Transitional Care Model Research Articles

Economic evidence with respect to cost-effectiveness of the transitional care model among geriatric patients discharged from hospital to home: a systematic review

BackgroundThe German hospital-to-home discharge management of geriatric patients has long been criticized. The implementation of the American Transitional Care Model (TCM) could help to reduce readmissions and costs. The objective of this review was to check the scientific evidence of the cost-effectiveness of the TCM.MethodsA systematic literature search in six databases for the time period of 26 years was conducted. The studies had to meet all pre-defined inclusion criteria. The data extraction is based on a criteria chart from literature. The methodological quality was assessed using the tools of the National Heart, Lung, and Blood Institute as well as the Consensus Health Economic Criteria list. The results transferability to German health care system was explained based on the criteria from the literature.ResultsThree American studies met all criteria. They showed partial cost analyses but no full economic analyses. It could be assumed that the economic effect of the TCM changes over time. The costs of a care coordinator could not be determined because few detailed information was reported. The TCM may have negative consequences for hospitals. The results are not transferable to Germany.ConclusionThere is no scientific evidence for the cost-effectiveness of the defined TCM. The optimal TCM duration still needs to be clarified. A detailed overview with units and prices and an additional consideration of the hospital perspective could help to make the information more transparent when deciding about the TCM implementation. A full economic analysis under German conditions or for similar European countries is necessary.

The effects of Nurse Led Transitional Care Model on elderly patients undergoing open heart surgery: a randomized controlled trial.

Rate and number of successful cases in open heart surgery has been increasing due to the advances in medical technology and surgery. To improve patient convalescence results and reduce rate of post-discharge readmission to hospital and unplanned post-discharge rehospitalization, home-care and follow-up process of patients should be managed successfully. To evaluate the effectiveness of Nurse Led Transitional Care Model on the functional autonomy, quality of life, readmission, and rehospitalization rates of elderly patients undergoing open heart surgery. A randomized controlled trial was conducted from November 2017 to December 2018 and performed according to the CONSORT Guidelines. Sixty-six elderly patients were randomly allocated to the intervention (n: 33) and control (n: 33) groups. Patients in intervention group were given care based on the Transitional Care Model until the post-discharge 9th week starting from date of hospitalization. Patients in control group were given standard care services. Functional autonomy, quality of life levels, and repeated admission/re-hospitalization rates to the clinic were evaluated. The Functional Autonomy Measurement System and SF-36 Quality of Life Scale scores of the intervention group were higher than that of the control group at the 9th week (P < 0.05). In addition, rate of readmission and rehospitalization during the follow-up period (6 months) of patients in the intervention group was found to be lower than the patients in the control group (P < 0.05). Care services offered under the Transitional Care Model improved functional autonomy and quality of life and decreased post-discharge hospital readmission and rehospitalization rates of patients. The study was registered on ClinicalTrials.gov (ID: NCT04384289).

Transitional Cancer Care Program from Hospital to Home in the Health Care System of Iran.

Objectives:Transitional care program refers to the health care continuity during transferring from one health care setting to another or to home. This is an essential program for cancer patients and reduces the risk of unnecessary hospital admissions as well as the complications of the disease. The aim of this study was to develop a transitional cancer care program from hospital to home in the health care system of Iran. Methods:This study is a health policy and system research. It was conducted in four stages from October 2019 to January 2020. The first stage was a qualitative study. The qualitative data were collected through semi-structured interviews with 24 participants and a focus group with eight experts. In the second stage, a literature review of transitional care models was carried out. The initial version of the transitional cancer care program was developed based on the qualitative results and the literature review in the third stage. The validity and feasibility of the program were assessed using the Delphi study in the fourth stage. Results:Six major categories were extracted from the qualitative results, consisting of “integrated services for the continuity of care”, “holistic care”, “care standardization”, “the use of telemedicine”, “the transparency of rules” and “the care process provision”. Using these results and extracted the three common models of transitional care, the initial program was developed in three phases of pre-discharge, post-discharge, and transitional care with six protocols. The content validity of the program (98.7%) and its feasibility (95.8%) were approved by experts in the Delphi rounds. Conclusions:It is necessary to revise hospitals’ discharge program, and home health care center’s plan for admission and delivering health care services for cancer patients. Also, a pilot program is necessary to find the system advantages and disadvantages.

Interprofessional Collaboration in a New Model of Transitional Care for Families with Preterm Infants - The Health Care Professional's Perspective.

