Perspectives from primary health care providers on their roles for supporting adolescents and young adults transitioning from pediatric services.

BACKGROUND: Transitioning from pediatric care to adult-oriented care at age 18 (the age of transfer in most countries and jurisdictions) is a complex process for adolescents and young adults affected by chronic physical health and/or mental health conditions. The role of primary health care (PHC) providers for this population is poorly understood. Perspectives from these providers, such as family physicians and other members of the primary care team, have not been explored in depth. METHODS: A total of 18 participants (e.g., family physicians, social workers, nurses) were recruited from 6 Primary Care Networks in Calgary, Alberta, Canada. Semi-structured individual interviews were conducted, and transcribed verbatim. A qualitative description approach was used to analyze the data, and included thematic analysis. RESULTS: Five distinct, yet overlapping, roles of primary health care providers for adolescents and young adults transitioning to adult care resulted from our analysis: (1) being the "common thread" (continuous accessible care); (2) caring for the "whole patient" (comprehensive care); (3) "knowing families" (family-partnered care); (4) "empowering" adolescents and young adults to develop "personal responsibility" (developmentally-appropriate care); and (5) "quarterbacking" care (coordination of specialist and/or community-based care). Participants identified potential benefits of these roles for adolescents and young adults transitioning to adult care, and barriers in practice (e.g., lack of time, having minimal involvement in pediatric care). CONCLUSIONS: Input from family physicians, who follow their patients across the lifespan and provide the majority of primary care in Canada, are critical for informing and refining recommended transition practices. Our findings provide insights, from PHC providers themselves, to bolster the rationale for primary care involvement during transitions from pediatric specialty and community-based care for AYAs. Solutions to overcome barriers for integrating primary care and specialty care for adolescents and young adults need to be identified, and tested, with input from key stakeholders.

Ethical challenges of integration across primary and secondary care: a qualitative and normative analysis.

BACKGROUND: This paper explores ethical concerns arising in healthcare integration. We argue that integration is necessary imperative for meeting contemporary and future healthcare challenges, a far stronger evidence base for the conditions of its effectiveness is required. In particular, given the increasing emphasis at the policy level for the entire healthcare infrastructure to become better integrated, our analysis of the ethical challenges that follow from the logic of integration itself is timely and important and has hitherto received insufficient attention. METHODS: We evaluated an educational intervention which aims to improve child health outcomes by making transitions between primary to secondary care more efficient, ensuring children and parents are better supported throughout. The programme provided skills for trainee paediatricians and general practitioners (GPs) in co-designing integrated clinical services. RESULTS: The key ethical challenges of integrated care that arose from a clinical perspective are: professional identity and autonomy in an integrated working environment; the concomitant extent of professional responsibility in such an environment; and the urgent need for more evidence to be produced on which strategies for integrating at scale can be based. CONCLUSIONS: From our analysis we suggest a tentative way forward, viewed from a normative position broadly situated at the intersection of deontology and care ethics. We adopt this position because the primary clinical ethical issues in the context of integrated care concern: how to ensure that all duties of care to individual patients are met in a newly orientated working environment where clinical responsibility may be ambiguous; and the need to orientate care around the patient by foregrounding their autonomous preferences and ensuring good patient clinician relationships in clinical decision-making.

Readiness for transition and health-care satisfaction in adolescents with complex medical conditions.

BACKGROUND: The purpose of this study is to examine contributions to patient perceptions of transition readiness and satisfaction with care amongst adolescents and young adults (AYAs) with complex health conditions engaging in paediatric care. METHODS: Participants included 94 patients aged 14-20 years (M = 16.41, SD = 1.56) with cystic fibrosis (n = 31), sickle cell disease (n = 27), and solid organ transplants (n = 36). Participants completed self-report questionnaires and medical providers completed measures of their medication regimen complexity. One-way analysis of variance compared differences between disease groups on study variables. Pearson product-moment correlation coefficients and linear regression models evaluated factors associated with AYA reported transition readiness and satisfaction with health care. RESULTS: There were no significant differences between disease groups on patient-reported transition readiness, barriers to medication adherence, health care self-management, or satisfaction. Patient age, self-reported health-care responsibility, medication barriers, and academic performance predicted a large portion of the variance in AYA perceptions of transition readiness (R2  = 0.27, F (4, 83) = 7.74, p < 0.001, Cohen's f2 = 0.37). Patient gender, self-reported health-care responsibility, and medication barriers predicted a medium portion of the variance in AYA satisfaction with health care (R2  = 0.23, F (3, 88) = 8.56, p < 0.001, Cohen's f2 = 0.30). CONCLUSIONS: Patient perceptions of health care self-management and barriers to medication adherence are important predictors of readiness for transition and satisfaction with care. Considering a holistic approach that includes these factors allows for improved understanding of individual needs for transition interventions that can improve adult outcomes for individuals with complex health conditions.

