Established Evidence Results

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, PROVIDER/PRACTICE

Intervention Description: The purpose of the study was to evaluate an adult health care program model for emerging adults with type 1 diabetes transitioning from pediatric to adult care.

Intervention Results: From baseline to 6 months, mean A1C decreased by 0.7% (8 mmol/mol), and BGMF increased by 1 check per day. Eighty-eight percent of participants attended ≥2 visits in 6 months, and the program was rated highly by participants and providers (pediatric and adult).

Conclusion: This study highlights the promise of an adult health care program model for pediatric to adult diabetes transition.

Study Design: Pre, post, and retrospective cohort

Setting: Clinic-based (Pediatric to Adult Diabetes Transition Clinic at academic institution (UPenn))

Population of Focus: Emerging adults with type 1 diabetes

Data Source: Transfer summaries and electronic medical records, including pre- and post- program assessments

Sample Size: N=72

Age Range: 18-25 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, PROVIDER/PRACTICE

Intervention Description: Patients with IBD, aged > 18 years, who had moved from paediatric to adult care within 10 years were identified through IBD databases at three tertiary hospitals. Participants were surveyed regarding demographic and disease specific data and their perspectives on the transition process. Survey response data were compared to contemporaneously recorded information in paediatric service case notes. Data were compared to a similar age cohort who had never received paediatric IBD care and therefore who had not undergone a transition process.

Intervention Results: There were 81 returned surveys from 46 transition and 35 non-transition patients. No statistically significant differences were found in disease burden, disease outcomes or adult roles and responsibilities between cohorts. Despite a high prevalence of mood disturbance (35%), there was a very low usage (5%) of psychological services in both cohorts. In the transition cohort, knowledge of their transition plan was reported by only 25/46 patients and the majority (54%) felt they were not strongly prepared. A high rate (78%) of discussion about work/study plans was recorded prior to transition, but a near complete absence of discussion regarding sex (8%), and other adult issues was recorded. Both cohorts agreed that their preferred method of future transition practices (of the options offered) was a shared clinic appointment with all key stakeholders.

Conclusion: Transition did not appear to adversely affect disease or psychosocial outcomes. Current transition care processes could be optimised, with better psychosocial preparation and agreed transition plans.

Study Design: Retrospective cohort study

Setting: Hospital-based (Public pediatric gastroenterology service at Women’s and Children’s Hospital (Royal Adelaide Hospital)

Population of Focus: Patients with Inflammatory Bowel Disease (IBD), aged > 18 years, who had moved from pediatric to adult care within ten years

Data Source: IBD databases at three hospitals; medical records; surveys

Sample Size: N=46 (transition survey respondents) N=35 (non-transition survey respondents)

Age Range: 18-28 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, PROVIDER/PRACTICE

Intervention Description: A retrospective cohort analysis of admissions for DKA in YWD aged 15-25 years, presenting to four hospitals in Western Sydney in 2011 was performed. Number of admissions, LOS and DKA severity were assessed. Cost was analysed as a function of LOS. Groups were divided by attendance at a youth-specific diabetes service and no record of attendance.

Intervention Results: There were 55 DKA admissions from 39 patients (median age 20.0 years); the majority of admissions (82%) was YWD not supported by a youth-specific diabetes service. Median LOS was significantly longer in the unsupported group (3.0 vs 1.5 days, P = 0.028). Median pH at presentation in the unsupported group was significantly lower, 7.11 versus 7.23 (P = 0.05). The admission rate was four times greater for those not supported by youth-specific diabetes services, 5.5% compared with 1.6% (P = 0.001). The estimated cost saved by youth-specific services was over $250,000 pa.

Conclusion: Lack of access to supported care for YWD during transition from paediatric to adult care has an adverse impact on subsequent DKA admission rates and LOS.

