Systematic review: Health care transition practice service models

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Nurs Outlook 64 (2016) 229e243

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Systematic review: Health care transition practice service models Cecily L. Betz, PhD, RN, FAANa,*, Lisa S. O’Kane, BAb, Wendy M. Nehring, PhD, RN, FAAN, FAAIDDc, Marie L. Lobo, PhD, RN, FAANd a

b

Department of Pediatrics, University of Southern California, Keck School of Medicine, Los Angeles, CA University of Southern California, University Center for Excellence in Developmental Disabilities, Children’s Hospital Los Angeles, Los Angeles, CA c College of Nursing, East Tennessee State University, Johnson City, TN d College of Nursing, University of New Mexico, Albuquerque, NM

article info

abstract

Article history: Received 18 March 2015 Revised 29 December 2015 Accepted 30 December 2015 Available online 11 February 2016

Background: Nearly 750,000 adolescents and emerging adults with special health

Keywords: Health care transition Adolescents Emerging adults Service models Systematic review

care needs (AEA-SHCN) enter into adulthood annually. The linkages to ensure the seamless transfer of care from pediatric to adult care and transition to adulthood for AEA-SHCN have yet to be realized. Purpose: The purpose of this systematic review was to investigate the state of the science of health care transition (HCT) service models as described in quantitative investigations. Methods: A four-tier screening approach was used to obtain reviewed articles published from 2004 to 2013. A total of 17 articles were included in this review. Discussion: Transfer of care was the most prominent intervention feature. Overall, using the Effective Public Health Practice Project criteria, the studies were rated as weak. Limitations included lack of control groups, rigorous designs and methodology, and incomplete intervention descriptions. Conclusion: As the findings indicate, HCT is an emerging field of practice that is largely in the exploratory stage of model development. Cite this article: Betz, C. L., O’Kane, L. S., Nehring, W. M., & Lobo, M. L. (2016, JUNE). Systematic review: Health care transition practice service models. Nursing Outlook, 64(3), 229-243. http://dx.doi.org/10.1016/ j.outlook.2015.12.011.

Introduction The health care transition (HCT) of adolescents and emerging adults (AEA) with special health care needs (SHCN) has been widely acknowledged as a major health care challenge as the service demands far exceed the current service capacity of both the

pediatric and adult systems of health care (refer to Box 1 for definition of terms; Bloom et al., 2012; Lotstein et al., 2009; Lotstein, Inkelas, Hays, Halfon, & Brook, 2008; McManus et al., 2013). It is estimated that nearly 750,000 AEA-SHCN reach the developmental stage of adulthood every year and enter an adult health care system that lacks the service capacity and expertise to care for them (Scal & Ireland, 2005). As a

* Corresponding author: Cecily L. Betz, Department of Pediatrics, University of Southern California, Keck School of Medicine, 4750 Sunset Blvd., MS #53, Los Angeles, CA 90027. E-mail address: [email protected] (C.L. Betz). 0029-6554/$ - see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.outlook.2015.12.011

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DEFINITION OF TERMS Health care transition (HCT) has been defined as “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems that is uninterrupted, coordinated, developmentally appropriate, psychosocially sound, and comprehensive” (Blum et al., 1993, p. 570). More recently, the Health Care Transition Research Consortium Health Care Transition Model has further expanded the earlier definition of health care transition by referring to it as “a lifespan approach wherein children are supported throughout their development to achieve their highest potential while learning to self-manage their condition enabling them to more easily achieve their goals for adulthood,” as operationalized by the model (Betz, Ferris, Woodward, Okumura, Jan, & Wood, 2014, p. 6). Adolescents and emerging adults (AEA) refers to the developmental period from early adolescence (ages 9e10 years) through the mid-1920s. Developmental theorist, Jeffrey Arnett, designated emerging adulthood as an imminent period of development preceding adulthood wherein personal perspectives, sense of self, and competencies for the future are explored and refined (Arnett, 2000, 2007; Arnett & Tanner, 2006). Children with special health care needs (SHCN) are “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally” (Arango et al., 1998).

result, efforts are under way in pediatric health centers of local communities to develop, implement, and test models of care that are responsive to the needs of this generation of AEA-SHCN, and of those who follow, to facilitate their successful transfer to adult care and transition to adulthood. This collective endeavor can be best described as in the seminal stages of development as there is limited evidence to support the creation of clinical guidelines or standards of care. It is therefore appropriate to review and analyze the state of the science pertaining to HCT service model development and its application to practice. The aim of this article was to present the findings of a systematic literature review of HCT service models as described in quantitative investigations. This review was

conducted to investigate the following issues: (a) what is the state of the science pertaining to the implementation of HCT service models? (b) what is the quality of the reviewed quantitative studies using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool? (c) what HCT interventions have demonstrated effectiveness in producing positive HCT outcomes for AEA-SHCN? and (d) what evidence can be used to support the implementation of HCT interventions in practice?