Development of the transition-age program (TAP): Review of a pilot psychosocial multidisciplinary transition program in a Level 4 epilepsy center.

Approximately 50% of patients diagnosed with epilepsy in childhood will need treatment in adulthood. Transition from pediatric to adult epilepsy care is challenging, and an unsuccessful transition can have detrimental effects. Researchers emphasize the importance of addressing possible barriers to transition in a multidisciplinary setting. In this paper, we describe a transition program implemented in a Level 4 epilepsy center in the Midwest. This program involves a psychosocial multidisciplinary team including a pediatric neuropsychologist, pediatric psychologist, and social worker who meet jointly with patient and his/her caregiver(s) before and after the transition. The pretransition visit involves assessment of transition readiness, screening for neurobehavioral comorbidities, provision of education regarding epilepsy care during the transition period, goal-setting, and development of a portable summary. The posttransition visit revisits goals and provides additional individualized recommendations and/or referrals for intervention as clinically indicated. The goal of this program is to facilitate a smooth transition from pediatric to adult providers to ensure optimal epilepsy care and quality of life.

A prospective comparison of cancer clinical trial availability and enrollment among adolescents/young adults treated at an adult cancer hospital or affiliated children's hospital.

BACKGROUND: Low cancer clinical trial (CCT) enrollment may contribute to survival disparities affecting adolescents and young adults (AYAs) (ages 15-39 years). The objective of this study was to evaluate whether differences in CCT availability related to treatment site could explain the low CCT enrollment. METHODS: This prospective, observational cohort study was conducted at an academic children's hospital and its affiliated but geographically separated adult cancer hospital within a National Cancer Institute-designated Comprehensive Cancer Center. For consecutive, newly diagnosed AYA patients, it was determined whether an appropriate CCT existed nationally, was available at the treatment site, and was used for enrollment. Proportions of AYAs in these categories were compared between sites using the chi-square test. RESULTS: One hundred fifty-two consecutive AYA patients were included from the children's hospital (n = 68; ages 15-20 years) and the adult cancer hospital (n = 84; ages 18-39 years). Although there was no difference in CCT existence for individual AYA patients by site (children's hospital [36 of 68 patients; 52.9%] vs adult cancer hospital [45 of 84 patients; 53.6%]; P = .938), CCT availability was significantly lower at the adult cancer hospital (14 of 84 patients [16.7%] vs 30 of 68 [44.1%] at the children's hospital; P < .001). The proportion of AYAs enrolled was low at both sites (8 of 68 patients [11.8%] vs 6 of 84 patients [7.1%], respectively; P = .327). Fewer existing CCTs were available at the adult cancer hospital (4 of 27 patients [14.8%] vs 8 of 14 patients [57.1%], respectively), and those were directed toward solid tumors and new agents. CONCLUSIONS: Efforts to improve low CCT enrollment among AYAs should be differentiated by treatment site. In the adult setting, these efforts should be aimed at improving CCT availability by overcoming site-level barriers to opening existing CCTs.

Transition in Pediatric and Adolescent Hypogonadal Girls: Gynecological Aspects, Estrogen Replacement Therapy, and Contraception.

