Key Points

• No transition interventions for CSHCN with a history of cancer advanced to the analytic set for further analysis.

Eligible Studies

Eight publications described or examined care interventions for transition from pediatric to adult care among individuals with a history of cancer.^28–35 Six did not meet comparator criteria and were not eligible for risk of bias assessment;^30–35 we report these in the brief evidence map in Appendix D. Table 4.3 summarizes the characteristics of the KQ literature set. Two remaining studies were assessed as high risk of bias^{28, 29} and no studies were included in the analytic set. Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.3

Basic characteristics of KQ1 literature set: cancer.

Intervention Research Context

One study was conducted in a large pediatric tertiary center in North America with a predominately female cohort of unknown race/ethnicity,²⁹ while the other took place in a large children’s research hospital.²⁸ One intervention implemented the transition readiness component of the Six Core Elements by examining the role of an interactive transition workbook on transition outcomes. The most recent intervention (2021) implemented a patient navigator program.²⁸ Outcomes focused mainly on participant worry (general and about leaving pediatrics) and transition readiness. No outcomes were collected for patient caregivers or providers.

Key Points

• Evidence was insufficient to draw conclusions about the effect of transition interventions on CSHCN with chronic conditions.

Eligible Studies

Eleven unique transition interventions from 12 publications described or examined care interventions for transition from pediatric to adult medical services among CSHCN with broadly defined chronic conditions.^36–48 Six studies did not meet comparator criteria, were not eligible for risk of bias assessment, and thus excluded from the analytic set.^{36 28–30, 34, 36} The brief evidence map of these studies can be found in Appendix D. Table 4.4 summarizes the characteristics of the KQ literature set. Of the five studies that used comparators, three (from four publications) were assessed as high risk of bias.^{37, 41, 45, 47} Two were assessed as medium risk of bias and included in the analytic set.^{42, 43} Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.4

Basic characteristics of KQ1 literature set: chronic conditions.

Intervention Research Context

All five studies examined interventions conducted at urban tertiary pediatric academic health centers in North America; three in the United States, one in Canada. One was conducted in a high-school-based health center. The U.S.-enrolled populations were majority nonwhite. Three interventions implemented the Six Core Elements using care coordination frameworks. Another intervention evaluated the effects of a Web- and text-messaging tool (with a healthcare team communication portal) for disease management and decision support. The Canadian intervention used a toolkit and online mentor to promote organizational skills, goal setting, and self-management. Outcomes did not focus on health status/disease outcomes, and no outcomes were collected for patient caregivers or providers.

CSHCN Outcomes

Evidence was insufficient to draw conclusions about the effects of interventions for care transitions for CSHCN. Two studies reported a range of outcomes. Table 4.5 provides a summary of findings.

One study enrolled 209 CSHCN; virtually all were African American. The study reported higher scores for patient assessment of quality of care for the healthcare transition care coordination group compared with the control group (3.6 versus 3.3) at 12 months. The intervention group was also more likely to report higher perceptions of care coordination.

One study enrolled 81 CSHCN, 67 percent nonwhite, in MD2Me, a Web- and text-based disease management and skill-training intervention. The intervention group reported improvements in disease management tasks, as measured by the Transition Readiness Assessment Questionnaire, self-efficacy, and patient-initiated communication compared with the control group at 8 months. However, no differences in health outcomes were reported.

Table 4.5

Summary of findings for outcomes: chronic conditions.

Key Points

• Evidence was insufficient to draw conclusions about the effect of transition interventions on CSHCN with CHD.

Eligible Studies

Nine eligible studies examined care interventions for transition from pediatric to adult medical services among CSHCN with CHD.^49–57 Three studies did not meet comparator criteria, were not eligible for risk of bias assessment, and excluded from the analytic set.^{53, 54, 57} The brief evidence map of these studies can be found in Appendix D. Six studies met comparator criteria and examined the effect of transition program on time to transition, transition readiness, health knowledge, quality of life, satisfaction, and various clinical outcomes (Table 4.6).^{49–52, 55, 56} Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.6

Basic characteristics of KQ1 literature set: congenital heart disease.

Intervention Research Context

Of the six included studies, three provided educational interventions aimed at transition readiness, two in Canada and one in Malaysia. One Italian transition clinic used a multidisciplinary approach for standardized educational and support interventions. Outcomes included health perceptions, knowledge, and quality of life. One U.S.-based transition program included coordination between pediatric and adult nurses, physicians, and social workers to improve clinical outcomes and hospitalizations. Another U.S.-based study used a transition planning tool embedded in electronic medical records to improve clinical outcomes.

