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The goal of this study was to examine factors associated with receiving health care transition counseling services as reported by young adults.
We analyzed data from the 2007 Survey of Adult Transition and Health, a nationwide survey of young adults aged 19 to 23 years conducted by the National Center for Health Statistics, to explore self-reported...
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Long-term services and supports (LTSS), delivered by home and community-based services [HCBS], assisted living facilities [ALF] and nursing homes [NH]), are provided to nearly six million frail older adults in the US. Physical and cognitive decline are common among LTSS recipients. However, predictors of health care transitions (i.e., to hospitals,...
Objective:
We examined the self-reported preparedness of hospitalized adolescent and young adults (AYA) for transition from pediatric to adult-oriented health care in regards to; (1) previous health care transition (HCT) preparation; (2) Self-Determination Theory (SDT) constructs of health self-management autonomy and competence and (3) their perc...
Citations
... Research has shown that the HCT process among AYA with special healthcare needs has been disorganized and at times results in a lack of appropriate insurance coverage and decreased access to adequate healthcare. [6][7][8][9][10][11] Further, underdeveloped health-related self-management skills have been observed in association with a decline in health, as well as poorer outcomes compared to the general population regarding education, employment, and socioeconomic status. 11 Improvements in HCT for AYA with special healthcare needs are needed to eliminate gaps in medical care and improve health outcomes, as well as general quality of life. ...
Health care transition, or HCT, is the process of adolescents and young adults moving from a child/family-centered model of health care to an adult/patient-centered model of health care. Healthcare providers have an essential role in this process which can be especially challenging for individuals with medical or special healthcare needs. Neurofibromatosis type 1 (NF1) is a complex multisystem disorder requiring lifelong medical surveillance, education, and psychosocial support. This review highlights the transition needs of NF1 patients and provides resources for both clinicians and families to facilitate HCT in this population. The authors propose a framework for the development of an effective NF1 transition program by using the Six Core Elements model of the Got Transition program, reviewing existing literature, and incorporating author experiences in the care and transition of NF1 patients.
... Despite increased attention to high-quality transition care, measuring preparation for transition and evaluating transfer outcomes remain challenging. While several instruments have been developed to evaluate AYA preparation for and/or readiness for transition to adult care [14][15][16][17], these have not been previously correlated with transfer outcomes among youth with rheumatologic diseases. Additionally, owing to the difficulty of assessing effective transition, many interventions have been evaluated with measures of patient or provider satisfaction rather than objective measures of successful transfer [7,8], especially in care settings where pediatric and adult specialists are not part of the same integrated healthcare organization. ...
Adolescents and young adults (AYA) with rheumatologic diseases are at high risk for poor outcomes and gaps in care when transitioning from pediatric to adult care. However, tools for evaluating transition readiness and assessing the impact of transition interventions are limited. We implemented a written transition policy at our pediatric rheumatology center and evaluated preparation for transition among AYA 16 and older before and after distribution. 31 of 77 patients completed the follow-up survey (response rate 40%). Patient report of transition counseling increased following written transition policy implementation, though these results were not statistically significant in our small cohort. Most follow-up respondents (n = 19, 61%) had not yet completed care transfer; 4 (13%) had arranged a visit with an adult rheumatologist and 8 (26%) had fully transitioned to adult care. Those who successfully completed care transfer were older, had completed higher levels of education, and had significantly higher baseline transition preparation scores compared to those with no transfer arranged or planned visit only. Our single-center pilot study demonstrated that longitudinal assessment of transition preparation is feasible and that scores are significantly associated with care transfer outcomes. Tracking transition preparation over time may provide practices with information on areas of highest need for transition guidance and predict successful transfer among AYA with rheumatologic disease.
... Successful transition may prevent or minimize the effects of adverse events and improve quality of life by enhancing autonomy, increasing personal responsibility, and facilitating self-reliance (Blum et al., 1993;Butcher et al., 2012;Romelczyk et al., 2015;Rosen, Blum, Britto, Sawyer, & Siegel, 2003;Sawicki et al., 2011). ...
