Health Care Transition Research Articles

'It increases my ability to influence my ways of working': A qualitative study on digitally mediated patient management in primary healthcare.

Digitally mediated primary healthcare is increasingly influencing working conditions, raising questions about how digitally mediated patient management is experienced. The aim of this study was to generate insights, through the lens of postphenomenology, into how digitally mediated primary healthcare affects the work and working environment, by gathering perspectives from primary healthcare professionals who regularly manage patient errands through a digital platform. Two rounds of interviews were conducted with a diversified sample of primary healthcare professionals at a primary healthcare centre. The first round of interviews was conducted during the initial phase of the deployment of a digital platform for patient management, with the second round conducted a year later (n=24). The interview transcripts were analysed using reflexive thematic analysis. Four themes relating to digitally mediated care work were identified: 'positive feelings towards digitally mediated primary healthcare', 'seeing a positive work atmosphere as a prerequisite for change', 'experiencing increased control over the pace of workflow' and 'reconfiguration of previous problems'. Building on postphenomenology, our study adds to the understanding of how material and symbolic aspects mutually affect the mediating role of a digital platform for patient management. Thus, the results indicate that the experience of using digitally mediated care processes is conditioned by the discourse towards digitalisation at the workplace and the management's approach to and inclusion of employees in the digital transition of primary healthcare, as well as the usefulness and usability of the digital platform. The findings can inform both practice and policy.

Health Care Transition for Adolescents and Young Adults With Pediatric-Onset Liver Disease and Transplantation: A Position Paper by the North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition.

Advances in medical therapies and liver transplantation have resulted in a greater number of pediatric patients reaching young adulthood. However, there is an increased risk for medical complications and morbidity surrounding transfer from pediatric to adult hepatology and transplant services. Health care transition (HCT) is the process of moving from a child/family-centered model of care to an adult or patient-centered model of health care. Successful HCT requires a partnership between pediatric and adult providers across all disciplines resulting in a transition process that does not end at the time of transfer but continues throughout early adulthood. Joint consensus guidelines in collaboration with the American Society of Transplantation are presented to facilitate the adoption of a structured, multidisciplinary approach to transition planning utilizing The Six Core Elements of Health Care Transition TM for use by both pediatric and adult specialists. This paper provides guidance and seeks support for the implementation of an HCT program which spans across both pediatric and adult hepatology and transplant centers.

Factors Surrounding the Healthcare Transition From Pediatric to Adult Care in 5p- Syndrome: A Survey Among Healthcare Professionals.

BackgroundThe 5p- syndrome is associated with intellectual disturbance and physical complications from infancy, and patients continue treatment into adulthood. This study aimed to clarify the factors that facilitate and prevent healthcare transition from pediatric to adult care by conducting a questionnaire survey among medical professionals.SubjectsThe survey included 81 medical professionals nominated by an association of families of 5p- patients in Japan. The questions involved medical care for 5p- syndrome in adulthood, experience of transition, and factors facilitating a patient’s transition. Responses were obtained from 32 participants, with 27 answers eligible for analysis.ResultsThe questionnaire items involved physical symptoms and concerns regarding support and welfare prompting consult. The most common physical symptom was constipation. Regarding support and welfare, all participants had an experience of receiving consultation about care for the siblings of patients. Three (11.1%) participants had an experience of transition. Regarding the transition of patients with rare diseases or intellectual disturbance, only four (14.8%) believed that progress was being made in the transition.DiscussionOnly 11% of the respondents experienced the transition of patients with 5p- syndrome. Because it is difficult for highly specialized adult care providers to deal with multidisciplinary complications of 5p- syndrome and information on prognosis and natural history is not known, it is presumed that the transition of 5p- syndrome did not progress. Factors to improve the transition of patients with 5p- syndrome and are likely to be effective for the transition of patients with other rare diseases or intellectual disabilities.

Health Care Transition Planning: Educational Needs of Pediatric Nurses and Pediatric Nurse Practitioners.

The purpose was to identify the educational needs of pediatric nurses and pediatric nurse practitioners providing direct care to transition-aged youth with chronic illness and disability and to identify strategies to develop health care transition planning (HCTP) expertise. Mixed-methods descriptive analyses were performed on survey data extracted from a larger national study exploring the provision of HCTP activities performed by nurses of two pediatric nursing professional organizations. Items querying educational needs were completed by 1,162 pediatric nurses serving in advanced practice and staff roles. Twenty percent reported having specialized HCTP education. Of which more than half received it outside of the workplace. Factor analysis revealed two constructs explaining 73.4% of the variance in nurses' reported level of knowledge. HCTP education and the development of nurse-led services to facilitate optimal health care transitions outcomes are necessitated. Academia and service have a shared responsibility in educating nurses.

