Adult Diabetes Services Research Articles

Transition to Adult Care for Youth with Type 1 Diabetes

Emerging adults with type 1 diabetes are at risk for poor glycemic control, gaps in medical care, and adverse health outcomes. With the increasing incidence in type 1 diabetes in the pediatric population, there will be an increase in the numbers of teens and young adults transferring their care from pediatric providers to adult diabetes services in the future. In recent years, the topic of transitioning pediatric patients with type 1 diabetes to adult diabetes care has been discussed at length in the literature and there have been many observational studies. However, there are few interventional studies and, to date, no randomized clinical trials. This paper discusses the rationale for studying this important area. We review both observational and interventional literature over the past several years, with a focus on new research. In addition, important areas for future research are outlined.

Continuity of care in the transition from child to adult diabetes services: A realistic evaluation study

To identify the continuity mechanisms central to a smooth transition from child to adult diabetes care, the service components through which these can be achieved and their inter-relations in different contexts. A realistic evaluation study of five models of transition in England comprising: organizational analysis (semi-structured interviews with 38 health care professionals and selected observations); case studies of 46 young people under-going transition and 39 carers (three qualitative interviews over a 12-18 month period, medical record review and clinical interviews); surveys of 82 (32% response rate at least once and 11% response rate at two time points) young people in the population approaching, undergoing or less than 12 months post-transition, and their carers (questionnaires included psychosocial outcome measures); and a costs and consequences analysis. Seven continuities contribute to smooth transition: relational, longitudinal, management, informational, flexible, developmental and cultural. Relational, longitudinal, flexible and cultural continuity are the most important. Models with high levels of relational, longitudinal, flexible and cultural continuity achieve smooth transition with relatively informal, low-cost informational and management continuity mechanisms. Models with low levels of relational and longitudinal continuity need to invest in more formal interventions to facilitate management, flexible and informational continuity so that smooth transition is not compromised. Focusing on continuity mechanisms, their inter-relations and the effectiveness of different constellations of service components in achieving smooth transition has furnished evidence to inform the development of innovative models which build on the logic of these findings but are sensitive to local context. Further studies are needed to confirm the quantitative findings from a broader range of services and patients.

Services doing the best they can: service experiences of young adults with type 1 diabetes mellitus in rural Australia

To describe the healthcare experiences of young adults with type 1 diabetes who access diabetes services in rural areas of New South Wales, Australia. The incidence of type 1 diabetes in childhood and adolescence is increasing worldwide; internationally, difficulties are encountered in supporting young people during their transition from children to adulthood. Consumers' experiences and views will be essential to inform service redesign. This was a qualitative exploratory study. Semistructured telephone interviews were conducted with 26 people aged 18-28 years living rurally, recruited through staff in four regional healthcare centres in 2008. Two key themes were evident: lack of access (comprised of transfer to adult services, access to health professionals and access to up-to-date information) and age-appropriate provision. The impact of place of residence and personal motivation crossed all themes. Participants contrasted unfavourably the seamless care and support received from paediatric outreach services with the shortages in specialist and general practice-based care and information and practical problems of service fragmentation and lack of coordination experienced as adults. They identified a range of issues including need for ongoing education, age-appropriate services and support networks related to developing their ability to self-manage. They valued personal service; online and electronic support was seldom volunteered as an alternative. This was a first view of rural young people's experiences with adult diabetes services. Reported experiences were in line with previous reports from other settings in that they did not perceive services in this rural area of Australia as meeting their needs; suggestions for service redesign differed. New models of age-appropriate service provision are required, to meet their needs for personal as well as other forms of support, whilst acknowledging the very real resource limitations of these locations.

