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Children with chronic medical conditions are requiring transition services to prepare for transfer of care. There has been little data on what qualifies as a successful transition or how to measure this goal. The purpose of this review was to identify measurable patient-level outcomes for transitioning youth with chronic illness from pediatric to adult health care. An integrative literature search was conducted using CINAHL and OVID Medline. Key words included transition to adult care and health transition. Research articles published between 2002 and 2015 and reported on measurable patient-level outcomes in youth with chronic illnesses were included. The initial search yielded 556 articles and 19 articles were selected. Most of the research reporting on outcomes after transfer is nonexperimental using secondary data. Additionally, there is inconsistency in the use of term transition. In the specific outcomes identified, there is little uniformity in measurement both in terms of timing and standardization of measurement. Further research is needed on outcomes after transfer that includes standardized measures and time intervals in order to evaluate successful transition services. This research is essential for health care providers who are instrumental in supporting young people during this high risk period.
Measurable outcomes for transition success should include: (1) clinic attendance and (2) hospitalizations pretransfer and at least 3 years post-transfer. Additionally, satisfaction should be measured using a standardized instrument. As outcomes differ based on diagnosis, professional organizations should develop standardized, consistent methods to measure disease-specific outcomes.
Before the 1980s, few children with chronic medical conditions survived into adulthood. Medical advances have changed the natural history of many chronic illnesses increasing the survival of children with conditions such as diabetes and congenital heart disease [
State and national estimates of insurance coverage and health care utilization for adolescents with chronic conditions from the national survey of children's health, 2003.
]. The increasing number of youth with chronic illness surviving to adulthood has national implications, as it is now estimated that there are more than 900,000 children with a chronic condition nationally [
State and national estimates of insurance coverage and health care utilization for adolescents with chronic conditions from the national survey of children's health, 2003.
The health care system has not prepared to effectively transfer the care of these young patients with complex health care needs from pediatric to adult health care services. Often, the transfer of care occurs during moments of crisis such as pregnancy, nonadherence, or periods of mental distress, when pediatric providers feel unprepared to handle these issues with young adult patients. When the transfer occurs during times of crisis, it leads to poor outcomes such as: an increase in disease complications, increase in noncompliant behaviors, and an increase in the number of patients lost to follow-up [
Pote LA, Trofe J, Wade EH, et al. High rate of graft loss in pediatric kidney recipients who transition to an adult transplant program; roles of non-adherence and late referral. Abstract, American Transplant Conference, Toronto, ON, 2008.
]. Since the mid-1980s, there has been an interest in medical transition services as a way to bridge the gap in care for youths with chronic illnesses. In 1989, Surgeon General Koop held the second Conference on Medical Care for Youths with Special Health Care Needs. During the conference, Koop [
] stated that smooth medical transition for children with chronic conditions was the one major medical issue for chronic conditions that had not yet been addressed. In response, in 1993, Blum et al. [
Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine.
] defined medical transition services as the “…purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems” (pg. 570). Soon thereafter, the American Academy of Pediatrics, the American Academy of Family Physicians, the American Society of Internal Medicine, and the Society for Adolescent Medicine issued consensus statements on health care transitions for young adults with special health care needs [
]. These statements highlight the difference between “transfer” which is the act of changing from one provider to another and “transition” which is the process of preparation for patients, family members, and providers for the actual transfer of care. For the purpose of this review, “transition” refers to the process or program to prepare for the transfer of care, while the use of “transfer” relates to the actual event of transferring care from one provider to another.
The transition literature has primarily focused on the need for services, the basic concepts required for transition services, and identified barriers to the successful transfer of care. Most of the data remain anecdotal and there continues to be a significant lack of outcome data or recommendations about which outcome data are relevant for various populations [
Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine.
American Academy of PediatricsAmerican Academy of Family PhysiciansAmerican College of Physicians Supporting the health care transition from adolescence to adulthood in the medical home.
]. A recent systematic review on transition programs, identified common components of transitional programs, and identified several areas for further research; most importantly, they concluded that there is no accepted way to measure transition success [
American Academy of PediatricsAmerican Academy of Family PhysiciansAmerican College of Physicians Supporting the health care transition from adolescence to adulthood in the medical home.
]. However, it is still not apparent what outcomes best measure this goal. Measuring outcomes of successful transition is difficult. As early as 1993, Blum et al. [
Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine.
] stated, “Outcome measures should include rate of completion of referrals, functional outcomes, sense of well-being, and patient satisfaction” (pg. 573). Other potential outcome measures identified in the literature include educational success, employment status, insurance coverage, noncompliant behaviors, quality of life (QOL) measures, disease severity, and mental health status [
] published a consensus paper suggesting eight key indicators to assess successful transition: (1) patient not lost to follow-up; (2) attendance of scheduled visits in adult care; (3) the development of a trusting relationship with an adult provider; (4) continuing attention for self-management; (5) first visit to adult care no later than 3–6 months after transfer; (6) number of emergency room (ER) visits for regular care in the past year; (7) patient and family satisfaction with transfer of care; and (8) maintain/improvement of standard for disease control. These indicators were developed via Delphi methodology by 30 experts in adolescent health and are used as a framework for this current review analyzing how these indicators are currently being operationalized for evaluation of transition success. Therefore, the purpose of this review was to identify measurable patient-level outcomes using Suris and Akre's (2015) key indicators as a framework for transitioning youth with chronic illness from pediatric to adult health care.
