Established Evidence Results

Intervention Components (click on component to see a list of all articles that use that intervention): PROVIDER/PRACTICE, Care Coordination, Integration into Adult Care, Pediatric to Adult Transfer Assistance, Planning for Transition

Intervention Description: This is a longitudinal, observational cohort study in UK secondary care including 374 young people, aged 14–18.9 years at recruitment, with type 1 diabetes (n = 150), cerebral palsy (n = 106) or autism spectrum disorder with an associated mental health problem (n = 118). All were pre-transfer and without significant learning disability. We approached all young people attending five paediatric diabetes centres, all young people with autism spectrum disorder attending four mental health centres, and randomly selected young people from two population-based cerebral palsy registers. Participants received four home research visits, 1 year apart and 274 participants (73%) completed follow-up.

Intervention Results: Exposure to recommended features was 61% for ‘coordinated team’, 53% for ‘age-banded clinic’, 48% for ‘holistic life-skills training’, 42% for ‘promotion of health self-efficacy’, 40% for ‘meeting the adult team before transfer’, 34% for ‘appropriate parent involvement’ and less than 30% for ‘written transition plan’, ‘key worker’ and ‘transition manager for clinical team’. Three features were strongly associated with improved outcomes. (1) ‘Appropriate parent involvement’, example association with Wellbeing (b = 4.5, 95% CI 2.0–7.0, p = 0.001); (2) ‘Promotion of health self-efficacy’, example association with Satisfaction with Services (b = − 0.5, 95% CI – 0.9 to – 0.2, p = 0.006); (3) ‘Meeting the adult team before transfer’, example associations with Participation (arranging services and aids) (odds ratio 5.2, 95% CI 2.1–12.8, p < 0.001) and with Autonomy in Appointments (average 1.7 points higher, 95% CI 0.8–2.6, p < 0.001). There was slightly less recruitment of participants from areas with greater socioeconomic deprivation, though not with respect to family composition.

Conclusion: Three features of transitional care were associated with improved outcomes. Results are likely to be generalisable because participants had three very different conditions, attending services at many UK sites. Results are relevant for clinicians as well as for commissioners and managers of health services. The challenge of introducing these three features across child and adult healthcare services, and the effects of doing so, should be assessed.

Study Design: Longitudinal, observational cohort study

Setting: Community (Home)

Population of Focus: Young people from across England and Northern Ireland with one of three conditions: 1) type 1 diabetes mellitus, 2) autism spectrum disorder (ASD) and additional mental health problems, or 3) cerebral palsy (CP)

Data Source: Baseline demographic questionnaire; Scaled questionnaires—Mind the Gap, Warwick Edinburgh Mental Wellbeing Scale, Rotterdam Transition Profile, Autonomy in Appointments

Sample Size: 374 young people (150 for diabetes, 118 for ASD, and 106 for CP); 369 parents/ caregivers

Age Range: 14-18.9 years at recruitment

Intervention Components (click on component to see a list of all articles that use that intervention): Planning for Transition, Pediatric to Adult Transfer Assistance, Integration into Adult Care, PROVIDER/PRACTICE, Nurse/Nurse Practitioner

Intervention Description: A total of 65 teenagers with T1D were recruited for a structured program of transition. They attend transitional meetings involving both pediatric and adult team and were, when ready, welcomed in specialized consultations for adolescents with a special « passport ». Here we study their characteristics before and after structured transition and the benefit of this program.

Intervention Results: 9 transition meetings took place (September 2012-December 2017). Mean age was 16.5 years. Mean age at onset of T1D was 7.5 years with average pediatric follow-up of 9 years.72% of young adults felt satisfied. After the transition meeting, 74% of patients wished to join directly adult unit. They were followed there for 28.4 ± 16.2 months. The glycaemic control improved significantly with a decrease in HbA1C of 0.93 ± 1.69% the first year of follow-up and the number of young adults achieving a HbA1C < 7.5% increased by 8%.