Study Design: Retrospective cohort study

Setting: Hospital-based (Non-pediatric hospitals in western Sydney)

Population of Focus: Youth with type 1 diabetes mellitus

Data Source: Electronic medical records and hospital files; data from the National Diabetes Services Scheme (NDSS)—a government-initiated body that provides support services and information to patients with diabetes, recording age, type of diabetes, and address

Sample Size: 1052 patients aged 15-25 years with T1DM living in the area serviced by the four hospitals; 492 linked to a youth-specific diabetes clinic; an estimated 560 receiving non-specialized care within the community setting only

Age Range: 15-25 years

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

Intervention Description: Our aim was to assess the effect of a communication technology enhanced transition coordinator intervention compared with usual care on clinic attendance among transitioning youth with type 1 diabetes.

Intervention Results: There were no baseline differences in age, sex, HbA1c and number of follow-up visits, emergency department visits and diabetic ketoacidosis admissions in the 1 year prior to transition between the usual care (n = 101) and intervention (n = 102) groups. In the year following transfer, 47.1% in the usual care group vs 11.9% in the intervention group did not attend any outpatient diabetes appointments (p < 0.01). There were no differences in glycaemic control or diabetic ketoacidosis post transfer.

Conclusion: Our intervention was successful in improving clinic attendance among transitioning youth with type 1 diabetes. Importantly, this programme used simple, readily accessible communication technologies, which increases the sustainability and transferability of this strategy.

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

Intervention Description: The Youth Transition Project (YTP) is a public-private partnership focused on Foster Care youth ages 16-21 transitioning from foster care or experiencing homelessness. The centerpiece of the project is a tiny-home village with comprehensive life skills, employment training, education and well-being supports provided by the broader community. The goal is that disconnected West Virginia youth are supported to reach their full potential as they transition into adulthood.

Intervention Results: Over an 18-month period, a total of 127 (59.1%) youth were transitioned and seen by an AMHS provider, 41 (19.1%) remained on a waitlist for services and 47 (21.8%) canceled services. The average time to transition was 110 days (SD = 100). Youth exhibited a wide range of diagnoses; 100% of the population was identified as having serious psychiatric problems. Findings demonstrate that the Youth Transition Project has been successful in promoting continuity of care by transitioning youth seamlessly from youth to adult services.

Conclusion: Inconsistencies in wait times and service delivery suggest that further model development is needed to enhance the long-term sustainability of the Youth Transition Project.

Study Design: Prospective cohort

Setting: Children and Adolescent Mental Health Services (CAMHS) and Adult Mental Health Services (AMHS)

Population of Focus: Youth with mental health and/or addiction problems transitioning to Adult Mental Health and Addiction Services

Data Source: The Ontario Common Assessment of Need–Self (OCAN-Self)—a self-report indicator; youth tracking tools (modified from Singh et TRACK measures); The Global Appraisal of Individual Needs Short Screener (GAIN-SS)—a 27- item self-report measure used to screen for mental health and addictions problems; and the adult needs and strengths assessment for transition to adulthood (ANSA-T), completed by caregiver

Sample Size: 215 seen by the transition coordinator; 127 completed their transition and were seen by an AMHS provider; 41 youth had yet to transition and remained on a waitlist for AMHS

Age Range: 16-20 years

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): HEALTH_CARE_PROVIDER_PRACTICE, Nurse/Nurse Practitioner, Planning for Transition, Pediatric to Adult Transfer Assistance, Care Coordination, Quality Improvement/Practice-Wide Intervention

Intervention Description: This quantitative descriptive study used a survey questionnaire to investigate nurses' role and responsibilities in health care transition planning (HCTP) for youth and young adults with chronic illness and/or disability. The survey looked at respondents' role in health care transition planning (HCTP), inclusion of HCTP in job description, levels of HCTP knowledge, and ratings of importance of HCTP elements.

Intervention Results: Over 64% of respondents performed HCTP activities related to complex chronic illness management. Only 18% reported specialized training in HCTP. The highest-ranking items in regard to perceived importance were educating and supporting disease self-management and speaking with families about complex needs. Predictors of perceived importance were role, inclusion of transition planning in a job description, percentage of time in direct care, caring for those aged 14 years and older, and level of knowledge about HCTP.