The goal of this practice resource is to provide genetic counselors and other healthcare professionals with a resource to reference when providing genetic counseling services to individuals and families undergoing evaluation for neurofibromatosis (NF) or who have received a diagnosis of NF, including NF1, NF2, and schwannomatosis. This resource represents the opinions of a multi‐center working group of Certified Genetic Counselors with experience in the care of individuals with NF, providing topics to be considered for the incorporation into a clinical genetic counseling session.
... [353][354][355] Early development of staged and timely transition processes and programs geared toward education, and modifiable for individualized patient diagnosis and complicit concerns, is greatly needed. [356][357][358][359][360] It is recommended that education through accurate dissemination of information begin at an early stage in the patient healthcare process and directly involve caregivers, providers, support staff, and the patient. 351,[361][362][363] Patients with NMDs are likely to benefit from a coordinator-directed, multidisciplinary team approach, which can provide important support in negotiating communication gaps between providers and enable a systematic clinical transition and education process on health, adult care providers, facilities, and financial and medical resources. ...
For many neuromuscular diseases (NMDs), cardiac disease represents a major cause of morbidity and mortality. The management of cardiac disease in NMDs is made challenging by the broad clinical heterogeneity that exists among many NMDs and by limited knowledge about disease-specific cardiovascular pathogenesis and course-modifying interventions. The overlay of compromise in peripheral muscle function and other organ systems, such as the lungs, also makes the simple application of endorsed adult or pediatric heart failure guidelines to the NMD population problematic. In this statement, we provide background on several NMDs in which there is cardiac involvement, highlighting unique features of NMD-associated myocardial disease that require clinicians to tailor their approach to prevention and treatment of heart failure. Undoubtedly, further investigations are required to best inform future guidelines on NMD-specific cardiovascular health risks, treatments, and outcomes.
... An exception is the 2007 Survey of Adolescent Transition and Health, which targeted young adults aged 19e23 years. Even in this survey, less than half of respondents reported receiving counseling around transition [7]. ...
... Other surveys of transition preparation have been either skills assessments or based on parent reports of HCT preparation. Available surveys of young adults after transfer of care have generally included a small set of questions regarding counseling on transition preparation [7]. Although youth-reported HCT readiness instruments such as the TRAQ exist, they primarily evaluate self-reported skills and do not assess whether counseling on such skills was received within the health care system [12]. ...
Background:
Parents of children with chronic illness consistently report suboptimal preparation for transition from pediatric- to adult-focused health care. Little data are available on transition preparation for low-income youth in particular.
Methods:
We conducted a mailed survey of youth with chronic illness enrolled in 2 large Medicaid health plans to determine the quality of transition preparation using the Adolescent Assessment of Preparation for Transition (ADAPT). ADAPT is a new 26-item survey designed for 16- to 17-year-old youth to report on the quality of health care transition preparation they received from medical providers. ADAPT generates composite scores (possible range: 0%-100%) in 3 domains: counseling on transition self-management, counseling on prescription medication, and transfer planning. We examined differences in ADAPT scores based on clinical and demographic characteristics.
Results:
Among 780 and 575 respondents enrolled in the 2 health plans, respectively, scores in all domains reflected deficiencies in transition preparation. The highest scores were observed in counseling on prescription medication (57% and 58% in the 2 plans, respectively), and lower scores were seen for counseling on transition self-management (36% and 30%, respectively) and transfer planning (5% and 4%, respectively). There were no significant differences in composite scores by health plan, sex, or type of chronic health condition.
Conclusions:
The ADAPT survey, a novel youth-reported patient experience measure, documented substantial gaps in the quality of transition preparation for adolescents with chronic health conditions in 2 diverse Medicaid populations.
... Meet with the child independently beginning in early adolescence; meet jointly with parent(s) and adolescent (Madan et al., 2014 ) Readiness for transfer Measure disease management including knowledge and skills; use results to guide remediation and transition Lack of disease knowledge and skills, poor adherence Assess knowledge, skills, and adherence regularly, and remediate (Quittner, Alpern, & Blackwell, 2012; Sawicki et al., 2011 Include child early and often in the management of their disease to independence and competence (Flume, 2009 ) Discuss health insurance and systemrelated issues with family; include adolescents in discussions parents and providers Encourage children and adolescents to bring questions to clinic. ...