Hypogonadism may be suspected if puberty is delayed. Pubertal delay may be caused by a normal physiological variant, by primary ovarian insufficiency (Turner syndrome), or reflect congenital hypogonadotropic hypogonadism (HH; genetic) or acquired HH (brain lesions). Any underlying chronic disease like inflammatory bowel disease, celiac disease, malnutrition (anorexia or orthorexia), or excessive physical activity may also result in functional HH. Thus, girls with delayed puberty should be evaluated for an underlying pathology before any treatment, including oral contraception, is initiated. Estrogen replacement is important and natural 17ß-estradiol, preferably transdermally, is the preferred choice, whereas the oral route can be used as an alternative depending on patient preference and compliance. Sexual activity is often delayed in the hypogonadal adolescent girl. In the adolescent hypogonadal girl, hormone replacement therapy (HRT) most likely has been initiated at the time she becomes sexually active. If a risk of unwanted pregnancy cannot be ruled out, there is a need to consider contraception. This consideration does not contradict the principles of HRT but can be included as a part of the substitution, e.g. oral contraceptives containing 17ß-estradiol or a progestogen intrauterine device combined with continuous 17ß-estradiol (transdermal or oral).

Fertility Preservation in Klinefelter Syndrome Patients during the Transition Period.

Spermatozoa have occasionally been identified in ejaculate of adult Klinefelter syndrome (KS) patients but very exceptionally in KS adolescents. Spermatozoa can also be retrieved in testicular tissue of KS adolescents. The testis may also harbor spermatogonia and noncompletely differentiated germ cells. Neither clinical features nor hormonal parameters could predict germ cell recovery in KS adults or adolescents. No predictive factors can actually demonstrate that early diagnosis of KS would allow increasing the chance of sperm retrieval even if it has been suggested that semen quality may decline with age in KS patients. Leydig cell dysfunction may also be another factor that might affect the spermatogenesis process in XXY adolescents. Fertility preservation might be preferentially proposed in KS adolescents when semen sampling is possible, when the patient is able to consider alternative options to become a father, and to accept germ cell retrieval failure. However, precocious diagnosis of KS has also to be considered because it might not solely improve the possibility of fertility preservation after the onset of puberty, but also the medical care and the quality of life of these patients.

Implementation of an inter-agency transition model for youth with spina bifida.

BACKGROUND: To address gaps in transfer of care and transition support, a paediatric hospital and adult community health care centre partnered to implement an inter-agency transition model for youth with spina bifida. Our objective was to understand the enablers and challenges experienced in the implementation of the model. METHODS: Using a descriptive, qualitative design, we conducted semi-structured interviews, in-person or over the phone, with 12 clinicians and nine key informants involved in implementing the spina bifida transition model. We recruited all 21 participants from an urban area of Ontario, Canada. RESULTS: Clinicians and key informants experienced several enablers and challenges in implementing the spina bifida transition model. Enablers included dedicated leadership, advocacy, funding, inter-agency partnerships, cross-appointed staff and gaps in co-ordinated care to connect youth to adult services. Challenges included gaps in the availability of adult specialty services, limited geographical catchment of adult services, limited engagement of front-line staff, gaps in communication and role clarity. CONCLUSIONS: Although the transition model has realized some initial successes, there are still many challenges to overcome in transferring youth with spina bifida to adult health care and transitioning to adulthood.

Delivery of epilepsy care to adults with intellectual and developmental disabilities.

Epilepsy is common in people with intellectual and developmental disabilities (IDD). In adulthood, patients with IDD and epilepsy (IDD-E) have neurologic, psychiatric, medical, and social challenges compounded by fragmented and limited care. With increasing neurologic disability, there is a higher frequency of epilepsy, especially symptomatic generalized and treatment-resistant epilepsies. The causes of IDD-E are increasingly recognized to be genetic based on chromosomal microarray analysis to identify copy number variants, gene panels (epilepsy, autism spectrum disorder, intellectual disability), and whole-exome sequencing. A specific genetic diagnosis may guide care by pointing to comorbid disorders and best therapy. Therapy to control seizures should be individualized, with drug selection based on seizure types, epilepsy syndrome, concomitant medications, and comorbid disorders. There are limited comparative antiepileptic drug data in the IDD-E population. Vagus nerve and responsive neural stimulation therapies and resective surgery should be considered. Among the many comorbid disorders that affect patients with IDD-E, psychiatric and sleep disorders are common but often unrecognized and typically not treated. Transition from holistic and coordinated pediatric to adult care is often a vulnerable period. Communication among adult health care providers is complex but essential to ensure best care when these patients are seen in outpatient, emergency room, and inpatient settings. We propose specific recommendations for minimum care standards for people with IDD-E.