CSHCN Outcomes

We found insufficient evidence to draw conclusions about the effects of interventions for care transitions for CSHCN with CHD. Table 4.7 provides a summary of findings. At 12 months, authors reported improvement in all outcomes (disease knowledge, transition readiness, and excessive time to transition) in the educational intervention group compared with the control (usual care).⁵⁶ Excess time to transition was reduced in 68 percent of the intervention group vs. 51 percent of the control (p=0.059). Disease knowledge (p<0.001) and transition readiness (p=0.032) were also better in the intervention group than the control, but exact values were not reported. We did not assess outcomes at 18 months due to high risk of attrition bias.

Table 4.7

Summary of findings for outcomes: congenital heart disease.

Key Points

• No transition interventions for CSHCN with cystic fibrosis advanced to the analytic set for further analysis.

Eligible Studies

Twelve unique transition interventions described or examined care interventions for transition from pediatric to adult care among CSHCN with cystic fibrosis.^58–69 Six studies did not meet comparator criteria and were not eligible for risk of bias assessment.^{58–60, 62, 63, 69} The brief evidence map of these studies can be found in Appendix D. Table 4.8 summarizes the characteristics of the KQ literature set. The six remaining studies were assessed as high risk of bias and were excluded from the analytic set.^{61, 64–68} Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.8

Basic characteristics of KQ1 literature set: cystic fibrosis.

Intervention Research Context

Of the six included studies, five examined interventions conducted at cystic fibrosis centers located in the United States,⁶⁴ Australia,⁶⁷ France,⁶⁸ the Netherlands,⁶⁵ and Denmark.⁶⁶ The sixth study was conducted at a children’s hospital in Australia.⁶¹ Two studies implemented a transition guide and notebook and assessed transition readiness and healthcare use.^{64, 65} One study examined the implementation of a transition clinic that employed a transition coordinator, evaluating its effects on healthcare use, clinical outcomes, and self-management related skills.⁶⁵ One study implemented staff training, a parents’ evening, and youth-friendly environment and consultations.⁶⁶ Two studies conducted a preliminary evaluation of a transition program, and examined patient or parent concerns.^{61, 67} The interventions assessed were primarily focused on transition readiness, self-management skills, and clinical outcomes. The studies included several of the Six Core Elements.

Key Points

• Compared with usual care, transition clinics may not improve hemoglobin A1C levels at 12 to 24 months in youth with type 1 diabetes mellitus (low-strength evidence).
• Evidence was insufficient to draw conclusions about the effect of transition interventions on clinic attendance in youth with diabetes mellitus.

Eligible Studies

Fifteen eligible studies examined care interventions for transition from pediatric to adult medical services among individuals with diabetes mellitus.^70–83 Four studies did not meet comparator criteria and were not eligible for risk of bias assessment.^{72–74, 81, 84–87} The brief evidence map of these studies can be found in Appendix D. Table 4.9 summarizes the characteristics of the KQ literature set. Nine studies were assessed as high risk of bias,^{70–75, 77, 78, 80, 88} and two were assessed as medium risk of bias and included in the analytic set.^{76, 79} Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.9

Basic characteristics of KQ1 literature set: diabetes mellitus.

Intervention Research Context

Eleven studies described or examined interventions for healthcare transition from pediatric to adult healthcare for diabetes mellitus. These interventions were conducted at urban tertiary pediatric academic health centers in North America or Australia; four in the United States, one in Canada, and one in Australia. Outcomes included clinic attendance, loss to followup, disengagement, utilization, satisfaction, quality of life, and clinical outcomes.

Diabetes Mellitus Outcomes

Evidence was insufficient to draw conclusions about the effects of interventions for care transitions for diabetes mellitus for clinic attendance. Low-strength evidence showed no effect of interventions on HbA1C. Table 4.10 provides a summary of findings.

One Canadian study enrolled 205 CSHCN; 85 percent of participants of whom were white.⁷⁶ This study reported improved clinic attendance for the intervention group during the 12-month intervention, but no difference at 12 months postintervention. An Australian study reported no difference in clinic attendance for the healthcare transition intervention group during the intervention period, but improved attendance for the intervention group during a 12-month post-intervention followup period.⁸⁹ These studies reported no difference in HbA1C for intervention groups. One study reported no differences between intervention and control groups at study completion for satisfaction, disease-related distress, or quality of life.