Conclusion: This program was beneficial for 75% of patients who demonstrated an improvement in their metabolic control the year following transition to adult care service. To our knowledge, this study is the first one in North Africa to report on the outcome of a structured transition program from pediatric to adult diabetes care.

Study Design: Pre-post and prospective cohort

Setting: Clinic-based (Pediatric diabetes clinics)

Population of Focus: Patients treated by two pediatric endocrinologists in clinics from the center of Tunis

Data Source: Demographic and clinical data

Sample Size: 65 patients with type 1 diabetes

Age Range: 14 years and older (no maximum age limit) (range 14.5- 23.2 years)

Intervention Components (click on component to see a list of all articles that use that intervention): Care Coordination, Integration into Adult Care, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: We tested the hypothesis that individuals who participated in the co-located model have greater retention in adult care compared to those who only received pediatric transition services.

Intervention Results: Individuals who participated in the co-location model were 1.9 times more likely to remain in adult care 12 (95%CI: 1.01, 3.47) and 24 (95%CI: 1.01, 3.70) months post pediatric care compared to those who did not participate. Individuals with HbSS/HbSβ0-thalassemia were 1.9 times more likely to be retained at 12 months compared to those with HbSC/HbSβ+-thalassemia/HbS/HPFH (95%CI: 1.12, 3.09). For every clinic encounter in the last 2 years of pediatric care, the odds of being retained at least 24 months after initiating adult care increased 1.1 times (95%CI: 1.02, 1.13).

Conclusion: Continuity of providers from pediatric to adult care may increase long-term retention in adult care. Longitudinal monitoring of adult outcomes is critical to identifying the efficacy of transition services

Intervention Components (click on component to see a list of all articles that use that intervention): Planning for Transition, Pediatric to Adult Transfer Assistance, Integration into Adult Care, PROVIDER/PRACTICE

Intervention Description: Providers from the adult and pediatric endocrinology divisions at the University of Rochester Medical Center met monthly to customize and integrate the Six Core Elements (6CEs) of HCT into clinical workflows. Young adult patients with type 1 diabetes having an outpatient visit during a 34-month pre-post intervention period were eligible (N = 371). Retrospective chart review was performed on patients receiving referrals to adult endocrinology (n = 75) to obtain (1) the proportion of patients explicitly tracked during transfer from the pediatric to adult endocrinology practice, (2) the providers' documentation of the use of the 6CEs, and (3) the patients' diabetes control and healthcare utilization during the transition period.

Intervention Results: The percent of eligible patients with type 1 diabetes who were explicitly tracked in their transfer more than doubled compared to baseline (11% vs. 27% of eligible patients; P<.01). Pediatric providers started to use transition readiness assessments and create medical summaries, and adult providers increased closed-loop communication with pediatric providers after a patient's first adult visit. Glycemic control and healthcare utilization remained stable.

Conclusion: Successful implementation of the 6CEs into pediatric and adult subspecialty practices can result in improvements of planned transfers of pediatric patients with type 1 diabetes to adult subspecialty providers.

Study Design: Retrospective cohort

Setting: Hospital-based (Academic medical center)

Population of Focus: Adolescent and young adult patients who attended at least one outpatient visit with the pediatric endocrinology division during the 34-month study period

Data Source: Electronic medical records, patient charts

Sample Size: 371 (pre-intervention 191, postintervention 180)

Age Range: 18-26 years

Intervention Components (click on component to see a list of all articles that use that intervention): Planning for Transition, Pediatric to Adult Transfer Assistance, Integration into Adult Care, PROVIDER/PRACTICE, YOUTH, Education on Disease/Condition

Intervention Description: Adolescents with a kidney transplant (KT) require special attention during the transition of care. Few longitudinal studies have assessed the effect of transition models (TM) on patient outcomes. Between 1986 and 2013, 239 pediatric patients underwent KT in Finland, of whom 132 have been transferred to adult care. In 2005, a TM was developed following international recommendations. We compared patient (PS) and graft survival (GS) rates before and after the introduction of the TM.