A comparison of the COVID-19 response for urban underserved patients experiencing healthcare transitions in three Canadian cities

ObjectivesThe COVID-19 pandemic and response has highlighted existing strengths within the system of care for urban underserved populations, but also many fault lines, in particular during care transitions. The objectives of this study were to describe COVID-19 response policies for urban underserved populations in three Canadian cities; examine how these policies impact continuity of care for urban underserved populations; determine whether and how urban underserved community members were engaged in policy processes; and develop policy and operational recommendations for optimizing continuity of care for urban underserved populations during public health crises.MethodsUsing Walt & Gilson’s Policy Triangle framework as a conceptual guide, 237 policy and media documents were retrieved. Five complementary virtual group interview sessions were held with 22 front-line and lived-experience key informants to capture less well-documented policy responses and experiences. Documents and interview transcripts were analyzed inductively for policy content, context, actors, and processes involved in the pandemic response.ResultsAvailable documents suggest little focus on care continuity for urban underserved populations during the pandemic, despite public health measures having disproportionately negative impacts on their care. Policy responses were largely reactive and temporary, and community members were rarely involved. However, a number of community-based initiatives were developed in response to policy gaps. Promising practices emerged, including examples of new multi-level and multi-sector collaboration.ConclusionThe pandemic response has exposed inequities for urban underserved populations experiencing care transitions; however, it has also exposed system strengths and opportunities for improvement to inform future policy direction.

Toward Improving the Transition of Patients With Congenital Adrenal Hyperplasia From Pediatrics to Adult Healthcare in Japan.

The transition of patients with childhood-onset chronic diseases from pediatric to adult healthcare systems has recently received significant attention. Since 2013, the Japan Pediatric Society developed working groups to formulate guidelines for transition of patients with childhood-onset chronic diseases from pediatric to their disease specialty. Herein, we report on the activities of the Japan Society of Pediatric Endocrinology (JSPE) and the current status of transition medicine for 21-hydroxylase deficiency (21-OHD) in Japan. The JSPE proposed roadmaps and checklists for transition and prepared surveys on the current status of healthcare transition for childhood-onset endocrine diseases. In Japan, newborn screening for 21-OHD started in January 1989; however, there is no nationwide registry-based longitudinal cohort study on 21-OHD from birth to adult. The current status and the whole picture of healthcare and health problems in adult patients with 21-OHD remain unclear. Thus, we conducted a questionnaire survey on JSPE members to clarify the current status of healthcare transition of 21-OHD and discuss future perspectives for the healthcare transition of patients with 21-OHD in Japan.

Transition from child and adolescent mental health care to adult services for young people with Attention-Deficit/Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD) in Europe: Barriers and recommendations

Transition in mental health care is the process ensuring continuity of care of a young patient arriving at the CAMHS (Child and Adolescent Mental Health Service) age boundary within mental health services. Transition refers to a transfer to an adult mental health service (AMHS), to private care or other mental health community services. A transition plan can also lead to a managed end of specialized care with involvement of a general practitioner or social services. For young people with a diagnosis of ADHD (Attention Deficit Hyperactivity Disorder) or ASD (Autism Spectrum Disorder), two disorders that persist into adulthood, an optimal transition would ensure continuity of care or facilitate access to specialized care in the case of a discharge. Transition typically occurs during adolescence, a known sensitive period when young people may experience major changes at several levels: physiological, psychological and social. Any barrier in the transition process resulting in discontinuity of care may worsen the symptoms of ADHD or ASD and can ultimately adversely affect the global mental health of young people with such neurodevelopmental disorders. The objectives of this narrative review are: 1/to identify the barriers in the transition process in mental health services often faced by young people with these two disorders; 2/to highlight specific recommendations for strengthening the CAMHS-AMHS interface that have been proposed by various countries in Europe.

Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review

Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co‐morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as well as the details, barriers, and difficulties of these transitions for patients. Hence, we aimed to provide a scoping review of the literature in PubMed, Scopus, and CINAHL on the topic of healthcare transitions (HCTs) for patients with DS. Findings suggest patients with DS who continued receiving care as an adult from a pediatric care provider tended to experience co‐morbidities and other adverse health issues at higher rates than those who entirely switch to an adult‐care team. Patients with DS were unable to undergo transition due to multiple barriers, such as low income, limited/public insurance, gender, and race. We propose potential steps for transition, which focus on ensuring early planning, communicating better, coordinating services, assessing decision‐making capacity, and providing ongoing social and financial support. Future research must further identify and address barriers to HCTs for people with DS.

Basic Policy Surrounding the Promotion of Health Care Transition for Patients with Childhood-Onset Chronic Diseases of the Ministry of Health, Labour and Welfare in Japan

With the development of medical technology and improvements in medicine, many patients with childhood-onset chronic diseases transition into adulthood. As our society is facing new problems, how we provide necessary and seamless medical care for adult patients with childhood-onset chronic diseases, and how we promote their health care transition become important. The Ministry of Health, Labour and Welfare in Japan has demonstrated basic policies on health care transition and is building support systems for patients with childhood-onset chronic diseases.

Healthcare Transition in Outpatient Clinics

Many cases of healthcare transition were referred to the Department of Neurology in our local core hospital with an emergency and critical care center, owing to the relocation of a nearby children's medical center. Most patients presented epilepsy with difficulty in controlling seizures or were children with severe mental and physical disabilities requiring medical care. During the transition, multidisciplinary collaboration centered on the medical consultation office was conducted. After the transition, many patients were transported to emergency rooms for seizures, pneumonia, and other infectious diseases. Education, advanced care planning, and regional collaboration were some of the issues in the process.

Childhood-Onset Intractable Neurological Disorders, Mainly Movement Disorders

Some intractable neurological disorders, mainly movement disorders of childhood, have been outlined. It is recommended that healthcare transition be provided in a multidisciplinary setting to meet patient needs. The pediatrician in charge of transitional patients should take the lead in providing advice on the advantages and disadvantages of medical options, while respecting the patient's and family/guardian's right to self-determination to jointly reach a satisfactory decision. Here, we briefly described some of the issues that cause transition difficulties.

926-P: Improving Glycemic Control in Adolescents and Young Adults (AYA) with Diabetes: The University of Washington (UW) AYA Diabetes Program

Background: The UW AYA Diabetes Program is a partnership between Seattle Children’s Hospital and UW Medicine designed to meet AYA health care transition and mental health needs. Objective: To evaluate the impact of the UW AYA Diabetes Program on glycemic control. Methods: The study included 453 AYA with diabetes (baseline visit: mean age 20.8 years, 51% male, 70% Non-Hispanic White, 27% public insurance, 95% type 1 diabetes, 55% continuous glucose monitoring (CGM) use, 55% pump/automated insulin delivery use) who have received diabetes care within the UW AYA Diabetes Program for ≥6 months. Mixed-effects linear regression with a random effect for individual to account for repeated measures was used to evaluate change in A1C over time. Regression model was adjusted for age, race, ethnicity, diabetes technology use, and health insurance. Results: Mean adjusted A1C decreased steadily with increasing time in the UW AYA Diabetes Program (Figure) . The difference was statistically significant compared to baseline A1C levels by the time participants had been in the program for 2 years (8.1%, 95% CI: 7.8-8.4 vs. 8.8%, 95% CI: 8.6-9.0) . A1C improvement did not vary by age, diabetes technology use, or health insurance (all p>0.05) . Conclusion: The UW AYA Diabetes Program offers a promising approach to improve glycemic control in AYA transitioning from pediatric to adult diabetes care. Disclosure F.Malik: n/a. N.M.Ehrhardt: Advisory Panel; Dexcom, Inc., Novo Nordisk, Research Support; Dexcom, Inc., Merck & Co., Inc., Novo Nordisk. A.Paget: None. K.Hoch: None. K.W.Weaver: None. I.B.Hirsch: Consultant; Abbott Diabetes, Bigfoot Biomedical, Inc., GWave, Roche Diabetes Care, Research Support; Beta Bionics, Inc., Insulet Corporation, Medtronic. C.Pihoker: None. C.Taplin: Advisory Panel; Insulet Corporation, Speaker's Bureau; Medtronic. A.J.Roberts: None. S.J.Lowry: None. J.Yi-frazier: None. A.Moss: None. A.Huang: None. Funding Forest Foundation, Sequoia Foundation

Transitions Rooted in the Protection of Children's Rights: Focusing on Developmental Disabilities

In the practice of health care transition, it is important to remember that transitional care does not exist for the convenience of the medical institution, but it exists to provide the best care for a patient as he or she becomes an adult. Changes in family relationships and role functions are also significant in order to help a child become independent. In this section, we will discuss the concepts that are necessary to realize better transitional care in all areas.

