The Rare Life: Examining Parents' Grief, Barriers, and Facilitators Associated with Caring for Medically Complex Children.

Caring for medically complex children (MCC) involves physical, financial, and emotional challenges for parents, who are often grieving the loss of their expectations or vision for a healthy child. We applied Miles' parental grief model to explore the experiences of 25 parent-caregivers who were interviewed for The Rare Life, a podcast in which a mother of a MCC interviews parents about their experiences caring for their MCC. We characterize parent-caregivers' experiences of shock; their intense grief, including yearning, helplessness, physical symptoms, behavioral changes, and a search for meaning; and the reorganization that helped them accept their parenting reality. In addition, we identified communicative barriers and facilitators that hindered and supported parent-caregivers' movement through the phases of grief.

The Paradoxical Outcomes of Observing Others' Exercise Behavior on Social Network Sites: Friends' Exercise Posts, Exercise Attitudes, and Weight Concern.

This study examined the implications of observing others' exercise behavior on social network sites (SNSs). Social cognitive theory and social comparison theory were used to make predictions about the conditions under which individuals' (N = 232) exposure to exercise-related SNS posts from others in their social network were related to their weight concerns and exercise attitudes. The results revealed a paradox in which observing others' exercise posts was associated with both adaptive and maladaptive responses. The number of exercise-related SNS posts received from members of respondents' social networks was associated with greater weight concern, and this relationship was stronger among respondents who viewed exercise-related posts from network members who were similar to respondents. Yet, among respondents who had a tendency to make appearance-related upward social comparisons, the number of others' exercise-related SNS posts received was associated with pro-exercise attitudes.

Relevance of the Aboriginal Children's Health and Well-being Measure Beyond Wiikwemkoong.

INTRODUCTION: Aboriginal children in Canada experience significant disparities in health in comparison to their mainstream peers. As Aboriginal communities and agencies strive to improve health, it is important to measure the impact of new programs and services. Since many Aboriginal children live in rural and remote communities, it is important that communities have access to measurement tools that are relevant and feasible to implement in these contexts. The Aboriginal Children's Health and Well-being Measure (ACHWM) was developed to meet the need for a culturally relevant measure of health and wellbeing for Aboriginal children (ages 8-18 years) in Canada. It was developed within one First Nation community: the Wiikwemkoong Unceded Territory. The intention from inception was to ensure the feasibility and relevance of the ACHWM to other Aboriginal communities. The purpose of this article is to describe the relevance of the ACHWM beyond Wiikwemkoong. METHODS: This article presents the results of a community-based and collaborative research study that was jointly led by an academic researcher and a First Nations Health leader. The research began with the 58-question version of the ACHWM developed in Wiikwemkoong. The ACHWM was then submitted to a well-established process of community review in four new communities (in sequence): Weechi-it-te-win Family Services, M'Chigeeng First Nation, Whitefish River First Nation, and the Ottawa Inuit Children's Centre (OICC). The review process included an initial review by local experts, followed by a detailed review with children and caregivers through a detailed cognitive debriefing process. Each community/agency identified changes necessary to ensure appropriate fit in their community. The results from all communities were then aggregated and analysed to determine the similarities and differences. RESULTS: This research was conducted in 2014 and 2015 at four sites. Interviews with 23 children and 21 caregivers were completed. Key lessons were learned in all communities that enabled the team to improve the ACHWM in subtle but important ways. A total of 12 questions were revised, and four new questions were added during the process. This produced a 62-question version of the ACHWM, which was endorsed by all communities. CONCLUSIONS: The ACHWM has been improved through a detailed review process in four additional communities/agencies and resulted in a stable 62-question version of the survey. This process has demonstrated the relevance of the ACHWM to a variety of Aboriginal communities. This survey provides Aboriginal communities with a culturally appropriate tool to assess and track their children's health outcomes, enabling them to gather new evidence of child health needs and the effectiveness of programs in the future.

Assessing children's interpretations of the Aboriginal Children's Health and Well-Being Measure (ACHWM).