Intervention Results: PS and GS at 10 years were similar before and after the implementation of the TM (PS 85% and 90% respectively, P = 0.626; GS 60% and 58%, respectively, P = 0.656). GS was lower in patients transplanted at age 10-18 than in patients transplanted at a younger age in the TM cohort (79% vs 95%, P < 0.001). During the first five years after transfer, 63% of patients had stable KT function, 13% had deteriorating function and 24% lost their KT. Altogether 32 out of 132 patients lost their kidney allograft within five years after transfer to adult care (13 before and 19 after TM implementation, P = 0.566).

Conclusion: The implementation of this TM had no effect on PS or GS. Further measures to improve our TM are in progress.

Study Design: Quasi- experimental retrospective prepost design

Setting: Hospital/clinicbased

Population of Focus: Adolescents who received kidney transplants

Data Source: Finnish Registry of Kidney Diseases: date of transplant, demographics, etiology of kidney disease, number of operations, type of donor, rejection episodes, date/age of transition, and health/ morbidity/death data

Sample Size: 132

Age Range: 18 years (at time of study)

Intervention Components (click on component to see a list of all articles that use that intervention): Nurse/Nurse Practitioner, Planning for Transition, Pediatric to Adult Transfer Assistance, Integration into Adult Care, YOUTH, Education on Disease/Condition, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: A cluster randomized clinical trial was conducted of a nurse-led transition intervention for 16- to 17-year-olds with moderate or complex CHD versus usual care. The intervention group received two 1-h individualized sessions targeting CHD education and self-management skills. The primary outcome was excess time to adult CHD care, defined as the interval between the final pediatric and first adult cardiology appointments, minus the recommended time interval, analyzed by using Cox proportional hazards regression accounting for clustering. Secondary outcomes included scores on the MyHeart CHD knowledge survey and the Transition Readiness Assessment Questionnaire.

Intervention Results: A total of 121 participants were randomized to receive the intervention (n = 58) or usual care (n = 63). At the recommended time of first adult appointment (excess time = 0), intervention participants were 1.8 times more likely to have their appointment within 1 month (95% confidence interval: 1.1 to 2.9; Cox regression, p = 0.018). This hazard increased with time; at an excess time of 6 months, intervention participants were 3.0 times more likely to have an appointment within 1 month (95% confidence interval: 1.1 to 8.3). The intervention group had higher scores at 1, 6, 12, and 18 months on the MyHeart knowledge survey (mixed models, p < 0.001) and the Transition Readiness Assessment Questionnaire self-management index (mixed models, p = 0.032).

Conclusion: A nurse-led intervention reduced the likelihood of a delay in adult CHD care and improved CHD knowledge and self-management skills.

Study Design: Cluster randomizedclinical trial

Setting: Clinic-based (Outpatient clinic)

Population of Focus: Adolescents attending outpatient clinics in 1 of 2 tertiary care pediatric cardiology programs in Canada

Data Source: Questionnaires

Sample Size: 121 (58 intervention, 63 control)

Age Range: 16-17 years

Intervention Components (click on component to see a list of all articles that use that intervention): Integration into Adult Care, Transition Assistance, Care Coordination, PATIENT_CONSUMER, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: In 2018, we initiated a transition clinic structure, integrating an Internal Medicine - Pediatrics trained Adult Rheumatologist in a Pediatric Rheumatology clinic to guide this transition. Our goal was to improve transition outcomes. We report the methods of this clinic and its preliminary outcomes.

