Transitional Care Interventions forYouth With Disabilities: ASystematic ReviewBen B. Levy, BSc,a Jessica Z. Song,a Dorothy Luong, MSc,a Laure Perrier, PhD,b Mark T. Bayley, MD, FRCPC,a,c,f

Gail Andrew, MDCM, FRCPC,j Kelly Arbour-Nicitopoulos, PhD,e,k Brian Chan, PhD,a,c Cynthia J. Curran, BHA, MA Leadership, CHE,k

Gina Dimitropoulos, PhD, RSW,l Laura Hartman, PhD, MScOT,k Lennox Huang, MD, FAAP, CPE,g,m Monika Kastner, PhD,c,h,n

Shauna Kingsnorth, PhD,d,k Anna McCormick, MD, FRCPC, PhD,o,p Michelle Nelson, PhD,c,q David Nicholas, PhD, RSW,l

Melanie Penner, MD, FRCPC,c,g,k Laura Thompson, MScOT,k Alene Toulany, MD, FRCPC,g,m Amanda Woo, MScPT, MHScHA, CHE,a

Joanne Zee, BScPT, MSc, MCPA,a,c Sarah E.P. Munce, PhDa,c,i

abstractCONTEXT: Transition from the pediatric to the adult health care system is a complex process thatshould include medical, psychosocial, educational, recreational, and vocational considerations.

OBJECTIVE: In this systematic review, we aim to synthesize the evidence on transitional careinterventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults withchildhood-onset disabilities, including neurodevelopmental disorders.

DATA SOURCES: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index toNursing and Allied Health Literature) were searched.

STUDY SELECTION: In the included studies, researchers examined TCIs for adolescents and youngadults (12–24 years of age) with childhood-onset disabilities. Studies were experimental,quasi-experimental, and observational studies published in the last 26 years.

DATA EXTRACTION: Two reviewers independently completed study screening, data extraction, andrisk-of-bias assessment.

RESULTS: Fifty-two studies were included. Five studies reported on QoL, but statisticallysignificant improvements were noted in only 1 of these studies. Significant improvementswere also found in secondary outcomes including disability-related knowledge andtransitional readiness. TCIs targeted patients, families and/or caregivers, and health careproviders and exhibited great heterogeneity in their characteristics and components.

LIMITATIONS: Inconsistent reporting on interventions between studies hindered synthesis of therelationships between specific intervention characteristics and outcomes.

CONCLUSIONS: Although there is limited evidence on the impact of TCIs on the QoL for youth withchildhood-onset disabilities, there is indication that they can be effective in improving patientand provider outcomes. The initiation of transition-focused care at an early age maycontribute to improved long-term health outcomes in this population.

aToronto Rehabilitation Institute, Toronto, Ontario, Canada; bUniversity of Toronto Libraries, and cInstitute of Health Policy, Management and Evaluation, and dRehabilitation Sciences Institute,and eFaculty of Kinesiology and Physical Education, and fDivision of Physical Medicine, and gDepartments of Paediatrics, hFamily and Community Medicine, and iOccupational Science andOccupational Therapy, University of Toronto, Toronto, Ontario, Canada; jDepartment of Pediatrics, University of Alberta, Edmonton, Alberta, Canada; kHolland Bloorview Kids RehabilitationHospital, Toronto, Ontario, Canada; lFaculty of Social Work, University of Calgary, Calgary, Alberta, Canada; mThe Hospital for Sick Children, Toronto, Ontario, Canada; nNorth York GeneralHospital, Toronto, Ontario, Canada; oDepartment of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada; pChildren’s Hospital of Eastern Ontario, Ottawa, Ontario, Canada; and qSinaiHealth System, Toronto, Ontario, Canada

To cite: Levy BB, Song JZ, Luong D, et al. Transitional Care Interventions for Youth With Disabilities: A Systematic Review. Pediatrics. 2020;146(5):e20200187

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Improvements in medical treatmenthave resulted in as many as 50% to90% of children with congenital oracquired physical disabilities reachingadolescence and adulthood.1–6 Thereis a corresponding increase in thenumber of youth and young adultswith childhood-onset disabilities,including neurologic disorders,requiring transition to age-appropriate and developmentallyappropriate adult health careservices.

