA1 level improving from one year before transfer to one year after transfer (11.2 vs 9.9%). An Australian survey of young people with T1D found that patients wished to be treated in a range of care places (72% public hospital, 43% private specialist, and 14% general practitioner only).29 They also had differing views on the age of transfer (6% felt that transfer should occur before the age of 17 years, 49% felt that transfer should occur between the ages of 17 years and 20 years, and 45% felt that transfer should occur at any age up to 25 years). A UK survey of young people in Exeter showed that the average age of transfer was 15.9 years (range 12–20 years), and 27% offered some reason for transfer of care.30 The patients thought that it would be more helpful to visit the young adults' clinic before transfer than for a nurse or physician from the young adults' clinic to visit the paediatric clinic. The young people thought that the staff in the paediatric clinic assigned more importance to school progress and family relations than did staff in the young adults' clinic but less importance to exercise, avoidance of complications and blood glucose. The paediatric and young adults' clinic staff did not differ in their assignment of importance to diet, insulin management or privacy. In preparation of the Guideline, NICE organised a young people's consultation day. We found that some parents suggested that age of transfer of young people with T1D from paediatric to adult services should be standardised and that clinics should be jointly run by paediatric and adult services to provide continuity of care, whereas other parents thought that young people with T1D should be involved in the decision about when transfer should occur. Young people with T1D liked age-banded clinics. The UK National Service Framework for Diabetes states that transfer of young people with diabetes from paediatric services to adult services often occurs at a sensitive time in relation to the young person's diabetes and personal life.31 The culture change that occurs at transition is found to be unacceptable by many young people, and young people's attendance rates at adult clinics are often low. Sensitive and skilled care at transition can assist in achieving good diabetes management, with a consequent avoidance of complications. A multidisciplinary approach is particularly effective for young people at transition. Young people with T1D who are preparing for transition to adult services should be informed that some aspects of diabetes management will change at transition. The increasing emphasis on screening for not only micro-vascular but also macro-vascular disease. The emphasis on tight glycaemic control with pre- and post-prandial blood glucose targets of 4–7 mmol/L and less than 9 mmol/L, respectively. NICE summed up its recommendations for transition of care in seven points (see Table 1). The recommendations are broad and assume that each individual young adult will receive a personalised care package from a multidisciplinary team, experienced in the issues of teenagers in their respective cultural setting. ‘D’ and ‘GPP’ evidence: see Figure 2. From the limited evidence base the recommendations were weighted, based on the NICE criteria (see Figure 2). NICE suggested strongly that further research is needed to investigate young people's experiences of transition from paediatric to adult services for people with T1D. National Institute for Clinical Excellence grading structure of the evidence base and recommendations. (© NICE) Firstly, and perhaps most importantly, the children's team needs to communicate with and be comfortable working closely with the adult team. Both must share a philosophy, as well as an understanding of the social positioning in their culture of adolescence. The transition clinic should be serviced by both teams, to their mutual convenience. Agreement should be made on the culturally designed and influenced: —venue —age range —position of parents and peers —clinical standards and care strategies. The service should have easy access to psychological support. Education programmes should include advice and direction on the management of diabetes and various lifestyle issues:§ —alcohol —smoking cessation —avoidance of recreational drugs —pre-pregnancy planning and contraception —work and diabetes —extreme sports and diabetes. The limited evidence for the UK suggests that transition clinics should start at around 18 years of age (following on from age-banded clinics in the paediatric service), facilitate the participation of family and peers, and encourage an intensive approach to insulin therapy, accompanied by formalised and frequent screening for micro- and macro-vascular complications. A dilemma is arising with the management of patients who were managed as children with T1D in the paediatric service and who are then transferred through a successful transition service. Most groups recommend the end of transition to be around 22–25 years of age, usually coinciding with the finishing of tertiary education. This raises the question of: ‘Who provides the service for older people with T1D?’ Should they be retained into a special T1D service or be managed by their general practitioner or family physician? If the latter, should these health professionals be designated as diabetes specialists? In reality, certainly in the UK, a considerable number of these young adults ‘disappear’ from the health service. This ‘lost tribe of T1D’ then re-emerges with the clinical declaration of micro- and macro-vascular disease. The adult diabetes service is often unable to cope with additional workload against the background of the explosion of type 2 diabetes. A way forward could be to develop specialised family practitioners, trained in T1D management and/or to consider a dedicated specialist service for T1D, which could offer continuity across the age range.