Methods
This review used an integrative review process as described by Whittemore and Knafl [
] applying qualitative analysis techniques to assimilate a broad array of research findings to improve the validity of review findings. Using this method, “…a thorough and unbiased interpretation of primary sources, along with innovative synthesis of the evidence” is accomplished (p. 550). This integrative review process included two phases of literature selection (Figure 1).
Figure 1Modified Consolidated Standards of Reporting Trials flow diagram for search strategy. CINAHL = Cumulative index to nursing and allied health literature.
In phase I of the search, an initial search of the literature was conducted using CINAHL and OVID Medline using keywords and MeSH headings of transition to adult care, health transition, and youth with chronic illness yielded 885 articles. The search was subsequently limited to only articles published in peer-reviewed journals, articles available in English, and those published since 2002, based on the consensus statements on health care transitions for young adults with special health care needs [
]. After applying these limits, the remaining 556 articles were divided among the three authors for review. Article titles and abstracts were reviewed. Articles were included if they were primary research articles that focused on outcomes after transfer of care to adult providers in youth with chronic illness. Exclusion criteria included articles that were (1) primarily descriptive or qualitative; (2) focused on transition readiness; (3) reported patient/family and provider views; (4) focused primarily on cost; or (5) that evaluated youth with a primary diagnosis of intellectual, psychiatric, or physical disabilities. At the conclusion of phase I of the review, 42 articles were selected.
During phase II of the review, the 42 articles were reviewed in their entirety. The three authors discussed if the article met the inclusion or exclusion (Table 1). Twenty-six articles did not meet criteria (Figure 1), and three additional articles were selected based on review of reference lists. After phase II, a total of 19 articles met inclusion and exclusion criteria.
Table 1Inclusion and exclusion criteria
Criteria
Rationale
Inclusion
1. Peer-reviewed journals
1. Insure quality of data
2. Published between 2003 and 2015
2. Based on release of consensus statements on health care transitions for youth with special health care needs
3. Primary research articles
3. Insure quality of data
4. Focus on outcomes after transfer
4. Goal of the review: to identify measurable patient-level outcomes for transitioning youth
Exclusion
1. Descriptive articles
1. Goal of the review: to identify measurable patient-level outcomes for transitioning youth
2. Qualitative articles
2. Goal of the review: to identify measurable patient-level outcomes for transitioning youth
3. Focus on transition readiness
3. Readiness is not an outcome necessary for successful transfer
4. Focus on patient/family/provider views
4. Goal of the review: to identify measurable patient-level outcomes for transitioning youth
5. Focus on access to care
5. Access to care is a confounding but not a outcome related to transition services
6. Focus on cost
6. Goal of the review: to identify measurable patient-level outcomes for transitioning youth
7. Primary diagnosis of intellectual, psychiatric, or physical disability
7. Transition programs for these youth require additional specialized services beyond basic transitional care needs
]. This scale is based on five levels of evidence (LOEs) and includes three LOE for research studies and two for non–research-based articles. Level I is the highest and includes experimental/randomized controlled trials (RCTs) or meta-analysis of RCT, while level V (opinion of individual expert based on nonresearch evidence) is the lowest. All three authors discussed and agreed on the strength of evidence based on the reported methods of the articles reviewed. Data from the selected articles were entered into a table including columns that identified the author (s), purpose of study, sample/setting, study design and level of evidence, findings/outcomes, time points, and information about transition programs (Table 2). The table allowed for analysis of data in an unbiased comprehensive approach. Data were categorized into themes using an “iterative comparison” approach [
]. Results will be presented by strength of evidence followed by the themes identified.
Table 2Description of studies with measurable patient-level outcomes
Citation
Purpose
Sample/setting
Design/level of evidence
Outcomes analyzed
Time points
Transition program described (yes/no)
Akchurin et al. (26)
To determine whether adherence to immunosuppressant medications changes during transition from a pediatric to an adult program within the same transplant center.
Urban 25 pts transitioned between 1996 and 2011 (median age 22.3 years) Comparison group young adults 21–25 years of age transplanted by adult program
Retrospective LOE: III Comparison
Disease specific
•
Tacrolimus levels (adherence)
•
Four-year graft survival
•
Median serum creatinine
•
Median blood pressure
Non–disease specific
•
Frequency of clinic visits
•
Frequency of hospitalizations
2 years prior and 2 years after transfer
Yes Transition process managed by team. Transferred at 21 years. Appointment made for adult team and completion of medical summary.
Andemariam et al. (30)
To identify risk factors that led to lack of transition success.