Conclusion: The findings highlight key aspects of the pediatric nurse role in HCTP and identify specific elements that can be addressed to support future HCTP role development.

Study Design: Quantitative descriptive methodology

Setting: Hospitals/Clinics

Population of Focus: Pediatric nurses

Sample Size: 1814

Age Range: Adults

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): Planning for Transition, Pediatric to Adult Transfer Assistance, Care Coordination, PROVIDER/PRACTICE

Intervention Description: To identify (a) determinants of glycated haemoglobin (HbA1c) at 18 and 30 months following transition in young people with Type 1 diabetes mellitus (T1DM) to a youth-specific diabetes service; and to (b) evaluate the impact of the service on acute admissions with diabetic ketoacidosis (DKA) over a 14-year period.

Intervention Results: Data from 439 adolescents and young adults (Median age: 18) were analysed. The recommended standard of glycaemic control, HbA1c < 7.5% (58 mmol/mol), was achieved by 23% at baseline, 22% at 18-months, and 20% at 30-month. After adjusting for lag time (>3 months) and diabetes duration (>7 years), glycaemic control at first visit predicted subsequent glycaemic control at 18-month and 30-month follow-up. From 2001 to 2014, only 8.6% were lost to follow-up; admissions and readmissions for DKA reduced from 72% (32/47) to 4% (14/340) (p < 0.001). Furthermore, mean length of stay (LOS) significantly decreased from 6.56 to 2.36 days (p < 0.001).

Conclusion: Continuing engagement with the multidisciplinary transition service prevented deterioration in HbA1c following transition. Age-appropriate education and regular follow-up prevents DKA admissions and significantly reduced admission LOS.

Study Design: Pre-post and retrospective cohort

Setting: Clinic-based (Referral from pediatrics services to a multidisciplinary transition service)

Population of Focus: All youth with diabetes referred to the young adult diabetes service since 2001

Data Source: Administrative database

Sample Size: 439 adolescents and young adults

Age Range: Median age: 18 years

Intervention Components (click on component to see a list of all articles that use that intervention): Planning for Transition, Transition Assistance, PATIENT_CONSUMER, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: Young adults with intellectual/developmental disabilities (YAIDD) are a vulnerable population during HCT due to their complex care coordination and adaptive needs, yet factors associated with transition preparedness are not well defined. We aimed to determine factors associated with health care transition (HCT) preparation satisfaction for YAIDD establishing care with an adult medical home.

Intervention Results: YADD who had HCT preparation visits with a designated HCT clinic were 9 times more likely to have met all six composite HCT criteria after controlling for the number of technologies required and race/ethnicity (adj OR 9.04, 95% CI: 4.35, 18.76) compared to those referred from the community. Compared to patients who were referred from the community, the odds of feeling very prepared versus somewhat or not prepared were 3.7 times higher (adj OR 3.73, 95% CI: 1.90, 7.32) among patients referred from a designated HCT program.

Conclusion: YAIDD who participated in a structured HCT program prior to transfer to adult care experienced higher transition preparation satisfaction. Practical implications: A structured HCT clinic model to prepare adolescents with DD for transition to adult care may improve HCT preparation satisfaction for this population.

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

Intervention Description: We prospectively enrolled patients from July 2012 to June 2013. All adolescents who attended a tertiary-centre-based dedicated IBD transition clinic were invited to participate. Adolescent controls were recruited from university-affiliated gastroenterology offices. Participants completed questionnaires about their disease and reported adherence to prescribed therapy. Beliefs in Medicine Questionnaire was used to evaluate patients’ attitudes and beliefs. Beliefs of medication overuse, harm, necessity and concerns were rated on a Likert scale. Based on necessity and concern ratings, attitudes were then characterized as accepting, ambivalent, skeptical and indifferent.