Methods The 10-year period of this search, from 2004 to 2013, was selected because the primary author had previously published an HCT review of the literature that extended up to 2003 (Betz, 2004). The articles in this review were obtained using three methods, based on guidelines for systematic reviews (Moher, Liberati, Tetzlaff, Altman, & The PRISMA Group, 2009). First, articles were located using the EBSCO, MEDLINE (Ovid), and PsycINFO databases because these are the reference sources used by authors who publish in the HCT field. The following search terms were used: disability or chronic or special health care needs and transition. Second, the reference lists of all research articles were scanned for additional pertinent research publications. Third, literature reviews were scrutinized for additional references (Bloom et al., 2012; Bryant & Walsh, 2009; Christie & Viner, 2009; Crowley, Wolfe, Lock, & McKee, 2011; Jalkut & Allen, 2009; Pai & Ostendorf, 2011; Rapley & Davidson, 2010; Sawyer & Macnee, 2010; Wang, McGrath, & Watts, 2010; Watson, Parr, Joyce, May, & Le Couteur, 2011). Based on this process, 746 publications were initially located, which were either full text or abstracts if the complete article was inaccessible. Following individual review of the publications by research team members, articles were excluded at the first level of screening for the following reasons: (a) not research articles, (b) published abstracts of conference proceedings, (c) published before 2004 and after 2013, (d) incomplete description of the study, and (e) not published in English. A total of 261 articles were obtained at the conclusion of this review stage (Figure 1). Articles were furthered delimited by the primary author with the agreement of the other two senior authors during the second level of screening, to include research studies that addressed topics pertaining to HCT service models or programs, which reduced the number to 133 articles. At the third level of screening, the first and second authors separately reviewed the articles or abstracts and identified 38 articles. Articles at this stage were eliminated for the following reasons: (a) inadequate description of the HCT model or program, (b) cohort studies examining adult outcomes that lacked descriptions of HCT programs, (c) findings of national- and state-level surveys with limited

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Figure 1 e Search process (Moher et al., 2009). AEA, adolescents and emerging adults; HCT, health care transition; ROL, review of literature.

information about HCT services/programs, (d) findings of AEA and families’ attitudes or perceptions following the HCT experience, (e) reports of providers’ HCT experiences and/or practices, (f) findings of transition programs not health related, (g) descriptions of transition barriers, (h) reports of AEAs’ and/or parents’ satisfaction with HCT services only, and (i) assessments of transition readiness or other focal aspect of HCT programs. The fourth level of the screening process involved the primary and fourth authors, who summarized information from each of the 38 articles into a table. As this process ensued, it became evident that other articles needed to be eliminated from the Level 3

screening for the following reasons: (a) description of an HCT program rather than service, (b) lack of pertinent information about the HCT model/services, (c) program not exclusively transition oriented, (d) HCT program not located in health care setting, (e) focus on structural/policy analysis rather than service, and (f) qualitative findings of respondents’ HCT experiences, although program description evident (Figure 1). A total of 21 articles were eliminated, leaving 17 studies that were included in the systematic review (Table 1; available online at www.nursingoutlook.org). The EPHPP Quality Assessment Tool for Quantitative Studies (EPHPP, 2009a; 2009b) was used to score the quality of the quantitative studies used in the

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systematic review. Study components assessed in the tool are (a) selection biasdrefers to the sample representativeness of the target population, (b) study designddenotes the extent to which bias is controlled with randomization of subjects, (c) confoundersd refers to the control of variables, (d) blindingdrefers to the extent that study participants and investigators are aware of the assignment to intervention or control groups, (e) data collectiondindicates the use of valid and reliable tools, and (f) withdrawal and dropoutsd refers to the reporting of the number of study participants and their reasons for dropping out. Categorical scores of strong, moderate, or weak are assigned according to the rater’s assessment. The overall study rating is based on the summation of ratings: (a) a strong rating indicates no weak ratings, (b) a moderate rating indicates one weak rating, and (c) a weak rating indicates two or more weak ratings. Two members of the authoring team independently rated each of the studies and then met to review the scores. In instances of discrepant scores, discussion ensued until consensus was achieved. The following Results and Discussion sections are organized according to the issues raised in this systematic review. The findings of the review and analysis of the 17 investigations are presented in the Results section. The Discussion section is organized to address the issues raised with this systematic review and subsequently the implications for research and practice.

Results In this initial section on findings, a summary of the research investigations is presented, which includes the countries where the studies were conducted and the research designs and methodologies. A profile of the samples based on the diagnostic categories and demographic data of the AEA-SHCN included in these investigations is presented in Table 2. Summary findings of the HCT interventions reported as to the type of services provided are presented in Table 3. Descriptions of service models were reviewed based on the principles of best practices reported by governmental and professional associations, as well as experts (American Academy of Pediatrics [AAP], American Academy of Family Physicians [AAFP], American College of Physicians [ACP], & Transitions Clinical Report Authoring Group, 2011; AAP, AAFP, & ACP-American Society of Internal Medicine [ASIM], 2002; AAP, Committee on Children With Disabilities,1996; Betz (2007); Binks, Barden, Burke, & Young, 2007; Bloom et al., 2012; Lotstein et al., 2009; McManus et al., 2013; Pai & Ostendorf, 2011; Reiss, Gibson, & Walker, 2005). These best practices include an AEAcentered framework of care, AEA involvement with care planning, family support services, transfer of care to primary and specialty care providers with an accompanying medical summary, self-management

instruction, an HCT service coordinator, and identification of a comprehensive array of transition and adult service referrals (Table 3). The Results section concludes with the quality assessment of the studies of this systematic review based on the assessment of the review team using the EPHPP criteria (Table 3).