BACKGROUND: There are emerging opportunities to improve the health of Aboriginal children and youth. The Aboriginal Children's Health and Well-being Measure (ACHWM) was developed to enable Aboriginal communities to obtain group-level data from the perspectives of their children 8 to 18 years of age. The survey was developed in collaboration with children, based on the Medicine Wheel framework. The purpose of this study was to ensure that children and youth interpreted the ACHWM questions consistently and accurately and to establish the face validity of the survey. METHODS: Children and parents/caregivers from the Wikwemikong Unceded Indian Reserve (Canada) participated in a detailed interview process as they completed the ACHWM, in 2012. Each participant worked through their thought process verbally, to enable the interviewer to identify questions that were misinterpreted or inconsistently interpreted. Questions were revised based on feedback from the participants, and reviewed with new participants until a stable version was established. The resulting version was reviewed by health care providers and community members to further ensure cultural relevance and face validity within the community. RESULTS: A total of 18 interviews, with 9 children and 9 caregivers, were required to achieve a stable version of the survey. The children ranged in age from 8 to 18 years. Revisions were required for 19 questions. Most of these revisions were minor linguistic changes. In addition, 6 questions were deleted due to consistent problems and 4 questions were created to address gaps identified during the process. Community members confirmed the appropriateness of the measure for their community and communicated their pride in their youth's role in the development of this survey. CONCLUSIONS: The result was a 58-question version of the ACHWM that was consistently interpreted and culturally appropriate, and had face validity confirmed by experts from the community, children and their parents/caregivers. The ACHWM is ready to be assessed for relevance to other Aboriginal communities.

Validity of the Aboriginal children's health and well-being measure: Aaniish Naa Gegii?

BACKGROUND: Aboriginal children experience challenges to their health and well-being, yet also have unique strengths. It has been difficult to accurately assess their health outcomes due to the lack of culturally relevant measures. The Aboriginal Children's Health and Well-Being Measure (ACHWM) was developed to address this gap. This paper describes the validity of the new measure. METHODS: We recruited First Nations children from one First Nation reserve in Canada. Participants were asked to complete the ACHWM independently using a computer tablet. Participants also completed the PedsQL. The ACHWM total score and 4 Quadrant scores were expected to have a moderate correlation of between 0.4 and 0.6 with the parallel PedsQL total score, domains (scale scores), and summary scores. RESULTS: Paired ACHWM and PedsQL scores were available for 48 participants. They had a mean age of 14.6 (range of 7 to 19) years and 60.4 % were girls. The Pearson's correlation between the total ACHWM score and a total PedsQL aggregate score was 0.52 (p = 0.0001). The correlations with the Physical Health Summary Scores and the Psychosocial Health Summary Scores were slightly lower range (r = 0.35 p = 0.016; and r = 0.51 p = 0.0002 respectively) and approached the expected range. The ACHWM Quadrant scores were moderately correlated with the parallel PedsQL domains ranging from r = 0.45 to r = 0.64 (p ≤ 0.001). The Spiritual Quadrant of the ACHWM did not have a parallel domain in the PedsQL. CONCLUSIONS: These results establish the validity of the ACHWM. The children gave this measure an Ojibway name, Aaniish Naa Gegii, meaning "how are you?". This measure is now ready for implementation, and will contribute to a better understanding of the health of Aboriginal children.

Loneliness and sleep quality: dyadic effects and stress effects.

The aims of this investigation are to determine whether loneliness is associated with a person's own sleep quality and sleep quality of their partner, and to test stress as a potential mediator. Participants were 255 couples in married (75%) or cohabiting relationships who completed self-report measures of loneliness, sleep quality, stress, and depression. Results of Actor-Partner Interdependence analyses replicated findings in the literature showing an association between loneliness and poor sleep quality. The more lonely a male participant was, the lower his partner's sleep quality. In addition, the more lonely participants were, the higher they rated their partner's sleep disturbance. There were significant indirect effects of loneliness on poor sleep quality through increased stress, even after controlling for depression.

Youth and young adults with spina bifida: their utilization of physician and hospital services.