Intervention Results: One hundred and twelve adolescents were included and 59 attended transition clinics. Self-reported adherence rates were poor, with only 67.4% and 56.8% of patients on any IBD medication were adherent in the transition and control groups, respectively. Adolescents in the transition cohort held significantly stronger beliefs that medications were necessary (P = 0.0035). Approximately 20% of adolescents in both cohorts had accepting attitudes toward their prescribed medicine. However, compared to the control group, adolescents in the transition cohort were less skeptical of (6.8% vs 20.8%) and more ambivalent (61% vs 34%) (OR = 0.15; 95%CI: 0.03-0.75; P = 0.02) to treatment.

Conclusion: Attendance at dedicated transition clinics was associated with differences in attitudes in adolescents with IBD.

Study Design: Prospective study

Setting: Clinic-based (Tertiary center- based dedicated irritable bowel syndrome (IBD) offices/control: university affiliated gastroenterology offices)

Population of Focus: Adolescent patients with IBD

Data Source: Online questionnaires, consultation with clinicians

Sample Size: 112 total; 59 attended transition clinics

Age Range: 18-21 years

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

Intervention Description: All patients who visited our multidisciplinary Epilepsy Transition Clinic between March 2012 and September 2014 were invited to participate (n=114). Patients were sent one questionnaire and informed consent was obtained. Questions included the patient's level of functioning on three transitional domains and a list with medical health care workers. Previously defined scores on three transitional domains and the risk profile score were re-evaluated. Past and current patient characteristics were compared using descriptive statistics. Discriminant analyses were used to determine the influence of patient-related intrinsic factors (defined as the risk factors from our previous study) and a multidisciplinary transition intervention on the improvement of medical and psychosocial outcome.

Intervention Results: Sixty-six out of 114 invited participants (57.9%) completed the questionnaire. Discriminant analyses showed that the patient-related intrinsic factors combined proved a strong predictor for improvement in medical outcome (72.7%) and relatively strong for educational/vocational outcome (51.5%). The transition interventions are a relative strong predictor of improvement in medical outcome (56.1%), educational/vocational outcome (53.0%) and improvement in the overall risk score (54.5%).

Conclusion: Based on the overall improvement of psychosocial outcome in most patients, and the influence of a transition intervention on medical, educational/vocational outcome and the overall risk score, it is likely that adolescents with epilepsy benefit from visiting a multidisciplinary epilepsy transition clinic.

Study Design: Prospective study

Setting: Clinic-based (Epilepsy transition clinic)

Population of Focus: Adolescent patients who had attended the Epilepsy Transition Center from six months to three years previously

Data Source: Questionnaires, clinic data (previously collected baseline)

Sample Size: 66

Age Range: 15-25 years (mean age 18.9 at baseline and 20.8 at follow-up)

Intervention Components (click on component to see a list of all articles that use that intervention): Planning for Transition, Pediatric to Adult Transfer Assistance, PROVIDER/PRACTICE, EMR Reminder, Nurse/Nurse Practitioner, PARENT/FAMILY, Notification/Information Materials (Online Resources, Information Guide)

Intervention Description: An EMR-based transition planning tool (TPT) was introduced into the Pediatric CHD Clinic. Two nurses used the TPT with eligible patients. Independent of the intervention, two medicine-pediatric CHD physicians and one nurse practitioner were added to the ACHD Clinic to address growing capacity needs.

Intervention Results: Control patients waited 26 ± 19.2 months after their last pediatric clinic visit for their first adult visit. Intervention patients waited 13 ± 8.3 months (P = .019). Control and Intervention patients experienced a lapse in care greater than two (50% vs 13%, P = .017) and three (30% vs 0%, P = .011) years, respectively. The difference between the recommended number of months for follow-up and the first adult appointment (15.1 ± 17.3 Control and 4.4 ± 6.1 Intervention months) was significant (P = .025). NYHAFS deteriorated between the last Pediatric visit and the first ACHD visit for seven (23%) Control patients and no Intervention patients (P = .042). Four of seven Control patients whose NYHAFS declined had a lapse of care of more than two years.

Conclusion: There is a need for improved HCT planning for patients with moderate to severe CHD, otherwise, lapses of care and adverse outcomes can ensue.