Behind the scenes: the changing roles of parents in the transition from child to adult diabetes service

To explore the experiences of young people and their carers during the transition from child to adult diabetes services. Longitudinal qualitative case studies of young people and carers undergoing transition in five different diabetes services in the UK. When young people make the transition from child to adult diabetes services, it is assumed that they will also undergo a parallel transition away from dependence on parents to independent diabetes management. However, the lives of young people are characterized by interdependencies, which are facilitative of their diabetes management and which are not always reflected in healthcare policy and practice. This can lead to discontinuities of information and undermine mothers' ability to continue to support their child into young adulthood. Mothers also lose contact with the service at a time when they are undergoing developmental challenges of their own and need support in adjusting to a new existence. There is a clear need to develop service structures that recognize the continuing role played by mothers in the diabetes care of young adults.

Moving On: Transition of Teens With Type 1 Diabetes to Adult Care

Whereas “transfer of care,” in essence, refers to the act of handing over care from one physician or health care team to another, “transition of care” is far more involved with the before-and-after events surrounding transfer. The transition to adult medical care has long been defined by the Society of Adolescent Medicine as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-centered health care systems.”1 The ultimate goal of such a transition is seamless, comprehensive, and developmentally appropriate health care throughout. Yet all too often, the partnership between those saying goodbye to emerging adults and those welcoming them is tenuous at best. E.A. Coleman put it succinctly as follows: “Complex problems like improving care transitions rarely can be solved with simple solutions.”2 In this article, we address the transition of adolescents with type 1 diabetes from child- and family-centered care to adult-centered care. The 2008 clinical practice guidelines of the Canadian Diabetes Association3 recommend that, “To ensure ongoing and adequate metabolic control, pediatric and adult diabetes services should collaborate to prepare adolescents and young adults for the transition to adult diabetes care.” This recommendation is supported by Grade C evidence, Level 3,4 but it fails to provide advice on the more practical hows and whens of transition. We focus here on three aspects of transition: 1 ) a model of life transitions first proposed by Hopson and Adams5 that highlights the complex psychological and psychosocial upheavals inherent in such transitions, 2 ) a brief review of the diabetes literature on the outcomes of transition, and 3 ) a review of the impact of interventions on these outcomes. More than 30 years ago, Hopson and Adams5 proposed a model of transition in an attempt to understand and manage …

Lost in transition? Access to and uptake of adult health services and outcomes for young people with type 1 diabetes in regional New South Wales

To document diabetes health services use and indices of glycaemic management of young people with type 1diabetes from the time of their first contact with adult services, for those living in regional areas compared with those using city and state capital services, and compared with clinical guideline targets. Case note audit of 239young adults aged 18-28years with type 1diabetes accessing five adult diabetes services before 30June 2008in three geographical regions of New South Wales: the capital (86), a city (79) and a regional area (74). Planned (routine monitoring) and unplanned (hospital admissions and emergency department attendance for hypoglycaemia or hyperglycaemia) service contacts; recorded measures of glycated haemoglobin (HbA(1c)), body mass index (BMI), and blood pressure (BP). Routine preventive service uptake during the first year of contact with adult services was significantly higher in the capital and city. Fewer regional area patients had records of complications assessment and measurements of HbA(1c), BMI and BP across all audited years of contact (HbA(1c): 73% v 94% city, 97% capital; P<0.001). Across all years, regional area patients had the highest proportion of HbA(1c) values >8.0% (79% v 62% city, 56% capital) and lowest proportion <7% (4% v 7%, 22%) (both P<0.001). Fewer young people made unplanned use of acute services for diabetes crisis management in the capital (24% v 49% city, 50% regional area; P<0.001). In the regional area, routine review did not occur reliably even annually, with marked attrition of patients from adult services after the first year of contact. Inadequate routine specialist care, poor diabetes self-management and frequent use of acute services for crisis management, particularly in regional areas, suggest service redesign is needed to encourage young people's engagement.