47 SCD ages 16–24 years
Retrospective LOE: III Retrospective done 5 years after implementation of transition program
Disease specific
•
Genotype
•
Chronic transfusions
•
Hydroxyurea utilization
Non–disease specific
•
Gender
•
Race
•
Insurance
•
Age
•
Location of residence
•
Transition clinic attendance
•
3 year hospital admission history
Hospitalization and clinic attendance rates were looked at over 3-year period
Yes Combined adult/ped transition clinic Tour Brochure 3-phase program: preparatory, transitional, and completion
Annunziato et al. (27)
To compare the impact of a transition coordinator on outcomes for pediatric liver transplant recipients versus a historical comparison group
Urban 20 transplant recipients transferred between 2007 and 2012 who worked with transition coordinator and a control group (standard care)
Quasiexperimental Comparison between “transition coordinator” group and standard transition group LOE: II
Disease specific
•
Tacrolimus levels (adherence)
Non–disease specific
•
Health care management (Developmentally Based Skills Checklist)
•
QOL (SF-36)
•
Acceptability (they dev qualitative survey about pt perspectives
Med Adherence as measured by tacrolimus levels was compared between the transition coordinator group and comparison group for 1 year before and after transfer Other surveys only done on transition coordinator group 1 year before transfer and 1 year after
Yes Transition coordinator meet with patient twice before transfer. Transfer age usually 21 years. Transition checklist, transition coordinator sees pt at least once in adult clinic
Cramm (33)
To investigate the relationship between satisfaction with transitional care and quality of life over time among adolescents with various chronic conditions.
The Netherlands 138 pts (baseline) 188 pts (1 year f/u) with type I insulin dependent diabetes mellitus (53%), juvenile idiopathic arthritis (37%), or neuromuscular disorders (10%). (mean age at follow-up 17 ± 1.7 years)
Longitudinal survey (baseline data + 1 year follow-up data) LOE: III
Non–disease specific
•
Quality of life (DISABKIDS) condition-generic module questionnaire with three domains (emotional, physical, and social) 5-point Likert scale
•
Satisfaction with transitional care (“Mind the Gap” instrument) 7-point Likert scale
Data collected at baseline and 1-year follow-up
Yes Providers received training on transitional care. Survey respondents were patients who received care by the trained providers
Garvey et al. (18)
To examine characteristics of the transition from pediatric to adult care in emerging adults with type 1 diabetes and evaluate associations between transition characteristics and glycemic control.
Survey sent to 258—22 to 30 yo—receiving adult diabetes care at a single center (Joslin)—pretransition care from multicenters. Elements of transition programs unknown.
Cross-sectional design, integrating prospective survey results and retrospective outcome measurement LOE: III
Disease specific
•
A1C: before transition and current
Non–disease specific
•
Age at transition
•
Transition preparation
•
Transition satisfaction
•
Gap between pediatric and adult clinic visits
•
Social demographics (living arrangement, employed
Single survey—one time
Yes Asked about 8 transition program elements pretransfer (i.e., peds visit alone, met with adult provider, discussed transition)
Gleeson et al. (31)
(1) To document health status of young people with CAH at the time of transfer to adult services, (2) To evaluate whether young people with CAH are engaging with endocrine care through the transition process, (3) To assess the impact of a jointly run (YPC) and (4) To test whether attending the first two appointments (good early attender) is a potential marker of successful transition
61 patients, 16 > with CAH transferred to adult care Comparison groups pretransfer: 37 peds clinic (8 lost to f/u) 24 YPC program (13 lost to f/u)
Retrospective chart review; cross-sectional design with two-group comparison. LOE: III
Disease specific
•
Health status at time of transfer: type of glucocorticoid; dose of hydrocortisone (HC) (mg/m2/day); dose of fludrocortisone (mcg)
•
Biochemical control: premorning HC or random (17OHP) levels; testosterone levels in women; renin levels in patients with salt wasting CAH; home 17OHP levels
•
Physical status: final height; body mass index (BMI); blood pressure; menstrual cycle; signs of hyperandrogenism in women; evidence of testicular abnormalities
Non–disease specific
•
Clinic attendance for 3 years from date of transfer
•
Lost to follow-up
One time chart review—looking over past 3 years.
Yes—for treatment group (YPC) YPC: both pediatric and adult endocrine teams. Patients transferred to the YPC at a median age of 18 years (range 17–21 years) and had a median number of 1 apt (range 1–4).
Hankins et al. (32)
Assess feasibility (overall participation, satisfaction, and acceptance) of a pilot program to facilitate transition from pediatric to adult care for adolescents with SCD. Secondary objective to compare proportion of adolescents who fulfilled a first appointment with an adult hematologist among participants and nonparticipants.
Total 83 adolescents, 17–19 yo with SCD, 34 (41%) participated in program. Comparison with the 49 who did not participate
Retrospective chart review, cross-sectional design. LOE: III
Non–disease specific
•
% who attended an adult clinic visit within 3 months of completing the program compared with % who did not attend the program.
•
Overall % who attended a first adult visit in the 18 months of the program compared to 18 months prior to onset of program.
•
Rating of patient satisfaction after completing the program.