Transition from the pediatric to adulthealth care system is a multifacetedprocess.7,8 Poor continuity of care canlead to poor health outcomes anddecreased opportunities toparticipate in the community.6,9,10

Without continuous and appropriateservices, health concerns may remainundetected, putting transition-agedyouth at further risk of developingpreventable secondary physical andmental health complications andcomorbidities.11 This phenomenoncan lead to increased use of healthcare services and an inappropriatedependence on emergency healthservices.12–14 Population data haveindicated that young adults betweenthe ages of 19.0 and 26.9 withacquired brain injuries, cerebralpalsy, and spina bifida visitedphysicians 11.5 times per year andwere admitted to the hospital onceevery 6.8 years.15 These resultssuggest that adolescents and youngadults with complex disablingconditions from childhood haveongoing health issues that requirefrequent service; their hospitaladmission rate is 9 times that of thegeneral population and few havea primary care physician.15 Thus,a growing need to implement fiscallysustainable approaches to transitionhas recently been identified in theliterature, with cost-effectivetransition expected to have a positiveand far-reaching impact on the healthcare system.16

The transition process can be furthercomplicated by the risk of additional

psychosocial difficulties (eg, anxietydisorders, depression).17–25 Inaddition, finding appropriatespecialist adult care providers andresources is challenging becausemany adult programs have narroweligibility criteria that are focused onadults with recent-onsetdisabilities.12,26 There is alsoa general lack of training related toaging with a childhood-onsetdisability among adult health careproviders.4,27,28 This results in a gapin appropriate care and a growingpopulation of transition-aged youthwith disabilities who are eithersignificantly underserviced or receiveno care in the adult health caresystem.7

Despite the importance of ensuringthe continuity of pediatric and adultcare and the significant detrimentalhealth outcomes related to poortransition, there is limited evidenceon the most effective transitional careinterventions (TCIs) for adolescentsand young adults with childhood-onset disabilities. In a systematicreview published by The CochraneCollaboration in 2016, researchersexamined transition interventions foradolescents with a wide range ofchronic health conditions but did notfocus on disabilities, and the reviewwas limited to randomized controlledtrials (RCTs), which contrasts withthe current review.29 Moreover,a guideline for transition frompediatric to adult health care foryouth with special health care needswas developed in 2016.30 However, italso was not focused on adolescentsand young adults with childhood-onset disabilities (ie, key words onlyincluded “chronic health conditions”and “chronic illness”) and the authorsused a limited range of researchdesigns and publication years.30

Other research has described thedifficulty in drawing conclusions onTCIs due to variability in clinicaldiagnoses.31–36 Although chronichealth conditions can be physicallydisabling, transition preparation for

youth with disabilities may havedifferent requirements altogether.37

In the current systematic review, wedirectly address the describedevidence gaps related to TCIs foradolescents and young adults withchildhood-onset neurologicdisabilities (eg, acquired brain injury,cerebral palsy, spina bifida), includingneurodevelopmental disorders (eg,attention-deficit/hyperactivitydisorder, autism spectrum disorder,communication disorders, intellectualdisabilities, motor disorders, specificlearning disorders).38 We maintaina focus on disabilities by excludingnonneurologic chronic conditions andinclude youth between 12 and24 years of age as well as a range ofstudy designs, further addressing thegaps identified in previousstudies.29–37,39–45 We additionallytarget those interventions that mayimprove quality of life (QoL) asdefined by the World HealthOrganization, consistent with therecent recommendations of theInternational and InterdisciplinaryHealth Care Transition ResearchConsortium.46,47 Our specific researchobjective of this systematic review isto determine the impact of TCIs onQoL and other transitional careoutcomes in youth with childhood-onset disabilities.

METHODS

This systematic review wasregistered with the InternationalProspective Register of SystematicReviews (CRD42019137773) anddrafted in accordance with thePreferred Reporting Items forSystematic Reviews and Meta-Analyses statement.48

Eligibility Criteria

Inclusion criteria for the currentreview comprised (1) exposure toa TCI; (2) participants aged between12 and 24 years and with childhood-onset neurologic disabilities,including neurodevelopmentaldisorders; (3) evaluation of QoL

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(primary outcome) and/ortransitional readiness, satisfaction,treatment adherence, disability-related knowledge, self-advocacy andmanagement skills, improveddocumentation of transitional issues,unanticipated or adverse outcomes,and health care resource use and costdata (secondary outcomes); (4)experimental, quasi-experimental, orobservational study type; (5) English-language publication; and (6)publication after 1993, when thetransitional care literature emerged.49

Exclusion criteria comprised (1)participants with nonneurologicchronic conditions (eg, type 1diabetes, asthma, cancer,inflammatory bowel disease, juvenileidiopathic arthritis), and (2)conference abstracts or proceedings.