Country of Origin and Research Designs and Methods Approximately one third (six) of the studies were conducted in the United States; the other studies were performed in Canada and Australia (three each), Italy (two), United Kingdom (one), France (one), and a combination of Australia and the United Kingdom (one; Table 1). As presented in Table 1 and Table 2, few of the investigations reported using prospective designs (Annunziato et al., 2013; Holmes-Walker, Llewellyn, & Farrell, 2007; McDonagh, Southwood, & Shaw, 2007). Most of the studies collected retrospective data using the following designs (Table 1):  Cross-sectional design with the treatment group (Chaturvedi, Jones, Walker, & Sawyer, 2009; Dabadie et al., 2008; Vanelli et al., 2004; Woodward, Swigonski, & Ciccarelli, 2012).  Two-group comparison (treatment and comparison groups; Cadario et al., 2009; Hankins et al., 2012; Hazel, Zhang, Duffy, & Campillo, 2010; Lane et al., 2007; Prestidge, Romann, Djurdjev, & Matsuda-Abedini, 2012; Van Walleghem, MacDonald, & Dean, 2008).  Cross-sectional designs integrating both prospective and retrospective elements into the cross-sectional designs (Bundock et al., 2011; Craig, Town, & Bibby, 2007; Latzman et al., 2010).  Prospective pre- and post-testing of the intervention (Annunziato et al., 2013).  Evaluation of the HCT program (Smith, Lewis, Whitworth, Gold, & Thornburg, 2011). A number of different methods were used to collect data. These methods included biochemical/biomedical measures, retrospective chart reviews, investigatordeveloped self-reported questionnaires and those with psychometric properties, and telephonic interviews, as presented in Table 1. Seven (41%) of the investigations incorporated a mixed-methods approach (Annunziato et al., 2013; Cadario et al., 2009; Chaturvedi et al., 2009; Craig et al., 2007; Dabadie et al., 2008; McDonagh et al., 2007; Woodward et al., 2012). Of the studies reviewed, only five incorporated the use of tools with reported psychometric properties (Annunziato et al., 2013; Craig et al., 2007; Latzman et al., 2010; McDonagh et al., 2007; Van Walleghem et al., 2008). Most often, these instruments were not used as a battery of tools for measurement but were used singly with other questionnaires developed by the investigators. Other methods included:  Program evaluation (Hankins et al., 2012; Smith et al., 2011).

Table 2 e Summary Findings of the HCT Interventions and Types of Service Study

AEA Framework of Care

AEA Involvement With Care

Family Support Services

Transfer of Care Primary

Specialty

Medical Summary

SelfManagement Instruction

Based on Betz and Redcay TCR model

X Young adults (MA, 22)

No

No

X

X

X

Bundock et al. (2011)

Sequential model (U.K. Department of Health, 2006; While et al., 2001, 2004); Direct transition model (Australia; While et al., 2001, 2004) No

X Age range not specified; based on individual transition readiness

X Parents included; specific services not identified

No

X

No

X

No

No

No

X

X

No

Chaturvedi et al. (2009)

Not stated

No

No

No

X

X

X

Craig et al. (2007)

Based on HCT position statements: AAP, ACP, AAFP; SAM

No

No

X

X

X

X

Cadario et al. (2009)

Service Referrals Employment

Community Living

No

No

No

No

No

No

No

No

No

No

X Stated but not described

No

No

No

No

Other

Psychological services

(continued on next page)

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Psychologist serves as an HCT coordinator Facilitates transfer between pediatric and adult services No HCT service coordinator identified Multidisciplinary team: pediatricians, psychologist, OT, PT Involved with ongoing assessment and preparation focused on developing selfsufficiency with managing their condition Pediatric expert in diabetes HCT coordinator Pediatric and adult endocrinologists participated in joint clinic visit before transfer to ADS Nurse serves as the HCT coordinator Medical and nursing teams No HCT service coordinator identified Pediatric and adult CF medical specialists and team members Composed of “preparation phase”: (a) attend adolescent clinic/SM review and (b) assessment of comprehensive issues; active phase: (a) attend adolescent clinic/SM, (b) adult services resource information, (c) adult services guidance, (d) joint

Education/ Training

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Annunziato et al. (2013)

Service Coordinator

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Table 2 e (Continued ) Study

AEA Framework of Care

AEA Involvement With Care

Family Support Services

Transfer of Care Primary

Specialty

Medical Summary

SelfManagement Instruction

No

No

No

No

X

X

No

Hankins et al. (2012)

No

17e19 years

Yes (parents included; specific services not)

No

X

No

No

Hazel et al. (2010)