Table 4.10

Summary of findings for outcomes: diabetes mellitus.

Key Points

• No transition interventions for CSHCN with HIV advanced to the analytic set for further analysis.

Eligible Studies

Four eligible studies examined care interventions for transition from pediatric to adult medical services among CSHCN with HIV.^90–93 Two studies did not meet comparator criteria, were not eligible for risk of bias assessment, and were excluded from the analytic set.^{91, 92} The brief evidence map of these studies can be found in Appendix D. Two studies met comparator criteria and were assessed as high risk of bias and excluded from the analytic set (Table 4.11).^{90, 93} Appendix D provides evidence tables, and summary risk of bias assessments.

Table 4.11

Basic characteristics of KQ1 literature set: HIV.

Intervention Research Context

Of the two included studies, one was conducted in Italy at a tertiary HIV center and examined a bundle of initiatives run by a multidisciplinary team,⁹⁰ while one U.S. study took place in a university pediatric/adult HIV clinic; most participants were Black. Neither study targeted any core elements. Outcomes focused on disease knowledge, self-esteem, and general health. Neither study collected outcomes for patient caregivers or providers.

Key Points

• No transition interventions for CSHCN with IBD advanced to the analytic set for further analysis.

Eligible Studies

Twelve eligible studies described or examined care interventions for transition from pediatric to adult medical services for CSHCN with IBD.^94–105 Three did not meet comparator criteria and were not eligible for risk of bias assessment.^{94, 98, 105} The brief evidence map of these studies can be found in Appendix D. Nine studies met comparator criteria but were assessed as high risk of bias and excluded from the analytic set.^{95–97, 99–104} Table 4.12 summarizes the characteristics of the KQ literature set. Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.12

Basic characteristics of KQ1 literature set: inflammatory bowel disease.

Intervention Research Context

All nine included studies examined interventions at tertiary IBD care clinics or centers, and all but one were conducted outside of the United States. The interventions primarily targeted one or more components of the Six Core Elements which included of transition readiness, planning, and transfer of care. Outcomes primarily focused on disease-related clinical outcomes healthcare use, and self-management.

Key Points

• No transition interventions for CSHCN with juvenile idiopathic arthritis advanced to the analytic set for further analysis.

Eligible Studies

Seven studies examined transition interventions for CSHCN with individuals with juvenile idiopathic arthritis.^106–112 Two studies did not meet comparator criteria and were not eligible for risk of bias assessment.^{106, 111} The brief evidence map of these studies can be found in Appendix D. Table 4.13 summarizes the characteristics of the KQ literature set. Four studies were assessed as high risk of bias.^108–110 One study was assessed as medium risk of bias.¹⁰⁷ Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.13

Basic characteristics of KQ1 literature set: juvenile idiopathic arthritis.

Intervention Research Context

Of the five included studies, three examined transition program interventions while two looked at transition clinics between 2007 and 2019. All studies were conducted outside of the United States (Belgium, United Kingdom, Denmark, and Finland). Interventions were conducted in various settings including outpatient and rheumatology clinics. All interventions included transition readiness of the Six Core Elements while two also incorporated transition and care policy/guide, and one incorporated both transition planning and transition of care. Selected outcomes primarily focused on perceived health status, medication adherence, illness-related knowledge, quality of life, clinical remission, and satisfaction.

CSHCN Outcomes

No usable outcomes were available from the medium risk of bias study conducted in Denmark.¹⁰⁷

Key Points

• No transition interventions for CSHCN with kidney disease advanced to the analytic set for further analysis.

Eligible Studies

Three studies examined care interventions for transition from pediatric to adult medical services among CSHCN with kidney disease.^113–115 One study did not meet comparator criteria and was not eligible for risk of bias assessment.¹¹⁴ The brief evidence map of this study can be found in Appendix D. Table 4.14 summarizes the characteristics of the literature set. Two studies were assessed as high risk of bias and excluded from the analytic set. Appendix D provides evidence tables, summary of risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.14

Basic characteristics of KQ1 literature set: kidney disease.

Intervention Research Context

Of the two included studies, one examined a young adult clinic while the other examined a transition model. Both were conducted between 2015 and 2019 in renal clinics, one in the United States and the other in Australia. Both interventions included components of the Six Core Elements which include transition readiness, while one study also incorporated transition planning. Outcomes primarily focused on quality of life, medication adherence, and self-management.

Key Points

• No transition interventions for CSHCN with neurologic disorders advanced to the analytic set for further analysis.