OBJECTIVE: To describe current patterns of health care utilization of youth and young adults who have spina bifida (SB) and provide evidence to guide the development of health care for this growing population. DESIGN: We conducted a secondary analysis of health services utilization data from the Canadian Institute for Health Information to determine the rates and patterns of health care utilization, because comprehensive health care has been recognized as critical to positive health outcomes. SETTING: Participants were identified from 6 publicly funded children's treatment centers. PARTICIPANTS: Health records from youth (n=164; age range, 13.0-17.9y) and adults (n=120; age range, 23.0-32.9y) with SB contributed to this study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The rates of outpatient physician visits and hospital admissions for the youth and adult groups were calculated. The proportion with a "medical home" was also calculated. RESULTS: The annual rates of outpatient physician visits per 1000 persons were 8031 for youth and 8524 for adults with SB. These rates were approximately 2.9 and 2.2 times higher, respectively, than for their age-matched peers. On average, 12% of youth and 24% of adults with SB had a medical home. The annual rates of hospital admissions per 1000 persons were 329 for youth and 285 for adults with SB. Rates of admissions were 19.4 and 12.4 times higher, respectively, for these groups than for the general population. CONCLUSIONS: It appears that persons with SB are accessing health services more often than their age-matched peers, and few have a medical home. We recommend that seamless medical care be provided to all adults with SB, coordinated by a primary care provider, to facilitate comprehensive care.

Examining diet- and exercise-related communication in romantic relationships: associations with health behaviors.

This study examined the association between diet- and exercise-related social influence and support among romantic partners, as well as whether these variables were associated with their health behaviors. An Actor-Partner Mediator Model was used to examine these associations at the couple level (n = 192). Results indicated that individuals who felt their partners used more positive influence strategies also reported feeling more supported by their partners. Further, men who reported feeling more supported by their partners also engaged in healthier diet and exercise behaviors. Overall, the results suggested that people's perceptions of positive communication (i.e., influence and support) from their partners were generally more likely to be associated with their enactment of healthier behaviors. Implications for intrapersonal as well as interpersonal effects of influence, support, and health behaviors are discussed.

Health outcomes among youths and adults with spina bifida.

OBJECTIVE: To describe the health and health-related quality of life (HR-QoL) outcomes of youths and young adults with spina bifida. STUDY DESIGN: One global rating of self-rated health and 2 generic measures of HR-QoL were administered to a group of youths and young adults with spina bifida. HR-QoL was measured using the Health Utilities Index Mark 3 (HUI3) and the Assessment of Quality of Life version 1 (AQoL). RESULTS: Data was obtained from 40 youth (mean age 16.0 years) and 13 young adults (mean age 26.6 years). Most youth rated their overall health as either excellent or very good (65%) compared with fewer adults (23%) (P = .007). The mean HR-QoL scores for youths versus adults were 0.57 versus 0.36 (P = .03) for the HUI(3) and 0.37 versus 0.25 for the AQoL (P = .09). HUI(3) and AQoL scores were correlated with level of anatomic lesion (rho = 0.64 and rho = 0.42, respectively). CONCLUSIONS: The HR-QoL of youths and young adults with spina bifida was low on measures that are aggregated using societal values (the HUI3 and AQoL). This is in contrast to their single global self-ratings of health, which were more favorable. These findings underscore the distinction between ratings of HR-QoL based on societal values versus the personal lived experiences of adults with childhood-onset disability.

Updating the Canadian hemophilia outcomes-kids life assessment tool (CHO-KLAT Version2.0).

OBJECTIVES: Hemophilia is an X-chromosome-linked disorder associated with recurrent bleeding into muscles and joints, leading to pain and limitations in physical function that may diminish quality of life. The Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT) is a disease-specific measure of quality of life that was recently revised to facilitate cross-cultural adaptation. This study assessed the validity and reliability of version 2.0 of the CHO-KLAT (CHO-KLAT2.0). METHODS: Content validity was assessed via detailed cognitive debriefing to confirm that Canadian boys understood the CHO-KLAT2.0. The measurement properties of the CHO-KLAT2.0 were assessed in comparison to those of the PedsQL, the Haemo-QoL, and two global ratings. Most children completed the CHO-KLAT2.0 a second time to assess test-retest reliability. RESULTS: Cognitive debriefing was completed with 12 boys (age 8.6-17.8 years) and 9 of their parents and resulted in no substantive changes. Sixty boys (mean age 11.8 years) participated in the validation phase, which showed a mean CHO-KLAT2.0 score of 75.4±12.0, strong correlations with the PedsQL (r = 0.62, P<0.001) and Haemo-QoL (r = 0.64, P<0.001), and moderate correlations with global ratings of hemophilia bother (ρ =-0.39, P = 0.002) and health (ρ =-0.47, P = 0.0002). Test-retest concordance was better among parents (0.79) than among boys (0.63). CONCLUSIONS: This study establishes the measurement properties of the CHO-KLAT2.0. The summary scores are very similar to those from the original development study, and thus, these have not been affected by the revisions. These results provide reference standards for comparing data from other countries to the Canadian experience and to estimate sample sizes for future clinical trials.