Study Design: Prospective study

Setting: Clinic-based (Children’s hospital pediatric cardiology clinic)

Population of Focus: Adolescent patients with moderate to severe congenital heart disease (CHD)

Data Source: Electronic medical records; New York Heart Association Functional Assessment of Heart Failure instrument

Sample Size: 25 intervention, 30 control

Age Range: Intervention 16- 25 years, control 18 years or older

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

Intervention Description: To assess participation with a structured transition programme for adolescents with diabetes.

Intervention Results: Five hundrend and twelve adolescents who were to be transferred to adult care (476 type 1 (T1D) and 36 type 2 (T2D)), overall participation rate of 83%, 86% (408/476) with T1D compared to 47% (17/36) with T2D. Within the cohort of T1D, participation rates for Māori and Pacific were lower (74% and 77%, respectively) than New Zealand Europeans (88%, p = 0.020 and p = 0.039, respectively). Lower socio-economic status was associated with reduced participation (77%) compared to higher socio-economic status (90%, p = 0.002). Of the 476 T1D who participated, 408 (96%) subsequently attended at least one adult service clinic ("capture"). 42% attended an adult clinic within the planned 3 months, 87% at 6 months and retention in adult clinics over 5 years of follow-up was 78%. By contrast, the 68 young people with T1D who did not participate in the structured transition had a capture rate of 78% (p < 0.001) and retention of 63% (p = 0.036).

Conclusion: In adolescents with diabetes, a formal transition from a paediatric service was associated with high rates of adult capture and subsequent retention in adult care over a 5-year follow-up period. Low socio-economic status, Māori or Pacific ethnicity and T2D were associated with reduced participation in the structured transition programme.

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): Transition Assistance, PATIENT/CONSUMER, HOSPITAL, Continuing Education of Hospital Providers, POPULATION-BASED SYSTEMS, INTER-HOSPITAL SYSTEMS, Neonatal Back-Transport Systems, Consultation Systems (Inter-Hospital Systems), Consultation Systems (Hospital), Telemedicine Systems (Inter-Hospital Systems), Telemedicine Systems (Hospital)

Intervention Description: Assessed a telemedicine (TM) network's effects on decreasing deliveries of very low birth weight (VLBW, <1500 g) neonates in hospitals without Neonatal Intensive Care Units (NICUs) and statewide infant mortality.

Intervention Results: Deliveries of VLBW neonates in targeted hospitals decreased from 13.1 to 7.0% (P=0.0099); deliveries of VLBW neonates in remaining hospitals were unchanged. Mortality decreased in targeted hospitals (13.0% before TM and 6.7% after TM). Statewide infant mortality decreased from 8.5 to 7.0 per 1000 deliveries (P=0.043).

Conclusion: TM decreased deliveries of VLBW neonates in hospitals without NICUs and was associated with decreased statewide infant mortality.

Study Design: QE: pretest-posttest

Setting: All Arkansas hospitals (Nine selected as telemedicine hospitals due to high patient volume)

Population of Focus: Infants born weighing <1500 gm

Data Source: Medicaid data for VLBW infants as indicated by ICD-9 diagnosis codes from hospital and physician claims for pregnancy. Data infant with birth and infant death certificates.

Sample Size: Pretest (n= 383) Posttest (n= 384)

Age Range: Not specified

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

Intervention Description: The objective was to evaluate healthcare outcomes (continuity of care and healthcare utilization) for clients enrolled in LIFEspan.

Intervention Results: Prospective enrolment comprised 30 ABI, 48 CP, and 21 SB participants. Retrospective enrolment comprised 15 ABI and 18 CP participants. LIFEspan participants demonstrated significantly greater continuity of care (45% had engagement with adult services in the year following discharge at 18 years), compared to the prospective SB group (14%). Healthcare utilization data were inconsistent with no significant changes in frequency of physician office visits, emergency department visits, or hospitalizations for clients enrolled in LIFEspan in the year following discharge, compared to the 2 years prior to discharge.