TCIs included educational andtraining interventions delivered tohealth care providers, the adolescentsor young adults, their families, ora combination of these stakeholders.They also included structural changes(eg, developing clinics) or changes toprofessional roles. Because of theneed to examine TCIs at as early as12 years of age, eligible studiesincluded participants in a broaderrange than the 15- to 24-year rangeused by the United NationsEducational, Scientific, and CulturalOrganization in their definition ofyouth.45,50

Search Strategy and InformationSources

Literature search strategies weredeveloped by using subject headingsand text words related to transitionalcare for adolescents and young adultswith childhood-onset disabilities.Studies were identified by searchingMedline, Embase, PsycINFO, andCumulative Index to Nursing andAllied Health Literature (EBSCOhost).The online content of theInternational Journal of IntegratedCare published from January 1993 toApril through June of 2019 was alsoreviewed for relevant articles

published online only. The searchstrategy was designed and conductedby an experienced librarian (L.P.)with input from the investigators. Thesearch was completed on May30, 2019.

Search terms for TCIs were derivedfrom the previously describedsystematic review on TCIs.29 Searchterms for childhood-onset disabilities,including neurodevelopmentaldisorders, were derived froma combination of search terms froma previous systematic review onvocational interventions for youngadults with childhood-onsetdisabilities,51 the Diagnostic andStatistical Manual of Mental Disorders,Fifth Edition,38 the Diagnostic andStatistical Manual of Mental Disorders,Fourth Edition,52 and a Cochranesystematic review onneurodevelopmental disorders.53 Thesearch strategy for Medline can befound in the SupplementalInformation. Additional articles wereidentified by scanning the referencelists of included studies. Experts inthe field of disability and transitionalcare, including members of theresearch team (M.T.B., M.P., and A.T.)were consulted to ensure that allrelevant data were obtained.

Study Selection and Data Abstraction

Two reviewers (B.B.L. and J.Z.S.)performed title and abstractscreening (ie, level 1 screening)independently. To determine finalinclusion (ie, level 2 screening), thefull texts of potentially relevantarticles were subsequently acquiredand screened (also independently andin duplicate). Reviewer conflicts at allstages of the review were resolved bya third reviewer experienced in thearea of research (S.E.P.M.) or by usingdiscussion to reach consensus.

Data abstracted from publicationsincluded study characteristics,participant characteristics, TCIcharacteristics, and outcome results.Data abstraction on the TCIs wasinformed by the Template for

Intervention Description andReplication (TIDieR).54

Risk-of-Bias Assessment

Two reviewers (B.B.L. and J.Z.S.)independently assessed the risk ofbias of included studies. The version2 of the Cochrane risk-of-bias tool forrandomized trials (RoB 2) was usedto appraise RCTs.55 To appraisenonrandomized and observationalstudies, the Risk Of Bias in Non-randomized Studies - of Interventions(ROBINS-I) tool was applied.56 Foreach included study, reviewersevaluated individual domains withinthe respective tool used and assignedan overall risk-of-bias judgement.

RESULTS

Study Selection

The literature search identified13 787 records. Fifty-two studiesremained for inclusion in thenarrative summary. The systematicreview process is outlined by usinga Preferred Reporting Items forSystematic Reviews and Meta-Analyses flow diagram in Fig 1.

Study Characteristics

Publication years of the includedstudies ranged between 1999 and2019. Study types includedprospective cohort (n = 23), cross-sectional (n = 15), RCT (n = 9), andquasi-experimental studies (n = 5).Recruitment settings included(specialized) clinics, the community,health care centers, hospitals, highschools and school districts,community colleges, and universities.Authors of included studies reportedon a range of patient and provideroutcomes from the perspective(s) ofthe patient, his or her family, and/orhealth care providers. In studies inwhich authors examined patientoutcomes, patients’ mean ages rangedfrom 14.8 to 26.8 years. Whereas themajority of studies (63%) whichspecified the percentage of femaleparticipants had ,50% female

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participants, one study on autismspectrum disorder used 93% femaleparticipants, which is inconsistentwith this disorder’s higher prevalencein male patients.57 Study sample sizesranged from 8 to 1429 participants.