Quality of life in childhood immune thrombocytopenia: international validation of the kids' ITP tools.

BACKGROUND: The Kids ITP Tools (KIT) is a disease-specific measure of health-related quality of life for children with immune thrombocytopenia (ITP). To facilitate use in international trials it has been cross-culturally adapted for France, Germany, the United Kingdom and Uruguay. This study assessed the validity and reliability of the translated KIT in comparison to generic quality of life measures. METHODS: Children 2-18 years of age with ITP and their parents were recruited in France, Germany, the United Kingdom and Uruguay. Participants completed the KIT, PedsQL and KINDL. We examined the Pearson's correlation between these measures for our pooled sample and estimated the reliability over a 2-week time period. Findings were further explored by country. RESULTS: A total of 127 families (81 children self-reported) participated. Mean child-reported scores were: KIT 74.3 (SD = 15.3), PedsQL 81.3 (SD = 13.0), and KINDL 70.5 (SD = 14.3). Corresponding mean parent proxy-reported scores were: 70.6 (SD = 18.1), 75.7 (SD = 16.8) and 72.3 (SD = 12.7), respectively. Correlation between KIT and the generic measures was consistent with our a priori hypothesis (PedsQL r = 0.54, KINDL r = 0.48, both P < 0.0001). Child KIT scores for newly diagnosed ITP patients were significantly lower than for chronic ITP patients (67.3 vs. 77.3; P = 0.005). There was a significant correlation (P < 0.001) between the child and parent proxy KIT scores (ICC = 0.52). Child KIT test-retest reliability was acceptable at 0.71. CONCLUSIONS: The cross-culturally translated KIT is valid and reliable with acceptable correlation to the PedsQL and KINDL. There is a significant difference in child self-reported KIT scores between newly diagnosed and chronic ITP.

Cross-cultural adaptation of the CHO-KLAT for boys with hemophilia in rural and urban China.

BACKGROUND: Quality of life (QoL) is increasingly recognized as an important outcome measure in clinical trials. The Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT) shows promise for use in China. OBJECTIVE: To adapt the CHO-KLAT version 2.0 for use in clinical trials in China. METHODS: Forward and back translations of the CHO-KLAT2.0 were completed in 2008. Between October 2009 and June 2010, a series of 3 focus groups were held with 20 boys and 31 parents in rural and urban China to elicit additional concepts, important to their QoL, for the Chinese CHO-KLAT2.0. All of the items identified by boys and parents were reviewed by a group of experts, resulting in a Chinese version of the CHO-KLAT2.0. This version underwent a detailed cognitive debriefing process between October 2010 and June 2011. Thirteen patient-parent pairs participated in this cognitive debriefing process until a stable and clearly understood Chinese version of the CHO-KLAT2.0 was obtained. RESULTS: The initial back translation of the Chinese CHO-KLAT2.0 was slightly discrepant from the original English version on 12 items. These were all successfully adjudicated. The focus groups identified 9 new items that formed an add-on Socio-Economic Context (SEC) module for China. Linguistic improvements were made after the 2nd, 5th, 7th and 13th cognitive debriefings pairs and affected a total of 18 items. The result was a 35 item CHO-KLAT2.0 and a SEC module in Simplified Chinese, both of which have good content validity. CONCLUSION: This detailed process proved to be extremely valuable in ensuring the items were accurately interpreted by Chinese boys with hemophilia ages ≤18 years. The need for the additional SEC module highlighted the different context that currently exists in China with regard to hemophilia care as compared to many Western countries, and will be important in tracking progress within both rural and urban China over time. Changes based on the cognitive debriefings suggest that expert verbatim translation alone is not sufficient. The Chinese version of the CHO-KLAT2.0 is well understood by boys with hemophilia in China. Next steps will be to test its construct validity and reliability in boys with hemophilia in China.

Reasons for hospital admissions among youth and young adults with cerebral palsy.