Completion of program
Yes: 3 components—1 day
Harden et al. (28)
To study rates of acute rejection and loss of kidney transplants 5 years before and 5 years after the introduction of the integrated young adult care pathway
9 (16–18 yo) standard care (group 1) versus 12 (16–18 yo) transitional program (group 2)
Retrospective chart review, cross-sectional design comparing outcomes before and after intervention. LOE: II
Disease specific
•
Comparison of acute transplant rejection, transplant failure, and death
Chart review—one time review for the years: Group 1 2000–2005 Group 2 2006–2011
Yes/joint clinic peds/Adult
Hegelson et al. (19)
To describe the transition of youth with type 1 diabetes from pediatric to adult health care services, examine the link with self-care and glycemic control, and distinguish youth who received medical treatment from different physicians in terms of demographic and parent relationship variables
N = 118 Nonrandomized Group 1 n = 64 pediatric care only T1 and T2 Grp 2 n = 26 adult care only Grp 3 n = 2 transitional: Peds T1 and adult T2 Grp 4 n = 9 no physician T2
Prospective, pretesting and post-testing of intervention, comparing four groups LOE: III
Disease specific
•
A1C
Non–disease specific
•
14 item self-care inventory
•
Parental outcomes: Keer and Statins Child Disclosure of Daily Activities; Child Disclosure of Feelings, and Parental Monitoring: Composite Score
Measurements at two different time periods: T1 = beginning of transitional study T2 = 1 year following transitional study
Yes—not formal but addressed individually
Holmes-Walker et al. (20)
To determine if a transition support program for young adults with diabetes could maintain attendance at a specialist clinic, improve diabetes control, and reduce acute hospital admissions with DKA in 15–25 year olds with type 1 diabetes
N = 191 young adults with type 1 diabetes aged 15–25 years, attending the Young Adult Clinic (YAC)
Quasiexperimental/prospective. Comparison of data before and after initiation of program. LOE: II
Disease specific
•
HBA1c at each visit
Non–disease specific
•
Date of first attendance
•
Source of referral
•
Frequency of clinic visits
•
In pt activity collected for 12 months prior to commencement of the program and over the reporting interval (DKA admissions only)
Prospective data collected for 12 months after beginning apts in YAC. Hospital data collected 12 months prior to participation in program and during program participation
Yes
Huang et al. (37)
To evaluate whether a generic, Internet- and mobile phone–delivered disease management intervention would improve disease management, self-efficacy, and communication outcomes in ACD (adolescent with chronic disease).
n = 81, 12–22 yo with ACD 38 Intervention (2 lost to f/u) 37 Control (4 lost to f/u)
Prospective, nonblinded, RCT. LOE: I
Non–disease specific
•
Transitional outcomes:
-
QOL
-
Health literacy (Test of Functional Health Literacy)
-
TRAQ (Transition Readiness Questionnaire)
-
Patient initiated communication
•
Disease status: Pediatric Ulcerative Colitis Activity Scale; Pediatric Chron's Disease Activity Scale; The Diabetes QOL Brief Clinical Inventory
•
Global Health status: Karnofsky Performance Scale; PedsQL
•
Disease management and self-efficacy: TRAQ, The Patient Activation Measure
Baseline, 2 months and 8 months
Yes 8 month program—based on Bandura Social Cognitive Theory
Kipps et al. (21)
To determine the efficacy and patient perception of various transfer procedures from pediatric to adult diabetes services.
Oxford, England. 229 patients (57% males) with a diagnosis of type 1 diabetes at <16 years old between 1985 and 1995 and were >18 years old in January 1999
Retrospective chart review of two groups with different transition models LOE: III
Disease specific
•
HgbA1c
Non–disease specific
•
Transfer:
-
Transfer type,
-
Age at transfer,
-
Time for completion of transfer,
-
Deviations from the transfer policies
•
Transfer outcomes:
-
Clinic attendance
•
Interviews:
-
Subject's experience of transfer
-
Consultants on details of program
Data points: 2 years pretransfer, 1 year pretransfer, 1 year post-transfer and 2 years post-transfer
Yes—comparison of four types of programs: A: pediatric to adult B: pediatric to young adult diabetes clinic in different hospital C: pediatric to young adult in same hospital (joint visits) D: pediatric to adolescent in same diabetes center (joint visits) and then to adult
Koshy et al. (29)
To examine renal allograft loss and hospitalization for RTx biopsy or rejection before and after transition to adult care using clinical and administrative health records of children who underwent RTx.
n = 115 patients 18–19.9 years old, who received transplant prior to age 18 years. 57% men; mean age at first transplant 13.9 ± 3.7 years
Retrospective/cohort study—secondary data analysis comparing outcomes before and after transition LOE: III
Disease specific
•
First outcome “total allograft loss” (death, return to chronic dialysis or repeat transplant without prior dialysis).
•
Second outcome “total allograft loss” or hospitalization for RTx rejection or biopsy.
Non–disease specific
•
Baseline demographics, Health Care Network data, and kidney disease and RTx.
•
Administrative health data
One time data review for all patients receiving RTx (1992–2002) Collected data up to 10 years post-transfer
No
Lotstein et al. (22)
To identify sociodemographic and clinical characteristics that were independently associated with leaving pediatric diabetes care; and (2) identify predictors of poor glycemic control at follow-up.
n = 185 adolescent participants ≥13 yo—diagnosed DM1 at onset of study and 1 adult visit >18 yo. SEARCH (multicenter study 2001—on)
Retrospective chart review—secondary data analysis LOE: III
Disease specific
•
Glycemic control 1st visit compared with last f/u
•
Disease factors: age at diagnosis, diabetes duration at baseline visit, time between visits, have a comorbidity, hemoglobin A1c, poor glycemic control
Non–disease specific
•
Race, highest parental education, health insurance
•
“Leaving pediatric care”—had pediatric provider at baseline and adult at last f/u
•
Age of transition
Data collected at baseline of study and first follow-up/adult care visit Collected data up 5 years post-transfer
No
Nakhla et al. (24)
To describe the rates of DM-related hospitalizations and retinopathy screening before and after transition to adult care. To test whether different methods of transfer of care were associated with improved outcomes.
1,507 young adults with DM ≥5-year duration starting at 16 years and tracked until 20 years of age.