Intervention Results: The transition clinic Adult Rheumatologist saw 177 patients in 2 years, and 57 patients were eligible for, approached, and successfully enrolled in the registry. From this registry, all patients reviewed the Transition Policy with the Adult Rheumatologist and 45 (78.9%) completed at least one Transition Readiness Assessment. Of the 22 patients for whom transition was indicated, all were successfully transitioned to an Adult Rheumatologist. 17 (77.3%) continued care post-transition with the transition clinic Adult Rheumatologist, and 5 (22.7%) continued care post-transition with a different Adult Rheumatologist. The median time between the last transition clinic visit and first Adult clinic visit was 5.1 months.

Conclusion: Our results are an improvement over transition rates reported elsewhere that did not implement our model. We believe that this structure could be applied to other primary care and subspecialty clinics.

Intervention Components (click on component to see a list of all articles that use that intervention): Transition Assistance, Pediatric to Adult Transfer Assistance, Integration into Adult Care, PATIENT_CONSUMER, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: The transition of patients with Prader-Willi syndrome (PWS) to adult life for medical care is challenging because of multiple comorbidities, including hormone deficiencies, obesity and cognitive and behavioral disabilities. To assess endocrine management, and metabolic and anthropometric parameters of PWS adults who received (n = 31) or not (n = 64) transitional care, defined as specialized pediatric care followed by a structured care pathway to a multidisciplinary adult team.

Intervention Results: Among the entire cohort, 35.8% received growth hormone (GH) during childhood and 16.8% had a GH stimulation test after completion of growth. In adulthood, 14.7% were treated with GH, 56.8% received sex-hormone therapy, whereas 91.1% were hypogonadic and 37.9% had undergone valid screening of the corticotropic axis. The main reason for suboptimal endocrine management was marked behavioral disorders. Patients receiving transitional care were more likely to have had a GH stimulation test and hormonal substitutions in childhood. They also had a lower BMI, percentage of fat mass, improved metabolic parameters and fewer antidepressant treatments. Transitional care remained significantly associated with these parameters in multivariate analysis when adjusted on GH treatment.

Conclusion: A coordinated care pathway with specialized pediatric care and transition to a multidisciplinary adult team accustomed to managing complex disability including psychiatric troubles are associated with a better health status in adults with PWS.

Study Design: Retrospective cohort study

Setting: Hospital/clinicbased

Population of Focus: Age 16 or older with Prader-Willi syndrome

Data Source: Medical records, survey

Sample Size: 95; 31 Intervention group, 64 Non- intervention group

Age Range: 16-19 years

Intervention Components (click on component to see a list of all articles that use that intervention): Education on Disease/Condition, YOUTH, Planning for Transition, Pediatric to Adult Transfer Assistance, Integration into Adult Care, Care Coordination, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: Children's hospitals must provide developmentally appropriate care to increasing numbers of young adults with complex healthcare needs as they transition to adult-oriented care. This article describes the patients, service, and short-term outcomes of an interprofessional healthcare transition (HCT) consult team comprised of nurses, social workers, a community health worker, and physicians. The Adult Consult Team's tiered population framework stratifies patients by medical complexity. The team coordinates HCT services for patients with the highest complexity. Patients at least 18 years old are eligible if they have at least two specialists or an intellectual or developmental disability (IDD). Through a comprehensive medical and psychosocial assessment, the team prepares patients/families for adult-oriented healthcare.

Intervention Results: The Adult Consult Team received 197 referrals from July 2017 to June 2018. Patients had at least two specialists (73%), IDD (71%), technology dependence (e.g., gastrostomy tube, 37%) and Medicaid insurance (57%). The team assisted patients seen in its outpatient clinic with navigating mental health services (39%), insurance issues (13%), IDD services (15%), and the guardianship process (37%) and creating comprehensive care plans.

Conclusion: The Adult Consult Team transferred 30 patients with medical complexity to adult primary and specialty care, significantly improving pediatric inpatient and outpatient capacity for pediatric-aged patients. A broad range of young adult medical, psychosocial, legal, educational, and vocational needs were addressed.