Healthcare transition challenges faced by young adults with autism spectrum disorder.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder that impacts communicative interactions, with patterns of repetitive and restricted behaviors, interests, and cognitive rigidity. Recent incidence rate estimates for ASD are 1 in 68, and primarily male (4:1). A major epidemiological issue in ASD is transitioning to independence in adulthood, particularly navigating the healthcare system. This commentary will focus on approaches healthcare providers can use to not overlook and support individuals with ASD.

Resilience and Transitioning to Adulthood among Emerging Adults with Disabilities.

Transitioning to adulthood is not without challenges. The move away from family influence towards independence and self-determination is filled with uncertainty. Increased challenges and vulnerabilities in transitioning are evident among emerging adults with disabilities because they face additional challenges related to their disability over and above what others of this developmental stage experience. The purpose of this convergent parallel mixed methods study was to understand resilience in a select group of emerging adults with disabilities, who have been recognized for their accomplishments, as they are transitioning to adulthood. Quantitative instruments were used to measure the relationship among resilience, physical health, mental health, satisfaction with life, future orientation, and social support resources, while a qualitative focus group and individual interviews further explored the central phenomenon of resilience. This study revealed transitioning goals and values, challenges encountered while transitioning, and key attributes of resilience that have aided in transitioning. Findings conclude that resilience mitigates adversity and facilitates transitioning, the capacity for resilience is well within reach, and resilience comes from a variety of individual and environmental attributes. Nurses care for individuals and are uniquely present to intervene throughout all stages of the transitioning process. Knowing which resilient attributes are most effective in facilitating transitioning would be especially useful in the development of preventative holistic patient-centered nursing interventions. The research and practice implications of this study may suggest that resilience is a viable concept for the development of strength-based, patient-centered nursing interventions that facilitate transitioning.

Integrating an EMR-based Transition Planning Tool for CYSHCN at a Children's Hospital: A Quality Improvement Project to Increase Provider Use and Satisfaction.

An electronic medical record (EMR)-based transition planning tool (TPT) designed to facilitate transition from pediatric to adult-based health care for youth (16-25 years) with special health care needs was introduced at a large children's hospital. Activities to increase provider use were implemented in five plan-do-study-act cycles. Overall, 22 of 25 (88%) consenting providers in four pediatric subspecialty services used the TPT during 303 patient encounters, with nurses and case-managers the top users and physicians the least likely users. Use was highest with intensive technical assistance and following the introduction of an upgraded tool. Provider satisfaction with the TPT and self-reported transition planning activities notably increased across the PDSA cycles.

Transition to Adulthood for Young People with Medical Complexity: An Integrative Literature Review.

This article explores how the empirical literature on the transition to adulthood for young people with medical complexity can inform nursing and advanced practice nursing. An integrative literature review informed by Meleis' Transition Theory and Bronfenbrenner's Bioecological Theory of Human Development was conducted including 11 studies and yielded three themes: it's like falling off a cliff, the paradox of independence, and it takes a village. The findings demonstrated a need for an increased focus on the process of transition and transfer for this complex population. Recommendations for pediatric nurses and advanced practice nurses based on these findings focus on advocacy, capacity-building, education, and program development and evaluation. Recommendations for future research are offered with a focus on determinants of health, psychosocial concerns, and program development and evaluation.

Transition, It's More Than Just An Event: Supporting Young People With Type 1 Diabetes.

This paper discusses the importance of holistic person-centered care coordination services for young people with type 1 diabetes as they transition to adult health services. In response to the growing need for comprehensive, flexible, person-centered care for young people with chronic conditions, the new service Trapeze: a supported leap into adult health was established. Based in Sydney, Australia, Trapeze is a specialist adolescent chronic care service offering comprehensive care coordination services to young people with chronic conditions aged 14-25 years. Trapeze aims to support young people with type 1 diabetes by focusing on the individual needs of the young person and developing a mutually recognized relationship based on trust and respect, in order to facilitate a process whereby a young person feels safe enough to discuss some of the challenges they face in self-management, keeping their whole of life issues central to this process. The importance of holistic person-centered work is best exemplified through the stories of the young people enrolled in Trapeze. It is hoped that through the 'eyes' of the young people and by sharing their stories the approach to self-management and care coordination can be better understood.