No

17e19 years; transfer to adult rheumatologists

No

No

X

X (specific details not provided)

No

HolmesWalker et al. (2007)

No

No

No

X

X

No

No

Service Referrals Employment

peds/adult meeting, (e) visit to adult service, (f) appointment with adult services, (g) summary letter for transfer, and (h) attend first appointment No HCT coordinator identified Pediatric and adult gastroenterologists met jointly to effect transfer Pediatric hematology nurse case manager facilitated HCT program activities TPP composed of three components: (a) onsite visit of adult SCD program, (b) debriefing lunch with pediatric staff following visit, and (c) adult SCD appointment scheduled No HCT coordinator identified Transfer referral to adult rheumatologist; pediatric rheumatologist letter to adult rheumatologist; nursing follow-up/ monitoring of youth making appointment with adult provider Diabetes educator served as an HCT coordinator Transition team consisted of diabetes educator, PCP Other features: phone, e-mail, and texting appointment reminders, rescheduling,

Education/ Training

Community Living

No

No

No

No

No

No

No

No

No

No

No

No

Other

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Dabadie et al. (2008)

Service Coordinator

(continued on next page)

Table 2 e (Continued ) Study

AEA Framework of Care

AEA Involvement With Care

Family Support Services

Transfer of Care Primary

Specialty

Medical Summary

SelfManagement Instruction

ADA standards of medical care

X (15e25 years)

No

No

X

No

No

Latzman et al. (2011)

No

X

X

No

X

No

X

McDonagh et al. (2007)

Referenced U.K. and U.S. governmental documents; professional standards/ guidelines

X (11-, 14-, and 17-year -olds)

X

X

X

X

X

Prestidge et al. (2012)

No

X (TC begins at the age of 16 years)

X

No

X

X

X

Service Referrals Employment

telephonic sick day management No HCT service coordinator identified Team: pediatric endocrinologist, two RN educators, two RDs

No HCT service coordinator identified Nurse educator, pediatric hematologist, other team members (not specified) Local program coordinator served as an HCT coordinator ITP developed and reviewed during clinic visit or every 6 months

Nephrologist served as an HCT coordinator One or more team members meet with AEA during clinic visit to review HCT priorities Multidisciplinary team: MD specialist, RN, youth health specialist, pharmacist, RD, SW Ongoing contact as needed via e-mail, phone, texting

Education/ Training

Community Living

No

No

No

No

No

No

X

X

X

X

X

No

Other

Addressed risky behaviors, such as substance abuse, sexual behaviors, eating disorders, use of tobacco and alcohol Referrals to community resources for SCD purposes

Reproductive health; dental health; bullying; healthy behaviors; at-risk behaviors (drugs/ alcohol) Reproductive health issues; health care screening (i.e., cancer), high risk behaviors (i.e., illicit substances, alcohol, smoking) Transfer based on psychosocial factors and not age

235

(continued on next page)

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Lane et al. (2007)

Service Coordinator

236

Table 2 e (Continued ) Study

AEA Framework of Care

AEA Involvement With Care

Family Support Services

Transfer of Care Primary

Specialty

Medical Summary

SelfManagement Instruction

Smith et al. (2011)

No

X (15- to 18-year -olds)

X

No

X

No

X

Vanelli et al. (2004)

No

No

No

No

X

No

No

Service Coordinator

Service Referrals Employment

Community Living

X

X

No

No

No

No

Other

No referrals provided; information about services

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Seen every 4e6 months in TC until transfer No specific HCT coordinator identified; child life specialist serves as the administrative coordinator Curriculum presented in notebook No service coordinator identified Transfer protocol:

Education/ Training

1. Adolescents aged 18 years and their parents informed of future transfer to adult clinic. 2. Same transfer information provided subsequently during quarterly clinic visits. 3. After adolescent/ parent permission, introduced to adult MD. 4. First adult clinic visit with pediatrician. Joint management initiated (peds/adult MDs).

Van Walleghem et al. (2008)

No

X

No

No

X

No

X

5. Next visit in adult clinic with joint peds/adult MDs. Administrative coordinator (non-HCP) serves as an HCT coordinator

Facilitate access to CB DM1 resources (continued on next page)

Table 2 e (Continued ) Study

Woodward et al. (2012)

AEA Framework of Care

Based on MCHB HRTW noncategorical service framework

AEA Involvement With Care

AEA, ages 11e22 years with chronic conditions

Family Support Services

No

Transfer of Care Primary

X

Specialty

X

Medical Summary

No

SelfManagement Instruction

X

Service Coordinator

Service Referrals Employment

No

No

Community Living

X

Other

Health insurance changes, selfadvocacy skills, community inclusion; access to services

X indicates that the intervention component was evident or the type of service was available. Note. AAFP, American Academy of Family Practice; AAP, American Academy of Pediatrics; ACP, American College of Physicians; ADA, American Diabetes Association; ADS, adult diabetes service; AEA, adolescent and emerging adults; CB, community based; CF, cystic fibrosis; DM1, type 1 diabetes mellitus; CYACC, Center for Youth and Adults With Conditions of Childhood; HCP, health care professional; HCT, health care transition; HRTW, Healthy and Ready to Work; ID, interdisciplinary; ITP, individualized transition plans; MA, mean age; MCHB, Maternal Child Health Bureau; MD, medical doctor; OT, occupational therapist; PCP, primary care provider; peds, pediatric; PT, physical therapist; RD, registered dietician; RN, registered nurse; SAM, Society for Adolescent Medicine (now known as the Society for Adolescent Health); SCD, sickle cell disease; SM, selfmanagement; SW, social worker; TC, transition clinic; TCR, transition coordinator role; TPP, Transition Pilot Program.