Study Design: Cohort pilot evaluation

Setting: Hospital/clinicbased (Large tertiary-care children’s hospital and ambulatory) network located in an East Coast urban community

Population of Focus: Patients aged 18 and older who had not transitioned from pediatric to adult care who need specialty care from at least two specialties and/or had an intellectual or developmental disability

Data Source: Medical records

Sample Size: 197 patient referrals; at analysis, 97 were seen in consultation

Age Range: Mean age 20.4 years

Intervention Components (click on component to see a list of all articles that use that intervention): Care Coordination, Planning for Transition, Integration into Adult Care, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: We describe HCT outcomes within the University of Maryland STEP Program, which is built upon integration of an adult HIV provider and navigator into the pediatric clinic, and coordinated collaboration between pediatric and adult HIV multi-disciplinary care teams.

Intervention Results: In the STEP cohort, linkage to adult care was 94% and 12 month retention in adult care (95%) was statistically higher compared to the historical cohort. Rates of viral suppression did not differ pre- and post-HCT among STEP Program patients.

Conclusion: These results support the concept of an integrated pediatric and adult HIV HCT model though the ability to achieve sustainable HCT success will require further study.

Intervention Components (click on component to see a list of all articles that use that intervention): Care Coordination, Pediatric to Adult Transfer Assistance, Planning for Transition, Integration into Adult Care, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: Developing and evaluating effective transition interventions for young people (16-25 years) with inflammatory bowel disease (IBD) is a high priority. While transition clinics (TCs) have been recommended, little is known about their operating structures and outcomes. This study aimed to gain insight into the value of a TC compared with direct handover care. Data collection included: semistructured interviews with professionals (n=8), observations during consultations with young people (5×4 hours), medical chart reviews of patients transferred 2 to 4 years prior to data collection (n=56 in TC group; n=54 in control group) and patient questionnaires (n=14 in TC group; n=19 in control group).

Intervention Results: At the TC, multidisciplinary team meetings and alignment of care between paediatric and adult care providers were standard practice. Non-medical topics received more attention during consultations with young people at the TC. Barriers experienced by professionals were time restrictions, planning difficulties, limited involvement of adult care providers and insufficient financial coverage. Facilitators experienced were high professional motivation and a high case load. Over the year before transfer, young people at the TC had more planned consultations (p=0.015, Cohen's d=0.47). They showed a positive trend in better transfer experiences and more satisfaction. Those in direct handover care more often experienced a relapse before transfer (p=0.003) and had more missed consultations (p=0.034, Cohen's d=-0.43) after transfer.

Conclusion: A TC offer opportunities to improve transitional care, but organisational and financial barriers need to be addressed before guidelines and consensus statements in healthcare policy and daily practice can be effectively implemented.

Study Design: Controlled mixed-methods evaluation (control group and other controls)

Setting: Clinic-based (2 outpatient IBD (Inflammatory Bowel Disease) clinics)

Population of Focus: Young people with IBD transitioning to adult care

Data Source: Semi-structured interviews, observations during consultations, medical charts, and patient questionnaires

Sample Size: 54 patients

Age Range: 16-25 years of age

Intervention Components (click on component to see a list of all articles that use that intervention): Care Coordination, Integration into Adult Care, Pediatric to Adult Transfer Assistance, Planning for Transition, Nurse/Nurse Practitioner, YOUTH, Education on Disease/Condition, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: We compared the clinical long-term course of 24 patients with and 11 patients without structured transition care within 24 months before and 24 months after transfer from paediatric to adult health care. Socio-economic parameters and quality of life were assessed by IBD Questionnaire (IBDQ-32) and additional items. Treatment costs were calculated for medication, surgery and hospitalisation.