Conditions investigated includedacquired brain injury, autismspectrum disorder, Aspergersyndrome, Angelman syndrome,blindness, epilepsy, Down syndrome,hearing impairment, intellectualdisability, neurodegenerative disease,neuromuscular disorders,osteogenesis imperfecta, spina bifida,and traumatic brain injury. The maincharacteristics of each included studyare reported in Supplemental Table 1.

Intervention Characteristics

TCIs in the included studies targetedpatients, caregivers, and health careproviders. Patient- and caregiver-

targeted interventions generallyaimed to enhance the transitionalreadiness, disability-relatedknowledge, and self-advocacy andmanagement skills of patients and/ortheir caregivers. This included the useof guided transition appointments atspecialized clinics58–65; creation ofcurricula, informational materials,and/or health care informationtemplates45,57,66–76; development ofgoals or of a specific transitionplan39,77–85; and practicalinterventions on successfulcommunity living, includingemployment.86–91 Some interventionscombined several of theaforementioned approaches.92–96

Provider-targeted interventionssought to increase health careproviders’ competence in providingeffective transitional care by buildingtheir confidence, interest, andsensitivity and to enhance

workflow.57,97 These interventionsalso aimed to enhance disability-related knowledge. Of the final 52interventions, 33 were categorized astransition process interventions (ie,self-management programs andresources for community living), and19 were categorized as act of transferinterventions (ie, occurring in andaround clinics).

In the majority of studies (65%),authors cited, at minimum, onetheory or theoretical foundation thatinformed the development and/oruse of the intervention used. Suchframeworks included models for theconceptualization, design, and/orimplementation of theintervention,79,88,98 support from theliterature for decisions regarding thecurriculum administered toparticipants,86 and the use of relevantconcepts in psychology (eg, socialcognitive theory).57,66 The TCIs usedin each of the included studies aresummarized in Supplemental Table 2by using the TIDieR.

Impact of TCIs on Patient QoL(Primary Outcome)

QoL data were reported in 5studies.58,70,73,80,99 The outcome wasassessed by using a Likert-type scale(ie, nonvalidated, self-reportedratings), the DISABKIDS condition-generic module questionnaire,100 theSan Martín Scale for QoL,101 thePersonal Wellbeing Index–SchoolChildren,102 and the QoLQuestionnaire, abridged version.73

Significant improvements inpostintervention QoL were noted onlyin a single study of 18 participantswhose disabilities included autismspectrum disorder, hydrocephalus,Down syndrome, and intellectualdisabilities. These improvementsapplied to subscales of the QoLmeasure only, rather than overallQoL.80 Compared with the controlgroup, significant improvements forthe behavioral intervention group inthe study were observed in thematerial well-being and personal

FIGURE 1Identified studies from the literature search and screening process. Adapted from Moher D, LiberatiA, Tetzlaff J, Altman DG; PRISMA Group. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA statement. BMJ. 2009;339:334.

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development subscales of the SanMartín Scale for QoL (P , .05).80 Theoverall QoL in this study increasedfrom 230.9 (SD = 24.6) to 259.5 (SD =17.5) from preintervention topostintervention; however, this scoredropped to 204.0 (SD = 43.0) 6 weeksafter completion of theintervention.80 Cramm et al,99

Hatfield et al,70 and Nadig et al73 didnot find any significant changes inQoL after participation in TCIs.However, Cramm et al99 did notesignificant relationships betweensatisfaction with transitional carepreintervention and emotional andphysical QoL postintervention (P #

.05) and between satisfaction withtransitional care postintervention andemotional, physical, and social QoLpostintervention (P # .001). In thestudy by Aguilera et al,58 the majorityof study participants (70%) reportedtheir QoL to be “excellent” or “verygood” after participating in theintervention. Because of infrequentreporting of concurrent intellectualdisability, we were unable to drawconclusions between the presence ofintellectual disability and outcomes.

Impact of TCIs on Patient SecondaryOutcomes

Of the aforementioned secondaryoutcomes, the highest proportion ofpatient-focused studies reported onself-advocacy and management skills(n = 19), satisfaction (n = 18), andtransitional readiness (n = 15). Inseveral patient-focused studies,authors also reported on disability-related knowledge (n = 4),documentation of transitional issues(n = 1), and health care resource use(n = 2).