... Gradually transition from pediatric care to adult care. Begin discussion of transfer in late primary school years (Tuchman et al., 2010; Pai & Schwartz, 2011 Patient, pediatric provider, and adult provider meet before transfer to establish similarities and differences between pediatric and adult care and to "transfer trust" from the pediatric to the adult provider (Madan et al., 2014 ) Create a transfer plan so that the parent, child, and provider are adequately prepared for the transfer to adult care (Sawicki et al., 2011 ) CF impedes normative transitions ...
Cystic fibrosis (CF) is a life-shortening and recessive genetic disorder that affects approximately 1 in 2500 live births worldwide. The disorder affects the functions of multiple organs including the lungs, pancreas, liver, and reproductive system and requires adherence to a time-consuming and burdensome treatment regimen. This chapter reviews literature regarding adherence to this treatment regimen, the role of the family in treatment adherence, the impact of CF on family functioning and psychological health, the effect of infection control guidelines on CF patient social support and functioning, and the processes associated with the transition from pediatric to adult care. Empirically evaluated interventions targeting each of these challenges are discussed. Reviewed literature points to the importance of: 1) considering the changing needs of individuals with CF in light of developments in medical practices and policy, 2) the need for supportive interventions for families and individuals with CF to improve family functioning, 3) treatment adherence and mental health, and 4) the necessity of programs that facilitate the transition of treatment responsibility from parents to their children with CF.
... Specifically, although most of the respondents in the PEDS group had discussed general diabetes self-management with their providers, 59% had discussed prescription refills and appointment scheduling, 55% had reviewed the need to transition or a specific transition plan, and ,20% had received any written transition materials. These findings are similar to data from the 2007 Survey of Adolescent Transition and Health, in which approximately half of a national sample of patients aged 19-23 years with chronic health conditions reported receiving counseling around transition (26). In a 2014 study of 50 younger teens with type 1 diabetes (average age 16 years), 40% had discussed transition with their pediatric diabetes teams (20). ...
Objective:
Young adults with type 1 diabetes transitioning from pediatric to adult care are at risk for adverse outcomes. We developed a survey to evaluate transition experiences in two groups of young adults with type 1 diabetes, before (PEDS) and after (ADULT) transition to adult care.
Research design and methods:
We fielded an electronic survey to young adults (18-<30 years) at 60 T1D Exchange Clinic Registry centers.
Results:
Surveys were completed by 602 young adults, 303 in the PEDS group (60% female, age 20 ± 2 years) and 299 in the ADULT group (62% female, age 24 ± 3 years). In the PEDS group, mean anticipated transition age was 22 ± 2 years; 64% remained in pediatric care because of emotional attachment to the provider. The ADULT group transitioned at age 19 ± 2 years, mainly after pediatric provider recommendation. More than 80% of respondents reported receiving counseling on type 1 diabetes self-management and screening tests from pediatric providers, but less than half (43% PEDS and 33% ADULT) reported discussing reproductive health. In the PEDS group, half had discussed transfer with pediatric providers. Of the ADULT participants, 63% received an adult provider referral, and 66% felt mostly/completely prepared to transition. ADULT participants with fewer pretransition pediatric visits or who felt unprepared for transition had increased odds of gaps >6 months between pediatric and adult care. Receipt of transition preparation counseling was not associated with self-reported hemoglobin A1c <7.0% in either group.
Conclusions:
These results support the need for intensive efforts to integrate transition preparation counseling and care coordination into pediatric type 1 diabetes care.
... However, research conducted on transition medicine following the publication of these guidelines have found mixed results (Bloom et al., 2012). Although researchers and clinicians agree that transition medicine should be tailored to each individual patient, continue to evaluate the adolescent's self-management abilities, and that the process should start early (Al-Yateem, 2013), large scale surveys of youth with special healthcare needs found that between only 21.6 to 40.0 percent report meeting these transitional goals (McManus et al., 2013;Oswald et al., 2013;Sawicki et al., 2011). ...