Intervention Results: The percentage of transfer group patients with an IBD-related intestinal complication was higher compared to the transition group (64% vs. 21%, p = 0.022). We also found a tendency towards a higher number of IBD-related surgery in the transfer group compared to the transition group (46% vs. 13%, p = 0.077). Transfer group patients received higher mean cumulated doses of radiation compared with the transition group (4.2 ± 5.3 mSv vs. 0.01 ± 0.01 mSv, p = 0.036). Delayed puberty was only noted in the transfer group (27%, p = 0.025). Mean expenditures for surgeries and hospitalisation tended to be lower in the transition group compared to transfer group patients (744 ± 630€ vs. 2,691 ± 4,150€, p = 0.050). Sexual life satisfaction was significantly higher (p = 0.023) and rates of loose bowel movements tended to be lower (p = 0.053) in the transition group.

Conclusion: Structured transition of adolescents with IBD from paediatric into adult health care can lead to important clinical and economic benefits.

Study Design: Retrospective study design

Setting: Clinic-based (Pediatric department of a health clinic)

Population of Focus: Patients with IBD transferring to adult care

Data Source: Medical records, patient questionnaires

Sample Size: 24 patients with transition care

Age Range: 17-22 years of age

Intervention Components (click on component to see a list of all articles that use that intervention): Counseling (Parent/Family), EMR Reminder, Care Coordination, Integration into Adult Care, Pediatric to Adult Transfer Assistance, Planning for Transition, PARENT_FAMILY, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: The Multidisciplinary Intervention Navigation Team (MINT) was developed to decrease variations in pediatric to adult medical transitions. System-level goals were to (1) increase provider and leadership engagement, (2) increase transition tools, (3) increase use of electronic medical record-based clinical decision supports, (4) improve transition practices through development of transition policies and clinical pathways; (5) increase transition education for patients and caregivers; (6) increase the adult provider referral network; and (7) implement an adult transition consult service for complex patients (MINT Consult).

Intervention Results: Between July 2015 and March 2017, MINT identified 11 transition champions, increased the number of divisions with drafted transition policies from 0 to 7, increased utilization of electronic medical record-based transition support tools from 0 to 7 divisions, held seven psychoeducational events, and developed a clinical pathway. MINT has received more than 70 patient referrals. Of patients referred, median age is 21 years (range, 17-43); 70% (n = 42) have an intellectual disability. Referring pediatric providers (n = 25) reported that MINT helped identify adult providers and coordinate care with other Children's Hospital of Philadelphia specialists (78%); and that MINT saved greater than 2 hours of time (48%).

Conclusion: MINT improved the availability, knowledge, and use of transition-related resources; saved significant time among care team members; and increased provider comfort around transition-related conversations.

Study Design: Cohort pilot evaluation

Setting: Hospital-based (Free-standing tertiary pediatric academic hospital (Children’s Hospital of Philadelphia (CHOP))

Population of Focus: Patients aged 17-43 who had not transitioned from pediatric to adult care for medically complex patients

Data Source: Transition Readiness Assessment Questionnaire; electronic medical records; surveys

Sample Size: Total number not given, but there were 80 consults given over 2 years; 74 were deemed appropriate referrals

Age Range: 17-43 years (median age 20)

Intervention Components (click on component to see a list of all articles that use that intervention): Nurse/Nurse Practitioner, Counseling (Parent/Family), Care Coordination, Integration into Adult Care, Pediatric to Adult Transfer Assistance, Planning for Transition, PARENT_FAMILY, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: Reaching a certain age, juvenile idiopathic arthritis (JIA) patients in paediatric care are transferred to adult care. An increased disease activity after transfer and increased dropout has been suggested, however, evidence is scarce. Our aim is to determine whether the process of transition is associated with increased disease-activity and dropout, and to identify associated factors. During a 3-year prospective transition cohort study, paediatric patients (14-17yrs) were transferred to adult care. Paediatric (10-13yrs) and adult JIA patients (18-27yrs) were used as control groups. Demographic and disease-related items were obtained yearly. Non-parametric tests were used to compare differences between the groups and mixed models to evaluate disease activity over time, measured by JADAS27 and DAS28. Dropout was defined as not attending the clinic for 2 consecutive visits.