OBJECTIVE: To identify the most common reasons for acute care hospital admissions among youth (age range, 13-17.9y) and young adults (age range, 23-32.9y) with cerebral palsy (CP). DESIGN: We completed a secondary analysis of data from the Canadian Institute for Health Information (CIHI) to determine the most frequently observed reasons for admissions and the associated lengths of stay (LOS). SETTING: Participants were identified from 6 children's treatment centers in Ontario, Canada. PARTICIPANTS: Health records data from youth with CP (n=587) and young adults with CP (n=477) contributed to this study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The most common reasons for hospital admission, relative frequencies of admissions for each reason, and mean LOS were reported. RESULTS: The analysis of CIHI records identified epilepsy and pneumonia as the top 2 reasons for admissions in both age groups. Both age groups were commonly admitted because of infections other than pneumonia and urinary tract infections (UTIs), gastrointestinal (GI) problems such as malabsorption, and mental illness. The reasons that were unique to youth included orthopedic and joint-related issues, other respiratory problems, and scoliosis. In young adults, mental illness was the third most common reason for admission, followed by lower GI or constipation problems, malnutrition or dehydration, upper GI problems, fractures, and UTIs. CONCLUSIONS: This article provides important clinical information that can be used in the training of physicians and health care providers, and to guide future planning of ambulatory care services to support the clinical management of persons with CP over their lifespan.

Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities.

INTRODUCTION: The transition to adulthood is extremely difficult for individuals with disabilities. We sought to explore the specific issue of transition to adult-oriented health care in a Canadian context. METHODS: We conducted semi-structured individual interviews with 15 youth and 15 adults with cerebral palsy, spina bifida, and acquired brain injuries of childhood, and their parents (n = 30). Respondents discussed their health care services, their experience with clinical transition, and contributing factors. We analyzed the transcripts using qualitative methods. RESULTS: All participants identified challenges in transition, including: lack of access to health care; lack of professionals' knowledge; lack of information and uncertainty regarding the transition process. Two solutions were identified: early provision of detailed information and more extensive support throughout the clinical transition process. DISCUSSION: The challenges of clinical transition were universal. More extensive information and support is needed during transition to ensure an efficient move to appropriate adult-oriented health care.

Influences on Catered Event Ordering in a University Workplace: Development and Validation of the Understanding Food Ordering Survey.

PURPOSE: To develop and validate an instrument to identify factors that influence what is ordered for catered events for employees at a large university. DESIGN: Themes derived from focus groups were used to develop a survey. SETTING: A large public university in central Texas. SUBJECTS: Twenty-seven administrative assistants who order food participated in focus groups, 138 completed the survey, and 31 completed the survey a second time. MEASURES: One hundred fourteen-question, 5-point Likert scale survey. ANALYSIS: Principal component analyses explored constructs. Confirmatory factor analysis confirmed structure validity. Test -retest analyses assessed reliability. RESULTS: The final survey, the Understanding Food Ordering Survey (UFO), included 19 items within 3 factors; all factor loadings were above 0.3, with no cross-loadings. Three factors explained 55.5% of the variance. Cronbach α values of .846 for social influences from supervisors/coworkers, .838 for restrictions on ordering due to policies/vendors/attendee feedback, .893 for personal views about nutrition, and .831 for the total affirmed reliability. Test-retest reliability was acceptable ( r = 0.780), and paired samples t test indicated no differences between assessments, mean difference = -0.062, standard deviation = 0.29, t (30) = -1.18, P = .247. Structure equation modeling indicated a good fit between the proposed 3-factor model and observed data, with comparative fit index = 0.921 and root means square error of approximation = 0.074. CONCLUSION: Interventions to improve the nutritional quality of foods selected for catering may benefit from addressing contributory factors while considering a top-down approach to changing the workplace culture.

Reliability of the Aboriginal Children's Health and Well-Being Measure (ACHWM).