... To measure transitional readiness, a modified version of the Transition Readiness Assessment Questionnaire (TRAQ) was used (Sawicki et al., 2011). The TRAQ was developed to assess the readiness of young adults with special health care needs to transition to adult healthcare services and independent living. ...
The Institute of Medicine places the patient at the center of their high-quality cancer care conceptual framework, arguing that supporting patient engagement within the cancer setting is the highest priority for the improvement of cancer care. Adolescent cancer patients make up a unique cancer group due to tumor biology, specific cancer-related challenges, and social and cognitive factors unique to this developmental period. Within adolescent oncology, there are two main approaches for achieving high-quality care and increased patient engagement – patient-centered care and family-centered care. The current study examined a sample of 80 adolescent cancer patients, and determined how engagement is associated with self-reported quality of care, and the moderating roles of models of care, patient age, and development. A cross-sectional survey design was utilized, and participants were recruited in-person at two metropolitan hospitals. Participants recruited for this study were diagnosed with their most recent cancer diagnosis between the ages of 10 and 20, were at least 3 months from their most recent diagnosis, and had finished active treatment in the last two years (if they were not currently receiving treatment). Overall, the study found no significant relationship between patient engagement and quality of care, and models of care and patient’s age and development did not moderate this relationship. However, both patient-centered care and cognitive development were significant predictors of quality of care. Participants reported experiencing patient-centered care more often than family-centered care, but family-centered care was significantly correlated with patient engagement. Finally, cognitive development was the only unique, significant predictor of patient engagement in the current study. These findings demonstrate the necessity of examining adolescent cancer patients as their own unique group. Patient engagement does not play the same role in adolescents’ perceptions of quality of care as we see in adults. Future research will need to further elucidate what aspects of their experience are important in improving quality of cancer care in adolescent cancer patients. The examination of developmental metrics was a novel aspect of the current study, and it exemplified the importance of development in adolescent cancer patients’ experience, but also the need to examine multiple developmental metrics.
... There were signifi cant disparities by race [ 19 ]. Analysis of the 2007 Survey of Adult Transition and Health, a nationwide survey of young adults aged 19-23 years [ 20 ], showed only about half of young adults reported receiving advice from their pediatricians regarding how their needs would change with age, or how to keep health insurance as an adult, or how to obtain an adult health care provider. A national survey of fellows of the American Academy of Pediatrics in 2008 found that a minority of pediatricians provided key transition support services to all families of children with special health care needs [ 21 ]. ...
Health care transition is defined as the planned movement from a pediatric health care system to an adult-serving health care system during the years of adolescence and young adulthood. Health care transition for youth and adults with intellectual and developmental disabilities (IDD) may be a long and complex process. It is currently frequently unsuccessful due to barriers in both the pediatric and the adult health care systems, resulting in lack of access to appropriate care, worsening of health conditions and function and potentially preventable hospitalizations for the young adult with IDD. Both pediatric and adult health care systems should promote self-determination with respect to health and health care and independence in youth and young adults with IDD. Moreover, health providers should be aware of and refer individuals to social services that can support vocational, independent and other skills needed for transition to adulthood. This requires that health care providers for children and adults become familiar with special services and supports in the school, community and through the state agencies (Medicaid Waiver program) to support transition for youth and young adults with IDD.
... Unfortunately, a survey of almost 2000 young adults with a variety of health conditions revealed that only 55% recalled discussing with their health care providers how their needs would change as they aged. 14 Absences from and lapses in specialized CHD care are unfortunately common. In a multisite American study that included almost 1000 adults with CHD, 42% of patients had a lapse in care of 3 years or longer. ...
Most infants born with congenital heart disease (CHD) are now expected to reach adulthood. However, adults with CHD of moderate or great complexity remain at elevated risk of heart failure, arrhythmias, additional surgeries and interventional procedures, and premature mortality. This creates a need for lifelong specialized cardiac care and leads to 2 sets of potential challenges: (1) the transition from pediatric to adult care and (2) the psychosocial implications of coping with a chronic and often life-shortening medical condition. Many adolescents struggle with the transition to adult care, and mood and anxiety disorders are not uncommon in the adult setting.