Five types of transfer
-
Change in physician and DM team
-
Change in physician only
-
No change
-
Change in DM team only
-
Change of physician, no DM f/u care
Standard transfer at 18 years of age
Retrospective cohort study Secondary data analysis using Ontario Diabetes Database LOE: III
Disease Specific
•
DM hospitalization rates
•
Retinopathy screening
2 years post-transfer
No
Neu et al. (23)
To identify the type of clinical care received by young type I diabetic patients who have made the transition from paediatric to adult care. To assess the metabolic status of long-term treatment after transition.
99 patients with type I DM who transferred care to adult providers from 1998 to 2009
Three types of transfer
-
Specialized outpatient unit
-
Diabetes center
-
General practitioner
Single center, Germany
Prospective Nonexperimental LOE: III Standardized questionnaire sent to patients yearly after transfer of care
Disease Specific
•
Type of care
•
HgA1C
Baseline data extracted from records 12 months prior to transfer 3 months post-transfer, at 1 year post-transfer, then yearly for 10 years
Yes Standard practice: - Discussion 6–12 months pretransfer - Trial visit to new provider - Pt returns after trial visit to discuss - Comprehensive report is made for each patient
Pape et al. (25)
To evaluate medical outcomes and patient satisfaction rates from 1 year prior to transfer to 1 year after transfer in children after pediatric kidney transplantation.
66 patients with renal transplant between 1986 and 1992 who were 18 by 2004–2010 Single center, Germany
Retrospective chart review Data collected 1 year pretransfer and 1 year post-transfer Quasiexperimental LOE: II
Disease Specific
•
Kidney function
•
Blood pressure
•
# of antihypertensive medications
•
Doses/trough levels of immunosuppression medications
•
Biopsy-proven rejection episodes
•
# of hospitalizations
•
Graft failure
•
Death
Non–disease specific
•
Patient satisfaction
1 year pretransfer, at transfer, 1 year post-transfer
Yes Three self-selected types of transfer: - Direct transfer to adolescent clinic + adult transplant clinic - Transfer to adult nephrologist in private practice with alternating appointments over 1–2 years prior to transfer + 3 yearly visits to adult transplant clinic - Transfer to adult nephrologist in private practice with alternative appointments over 1–2 years prior to transfer
Reid et al. (36)
To determine the prevalence of successful transfer from pediatric to adult care among young adults with congenital heart disease. To examine correlates of successful transfer to adult care
360 patients with complex congenital heart disease Aged 19–21 years Canada
Nonexperimental Cross-sectional descriptive using secondary data from cardiology program database LOE: III
Non–disease specific
•
Successful transfer
•
Distance to clinic
•
Average family income
•
Health status
•
Activity restriction
•
Substance abuse, risky behavior (travel, sexual)
•
Dental health
•
Self-care
Single time point at 1 year, 2 years, or 3 years post-transfer
No, all patients transfer at 18 years of age
Samuel et al. (39)
To determine the association between age and avoidable hospitalization rate among young patients with ESRD To determine if there was an increase in avoidable hospitalizations after transfer of pediatric ESRD patients to adult care compared to the year before transfer
349 patients with ESRD, 92 who had transferred care, 257 who were only followed by adult providers. ≥15 years with ESRD Canada
Longitudinal Secondary data analysis using national organ failure registry Nonexperimental LOE: III
Non–disease specific
•
Avoidable hospitalizations
1 year pretransfer to a median follow-up time period of 4.5 years Collected data up to 9 years post-transfer
No
CAH = congenital adrenal hyperplasia; DKA = diabetic ketoacidosis; DM = diabetes mellitus; ESRD = end-stage renal disease; LOE = level of evidence; QOL = quality of life; RCT = randomized controlled trial; RTx = renal transplant; SCD = sickle cell disease; YPC = young people clinic.
Several themes were identified in this review: measureable disease-specific patient-level outcomes, measurable non–disease-specific patient-level outcomes, and the timing and frequency of outcome measurement. Findings on evaluation of strength of evidence will be presented first followed by results by theme.
Strength of evidence of the transition literature reporting outcomes after transfer
All of the 19 articles were appraised for LOE using the Johns Hopkins Nursing Evidence Based Practice Rating Scale [
]. All studies in this review had LOE between I and III. Five of the 19 (26%) articles were rated at a level of II (quasiexperimental study) or above including one RCT. A level I is a RCT, level II is quasiexperimental (lacking either the element of random assignment or control), and a level III is a nonexperimental design. Of the five articles that had LOE of I or II, none of the outcomes measured were consistent across studies; all the level II studies lacked randomization. Overall, the current LOE for transitional care was low with the majority of studies at a LOE III using a retrospective design without any control or manipulation of the outcome of interest. Furthermore, sample size in all studies was small limiting the reliability of recommendation for practice.
Fourteen of the 19 articles (74%) used disease-specific patient-level outcomes to measure transition success. Measurable disease-specific outcomes were reported in youth with diabetes, transplantation, sickle cell disease, and congenital adrenal hyperplasia. Even within the same diagnosis, different outcomes are measured to determine transition success (Table 3).