Progress, Persistence, and Hope: Building a System of Services for CYSHCN and Their Families.

Progress, Persistence, and Hope: Building a System of Services for CYSHCN and Their Families.

Barriers to the Successful Health Care Transition of Patients with Kidney Disease: A Mixed-Methods Study on the Perspectives of Adult Nephrologists.

The transition from paediatric to adult-based health care is a challenging period bearing a high risk of medication nonadherence and transplant loss in adolescents and young adults after kidney transplantation. Successful transition asks for the cooperation of many, not least the adult physicians. Yet little is known about their thoughts and attitudes on the transition. We conducted a cross-sectional mixed-methods study, inviting all nephrologists registered with the German Society of Nephrology. A total of 119/1984 nephrologists answered an online survey, and 9 nephrologists participated in expert interviews on transition experiences and perceived barriers. Interviews were thematically analysed. Based on the results, 30 key statements were listed and returned to participants for a ranking of their relevance. The main themes extracted are (1) available resources, (2) patient-related factors, (3) qualification and (4) preparation of and cooperation with the paediatric setting. In conclusion, it became evident that successful transition faces multiple obstacles. At the least, it asks for time, staff, and money. Rigid structures in health care leave little room for addressing the specific needs of this small group of patients. Transition becomes a topic one wants to and is able to afford.

Transitional Pain Care in Quebec: Did We Forget Our Youths? A Brief Research Report.

Adolescents and young adults (AYAs) represent a unique population with distinct psycho-social risks and care needs. About 10% of AYAs live with chronic pain (CP) and transition to adult pain care between 16 and 25 years of age. These transitions in care happen simultaneously with other bio-psycho-social changes and require flexible multi-disciplinary support models. As it stands, transitional pain care appears suboptimal, fragmented, and opportunistic in Quebec (Canada). The objective of this Brief Report is, therefore, to present our study findings and propose a multi-disciplinary transitional framework vision applicable to AYAs living with CP. Data were collected using a sequential-consensual qualitative design with a longitudinal participatory component. The consecutive stages of this work included an exploratory stage, semi-structured interviews with primary care providers, and inter-disciplinary deliberative stakeholder consultation groups. The deductive inductive thematic approach and the three-level Health Care Transition Research Consortium's theoretical framework were used to analyze the data. A representative group of stakeholders discussed findings from the first two steps, made fifteen actionable recommendations and formulated their vision of a transitional pain care model that can be further adapted in other settings. The study results present important insights into various psycho-social factors associated with transitional pain care for AYAs.

Trends and Disparities in Health Care Transition Preparation from 2016 to 2019: Findings from the US National Survey of Children's Health

To evaluate national trends in health care transitionpreparation over a 4-year period using the National Survey of Children's Health (NSCH) and to identify and examine disparities in receipt of health care transition preparation over the study period. Data from the NSCH, an annual serial cross-sectional survey conducted from 2016 to 2019, were examined. Caregivers answered questions regarding one of their children within each of a random sample of households across the US. The primary analysis examined trends in health care transition preparation based on the year of survey completion. A secondary analysis examined the associations of race/ethnicity, primary household language, insurance type, and children with special health care needs (CSHCN) with receipt of health care transition preparation. We included data from 54 434 youths (20 708 in 2016, 8909 in 2017, 12 587 in 2018, and 12 230 in 2019) aged 12-17 years whose caregivers completed the NSCH between 2016 and 2019. The sample was weighted to be nationally representative based on weights provided by the NSCH. The proportion of youths receiving necessary health care transition preparation increased over the study period, from 14.8% in 2016 to 20.5% in 2019 (P<.001). Multivariable logistic regression demonstrated increased odds of receiving health care transition preparation in 2018 and 2019, as well as for White non-Hispanic youths, those with English or Spanish as a primary household language, those with private insurance, and CSHCN. Although the proportion of youths receiving health care transition preparation has increased since 2016, the need for ongoing improvement and elimination of disparities in health care transition preparation remains.