Of the studies which reported on self-advocacy and management skills, themajority (58%) found statisticallysignificant improvements after theadministration of a TCI. Significantimprovements in patient satisfactionwere observed in only 5 of 18 studies,but in most studies that did not reachstatistical significance for this

outcome, authors still noted increasesin patient satisfaction after theintervention. In only 4 of 15 studies,authors reported statisticallysignificant improvements intransitional readinesspostintervention as measured byinstruments such as the RotterdamTransition Profile and Mind the Gapscale.45,90,103,104 However, similar tothe patient satisfaction outcome, inseveral studies, authors reportedimprovements in transitionalreadiness but did not includestatistical analysis of these findings.

Statistically significant improvementsin disability-related knowledge werefound in all 4 studies that reported onthis outcome. In the study thatreported on documentation oftransitional issues for patients,a significant improvement in thedocumentation of goals was shownpostintervention.95 In 2 studies,authors examined health careresource use, but changes in thisoutcome (eg, additional costs, costsavings) were not determinedbecause of an absence ofcomparators.58,105 Patient-relatedsecondary outcome data are detailedin Supplemental Table 3 for 46studies. Including both the primaryand secondary outcomes of thecurrent review, 12 studies in totalused parent-proxy reports. Caregiver-related outcome data are detailed inSupplemental Table 4 for 6 studies.

Impact of TCIs on Health CareProvider Outcomes

Studies reported on self-advocacy andmanagement skills (n = 1),satisfaction (n = 3), and transitionalreadiness (n = 3) outcomes forproviders of interventions. Studiesalso reported on disability-relatedknowledge (n = 2) anddocumentation of transitional issues(n = 1), both as provider-specificoutcomes. Provider-related outcomedata are outlined in SupplementalTable 5 for 7 studies.

Risk-of-Bias Assessment

Of the overall study assessmentsconducted by using the ROBINS-I tool(n = 43), the majority of studies(53%) were judged to have a low riskof bias, 40% were judged to havea moderate risk of bias, and 7% werejudged to have a serious risk of bias.Nine RCTs were assessed by usingRoB 2. Two of these studies receiveda low overall risk-of-bias rating,73,76 6received a “some concerns”rating,39,57,74,77,95,106 and 1 receiveda high overall risk-of-bias rating.82

Risk-of-bias data are summarized inSupplemental Tables 6 and 7.

DISCUSSION

Our objective of this systematicreview was to evaluate theeffectiveness of TCIs on the QoL andtransitional care outcomes ofadolescents and young adults withchildhood-onset disabilities. Includedstudies (n = 52) reported on a broadrange of disabilities includingacquired brain injury, cerebral palsy,and spina bifida and generallyobserved improvements in QoL,disability-related knowledge,documentation of transitional issues,satisfaction, self-advocacy andmanagement skills, and transitionalreadiness. However, evidence on theprimary outcome of the currentreview, QoL, was limited to 5 studiesonly. Of these studies, only 1 reportedsignificant improvements in QoL andonly in specific subscales of theoutcome measure.80 Because QoL ishighly important to consider in theevaluation of TCIs,46 its incorporationas a measured outcome in futurestudies is warranted given ourresults. Careful conceptualconsideration of QoL and its relatedoutcomes is also advised becausethere may be immediate outcomesassociated with transitional care thatelicit demonstrable QoL gains;however, more distal QoL outcomesmay be elicited over time (becausetransitional care may reflect youth

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adjustment and ultimate engagementin ongoing care). The maintenance ofQoL throughout the transitionprocess may also be a positive resultgiven the multifactorial nature of QoL,the large number of existing outcomemeasures, and the differing foci ofthese measures. Elucidating theimpacts of interventions on specificQoL dimensions and developing morefocused goals that account for factorssuch as aging caregivers andfunctional decline may lead to morefeasible recommendations for thelong term. Empirical and conceptualdevelopments of the link betweentransitional care and QoL outcomesare encouraged, as are measures withspecific applicability to notions oftransitional care.