A complex transition: lessons learned as three young adults with complex care needs transition from an inpatient paediatric hospital to adult community residences.

BACKGROUND: Whether young adults with complex care needs live at home with their family, in institutional or group home settings finding appropriate care as they transition from paediatric to adult systems can be difficult. Our objective was to understand the experiences, barriers and enablers entailed in transitioning three young adults with complex care needs from an institutional paediatric hospital setting to an adult community residence. METHOD: A descriptive design involving in-depth, semi-structured, qualitative interviews and a review of 14 h of meeting minutes. Interviews were conducted over the phone, in participants' homes, and at a paediatric rehabilitation hospital. Twenty-three participants, including 10 clinicians, 11 community partners, two young adults (21-23 years old) with complex care needs from [metropolitan area] Ontario, Canada. RESULTS: Our findings indicate that clinicians, community partners and young adults with complex care needs encountered several enablers and barriers influencing their transition from a paediatric hospital to adult supportive housing. Enablers included structural factors (leadership, advocacy, timing/funding), availability of care (inter-agency partnerships), organization of care (model of care, inter-professional teamwork, extension of roles), and relational factors (communication, development of trust and rapport, family involvement). Barriers included structural factors (timing, funding), availability of care (appropriateness of housing), organization of care (changes in model of care, teamwork, role clarity), relational factors (communication, trust/rapport, family involvement) and personal factors (transition readiness). CONCLUSIONS: There are several challenges to overcome in preparing long-term hospitalized young adults with complex care needs to transition to adult supportive housing; however, these challenges may be overcome with targeted supports in several key areas.

[Berlin transition program: from adolescents to adults in rheumatology treatment]. / Berliner TransitionsProgramm: Vom Jugendlichen zum Erwachsenen in der rheumatologischen Behandlung.

BACKGROUND: Transition is a crucial bridge between pediatric and adult rheumatology care and yet is often not a priority in either discipline. There is adequate evidence for the need of specific transition services. Various measures and transition programs have been proposed to support care during transition to adulthood; however, the implementation of youth-friendly services including transitional care has been frustratingly slow. Many structural and psychosocial barriers exist and prevent the widespread implementation of health transition support. Transition is resource consuming. It requires a reorganization of work flow to accommodate a clear, well-documented transitional pathway, including sufficiently long consultation times, age-appropriate communication, addressing of age-specific topics and a close cooperation between pediatric and adult rheumatologists. OBJECTIVES: This article presents the Berlin transition program (BTP) and its development. RESULTS AND PERSPECTIVES: The BTP presented here is the first structured transition program financed by statutory health insurances in Germany. Since January 2013 it can be used for patients with rheumatic and musculoskeletal diseases in some regions of Germany. The BTP supports care at transfer; however, it cannot guarantee a successful transition. There is a need to make the BTP available nationwide and to evaluate its effectiveness. This could be a precondition to recognize transition services as part of regular healthcare.

Adolescent views on transition in diabetes and nephrology.

UNLABELLED: Managing the transition of adolescents from paediatric to adult care is complex and remains an important challenge. This aim of this study was to synthesize studies on perspective on transition to adult care among young people with diabetes or chronic kidney disease. We conducted a systematic review of surveys and qualitative studies that explored adolescent perspectives on transition to adult care in diabetes and chronic kidney disease. Searches were conducted to week 4, June 2010. For quantitative questionnaires, all items were mapped into a domain schema. Thematic synthesis of the qualitative findings was performed. Fourteen studies involving 854 respondents were included. The majority of participants felt somewhat prepared but had reservations about transfer. Five major themes were identified: (1) preparedness (timing of transfer, access to providers, parental involvement), (2) overwhelmed by an impersonal environment in adult service (sterile and unwelcoming, navigating new processes, feeling displaced), (3) independence (developing self-esteem and an adult identity, taking responsibility and ownership), (4) valuing familiarity (building trust, peer support) and (5) service and information needs (leniency, lack of access, efficiency, information needs). CONCLUSION: Holistic and adolescent focussed transition programs are needed which address adolescent needs by providing adequate access to health services, encouraging independence and ownership of health management, promoting trust in providers, giving comprehensive information about what to expect and how to navigate adult services and facilitating interaction with younger patients.