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Ongoing phone consultation, project Web site, support group, bimonthly newsletter HCT care coordinators (provider type not specified) CYACC composed of medical consultation; care coordinator; ID team with MDs, RNs, SWs, community partners (not specified); comprehensive transition plan

Education/ Training

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Table 3 e Quality Assessment of the Studies Based on EPHPP Criteria Study

Selection Study Confounders Blinding Bias Design

Annunziato et al. (2013) Bundock et al. (2011) Cadario et al. (2009) Chaturvedi et al. (2009) Craig et al. (2007)

Moderate Weak Weak Moderate Moderate

Weak Weak Moderate Weak Weak

Weak Weak Strong Weak Weak

Weak N/A Weak N/A Weak

Dabadie et al. (2008) Hankins et al. (2012) Hazel et al. (2010) Holmes-Walker et al. (2007)

Weak Weak Weak Weak

Weak Moderate Weak Weak

Weak Strong N/A N/A

Weak Weak N/A N/A

Lane et al. (2007) Latzman et al. (2010)

Weak Weak

Moderate Weak Weak Weak

N/A N/A

McDonagh et al. (2007) Prestidge et al. (2012) Smith et al. (2011) Vanelli et al. (2004) Van Walleghem et al. (2008) Woodward et al. (2012)

Moderate Weak Weak Moderate Weak

Moderate Weak Moderate Weak Moderate

Strong Weak N/A N/A Weak

Weak N/A N/A N/A N/A

Weak

Weak

N/A

N/A

Data Collection

Withdrawals Overall and Dropouts Rating

Strong Weak Weak Weak Strong; only yes/yes for TACC questionnaire Weak Weak Weak Moderate; no reliability measures on extraction data Weak Moderate; only yes/yes for PANAS-X questionnaire Weak Weak Weak Weak Weak

Strong N/A Strong N/A N/A

Weak Weak Weak Weak Weak

N/A Weak N/A N/A

Weak Weak Weak Weak

N/A N/A

Weak Weak

Weak N/A Weak N/A N/A

Weak Weak Weak Weak Weak

Moderate; no reliability measure on questionnaire, only on data input and accuracy

N/A

Weak

Note. EPHPP, Effective Public Health Practice Project; N/A, not available; PANAS-X, Positive/Negative Affect Schedulee Expanded Form; TACC, The Transition to Adult Care Concerns Questionnaire.

 Retrospective chart review (Cadario et al., 2009; Chaturvedi et al., 2009; Craig et al., 2007; Dabadie et al., 2008; Hazel et al., 2010; Prestige et al., 2012; Smith et al., 2011).  Telephonic interviews (Vanelli et al., 2004; Van Walleghem et al., 2008).  Investigator-developed self-reported questionnaire (Annunziato et al., 2013; Bundock et al., 2011; Cadario et al., 2009; Chaturvedi et al., 2009; Craig et al., 2007; Dabadie et al., 2008; Latzman et al., 2010; McDonagh et al., 2007). Biochemical/biomedical data were reported in eight studies (Annunziato et al., 2013; Cadario et al., 2009; Chaturvedi et al., 2009; Craig et al., 2007; Hazel et al., 2010; McDonagh et al., 2007; Prestidge et al., 2012; Vanelli et al., 2004). To a much lesser degree, four (24%) studies reported adult outcomes (i.e., postsecondary education, employment, marital status; Craig et al., 2007; Dabadie et al., 2008; McDonagh et al., 2007; Woodward et al., 2012) or psychosocial variables, as reported in three (18%) studies (Annunziato et al., 2013; Craig et al., 2007; McDonagh et al., 2007). The most frequent outcome measured was the transfer appointment with the adult provider, which was reported in 11 (65%) studies (Annunziato et al., 2013; Bundock et al., 2011; Cadario et al., 2009; Chaturvedi

et al., 2009; Craig et al., 2007; Dabadie et al., 2008; Hankins et al., 2012; Hazel et al., 2010; Prestidge et al., 2012; Vanelli et al., 2004; van Walleghem et al., 2008).