Eligible Studies

Three eligible studies examined care interventions for CSHCN with neurological disorders including epilepsy.^116–118 All studies were assessed as high risk of bias and excluded from the analytic set. Table 4.15 summarizes the characteristics of the KQ literature set. Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.15

Basic characteristics of KQ1 literature set: neurologic disorders.

Intervention Research Context

Of the three included studies, two examined transition interventions for CSHCN with neurological disorders, and one used a longitudinal design to examine a pilot pediatric cognitive remediation summer program to prepare for transition of care. This study reported CSHCN neuropsychological outcomes, and perception and behaviors among parents of CSHCN. One study examined an epilepsy transition clinic staffed with a multidisciplinary team. This study reported CSHCN outcomes of diagnosis, treatment and therapeutic consequences, and seizure remission.

Key Points

• No transition interventions for CSHCN with rheumatic conditions advanced to the analytic set for further analysis.

Eligible Studies

Four studies examined transition interventions for CSHCN with rheumatic diseases.^119–122 Three studies did not meet comparator criteria and were not eligible for risk of bias assessment.^120–122 The brief evidence map of these studies can be found in Appendix D. Table 4.16 summarizes the characteristics of the literature set.¹¹⁹ One study was assessed as high risk of bias and excluded from the analytic set. Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.16

Basic characteristics of KQ1 literature set: rheumatic conditions.

Intervention Research Context

This 2015 study examined a transition program¹¹⁹ in a U.S. rheumatology clinic. The intervention included components of the Six Core Elements which include transition readiness, transition planning, and transfer completion. The study focused on patient satisfaction as the outcome.

Key Points

• No transition interventions for CSHCN with sickle cell disease advanced to the analytic set for further analysis.

Eligible Studies

Seventeen studies examined transition interventions for CSHCN with sickle cell disease.^123–139 Eight studies did not meet comparator criteria and were not eligible for risk of bias assessment;^{124, 126–129, 131, 134, 135} the brief evidence map of these studies can be found in Appendix D. Table 4.17 summarizes the characteristics of the KQ literature set. Nine studies were assessed as high risk of bias and were excluded from the analytic set.^{123, 125, 130, 132, 133, 136–139} Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.17

Basic characteristics of KQ1 literature set: sickle cell disease.

Intervention Research Context

Of the nine included studies, three examined transition programs, two looked at a transition program with a transition navigator, one examined a music therapy intervention, one used an adolescent autonomy checklist between 2011 and 2019, one used educational videos, and one used a student mentorship approach. Eight studies were conducted in the United States and one in Canada. Interventions took place in various settings (hematology clinic, sickle cell disease clinics, medical home and hemoglobinopathy care center). All interventions included components of the Six Core Elements (mainly including transition readiness). One study incorporated all Six Core Elements of healthcare transition in the intervention. Outcomes primarily focused on transition readiness, knowledge, self-efficacy, loss to followup, hospitalizations, and medication adherence.

Key Points

• Evidence was insufficient to draw conclusions about the effect of transition interventions on CSHCN with a solid organ transplant.

Eligible Studies

Seventeen studies examined care interventions for transition from pediatric to adult medical services among individuals with a solid organ transplant.^140–156 Two studies did not meet comparator criteria and were not eligible for risk of bias assessment.^{141, 148} The brief evidence map of these studies can be found in Appendix D. Table 4.18 summarizes the characteristics of the literature set. Fourteen studies were assessed as high risk of bias; just one was low risk of bias and included in the analytic set.¹⁴⁶ Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.18

Basic characteristics of KQ1 literature set: solid organ transplant.

Intervention Research Context

Of the 15 included studies, six examined transition program interventions, three looked at transition clinics, two looked at transition models, two looked at a transition coordinator, and the final two looked at a young adult clinic and a transfer clinic. All studies were conducted between 2006 and 2019, with six taking place in the United States and the other nine in Finland, Germany, Canada, United Kingdom, and Switzerland. Interventions were conducted in a transition outpatient clinic, hospital clinic, outpatient clinic, heart transplant center and renal outpatient clinic. All interventions included components of the Six Core Elements which include transition readiness while three studies incorporated elements of transition planning, transfer of care, and transfer completion. Only one study used all Six Core Elements in the development of their program. Outcomes primarily focused on transition readiness, quality of life, clinical outcomes, knowledge, medication adherence, and satisfaction.