Table 3Disease-specific outcomes
Disease process
Outcome
Citation
Diabetes
HgA1C
Garvey et al. (18) Hegelson et al. (19) Holmes-Walker et al. (20) Kipps et al. (21) Lotstein et al. (22) Neu et al. (23)
Retinopathy screening
Nakhla et al. (24)
Transplant (liver and kidney)
Tacrolimus level
Akchurin et al. (26) Annunziato et al. (27) Pape et al. (25)
Transplant rejection Transplant failure/return to dialysis Death
Harden et al. (28) Koshy et al. (29) Pape et al. (25)
Kidney function Blood pressure Number of blood pressure medications
Pape et al. (25)
Sickle cell anemia
Hydroxyurea utilization
Andemariam et al. (30)
Congenital adrenal hyperplasia
Type and dose of medications Serum levels (hydrocortisone, testosterone, renin, 170HP) Physical status (height, BMI, hyperandrogenism in women, evidence of testicular abnormalities)
Seven studies evaluated transition success in young people with diabetes; in these studies, hemoglobin A1C was the most common outcome used to determine transition success [
A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years.
A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years.
This group of youth encompassed those who had undergone renal transplant and one article that looked at young people who transitioned after liver transplant (n = 5). Three of the articles looked at tacrolimus levels, pretransition and post-transition, which is believed to be a measure of adherence to the immunosuppressant regimen [
] followed tacrolimus levels for 2 years before and after transfer. Other outcomes measured in this population were rejection episodes, return to dialysis, and death [
]. The article attempted to identify risk factors that led to a lack of transition success. Included were many non–disease-specific outcomes, but hydroxyurea utilization was used as a disease-specific outcome, comparing utilization before and after transfer.
The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: Experience in a single centre over 18 years.
] looked at young people with congenital adrenal hyperplasia and their health status at the time of transfer who had participated in a transition program. Disease-specific outcomes that were measured included: type and dose of glucocorticoid, testosterone levels, renin levels and also physical status, such as, height, body mass index, blood pressure, menstrual cycle, signs of hyperandrogenism in women, and evidence of testicular abnormalities in men.
Besides measuring disease-specific outcomes, the majority of articles reported on non–disease-specific outcomes. In addition to general demographic information, five non–disease-related outcomes were commonly measured. These outcomes were categorized as: clinic attendance, patient satisfaction, self-management, QOL/health, and hospitalization rates.
Clinic attendance
The most common outcome measured was clinic attendance (n = 8, 42%). Studies varied in how this was measured with the most frequent being new adult clinic appointments (n = 5), frequency of adult visits (n = 2), missed appointments (n = 2), and gap between pediatric and adult clinic visits (n = 2). Four of the 8 studies (50%) did not use any specific timing of clinic attendance measurements. The four studies that did use specific timing of measurements also varied. Garvey et al. [
] used five timing categories to measure gap between pediatric and adult appointment: <3 months, 4–6 months, 7–12 months, 13–24 months, and >24 months. Hankins et al. [
] measured pretransfer and post-transfer attendance at 12 months and 24 months.
Patient satisfaction
Patient satisfaction was the second most common outcome measured (n = 6, 32%). Five of the 6 studies used some form of quantitative survey or scale. Garvey et al. [
] used a five-point summary scale measuring satisfaction with the transition process at post-transfer with responses ranging from completely dissatisfied to completely satisfied. Pape et al. [
] used a-point “smiley” scale to measure aspects of transition such as: satisfaction with pediatric care, how well prepared for transfer, transfer means a large change for your life, how grade satisfaction with actual adult care, and improvement in self-sufficiency after transfer. Only one study used a valid instrument designed to assess satisfaction with transitional care among adolescents with chronic health conditions [
Development and preliminary validation of the ‘Mind the Gap’ scale to assess satisfaction with transitional health among adolescents with juvenile idiopathic arthritis.
] instrument consists of 22 items using a 7-point Likert scale that include management of the environment, provider characteristics, and process issues. Annunziato et al. [
] were the only study to use a qualitative survey assessing the patient perspectives on transfer acceptability, working with transfer coordinator, and preferences for communication.
Quality of life
Five of the 19 (26%) studies measured QOL using various survey instruments. Two of the studies [
Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects.
] measured QOL using DISABKIDS: a 37-item survey using a 5-point Likert scale to measure three domains (emotional, physical, and social QOL) associated with six dimensions (independence, physical limitation, social inclusion, social exclusion, emotion, and medication). Huang et al. [
] measured general QOL using the PEDS QOL, a reliable and valid 23 item scale, measuring physical, emotional, social, and school functioning that is approved for use in children 2–18 years of age [
PedsQLTM 4.0: Reliability and validity of the pediatric quality of life inventoryTM version 4.0 generic core scales in healthy and patient populations.
]. Several studies measured disease-specific QOL such as the Pediatric Ulcerative Colitis Activity Scale, Pediatric Crohn's Disease Activity Scale, the Diabetes QOL Brief Clinical Inventory [
Hospitalization rates were measured in 6 of the 19 studies (32%). Of these, half of the studies measured disease-specific hospitalizations post-transfer. The other half measured total number of hospitalizations, comparing pretransfer to post-transfer frequency.
Self-management
Self-management was measured in 4 of the 19 studies (21%). Two of the studies used the Transition Readiness Assessment Questionnaire to measure the adolescent's ability to manage self-care; Huang et al. [
] developed a basic self skill behavioral checklist or inventory to measure disease-specific self-management skills, both studies measured at 1 year pretransfer and post-transfer.