On the Necessity of a Geriatric Oral Health Care Transition Model: Towards an Inclusive and Resource-Oriented Transition Process.

People in need of care also require support within the framework of structured dental care in their different life situations. Nowadays, deteriorations in oral health tend to be noticed by chance, usually when complaints or pain are present. Information on dental care is also lost when life situations change. An older person may rely on family members having oral health skills. This competence is often not available, and a lot of oral health is lost. When someone, e.g., a dentist, physician, caregiver, or family member notices a dental care gap, a structured transition to ensure oral health should be established. The dental gap can be detected by, e.g., the occurrence of bad breath in a conversation with the relatives, as well as in the absence of previously regular sessions with the dental hygienist. The aim of the article is to present a model for a structured geriatric oral health care transition. Due to non-existing literature on this topic, a literature review was not possible. Therefore, a geriatric oral health care transition model (GOHCT) on the basis of the experiences and opinions of an expert panel was developed. The GOHCT model on the one hand creates the political, economic, and legal conditions for a transition process as a basis in a population-relevant approach within the framework of a transition arena with the representatives of various organizations. On the other hand, the tasks in the patient-centered approach of the transition stakeholders, e.g., patient, dentist, caregivers and relatives, and the transition manager in the transition process and the subsequent quality assurance are shown.

Caregiver Engagement Enhances Outcomes Among Randomized Control Trials of Transitional Care Interventions: A Systematic Review and Meta-analysis.

Fluctuations in health among chronically ill adults result in frequent health care transitions. Some interventions to improve patient outcomes after hospitalization include caregiver engagement as a core component, yet there is unclear evidence of the effects of this component on outcomes. The objective of this study was to synthesize evidence regarding the attention given to caregiver engagement in randomized control trials of transitional care interventions (TCIs), estimate the overall intervention effects, and assess caregiver engagement as a moderator of intervention effects. Three databases were systematically searched for randomized control trials of TCIs targeting adults living with physical or emotional chronic diseases. For the meta-analysis, overall effects were computed using the relative risk (RR) effect size and inverse variance weighting. Fifty-four studies met criteria, representing 31,291 participants and 66 rehospitalizations effect sizes. Half (51%) the interventions lacked focus on caregiver engagement. The overall effect of TCIs on all-cause rehospitalizations was nonsignificant at 1 month (P=0.107, k=29), but significant at ≥2 months [RR=0.89; 95% confidence interval (CI): 0.82, 0.97; P=0.007, k=27]. Caregiver engagement moderated intervention effects (P=0.05), where interventions with caregiver engagement reduced rehospitalizations (RR=0.83; 95% CI: 0.75, 0.92; P=0.001), and those without, did not (RR=0.97; 95% CI: 0.87, 1.08; P=0.550). Interventions with and without caregiver engagement did not differ in the average number of components utilized, however, interventions with caregiver engagement more commonly employed baseline needs assessments (P=0.032), discharge planning (P=0.006), and service coordination (P=0.035). Future TCIs must consistently incorporate the active participation of caregivers in design, delivery, and evaluation.

The current state of adult metabolic medicine in the United States: Results of a nationwide survey

Patients with inherited metabolic disorders (IMDs) now have improved health outcomes and increased survival into adulthood. There is scant evidence on managing adults with IMDs. We present an analysis of current care practices for adults with IMDs in the United States. We created and distributed an online survey to US members of the Society of Inherited Metabolic Disorders. The survey addressed ambulatory care, acute management, and health care transition (HCT) practices of adults with IMDs. The survey was completed by 91 providers from 73 institutions. Most adult patients with IMDs receive lifelong care from a single metabolic clinician, predominantly in pediatric clinic settings. Adults receive comprehensive ambulatory metabolic care, but fewer trainees participate compared with pediatric visits. Most acute IMD management occurs in pediatric hospitals. Clinician comfort with HCT increased the frequency of HCT planning. Overall, all respondents felt that providing specialized care to adults with IMDs is high value. Our survey demonstrates the paucity of clinical resources dedicated to adult metabolic medicine. Care is fragmented and varies by medical system. Interest in HCT is robust but would benefit from standardized practices. Our findings reinforce the need for greater focus on adult metabolic medicine in the United States.