Sample Profiles A limited number of diagnostic groups of AEA-SHCN were represented in the reviewed studies:  Type 1 diabetes mellitus (four; Bundock et al., 2011; Holmes-Walker et al., 2007; Lane et al., 2007; Van Walleghem et al., 2008).  Sickle cell disease (three; Hankins et al., 2012; Latzman et al., 2010; Smith et al., 2011).  Solid organ transplants (two pediatric kidney transplants and one pediatric liver transplant; Annunziato et al., 2013; Chaturvedi et al., 2009; Prestidge et al., 2012).  Juvenile idiopathic arthritis (two; Hazel et al., 2010; McDonagh et al., 2007).  Other diagnostic categories (one each): cystic fibrosis (Craig et al., 2007), noncategorical developmental disabilities (Woodward et al., 2012), inflammatory bowel disease (Dabadie et al., 2008), and perinatally acquired human immunodeficiency virus (Bundock et al., 2011, Table 1).

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Most of the samples in this review were composed of the following samples of AEA with mean age [MA] reported:  AEA (nine studies; 53%; Bundock et al., 2011: 19 years; Cadario et al., 2009: 19 years; Chaturvedi et al., 2009: 19.5 years; Craig et al., 2007: pretransition, 16.2 years and post-transition, 20.9 years; Holmes-Walker et al., 2007: 18.1e21.1 years of referral groups; Lane et al., 2007: treatment [Tx], 19 years and control, 21 years; Latzman et al., 2010: pretransition, 16.95 years, transition, 18.21 years, and post-transition, 20.75 years; Prestidge et al., 2012: pretransition: 18.9 and 19.9 years and transition, 18.8 years; Van Walleghem et al., 2008: no MA provided, age ranges, Tx, 18 years and control, 19e25 years).  Adolescents (six studies; 35%; Dabadie et al., 2008: 17.9 years; Hankins et al., 2012: Tx, 18.4 years and control, 18.3 years; Hazel et al., 2010: MA not provided, age range, 17e19 years; McDonagh et al., 2007: MA not provided, age groupings: 11, 14, and 17 years; Smith et al., 2011: 17 years; Woodward et al., 2012: 17.5 years).  Emerging adults (two studies; 12%; Annunziato et al., 2013: 22 years; Vanelli et al., 2004: 21 years). As shown in Table 1, five (29%) of the studies reported the ethnicity of the sample (Annunziato et al., 2013; Bundock et al.,: 2011; Latzman et al., 2010; Prestidge et al., 2012; Woodward et al., 2012).

Type of Services Provided The most prominent component of the HCT service models was the transfer of care. All the studies reported transfer to adult specialty care. Five (29%) of the studies’ transfer-of-care protocols addressed referrals to primary care providers (Craig et al., 2007; Hazel et al., 2010; Holmes-Walker et al., 2007; McDonagh et al., 2007; Woodward et al., 2012). Eight (47%) studies indicated that a medical summary, which accompanied the AEA or was mailed to the adult health care provider, was a component of the transfer of care (Annunziato et al., 2013; Cadario et al., 2009; Chaturvedi et al., 2009; Craig et al., 2007; Dabadie et al., 2008; Hazel et al., 2010; McDonagh et al., 2007; Prestidge et al., 2012). Other services and supports recommended for comprehensive transition planning were identified less often. Six (35%) intervention models included separate services and supports for parents or involved the parents in the service model (Bundock et al., 2011; Hankins et al., 2012; Lane et al., 2007; McDonagh et al., 2007; Prestidge et al., 2012; Smith et al., 2011); however, the details of services available for parents lacked detail. Nine (53%) of the studies reported the use of a service coordinator within the HCT service model (Annunziato et al., 2013; Cadario et al., 2009; Chaturvedi et al., 2009; Hankins et al., 2012; Holmes-Walker et al., 2007; McDonagh et al., 2007; Prestidge et al., 2012; Van

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Walleghem et al., 2008; Woodward et al., 2012). The disciplines of this service coordinator varied: pediatric physician specialist (two), nurse (two), other disciplines (four), and no discipline provided (one). Four (24%) of the studies reported community-based referrals to transition and adult services for employment, postsecondary education, and training purposes (McDonagh et al., 2007; Prestidge et al., 2012; Smith et al., 2011; and Woodward et al., 2012). As shown in Table 3, approximately one third of the reviewed studies (six; 35%) were based on a theoretical framework (Annunziato et al., 2013; Bundock et al., 2011; Craig et al., 2007; Lane et al., 2007; McDonagh et al., 2007; Woodward et al., 2012). In the remaining studies, reference to a theoretical basis for the development of the HCT intervention was not mentioned.

EPHPP Criteria As shown in Table 3, all the studies were rated overall as weak by the members of the review team using the EPHPP criteria. Few ratings of moderate and far fewer ratings of strong were identified by the raters. Although not included in the summary scores, none of the studies reported fidelity scores of study interventions.

Discussion The Discussion section is organized according to the four issues that were investigated in this review. The implications for research and practice are discussed, as well. The conclusions drawn from this review are cited at the end of this article.