Statistically and clinically significantoutcomes were not observed at thefollow-up time point(s) for severalstudies (ie, there was a decline inmeasured outcome[s] between thecompletion of the intervention andthe follow-up period[s]). Hall80

reported significant improvements inthe self-determination, material well-being, personal development, socialinclusion, and interpersonalrelationships subscales of the QoLmeasure immediately afterintervention completion, yet themajority (60%) of theseimprovements lost statisticalsignificance at the final post-test afteronly 6 weeks. This pattern is alsoreflected in the study by Healy andRigby,89 as decreases in compositeperformance scores for transitionalreadiness between the end of theprogram and follow-up (4 monthslater) were noted in 60% ofparticipants. These declines inoutcomes within the relatively shortperiods between interventioncompletion and follow-up suggestthat methods of increasing the long-term effectiveness of transitional careshould be investigated in futurestudies and prioritized for futureinterventions. Similarly, in a recentreview of systematic reviews on

youth-focused transitioninterventions, Hart et al107 found thatonly 14 of 71 studies were focused onthe phase of transition that occursafter transfer to adult care. This gapin the literature is underscored by thefindings of the current review,particularly for studies in whichauthors focused on the act of transferbetween clinics. The difficulty ofreporting on this third (ie, post-transfer) phase of transition has beennoted in the literature and may bedue to late completion of transfer (eg,at 25 or 26 years of age) for whichresearch funding over an extendedperiod may be both expensive andunlikely.78

Authors of several studies did reportstatistical significance beingmaintained at the follow-up timepoint.93,94,104 For example, Krameret al93 reported an increase inknowledge of the physical and socialenvironment, strategies to change theenvironment, and disability rightslaws after completion of theintervention and at 6-week follow-up.However, the magnitude of the meanscore on the outcome scale useddecreased between interventioncompletion and follow-up. Of thestudies that included parent-proxyreports, several also included youthreports and/or made comparisonsbetween the 2 reportingtypes.59,62,68,70,85,93 Hatfield et al70

found a significant improvement intransition-specific self-determinationbased on parent-proxy reports butnot youth reports. In contrast, Krameret al93 did not find significantimprovement in self-determinationbased on either parent-proxy oryouth reports. Given the smallnumber of studies featuring bothreporting types and the variability inconclusions even with the sameoutcome being assessed, it is difficultto determine the impact of parent-proxy reporting on outcomes (ie, ifoutcomes are improved, hindered, orstay the same).

In several studies, authors describedinterventions that were adapted bypatients and their family members.For example, in the Youth TransitionDemonstration Project, Croke andThompson87 changed the types ofservices offered to families on thebasis of their specific needs,availability, and interests. Thisapproach may be useful as a methodof increasing participation andimproving outcomes, particularly ifthe adolescents and/or young adultsare themselves responsible for thedecision-making. The use of patientexperience to guide theimplementation of interventions (eg,by asking patients about factors suchas health, mobility, and QoL) has beensuggested.108 It is important to notethat although youth and their parentsmay share some beliefs aroundtransition, they may also havedifferent expectations.109 There isalso a need for interventions toaccount for developmentalappropriateness by evolving withparticipants and being responsive tothe developmental needs of patients.Although several interventions thatincluded youth in their earlyadolescence (ie, 12–15 years of age)incorporated individualized plans orneeds assessments as interventioncomponents, most interventions didnot discuss the use ofa developmental approach andinstead focused specifically on theperitransfer period. The SharedManagement Model used in the studyby Kingsnorth et al71 promotesa gradual shift in health careexpectations and responsibilitiesfrom health care professionals, toparents, to youth that is based ondevelopmental appropriateness.Considering the developmentalphases of youth during the design andimplementation of interventions maypromote better and more sustainablelong-term outcomes. By assessingpatients’ progress educationally,socially, and vocationally,interventions can effectively address

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a range of developmental milestonesand transitions. Short-terminterventions may have difficultyaddressing the changing needs ofyouth in this manner, conceivablyhindering their sustainabilitycompared to long-term interventions.The role of the caregiver is also ofimportance because caregiverinvolvement is often determined bythe developmental phase of patients.Colver et al103 have found thatensuring an optimal level of parentinvolvement can result in betteroutcomes for youth with autismspectrum disorder and cerebral palsy.Increased parental satisfaction withtheir own involvement in thetransition process has also beenassociated with reports of an easiertransition by youth.110 However,appropriate parent involvement candiffer between individuals and maydepend on factors such aschronological age, developmentalmilestones, and the individual needsand concerns of youth.