Intervention Results: Groups did not differ regarding baseline variables of subtype, gender, uveitis, ANA-, RF- or HLA B27-positivity and current or past DMARD use. Median disease activity was not different between groups during follow-up. Transfer was not associated with disease activity. Dropout rate was 12%, and was significantly higher in patients under transition (22%) compared with paediatric (3%) and adult care (10%). Patients who dropped out had significantly lower disease activity at baseline and were using less MTX, but did not differ regarding subtype, ANA, RF and HLA-B27.

Conclusion: The process of transition in JIA is not associated with an increase in disease activity, however, this period carries a risk for drop out especially in patients with low disease activity.

Study Design: e Longitudinal transition cohort study

Setting: Clinic-based (Out-patient clinics of university hospitals)

Population of Focus: Juvenile idiopathic diabetes 1 patients transferring to adult care

Data Source: Medical records

Sample Size: 64 patients

Age Range: 14-17 years of age

Intervention Components (click on component to see a list of all articles that use that intervention): Integration into Adult Care, Pediatric to Adult Transfer Assistance, Planning for Transition, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: We did a randomised, open-label, controlled trial of patients aged 17-19 years with type 1 diabetes. Participants were recruited from a tertiary paediatric diabetes service at the Royal Children's Hospital (Melbourne, VIC, Australia) and had to be scheduled for transition to adult services at one of eight centres in Melbourne. We randomly assigned participants (1:1), using sequential sealed opaque envelopes, to either appointment management (intervention) or current care (control). The appointment manager acted as the point of contact between intervention group participants and the relevant adult clinics, and provided personalised pre-appointment telephone and short message service (SMS) reminders with automatic rebooking of missed appointments. No contact was initiated with the control group after recruitment, and any self-initiated contact with the investigating team was directed to the participant's previous treating paediatric physician. The intervention continued throughout the trial until at least 12 months of follow-up data were obtained for all participants. We assessed the mean frequency of adult clinic attendance and disengagement from services during 0-12 months after transition (primary outcomes) and 12-24 months after transition (secondary outcomes), analysed by intention to treat. We used regression analyses, adjusted for clinic attendance and glycated haemoglobin concentration pre-transition, to analyse the effect of the intervention. This study is registered with the Australian New Zealand Clinical Trials Registry (number ACTRN12611001012965).

Intervention Results: Between Jan 4, 2012, and Dec 31, 2014, we randomly assigned 120 individuals, 60 to the intervention and 60 to control. During 0-12 months after transition, the mean number of clinics attended was 2·3 (SD 1·1) in the intervention group and 2·3 (1·4) in the control group (p=0·84; adjusted β 0·1, SE 0·2, p=0·88); three (6%) of 49 participants in the intervention group and six (11%) of 55 in the control group disengaged from services (p=0·38; adjusted odds ratio [OR] 0·5, 95% CI 0·1-2·3, p=0·36). At 12-24 months post-transition, mean clinic attendance was 2·5 (SD 1·3) in the intervention group and 1·4 (SD 1·8) in the control group (p=0·001; adjusted β 0·9, SE 0·4, p=0·009); two (6%) of 32 in the intervention group and 18 (49%) of 37 in the control group disengaged from services (p=0·001; adjusted OR 0·1, 95% CI 0·1-0·2, p=0·001). Neither the intervention nor pre-transition clinic attendance had an independent effect on glycated haemoglobin after transition.

Conclusion: Appointment management did not increase clinic attendance and did not decrease disengagement with services 0-12 months after transition to adult services, but had a positive effect during 12-24 months after transition.

Study Design: RCT

Setting: Hospital/clinic- based (One hospital and 8 clinics)

Population of Focus: Young adults with type 1 diabetes transferring from pediatric care to adult clinics

Data Source: Medical records

Sample Size: 60 patients

Age Range: 17-19 years of age