PURPOSE: The aim of this research was to evaluate the reliability of the Aboriginal Children's Health and Well-Being Measure© (ACHWM). METHODS: Two cohorts of children from Wiikwemkoong Unceded Territory were recruited for this study. Each child completed the ACHWM independently on a computer tablet running a customized survey app. The data from the first and second cohorts were used to estimate the internal consistencies using Cronbach's alpha. A subgroup of the second cohort completed the survey twice, within the same day. The data from this subgroup was used to evaluate the test-retest reliability using a random effects Intra-class Correlation Coefficient (ICC). RESULTS: There were 124 participants in the first cohort and 132 participants in the second cohort. The repeated measures subgroup was comprised of 29 participants from the second cohort. The internal consistency statistic (Cronbach's alpha) was 0.93 for the first and second cohorts. The test-retest reliability ICC was 0.94 (95% CI 0.86-0.97) for the ACHWM summary scores based on the repeated measures subgroup. CONCLUSIONS: These results establish the internal consistency and the test-retest validity of the ACHWM. This important finding will enable Aboriginal communities to use this measure with confidence and promote the voices of their children in reporting their health. The ACHWM is an essential data gathering tool that enables evidence-based health care for Aboriginal communities.

A process for creating the Aboriginal children's health and well-being measure (ACHWM).

OBJECTIVES: The purpose of this study was to identify concepts of health and well-being important to Aboriginal children and youth. These concepts were necessary for the development of a culturally appropriate measure of health. METHODS: We completed 4 community consultation sessions, 4 advisory committee meetings, and 6 full-day focus groups within the Wikwemikong Unceded Indian Reserve. The focus groups engaged Aboriginal children and youth via relevant cultural teachings, a photography exercise combined with a community bicycling tour, and detailed discussions of health and well-being using photovoice. The process was guided by a conceptual model: the Medicine Wheel. The participants placed their photos on a wall mural and identified their most important concepts. These concepts were synthesized through expert consensus into items and reviewed by the broader community. RESULTS: The participants ranged in age from 8.2 to 17.7 years (mean age=12.3). Through innovative methods, children and youth identified 206 concepts representing the 4 quadrants of the Medicine Wheel: emotional, spiritual, physical and mental. These concepts were refocused, in collaboration with the community, to create a new 60-item measure of health and well-being that was primarily positive in focus. CONCLUSION: This study demonstrates the success of implementing a unique process of photovoice in combination with bicycling and informed by an Aboriginal framework. The results confirm the distinct conceptualization of health and well-being in this population and underscore the necessity for a culturally appropriate measure. This study also produced a first draft of the Aboriginal Children's Health and Well-being Measure (ACHWM).

Sexual transformations and intimate behaviors in romantic relationships.

To understand the association between sexual transformations (i.e., changes in sexual behavior for the partner), intimate behaviors, and relationship quality among couples in romantic relationships, this study used Actor Partner Interdependence Models to examine frequency of sexual transformations, feelings about sexual transformations, and intimate behaviors as predictors of relationship satisfaction among 96 couples (N = 192). Sexual transformations were also examined as a moderator of the association between intimate behavior and relationship satisfaction. Results indicated that relationship satisfaction was positively associated with partners' frequent sexual transformations, actors' positive feelings about sexual transformations, and intimate behavior from the partner. Further, in less intimate relationships, relationship satisfaction was greater when partners reported making more sexual transformations.

What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida.

OBJECTIVES: To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to identify barriers, to outline key elements, to review empirical studies, and to make clinical and research recommendations. DATA SOURCES: We searched Medline and CINAHL databases from 1990 to 2006 using the key words: transition, health care transition, pediatric health care, adult health care, health care access, health care use, chronic illness, special health care needs, and physical disability. The resulting studies were reviewed with a specific focus on clinical transition for persons with CP and SB, and were supplemented with key information from other diagnostic groups. STUDY SELECTION: All studies meeting the inclusion criteria were included. DATA EXTRACTION: Each article classified according to 5 criteria: methodology, diagnostic group, country of study, age group, and sample size. DATA SYNTHESIS: We identified 149 articles: 54 discussion, 21 case series, 28 database or register, 25 qualitative, and 34 survey articles (some included multiple methods). We identified 5 key elements that support a positive transition to adult-centered health care: preparation, flexible timing, care coordination, transition clinic visits, and interested adult-centered health care providers. There was, however, limited empirical evidence to support the impact of these elements. CONCLUSIONS: This review summarizes key factors that must be considered to support this critical clinical transition and sets the foundation for future research. It is time to apply prospective study designs to evaluate transition interventions and determine long-term health outcomes.