Conclusion: Introduction of the LIFEspan model increased continuity of care, with successful transfer from pediatric to adult services for clients enrolled. Data on longer-term follow-up are recommended for greater understanding of the degree of adult engagement and influence of LIFEspan on healthcare utilization following transfer.

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): Care Coordination, Planning for Transition, Transition Assistance, HEALTH_CARE_PROVIDER_PRACTICE, PATIENT_CONSUMER

Intervention Description: The research aimed to analyse the implementation in an initial cohort of patients of a new programme of transition to adult care based on a case

Intervention Results: The cohort included 500 patients, with malignant brain tumour (n = 56 (11%)), obesity (n = 55 (11%)), type 1 diabetes (n = 54 (11%)), or other disease (n = 335 (67%)). Their median age at transfer was 19, and the sex ratio was 0.5. At median 21 months of follow-up, 439 (88%) had a regular follow-up in or outside the hospital, 47 (9%) had irregular follow-up (absence at the last appointment or no appointment scheduled within the time recommended), 4 had stopped care on doctor's advice, 4 had died, 3 had moved, and 3 had refused care. The programme involved 9615 case management actions; 7% of patients required more than 50 actions. Patients requiring most support were usually those affected by a rare genetic form of obesity.

Conclusion: Case managers successfully addressed the complex needs of patients. Over time, the cohort will provide unprecedented long-term outcome results for patients with various conditions who experienced this form of transition.

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, Care Coordination, PROVIDER/PRACTICE

Intervention Description: Adolescents and young adults with special health care needs were enrolled in a randomized HCT CC intervention. Intervention participants received HCT CC as outlined in the 2011 clinical report. Perceptions of chronic illness care quality and CC were assessed at 0, 6, and 12 months.

Intervention Results: Intervention participants had a Patient Assessment of Chronic Illness Care score at 12 months of 3.6 vs 3.3 compared with participants in the control group (P = .01). Intervention participants had higher average scores for patient activation (3.7 vs 3.4; P = .01), problem solving (3.8 vs 3.4; P = .02), and coordination/follow-up (3.0 vs 2.5; P < .01). The Client Perceptions of Coordination Questionnaire revealed that intervention participants had 2.5 times increased odds to endorse mostly or always receiving the services they thought they needed and had 2.4 times increased odds to have talked to their provider about future care (P < .01).

Conclusion: Implementing recommended HCT CC practices improved patient or patient caregiver perception of quality of chronic illness care and CC especially among the most complex patients.

Study Design: Randomized controlled trial

Setting: Hospital/clinicbased

Population of Focus: SSI Medicaid MCO recipients with chronic conditions who spoke English and could complete surveys

Data Source: Patient Assessment of Chronic Illness Care (PACIC)15 and the Client Perceptions of Coordination Questionnaire (CPCQ)

Sample Size: 209 (105 intervention, 104 control)

Age Range: 16-22 years

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): Care Coordination, Transition Assistance, HEALTH_CARE_PROVIDER_PRACTICE, PATIENT_CONSUMER

Intervention Description: This study evaluated the services delivered within a care coordination program at a transition consultation center for CSHCN. It also compared the advancement of youth by age group toward graduation criteria.

Intervention Results: The comparison of services for those with diagnoses of autism spectrum disorder, cerebral palsy and Down syndrome were uniformly high in supporting primary care and health care financing. Medicaid waiver assistance was provided more frequently to younger adolescents while older adolescents more commonly received support in all other graduation criteria, including primary and specialty care, healthcare financing and decision-making supports.

Conclusion: Youth served in a transition care coordination program receive a high volume and broad array of services. There are some variations in the types of services by diagnosis and level of support need. Older youth show greater advancement toward graduation criteria. Practice implications: This in-depth chart review provides a valuable description of the activities of care coordinators serving CSHCN enduring transition. It enables development of targeted strategies for building care coordination programming and sets an example for the design of future research studies on this topic.