Issue 1: What Is the State of the Science Pertaining to the Implementation of HCT Service Models? As the findings of this systematic review indicate, testing of HCT service models is in the early stages of development. Most of the studies used retrospective descriptive cross-sectional designs examining the outcome of HCT services with the treatment group alone (Chaturvedi et al., 2009; Dabadie et al., 2008; Vanelli et al., 2004; Woodward et al., 2012) or with a comparison group not exposed to the provision of HCT services (Cadario et al., 2009; Hankins et al., 2012; Hazel et al., 2010; Lane et al., 2007; Prestidge et al., 2012; Van Walleghem et al., 2008). Other cross-sectional designs employed a prospective treatment group with a retrospective comparison group (Bundock et al., 2011; Craig et al., 2007; Latzman et al., 2010). In a few instances, the treatment group was exposed to pre- and post-testing of the intervention or was studied prospectively using repeated measures (Annunziato et al., 2013; HolmesWalker et al., 2007; McDonagh et al., 2007; Smith et al., 2011). As evident from the description of the research designs, randomization was lacking. Studies that used comparison groups most often employed

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historical/retrospective groups who received clinical services before the initiation of HCT services (Table 1 and Table 2). The robust testing of HCT service interventions using randomization and control groups has been cited as needed to generate empirical evidence for clinical practice (Betz, 2004; Betz, Lobo, & Nehring, 2015; Betz, Lobo, Nehring, & Bui, 2013; Bloom et al., 2012; Nehring, Betz, & Lobo, 2015; While et al., 2004). Relatively few studies used tools with adequate psychometric properties. Most of the tools were developed by the investigators to gather data pertaining to the study problem or question (Table 1 and Table 2). The focus of the investigations in this review was centered on the transfer of care, as evidenced by the number of studies that identified it as an HCT outcome, as well as biochemical/biomedical variables, which are indicators of condition stability. Only a handful of studies incorporated a more comprehensive approach by investigating psychosocial variables and adult outcomes (Craig et al., 2007; Dabadie et al., 2008; McDonagh et al., 2007; Woodward et al., 2012). Consistent with the early stages of this field of research and practice, few psychometric instruments with reported validity and reliability exist, which has been identified as problematic in previous reviews as well (Betz, 2004; Betz et al., 2015; 2013; Nehring et al., 2015; Pai & Ostendorf, 2011; Rapley & Davidson, 2010; Watson et al., 2011). Tools that have been cited most often pertain to transition readiness, such as the UNC STARx scale (Ferris et al., 2010) and the Transition Readiness Assessment Questionnaire (Sawicki et al., 2011). Relatively few diagnostic groups of AEA-SHCN were represented in the studies included in this review, limiting generalizations to other groups of AEA-SHCN. The evidence as generated by these studies with the samples of AEA-SHCN is limited as well. Only four studies of AEA-SHCN with type 1 diabetes mellitus (Bundock et al., 2011; Holmes-Walker et al., 2007; Lane et al., 2007; Van Walleghem et al., 2008) and fewer studies of AEA-SHCN with other disorders (Table 1 and Table 2) of varied design and methodology were conducted. The age groupings create challenges in understanding differences attributable to developmental and age-specific characteristics, as has been raised in previous reviews as well (Betz, 2004; Binks et al., 2007). In addition, only one third of the studies reported the ethnicity of sample participants (Table 2). It is evident that more research with larger samples of AEA-SHCN representing a wider array of chronic conditions, including AEA with intellectual and developmental disabilities, and more ethnically diverse populations is needed (Betz, 2004; Betz et al., 2013; Binks et al., 2007).

Issue 2: What Is the Quality of the Reviewed Quantitative Studies Using the EPHPP Quality Assessment Tool? Based on the designation of scores assigned by the members of the review team using the EPHPP

guidelines (Table 3), the overall quality of the quantitative investigations is weak. Subsequently, generalization of the findings of these studies is limited. Eight (47%) of the studies of this review used retrospective designs, which was a limitation as the EPHPP guidelines are designed for prospective designs that enable comparisons between groups.

Issue 3: What HCT Interventions Have Demonstrated Effectiveness in Producing Positive HCT Outcomes for AEA-SHCN? The use of these designs and methodology reflects several influencing factors. First, HCT is an emerging field of practice that is largely in the exploratory stage of model development. As revealed in the studies, scant evidence exists on which to test a service model (Betz et al., 2013; Bloom et al., 2012; Watson et al., 2011). None of the studies reported the details of the intervention, including its description, frequency, and intensity. Furthermore, intervention fidelity was not reported in these studies, which contributes to the issue of consistent implementation of the intervention itself. The intervention effectiveness is suspect if the rigor of the intervention implementation (i.e., fidelity, lack of service description) was lacking, which has been cited in previous reviews as well (Crowley et al., 2011). As reported in the findings, transfer of care was the HCT intervention focus. In all instances, the transfer of care was aligned with connecting the youth with specialty care. Fewer than a third of the studies incorporated transfer of care to primary care providers. Slightly fewer than half included the medical summary as a component of the transfer, although this benchmark of best practices was reported in the literature nearly two decades ago (AAP, 1996), has subsequently been expanded on in the “Consensus Statement on Health Care Transition for Young Adults with Special Health Care Needs” (AAP et al., 2002), and further substantiated in the joint guidance issued by the AAP, involving the collaboration of AAFP and ACP (AAP et al., 2011). Of interest, few of the HCT studies addressed HCT comprehensively, as has been advocated for nearly two decades (AAP et al., 2011; AAP et al., 2002; AAP, 1996). Furthermore, about one third of the HCT intervention studies were based on a theoretical framework, which repeatedly has been identified as a limitation in previous reviews (Betz, 2004; Betz et al., 2013; Binks et al., 2007; Pai & Ostendorf, 2011; Wang et al., 2010; Watson et al., 2011; While et al., 2004). Adaptation of models, such as the Ecological Model (Bronfenbrenner, 2005), Chronic Care Model (Wagner, Austin, & Von Korff, 1996), Life Course Health Development (Halfon & Hochstein, 2002), and Transitions Model (Meleis, Sawyer, Im, Messias, & Schumacher, 2000), has been suggested for research application (Wang et al., 2010). More recently, experts have published models directly applicable to HCT (Betz et al., 2015; Schwartz, Tuchman, Hobbie, & Ginsberg, 2011).