Timing of outcome measurement
Both disease and non–disease-specific outcomes were measured at various intervals and for different durations after transfer. Outcomes were measures as early as 1 month after transfer to up to 10 years after transfer of care with a maximum median time of outcome measurement of 24 months. One (5%) of the 19 studies did not specifically report the time after transfer the outcomes were measured. The majority of studies (n = 13, 68%) followed outcomes on subjects for less than or equal to 36 months after transfer. Most of the studies (n = 12, 63%) collected data on outcomes either prior to or at the time of transfer, while 10 (53%) analyzed outcomes at more than one time point after transfer. Ten (53%) of the studies were retrospective and four (40%) of the 10 compared results to retrospective cohorts, either historical cohorts or retrospectively compared those who completed a transition program to those who did not.
In the studies that measured outcomes past 3 years post-transfer (n = 5, 26%), three were retrospective chart reviews. Only two studies attempted to collect data prospectively, and in these studies, attrition was a significant issue. Neu [
] attempted to follow outcomes up to 10 years post-transfer via patient mailed surveys. However, the percentage of responders dropped significantly after the initial 3 month follow-up from 74% to 46% at 1 year, down to 29% by 5 years, and to <20% after 5 years. Pape et al. [
] only attempted to follow patients for 1 year post-transfer, but they were only able to obtain data on 2/3 of the subjects by 1 year post-transfer. Samuel et al. [
] used a secondary data set to collect data on all those who were diagnosed with end-stage renal disease onset at <15 years of age and followed until death, loss to follow-up or the end of the study period (lasting 9 years). They only reported a median follow-up time period of 4.5 years but did not comment on loss to follow-up or the range of follow-up time period.
Discussion
The results of this review highlight the lack of standardized measureable outcomes for youth transitioning care. In 1993, Blum et al. [
Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine.
] recommended disease-specific measures to determine transition success. More than twenty year later, this has still not been defined. At this time, there is little consistency in measurement of disease-specific or non–disease-specific outcomes making the assessment of the effectiveness of transition programs difficult. In order to compare transition services, consensus is needed on what to measure, how to measure, and when to measure outcomes after transfer of care. This review highlights the difficulties in measuring outcomes after transfer while identifying methods of measuring outcomes in 6 of the eight recommended indicators (Table 4) described by Suris and Akre [
Development and preliminary validation of the ‘Mind the Gap’ scale to assess satisfaction with transitional health among adolescents with juvenile idiopathic arthritis.
Clinic attendance (Suris and Akre indicators #1, #2, and #5)
It is not surprising that the most commonly measured outcome was clinic attendance. The transitional care literature has supported the importance of attending the first clinic appointments as a marker for ongoing adult care [
The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: Experience in a single centre over 18 years.
] main indicators for successful transition involved clinic attendance: “Attending scheduled visits in adult care (no missed consultations unless previously canceled and rescheduled)” and “Patient's first visit in adult care no later than 3–6 months after transfer” (p. 616). However, only 5 of the 19 articles (26%) measured attendance at adult clinic appointment and fewer (n = 2, 10%) measured missed appointments. In addition, only two of the studies (10%) in this review specifically measured adult clinic appointments within the recommended 3–6 month time period. Gleeson et al. [
The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: Experience in a single centre over 18 years.
] describe transitioning as a process that begins in early adolescence, and clinic attendance at that time can provide some prediction of adult clinic attendance indicating the importance of measuring pretransfer and post-transfer clinic attendance rates. Longitudinal follow-up of clinic attendance appears to be important; Bloom et al. [
] called for longitudinal follow-up of at least 1 year post-transfer. However, only two of the studies in this review measured both preclinic and postclinic attendance out to 18–24 months. Gleeson et al. [
The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: Experience in a single centre over 18 years.
] recommended measurement of adult clinic attendance up to 3 years after transfer, as attendance rates tend to drop after the third year. These findings continue to show a lack of longitudinal follow-up; recommendations would include monitoring clinic attendance within the first 3–6 months of transfer and yearly for at least 3 years post-transfer, ideally up to 5 years post-transfer.
Relationship adult provider (Suris and Akre indicator #3)
This review did not identify a measurable outcome assessing if a trusting relationship with an adult provider was established. Clearly, the importance of this indicator should not be ignored. It has been shown previously that the patient–provider relationship may play a role in treatment adherence and treatment adherence is essential for successful outcomes. Several previous studies have demonstrated that patients who have a strong relationship with their provider have improved adherence, thus ultimately improving outcomes [
]. None of the articles included in this review monitored primary care provider use. Given the importance of the patient–provider interaction and its impact on treatment adherence, future transition work should consider monitoring this relationship.
Self-management (Suris and Akre indicator #4)
Self-management has been defined as an “individual's ability to manage the symptoms, treatment, physical and psychosocial consequences, and lifestyle changes inherent in living with a chronic condition” (pg. 178) [
]. The development of self-management skills is an integral part of transition for adolescents with a chronic illness. Failure to develop these skills can prevent successful transition to adult centered care, while interventions to improve self-management have been shown to improve health outcomes, QOL, and disease-specific knowledge, in both adults and children [
This review did not specifically identify outcomes related to self-management. However, several of the measurable disease-specific outcomes such as Hgb A1C or tacrolimus levels are proxies for medication adherence, one aspect of self-management. Lawson et al. [
] previously studied self-management finding that youth who had not participated in a formalized transition program had inadequate skills to manage their disease in adulthood. Tasks that the young people found most challenging involved interaction with adult-oriented systems, such as calling a medical office to schedule appointments, and maintaining a personal medical file. These findings highlight specific issues youth face after transfer and should be considered when designing outcomes to measure self-management in transition research in addition to monitoring treatment adherence.