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): Planning for Transition, Pediatric to Adult Transfer Assistance, Care Coordination, HEALTH_CARE_PROVIDER_PRACTICE

Intervention Description: We identified and treated young adults with type 1 diabetes who had been lost to follow-up during their transfer from pediatric to adult care, comparing their clinical, psychosocial, and health care utilization outcomes to participants receiving continuous care (CC) throughout the transition to adult care. Individuals in their last year of pediatric care (CC group, n = 51) and individuals lost to follow-up in the transfer to adult care ("lapsed care" [LC] group, n = 24) were followed prospectively for 12 months. All participants were provided developmentally tailored diabetes education, case management, and clinical care through a structured transition program.

Intervention Results: At baseline, LC participants reported lapses in care of 11.6 months. Compared with CC participants, they had higher hemoglobin A1C (A1C; p = .005), depressive symptoms (p = .05), incidence of severe hypoglycemia (p = .005), and emergency department visits (p = .004). At 12-month follow-up, CC and LC participants did not differ on the number of diabetes care visits (p = .23), severe hypoglycemia (no events), or emergency department visits (p = .22). Both groups' A1C improved during the study period (CC: p = .03; LC: p = .02). LC participants' depressive symptoms remained elevated (p = .10), and they reported a decline in life satisfaction (p = .007). There was greater loss to follow-up in the LC group (p = .04).

Conclusion: Our study suggests that, for young adults with a history of lapses in care, a structured transition program is effective in lowering A1C, reducing severe hypoglycemia and emergency department utilization, and improving uptake of routine diabetes care. Loss to follow-up and psychosocial concerns remain significant challenges in this population.

Study Design: Prospective cohort

Setting: Hospital-based

Population of Focus: Young people with type 1 diabetes

Data Source: Surveys, A1c readings, medical records

Sample Size: Continuous care = 51; Lapsed care = 24

Age Range: 19-25 years of age

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, 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): HEALTH_CARE_PROVIDER_PRACTICE, Planning for Transition, Pediatric to Adult Transfer Assistance, Care Coordination

Intervention Description: The transition program was designed to provide additional support during transition of care and was introduced 6 months prior to referral to adult diabetes care. The intervention was 18 months long and spanned six clinic visits (three pediatric and three adult). There were also two clinic visits in the 12 months of follow-up, so the total number of study visits was eight. Central to the program were transition coordinators (TCs) at each site who provided a link between pediatric and adult diabetes care. The TCs were Certified Diabetes Educators who provided transitional education and clinical support where appropriate. The role of the TC was to assist participants during the visits in the first 18 months, maintain contact with participants between the visits (by phone, text messages, or e-mail), facilitate support for insulin adjustments and sick day/hypoglycemia management during regular hours, send reminders and help reschedule appointments, and assess needs and facilitate referrals to other services (e.g., psychology, social work, nurse educator, or dietitian). The TCs also provided specific transition-related education and education materials and at the last pediatric visit a bio sketch of the adult endocrinologist to whom the participant had been referred as well as written instructions and maps to navigate adult diabetes centers.

Intervention Results: We randomized 205 participants, 104 to the transition program and 101 to standard care. Clinic attendance was improved in the transition program (mean [SD] number of visits 4.1 [1.1] vs. 3.6 [1.2], P = 0.002), and there was greater satisfaction with care (mean [SD] score 29.0 [2.7] vs. 27.9 [3.4], P = 0.032) and less diabetes-related distress (mean [SD] score 1.9 [0.8] vs. 2.1 [0.8], P = 0.049) reported than in standard care. There was a trend toward improvement in mean HbA1c (8.33% [68 mmol/mol] vs. 8.80% [73 mmol/mol], P = 0.057). During the 12-month follow-up, there was no difference in those failing to attend at least one clinic visit (P = 0.846), and the mean change in HbA1c did not differ between the groups (P = 0.073). At completion of follow-up, the groups did not differ with respect to satisfaction with care or diabetes-related distress and quality of life.

Conclusion: Transition support during this 18-month intervention was associated with increased clinic attendance, improved satisfaction with care, and decreased diabetes-related distress, but these benefits were not sustained 12 months after completion of the intervention.

