Transition and transfer of childhood cancer survivors to adult care: A national survey of pediatric oncologists.

BACKGROUND: Pediatric oncologists are responsible for ensuring that adolescent and young adult (AYA) childhood cancer survivors have the knowledge and skills necessary to manage their follow-up care in adult healthcare systems. PROCEDURES: To describe transition practices and barriers to transfer, we electronically surveyed U.S. Children's Oncology Group members: 507/1449 responded (35%) and 347/507 (68%) met eligibility criteria. RESULTS: Of 347 respondents, 50% are male, median years in practice 10 (range 5-22), 37% practice in freestanding children's hospitals. Almost all care for survivors up to age 21 years (96%), 42% care for survivors over age 25 years, and only 16% over age 30 years. While 66% of oncologists reported providing transition education to their patients, very few (8%) reported using standardized transition assessments. The most frequent barriers to transfer were perceived attachment to provider (91%), lack of adult providers with cancer survivor expertise (86%), patient's cognitive delay (81%), or unstable social situation (80%). Oncologists who continue to care for patients older than 25 years are more likely to perceive parents' attachment to provider (P = 0.037) and patients' social situation as barriers to transfer (P = 0.044).  Four themes emerged from a content analysis of 75 respondents to the open-ended question inviting comments on transition/transfer practices: desire for flexible transfer criteria; providers as barriers; provider lack of transition knowledge, skills, and resources; and desire for collaboration. CONCLUSIONS: Although most pediatric oncologists reported transferring AYA cancer survivors to adult care and providing some transition education, they endorse deficits in transition skills, emotional readiness, and institutional resources.

Charting the Course for a Nursing Online Journal Club: Part II.

In a pediatric inpatient setting, an interdisciplinary team designed and implemented an online journal club to discuss current nursing trends and research, as well as to foster evidence-based practice. This article is Part II of a two-part series in which the implementation process is described.

Transition of pediatric patients to adult care: an analysis of provider perceptions across discipline and role.

The importance of successfully transitioning pediatric patients to adult care is increasingly recognized as more children with chronic diseases are living to adulthood. The aim of this study was to investigate the current state of provider perceptions across disciplines regarding transition of pediatric patients to adult care. Focus groups made up of providers of various roles and experience levels were conducted. A total of six major themes were identified. We conclude that pediatric providers share common concerns about transitioning pediatric patients to adult care. We reinforce many of the issues raised in the literature and also discuss a sense of professional ego that was identified as a barrier to successful transition, which is not widely reported in other studies.

Transition and transfer of adolescents and young adults with pediatric onset chronic disease: the patient and parent perspective.

PURPOSE: To determine patients' and parents' perceptions regarding the delivery of transition education and perceived barriers to transfer to adult oriented care. METHODS: A self-report survey was administered to a convenience sample of patients (16-25 years old) with various childhood onset chronic diseases. A similar survey was administered to their parents/guardians. RESULTS: A total of 155 patients and 104 parents participated in the study. The mean age of patients was 18.8 ± 2.3 years; 57% were female. Although most patients and parents reported receiving information and training about their medical condition, significant gaps in other aspects of transition education were identified. These included stated deficiencies in education regarding unprotected intercourse, health of future offspring, birth control, pregnancy, illicit drug use, and future career or vocation counseling. Commonly cited barriers to transfer were emotional attachments and lack of adult medicine specialty providers; however, the majority anticipated being ready to transfer to adult oriented care by age 25 years. CONCLUSION: There are significant gaps in the delivery of transition education as perceived by patients and their parents. Standardization of transition education may help ensure that patients acquire the knowledge and skills for health care self-management in adulthood and successful transfer to adult oriented care.

Perceptions of solid organ transplant recipients regarding self-care management and transitioning.

Negative outcomes are consistently reported when adolescent solid organ transplant recipients are transitioned to adult transplant programs. The purpose of this quality improvement project was to understand the perceptions of patients and their parents about self-care management at transition. Solid organ transplant recipients, 16 to 22 years of age (n = 10), in a 396-bed pediatric hospital in the northeastern United States and their parents (n = 10) completed semi-structured interviews regarding health, transplant history, and participants' thoughts and feelings related to transitioning to adult transplant centers. Qualitative data were analyzed using the phenomenological method with NVIVO software to identify themes across interviews. Themes included negative perceptions of adult transplant centers due to anxiety regarding the competencies of new providers in caring for the child's medical needs, unfamiliarity with adult medical providers, fear of letting go and assuming greater responsibility, and discrepancies between providers, parents, and patients. Clinical implications are discussed, including the creation of a pediatric transition clinic and strategies for providers to promote self-care management among patients.

Referral patterns and perceived barriers to adult congenital heart disease care: results of a survey of U.S. pediatric cardiologists.

OBJECTIVES: This study sought to elucidate referral patterns and barriers to adult congenital heart disease (ACHD) care, as perceived by pediatric cardiologists (PCs). BACKGROUND: Management guidelines recommend that care of adults with moderate/complex congenital heart disease be guided by clinicians trained in ACHD. METHODS: A cross-sectional survey was distributed to randomly selected U.S. PCs. RESULTS: Overall response rate was 48% (291 of 610); 88% (257 of 291) of respondents met inclusion criteria (outpatient care to patients >11 years of age). Participants were in practice for 18.2 ± 10.7 years; 70% were male, and 72% were affiliated with an academic institution; 79% stated that they provide care to adults (>18 years). The most commonly perceived patient characteristic prompting referral to ACHD care was adult comorbidities (83%). The most perceived barrier to ACHD care was emotional attachment of parents and patients to the PC (87% and 86%, respectively). Clinician attachment to the patient/family was indicated as a barrier by 70% of PCs and was more commonly identified by responders with an academic institutional affiliation (p = 0.001). A lack of qualified ACHD care providers was noted by 76% of PCs. Those affiliated with an academic institution were less likely to identify this barrier to ACHD care (p = 0.002). CONCLUSIONS: Most PC respondents in the United States provide care to ACHD patients. Common triggers that prompt referral and perceived barriers to ACHD care were identified. These findings might assist ACHD programs in developing strategies to identify and retain patients, improve collaborative care, and address emotional needs during the transition and transfer process.