CSHCN Outcomes

Evidence was insufficient to draw conclusions about the effects of interventions for care transitions for CSHCN with heart transplants. One U.S. study reported on heart-transplant-related knowledge, transition readiness (self-advocacy), transition readiness (self-management), social support, adherence to medical regimen, retention, and efficacy for heart transplant recipients, of whom more than 75 percent were white.¹⁴⁶ Table 4.19 provides a summary of findings. The study reported increased transition readiness (self-management) in the control group compared to the intervention (p=0.007) over time. No difference was found in all other outcomes. The study reported patient retention of 86 percent in the intervention group and 91 percent in the control group.

Table 4.19

Summary of findings for outcomes: solid organ transplant.

Key Points

• No transition interventions for CSHCN with spina bifida advanced to the analytic set for further analysis.

Eligible Studies

Seven studies examined transition interventions for CSHCN with spina bifida.^{146, 157–163} Four did not meet comparator criteria and were not eligible for risk of bias assessment.^{157, 159–161} The brief evidence map of these studies can be found in Appendix D. Table 4.20 summarizes the characteristics of the KQ literature set. Two studies were assessed as high risk of bias.^{162, 163} One study was assessed as medium risk of bias and included in the analytic set.¹⁵⁸ Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.20

Basic characteristics of KQ1 literature set: spina bifida.

Intervention Research Context

Of the three included studies, one examined a transition care coordination program, one examined a transition program, and the third looked at a training program for transition preparation. All were conducted between 2010 and 2017 in the United States, two in an outpatient clinic and one in a spina bifida clinic. Of note, participants in one study were almost 90 percent Latinx. All interventions included components of the Six Core Elements which include transition readiness and transfer of care. Outcomes primarily included transition readiness, role mastery, well-being, and self-care.

CSHCN Outcomes

Evidence was insufficient to draw conclusions about the effects of interventions for care transitions for CSHCN with spina bifida. One study reported on subjective well-being, role mastery, and self-care. Table 4.21 provides a summary of findings.¹⁵⁸ No benefit was found across all outcome measures.

Table 4.21

Summary of findings for outcomes: spina bifida.

Key Points

• No transition interventions for CSHCN with urological conditions advanced to the analytic set for further analysis.

Eligible Studies

Two unique publications described a transition intervention.^{164, 165} These studies did not meet comparator criteria; we report these in the brief evidence map in Appendix D.

Key Points

• Evidence was insufficient to draw conclusions about the effect of transition interventions on CSHCN with various conditions.
• No other conditions (such as asthma, cerebral palsy, or muscular dystrophy) advanced to the analytic set for further analysis.

Eligible Studies

Sixteen studies examined transition interventions for CSHCN with various conditions.^{84–87, 166–177} Six studies did not meet comparator criteria and were not eligible for risk of bias assessment.^{84–87, 176, 177} The brief evidence map of these studies can be found in Appendix D. Table 4.22 summarizes the characteristics of the KQ literature set. Nine studies were assessed as high risk of bias and excluded from the analytic set.^167–175 One study was assessed as medium risk of bias and included in the analytic set.¹³² Appendix D provides evidence tables, summary risk of bias assessments, and strength of evidence for key comparisons and outcomes.

Table 4.22

Basic characteristics of KQ1 literature set: other conditions.

Intervention Research Context

The included studies examined various interventions including a transition outpatient clinic, Web-based interactive application, HEMO-milestones tool, transition workshops, transition program, young persons’ clinic, educational program, and online self-management program. All studies were conducted between 2013 and 2021, with two taking place in the United States and the rest in the Netherlands, Germany, Canada, United Kingdom, Portugal, and Germany. Settings included outpatient clinics, immunology clinic, hemophilia clinic, long-term ventilation clinic, and hospital. All interventions included transition readiness from the Six Core Elements; two studies also incorporated transition planning. Outcomes primarily focused on transition readiness, transition competence, knowledge, quality of life, self-efficacy, and satisfaction.

CSHCN Outcomes

Evidence was insufficient to draw conclusions about the effects of interventions for care transitions for CSHCN with hemophilia. One Canadian study reported on disease-specific knowledge, self-efficacy, self-management, satisfaction, and retention.¹⁶⁶ Table 4.23 provides a summary of findings. The study reported increased disease-specific knowledge in the intervention group compared to control (p=0.01). No difference was found in self-efficacy, self-management, or retention across groups; 91 percent of participants reported satisfaction with the program. No description of the participants was provided beyond whether they spoke English or French.

Table 4.23

Summary of findings for outcomes: other conditions.