Study Design: RCT

Setting: Hospitals/Clinics

Population of Focus: Young adults with type 1 diabetes

Sample Size: 205

Age Range: 17-20 years

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): Transition Assistance, Educational Material, PATIENT_CONSUMER

Intervention Description: To examine the critical role that an academic-clinical partnership played in the development and refinement of a family management intervention in the Neonatal Intensive Care Unit (NICU).

Intervention Results: During Council meetings, the clinical-academic nurse, Director of Family-Integrated Care, and Council members identified the need for a family management intervention, and worked together to develop and refine PREEMIE PROGRESS. Mothers found the intervention had numerous strengths, and perceived a benefit knowing they helped future parents.

Conclusion: This work was only possible by leveraging both the university’s technology/research resources and the clinical expertise of the NICU staff and Parent Partnership Council. Co-authored presentations, publications, and grant funding continued this NICU’s legacy in family-centered care and helped shape the clinical-academic nurse’s career.

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

Intervention Components (click on component to see a list of all articles that use that intervention): CLASSROOM_SCHOOL, School-Based Health Centers, Planning for Transition, HEALTH_CARE_PROVIDER_PRACTICE, Pediatric to Adult Transfer Assistance, Care Coordination, Quality Improvement/Practice-Wide Intervention

Intervention Description: This pilot study implemented and assessed the use of a structured HCT process, the Six Core Elements of HCT, in two school-based health centers (SBHCs) in Washington, DC. The pilot study examined the feasibility of incorporating the Six Core Elements into routine care and identified self-care skill gaps among students. Quality improvement methods were used to customize, implement, and measure the Six Core Elements and HCT supports.

Intervention Results: After the pilot, both SBHCs demonstrated improvement in their implementation of the structured HCT process. More than half of the pilot participants reported not knowing how to find their doctor’s phone number and not knowing what a referral is.

Conclusion: These findings indicate the need for incorporating HCT supports into SBHCs to help students build self-care skills necessary for adulthood.

Study Design: Cohort pilot evaluation

Setting: Schools

Population of Focus: High school students

Sample Size: 560

Age Range: Grades 9-12

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

Intervention Description: There is no model for the process of transition of adolescents with inflammatory bowel diseases (IBD) to the adult care protocol. We recently established a transition clinic where 17-year-old to 18-year-old IBD patients are seen by a multidisciplinary team including pediatric and adult gastroenterologists with expertise in IBD treatments, an IBD nurse, and a psychologist. We quantitatively describe this model and its benefits, and correlate demographic and transition parameters to self-efficacy in IBD adolescent patients before and after transition. All adolescent IBD patients enrolled in our transition clinic between January 2013 and December 2015 were included. They completed a self-efficacy questionnaire ('IBD-yourself') before and after the transition. The scores were correlated to demographic, disease, and transition parameters.

Intervention Results: Thirty of the 36 enrolled patients (mean age: 19±1.8 years, range: 17-27) had Crohn's disease. Twenty-seven patients completed the transition protocol, which included an average of 3-4 meetings (range: 2-8) over 6.9±3.5 months. Self-efficacy scores in all domains of the questionnaire were significantly higher after completion of the transition. The weighted average score of the questionnaire's domains was 1.85±0.3 before and 1.41±0.21 after transition (P<0.0001). Age, sex, disease duration, duration of transition, and the number of meetings in the clinic correlated with the questionnaire's scores in the domains of coping with IBD, knowledge of the transition process, and medication use.

Conclusion: A well-planned adolescent IBD transition clinic contributes significantly toward improved self-efficacy in IBD. We recommend its implementation in IBD centers to enable a personalized transition program tailored to the needs of adolescents with IBD in specific domains.

Study Design: Quasi- experimental pre post

Setting: Hospital-based (Pediatric and adult IBD centers in a hospital)

Population of Focus: 36 IBD patients who started the transition process (January 2013-December 2015) in the adolescent transition clinic in the institute/hospital

Data Source: Questionnaires

Sample Size: 36 patients

Age Range: 17-27 years of age (median: 18.5)