ER visits for regular care in the past year (Suris and Akre indicator #6)
] recommend measuring number of avoidable ER visits in the past year as an indicator of good transitional care. This review did not identify ER visits as a common outcome measured. However, hospitalization rates were measured in 32% of the studies. Disease-specific hospitalization rates are likely an indicator of poor management of disease. Thus, measuring pretransfer and post-transfer hospitalization rates is recommended as an indication of ongoing disease management post-transfer and could be used to evaluate effectiveness of transition programs.
Patient and family satisfaction with transfer of care (Suris and Akre indicator #7)
Patient satisfaction was one of the most frequently measured outcomes from this review. However, there was little consistency in how satisfaction was measured. Only one study used a validated instrument, the “Mind the Gap” instrument [
Development and preliminary validation of the ‘Mind the Gap’ scale to assess satisfaction with transitional health among adolescents with juvenile idiopathic arthritis.
]. This instrument consists of 22 items using a 7-point Likert scale that includes management of the environment, provider characteristics, and process issues. Future work should be done using the “Mind the Gap” instrument in other patient populations before it can be recommended for use in transition research for all youth with chronic illness.
Maintain/improvement of standard for disease control (Suris and Akre indicator #8)
Maintenance or improvement of standards for disease control was recommended by Suris and Aker [
] as a way to measure transition success. Seventy-four percent of the articles reviewed measured disease-specific outcomes. However, there remains a lack of consensus of which measures are important to monitor or how to measure the outcomes, even within the same chronic disease. For example, in renal transplant patients, different disease outcomes have been used to measure successful transition: tacrolimus levels [
]. The most consistent disease-specific outcome measurement for transition success found in this review was in young people with diabetes. Six out of seven of the research studies on diabetes used hemoglobin A1C as a measurement of transition success, comparing pretransfer and post-transfer levels [
A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years.
There are several limitations to this review including limitations with the search strategy, lack of quality assessment, and the inclusion and exclusion criteria. The search strategy used was comprehensive but did not include searches in data sets other than CINHAL and OVID MEDLINE. A PubMed search was not included given the overlap in articles with MEDLINE based on preliminary searches. The search used for this review was supplemented using references lists; it is likely that most articles were included.
This review did not specifically assess the quality of the articles reviewed as assessing quality is subjective and there is currently no “gold standard” for quality assessment of the literature [
]. However, the search strategy was designed to insure quality by limiting studies to those published in peer-reviewed journal.
This review excluded articles with a primary focus on transition readiness as the focus was on post-transfer outcomes. Evaluation of readiness prior to transfer is important as it may be a confounding factor for transition success, but it is not an outcome necessary for a successful transition. Additionally, articles that evaluated youth with a primary diagnosis of intellectual, psychiatric, or physical disabilities were not included in this review. This patient population was excluded as programs designed to meet the needs of these youth require additional specialized services beyond basic transitional care program needs. However, evaluation of outcomes specifically related to this population is also important and should be analyzed in future studies. An evaluation of cost related to transfer of care was not included here although this is an important topic. Prestige et al. [
] found that providing transition services to renal transplant recipients were cost effective. This work should be expanded on using standardized outcome measures as a way to compare effectiveness of different transition programs on outcomes and while analyzing the cost of transition services.
Finally, from this review, it is clear that transition and transfer are used interchangeably. Medical transition is defined as the “…purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems” (pg. 570) [
Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine.
]. Transfer is the final act, once the patient has been transferred from pediatric to adult care. In this review, six studies (28%) reported on transition outcomes but did not specifically describe the process of transition or transfer. In these studies, it was difficult to determine if there was an actual transition process or merely transfer of care, thus making comparisons about outcomes difficult.
Clinical implications
Clearly, there remains significant work to be done in the area of defining measurable outcomes after transition. Given the differences in outcomes based on diagnosis, we recommend that professional organizations develop standardized methods to measure disease-specific outcomes accounting for disease progression and expectation of health based on the norm for the disease process. Furthermore, we recommend consistency in measurement of clinic attendance, ER visits, and patient satisfaction for all individuals after transition. It is evident that outcomes should be measured for more than 1 year after transition, and we recommend a minimum follow-up time of at least 3 years and ideally up to 5 years after the actual transfer of care.
References
Okumura M.J.
McPheeters M.L.
Davis M.M.
State and national estimates of insurance coverage and health care utilization for adolescents with chronic conditions from the national survey of children's health, 2003.
Pote LA, Trofe J, Wade EH, et al. High rate of graft loss in pediatric kidney recipients who transition to an adult transplant program; roles of non-adherence and late referral. Abstract, American Transplant Conference, Toronto, ON, 2008.
Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine.
A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years.
The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: Experience in a single centre over 18 years.
Development and preliminary validation of the ‘Mind the Gap’ scale to assess satisfaction with transitional health among adolescents with juvenile idiopathic arthritis.
Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects.
PedsQLTM 4.0: Reliability and validity of the pediatric quality of life inventoryTM version 4.0 generic core scales in healthy and patient populations.
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