Find Established Evidence

NPM: 12: Transition
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.
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))
Target Audience: 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

NPM: 12: Transition
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.
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)
Target Audience: 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

NPM: 12: Transition
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.
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)
Target Audience: 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

NPM: 12: Transition
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.
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)
Target Audience: 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

NPM: 12: Transition
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.
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)
Target Audience: 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

NPM: 12: Transition
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.
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)
Target Audience: 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)

NPM: 12: Transition
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.
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)
Target Audience: 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

NPM: 12: Transition
Intervention Components (click on component to see a list of all articles that use that intervention): PROVIDER/PRACTICE, Planning for Transition, YOUTH, Peer-led Mentoring/Support Counseling, Nurse/Nurse Practitioner, PARENT/FAMILY, Counseling (Parent/Family)
Intervention Description: The aim of this study was to assess the impact of a transition clinic model on adolescent congenital heart disease (CHD) patients' health perception outcomes. The transition clinic model consists of multidisciplinary standardized interventions to educate and support CHD patients and represents a key element in the adequate delivery of care to these individuals during their transition from childhood to adulthood. Currently, empirical data regarding the impact of transition clinic models on the improvement of health perceptions in CHD adolescent patients are lacking. A quasi-experimental design was employed. Quality of life, satisfaction, health perceptions and knowledge were assessed at the time of enrolment (T0) and a year after enrolment (T1), respectively. During the follow-up period, the patients enrolled (aged 11-18 years) were involved in the CHD-specific transition clinic model (CHD-TC).
Conclusion: The CHD-TC seems to provide high-quality care to the patient by way of a multidisciplinary team. The results of the present study are encouraging and confirm the need to create multidisciplinary standardized interventions in order to educate and support the delivery of care for CHD adolescents and their families.
Study Design: Quasi- experimental, non-randomized, using a pre/ post-intervention approach
Setting: Clinic-based (Outpatient clinic of a facility for CHD)
Target Audience: Adolescents with congenital heart disease (CHD)
Data Source: Self-report questionnaires and medical records
Sample Size: 224
Age Range: 11-18 years of age

NPM: 12: Transition
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.
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)
Target Audience: Adolescent patients with IBD
Data Source: Online questionnaires, consultation with clinicians
Sample Size: 112 total; 59 attended transition clinics
Age Range: 18-21 years

NPM: 12: Transition
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.
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)
Target Audience: 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)

NPM: 12: Transition
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.
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)
Target Audience: 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

NPM: 12: Transition
Intervention Components (click on component to see a list of all articles that use that intervention): Planning for Transition, PROVIDER/PRACTICE, EMR Reminder
Intervention Description: We developed a Transition EHR activity (TEA) to track patients through a standardized process where transition readiness is annually assessed and services distributed based on need. The process assesses transition skills starting at age 12 years and sets goals through shared decision-making, delivers resources according to need, reviews patients' personal medical histories, and documents healthcare transfer to adult gastroenterology. We piloted TEA among patients with inflammatory bowel disease (IBD) ages ≥12 years. Distribution to patients was measured and tolerability assessed via patient self-report evaluations.
Conclusion: TEA standardized delivery of resources among pediatric IBD patients and was well received and friendly to clinical workflow.
Study Design: Cohort pilot
Setting: Clinic-based (Pediatric gastroenterology clinic)
Target Audience: Adolescents with IBD
Data Source: Surveys; self-assessment
Sample Size: 53
Age Range: 12-18 years (median age 16)

NPM: 12: Transition
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.
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)
Target Audience: 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

NPM: 12: Transition
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.
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
Target Audience: 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)

NPM: 12: Transition
Intervention Components (click on component to see a list of all articles that use that intervention): Planning for Transition, PROVIDER/PRACTICE
Intervention Description: To implement and appraise a new model of care in terms of: patient experience, knowledge of epilepsy, readiness for transition and emotional and behavioural support in a new purpose-built facility for adolescents and young adults. The new model of care included: upskilling of neurology staff in adolescent engagement and provision of group education sessions on epilepsy and mental health (MH), along with MH support, in a new purpose-built adolescent facility. Parameters examined pre- and post-attendance at the new clinic included: adolescent experience of service delivery, transition readiness, emotional and behavioural well-being, epilepsy knowledge and medication adherence.
Conclusion: This paper documents what is important to young people with epilepsy regarding service delivery. The new adolescent service was well received. Based on feedback from adolescents and parents relating to the service, and the suboptimal uptake of MH supports, the model of care has been revised to reduce attendance burden on families and improve patient experience.
Study Design: Cohort pilot evaluation
Setting: Clinic-based (Adolescent clinic)
Target Audience: Current epilepsy patients at Sydney Children’s Hospital Randwick (SCH) aged 12-17 years (and their parent/ carer), who were on anti-epileptic medications and of mild intellectual disability or above
Data Source: Questionnaires, surveys
Sample Size: 45
Age Range: 12-17 years (mean age 15.7 years)

NPM: 12: 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.
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
Target Audience: 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

NPM: 12: 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, 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.
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)
Target Audience: 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

NPM: 12: Transition
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.
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
Target Audience: 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

NPM: 12: Transition
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.
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
Target Audience: 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

NPM: 12: Transition
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.
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
Target Audience: 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