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The HCT service intervention reported in the McDonagh et al. (2007) study described the model as addressing issues pertaining to the AEA-SHCN’s future employment, postsecondary education/training, and community living. HCT interventions in two other investigations addressed employment and postsecondary education/training needs of AEA-SHCN (Prestidge et al., 2012; Smith et al., 2011). The study by Woodward et al. (2012) referred to community inclusion issues, but the extent to which these were integrated within the service model was unclear. The findings of this review correspond to the findings of other HCT reviews showing that few interventions address the comprehensive needs of AEA-SHCN other than the transfer of care (Betz, 2004; Betz et al., 2013, 2015; Binks et al., 2007; Bloom, et al., 2012).

Issue 4: What Evidence Can Be Used to Support the Implementation of HCT Interventions in Practice? It is worth noting that the studies reported in this review lacked the extramural funding needed to conduct large-scale, multisite investigations, thereby limiting resources available to test the effectiveness of HCT intervention models. Until multisite testing of intervention models is performed, notwithstanding the aforementioned limitations associated with the state of the science, empirical evidence to support the implementation of HCT intervention models remains elusive. Of concern to researchers, providers, consumers, and advocates is the issue of ethics concerning the testing the effectiveness of an HCT intervention. Although scant evidence exists regarding the efficacy of HCT interventions, there is widespread expert opinion about its importance in facilitating HCT for populations of AEA-SHCN. These considerations need to be addressed in the designs and methods of future studies. Finally, the implementation of an HCT service model is complex, convoluted, and difficult, as evidenced by the work of experts in the field, whether clinicians, researchers, or the recipients of care (Betz, 2004; Betz et al., 2013; Binks et al., 2007; Bloom et al., 2012). This is a service model that has no precedent in either the pediatric/child health or adult health practice of care. These very different “worlds” of practice have been brought together not by design but Table 4 e Policy Box  Collaboration is needed between interdisciplinary professional associations to address issues concerning health care transition.  Improved understanding of the post-transition issues will serve to effect policy-related changes to improve outcomes.  Policy-related changes are needed to improve the tracking of AEA-SHCN outcomes as they enter the adultoriented system of health care. Note. AEA-SHCN, adolescents and emerging adults with special health care needs.

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rather by necessity, as the growing numbers of AEA with SHCN age into adulthood. As AEA-SHCN enter adult systems of care, the challenges of tracking them longitudinally are evident, as new patient identifiers are assigned, restrictive policies limiting access arise, and the inevitable contact information changes with new communities of choice, new cell phone providers, and so forth. The implications for policy-related changes to affect improved systems of care for all AEA-SHCN are apparent from this review (Table 4). Adolescence and emerging adulthood is a developmental period of formidable biopsychosocial changes. This life span period is neither static nor linear in its evolution and transition to adulthood. Therefore, it is difficult, if not impossible, to impose a model of intervention that is not individualistic and responsive to the ever-changing needs and life experiences of AEA-SHCN. This is one of the challenges that researchers and clinicians encounter in devising and testing the effectiveness of interventions that will promote the HCT of AEA-SHCN (Betz et al., 2015; Betz et al., 2013; Betz, 2004; Bloom et al., 2012; Crowley et al., 2011; Nehring et al., 2015; Watson et al., 2011).

Conclusion As the findings of this review demonstrate, the testing of HCT intervention models is in the early stages of development. Evaluation of the reviewed studies, using the EPHPP criteria, revealed that the quality of the studies was weak. The limitations of the studies include the lack of rigorous research designs, the use of tools with weak psychometric properties, samples that lacked sufficient size for analysis, and interventions with insufficient description for replication. Currently, guidance for clinical application based on empirical data is lacking. However, there is widespread consensus concerning the best practice framework of HCT services that remains to be applied to service models for testing and application to practice. Evidence to support the development and implementation of HCT service models and programs is needed and will be forthcoming with research based on designs and methods that control for the aforementioned limitations. Collaborative efforts are needed to conduct multisite investigations and to foster the development of national and international registries to advance HCT science and practice, with the ultimate goal of improving long-term AEA-SHCN outcomes.

Supplementary Data Supplementary data related to this article can be found at http://dx.doi.org/10.1016/j.outlook.2015.12.011.

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