The transition from children's to adult diabetes services: understanding the ‘problem’

The importance of getting transition right for young people with diabetes is increasingly recognized and a strong professional consensus has emerged on best practice in this domain. Research evidence to inform the design of transitional healthcare services is weak, however, and prevailing views about 'the problem of transition' are based on a number of assumptions about adolescence, adulthood and chronic disease management which have been accepted uncritically. Drawing on youth studies and the sociology of chronic disease management, in this paper we describe how 'the problem of transition' has been defined in the professional and UK policy literature and examine the assumptions that underpin it. We argue that the overwhelming emphasis is on how best to support young people in fitting in with the healthcare system. This has produced an orientation which is more concerned with supporting young people in the process of becoming adults rather than giving attention to their contemporaneous experiences and needs. Two years after the introduction of the UK National Service Framework for diabetes, the challenge of transitional services remains. We suggest that the time has come to consider alternative formulations of the 'problem'. Rather than asking how best to manage transition, we might ask how best to meet the needs of young people with diabetes at this stage of the life course. This requires an understanding of their experiences, the social networks in which they are embedded and consideration of how self-management might be supported by the healthcare system.

Patient and professional accuracy of recalled treatment decisions in out‐patient consultations

To test the assumption that professional recall of consultation decisions is valid and more accurate than patient recall of consultation decisions. One hundred and thirty-four consultations between diabetes specialist nurses and diabetes specialist dietitians in an adult out-patient diabetes service were audiotaped. Patients and professionals were asked to recall the treatment decisions made immediately after the consultation. Patient participants were also asked to complete the Health Care Climate Questionnaire (HCC). Recalled decisions, by patient and professional participants, were then compared with those extracted from the audio tapes, and with each other. The mean duration of consultations was 27 min. Patients recalled a mean of 2.5 (SD 1.4) decisions per consultation, and professionals a mean of 3.2 (SD 1.6) decisions per consultation. A mean of 2.2 (SD 1.1, range 0-4) decisions per consultation were identified on the audiotapes. Patients recalled a mean of 2.3 (SD 1.4, range 0-6) decisions per consultations that could not be found on the tapes, with professionals recalling a mean of 1.7 (SD 1.2, range 0-6) decisions per consultation that could not be found on the tape. More autonomy, as measured by the HCCQ, was correlated with better professional recall (r = 0.17; P < 0.05). Both patients and professionals have poor recall of decisions made in diabetes out-patient consultations. Although the mean professional recall is marginally better than that of the patients, they recall a vast number of unmade decisions and the implications of these being recorded in patients' notes is substantial.

Preparation for transition to adult diabetes services

Preparation for transition to adult diabetes services

Preparation for transition to adult diabetes services

Preparation for transition to adult diabetes services

Current methods of transfer of young people with Type 1 diabetes to adult services.

To determine the efficacy and patient perception of various transfer procedures from paediatric to adult diabetes services. Comparison between four districts in the Oxford Region employing different transfer methods, by retrospective study of case records and interviews of patients recently transferred from paediatric diabetes clinics. The main outcome measures were age at transfer, clinic attendance rates, HbA1c measurements and questionnaire responses. Two hundred and twenty-nine subjects (57% males) > 18 years old in 1998 and diagnosed with Type 1 diabetes < 16 years of age between 1985 and 1995, identified from the regional diabetes register. The notes audit was completed for 222 (97%) and 164 (72%) were interviewed by a single research nurse. Mean age at transfer was 17.9 years (range 13.3-22.4 years). Few young people were lost to follow-up at the point of transfer. There was a high rate of clinic attendance (at least 6 monthly) 2 years pretransfer (94%), but this declined to 57% 2 years post-transfer (P < 0.0005). There was large interdistrict variation in clinic attendance 2 years post-transfer (29% to 71%); higher rates were seen in districts where young people had the opportunity to meet the adult diabetes consultant prior to transfer. The importance of this opportunity was confirmed by questionnaire responses on interview. Adolescence is a vulnerable period for patients with diabetes. This regional survey demonstrated a marked decline in clinic attendance around the time of transition from paediatric to adult services. The reasons are complex, but mode of transfer may be an important factor.