Despite the decision to expand theage range used for youth by theUnited Nations Educational, Scientific,and Cultural Organization to begin at12 years of age (from 15 years of age)for study inclusion, only 2 studies hada mean age of participants ,15 yearsold.68,70 The recent publication datesof studies that include youth in theirearly adolescence (ie, 12–15 years ofage) may be indicative of a morerecent trend of starting transition-focused care at a younger age. It isconceivable that the initiation oftransition discussion andinterventions at an early age maycontribute to long-term outcomeimprovements, in part because ofincreased comfort, familiarity, andexpectations with the transitionprocess.

This systematic review is supportedby several major strengths, includingthe completion of screening, dataextraction, and quality appraisal by 2reviewers independently and induplicate. The broad scope of thereview, particularly the inclusion ofall forms of transitional care,regardless of specific interventioncharacteristics, is of benefit given theheterogeneity of the interventionsused. A broad range of childhood-onset disabilities, includingneurodevelopmental disorders, wasalso included. The inclusion ofmultiple study types further aided theincorporation of additional relevantoutcome data into the synthesis. Therelatively large publication year rangeincluded in the literature search,corresponding to the emergence oftransitional care in the literature, alsocontributed to the comprehensivenature of the findings.49 This reviewadditionally benefitted from the useof an experienced librarian (L.P.) toconduct the literature search.

Several limitations are alsoacknowledged. In the majority ofstudies (90%), authors did not reporton at least 3 of the 12 items in theTIDieR checklist.54 Although someauthors provided additionalinformation on their interventiononce contacted, the inconsistentreporting on interventions betweenstudies limited our synthesis of therelationships between specificintervention characteristics andoutcomes. On the basis of theinclusion of only 9 RCTs and theheterogeneity of RCT-specificoutcome measures, it was also notfeasible to conduct a meta-analysis.Because of the exclusion of non-English studies, there was biastoward English-speaking countries.Lastly, the decision to excludeconference abstracts may have

introduced publication bias; however,we were unable to compare thestudies associated with conferenceabstracts to the studies associatedwith full articles.111

CONCLUSIONS

In this systematic review on TCIs foradolescents and young adults withchildhood-onset disabilities, we foundlimited evidence on the impact ofTCIs on QoL for adolescents andyoung adults with childhood-onsetdisabilities. Secondary outcomes ofthe current review did reveal somestatistically significant improvementsafter administration of TCIs. Given theloss of several statistically andclinically significant outcomes atfollow-up time points, futureinterventions should prioritizemethods of increasing the long-termefficacy of transitional care andimproved means for impactmeasurement. The initiation oftransitional care at an early age and/or continuation of interventions intoadulthood could contribute to long-term outcome improvements;however, further examination andmethodologic precision may beneeded to fully ascertain this impact.

ABBREVIATIONS

QoL: quality of lifeRCT: randomized controlled trialRoB 2: version 2 of the Cochrane

risk-of-bias tool for ran-domized trials

ROBINS-I: Risk Of Bias in Non-randomized Studies - ofInterventions

TCI: transitional care interventionTIDieR: Template for Intervention

Description andReplication

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Mr Levy conducted data acquisition and data analysis and drafted the initial manuscript; Ms Song conducted data acquisition and data analysis; Dr Perrier

conceptualized and designed the study and conducted data acquisition and data analysis; Drs Bayley, Andrew, Arbour-Nicitopoulos, Chan, Dimitropoulos, Hartman,

Huang, Kastner, Kingsnorth, McCormick, Nelson, Nicholas, Penner, and Toulany and Ms Luong, Ms Curran, Ms Thompson, Ms Woo, and Ms Zee conceptualized and

designed the study and contributed to data analysis and data interpretation; Dr Munce conceptualized and designed the study and supervised the data acquisition

and data analysis; and all authors reviewed and revised the manuscript critically for important intellectual content, approved the final manuscript as submitted,

and agree to be accountable for all aspects of the work.

This trial has been registered with the International Prospective Register of Systematic Reviews (https://www.crd.york.ac.uk/prospero/) (identifier

CRD42019137773).

DOI: https://doi.org/10.1542/peds.2020-0187

Accepted for publication Aug 10, 2020

Address correspondence to Sarah E.P. Munce, PhD, LIFEspan Service, Toronto Rehabilitation Institute–Rumsey Centre, University Health Network, 345 Rumsey Rd,

Toronto, ON, Canada M4G 1R7. E-mail: sarah.munce@uhn.ca

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2020 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: Supported by a Canadian Institutes of Health Research Transitions in Care – Best and Wise Practices grant.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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