BackgroundFamilies with preterm infants find life after hospital discharge challenging and need tailored support to thrive. The “Transition to Home (TtH)”-model offers structured, individual support for families with preterm infants before and after hospital discharge. TtH improves parental mental health and competence, promotes child development and fosters interprofessional collaboration (IPC).AimEvaluate the TtH-models’ structure and implementation process and its associated interprofessional collaboration from the healthcare professional’s (HCP) perspective.MethodsThis qualitative explorative study thematically analyzed four focus group interviews (n=28 HCP) and an open-ended questionnaire with general pediatricians (n=8).ResultsThe main themes of the thematic analysis were the benefits of the TtH-model, tailored parental support, the challenges of changing interprofessional collaboration, facilitators and barriers to successfully implementing the model, and feasibility and health economic limits. HCP acknowledge that continuous family-centered care led by an advanced practice nurse (APN) supports, strengthens, and relieves families with preterm infants in the transition from hospital to home. Families in complex situations benefit most. The TtH-model incorporates key aspects of integrated care like shared decision-making, considering family preferences, and defining the APN as the family’s main contact. HCP want network collaboration but found communication, cooperation, and reorganization challenging in the new IPC process. IPC challenges and involving many HCP in family care can create parental oversupply, negatively affect treatment outcomes, and raise health care costs.ConclusionThese challenges need to be addressed to ensure sustainable implementation of the model. The roles and tasks of HCP should be clearly distinguished from each other, and HCP must have time to learn this new form of IPC. Learning requires time, effective communication strategies, and leadership support. Political action is also required to implement new models of care, including regulating advanced practice roles and developing new financing models.

The manifestation of participation within a co-design process involving patients, significant others and health-care professionals.

BackgroundDespite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed.ObjectiveThe aim of this study was to describe how user participation manifests itself within a co‐design process involving patients, significant others and health‐care professionals, including potential enablers or barriers.MethodsThis study was conducted in the context of a co‐design process of a new person‐centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi‐structured interviews and questionnaires.ResultsFour categories: ‘Composition of individuals for an adaptive climate’; ‘The balancing of roles and power’; ‘Different perspectives as common ground for a shared understanding’; and ‘Facilitating an unpredictable and ever‐adaptive process’, with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute.Discussion/ConclusionParticipation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co‐design processes should allow for varying levels of participation among the participants and throughout the process.Patient or public contributionPatients, significant others and health‐care professionals participated as co‐designers of a care transition model between hospital and home.

Utilizing the care coordination Atlas as a framework: An integrative review of transitional care models

Introduction Care coordination reduces care fragmentation and costs while improving health care quality. Transitional care programs, guided by tested models are an important component of effective care coordination, and have been found to reduce adverse events and prevent hospital readmissions. Using the Care Coordination Atlas as a framework, this article reports an integrative review of two transitional care models including analysis of model components, implementation factors, and associated 30-day all-cause hospital readmission rates. Methods Integrative review methodology. PubMed and Scopus databases were searched from January 2015 to July 2020. Fourteen studies set in 18 skilled nursing facilities and 50 hospitals were selected for data extraction and analysis. Results The ReEngineered Discharge model had five components and the Better Outcomes by Optimizing Safe Transitions model had eight components in the nine Care Coordination Atlas domains. Communication dominated activities in both models while neither addressed accountability/responsibility. Implementation was influenced by leadership commitment to understanding complexity of the models, culture change, integration of models into workflows, and associated labor costs. Model implementation studies consistently reported improvements in facilities’ 30-day all-cause hospital readmission rates. Discussion The Care Coordination Atlas was a useful framework to guide analysis of transitional care models. Leadership commitment to and participation in model implementation is vital. The models do not focus beyond the immediate post-discharge period limiting the impact on chronic disease management. Frameworks such as the Care Coordination Atlas are useful to help guide development of care coordination activities and associations with readmission rates.

51130 Risk of Prolonged Opioid Use After Intensive Care Unit Admission

ABSTRACT IMPACT: This is the first examination of risk factors for prolonged opioid use after an ICU stay and will inform efforts to strengthen prescribing guidelines and care transition models for patients after critical illness. OBJECTIVES/GOALS: The majority of patients in intensive care units (ICU) receive opioids during admission, and up to 25% receive a prescription at discharge. However, transitions of care and prolonged use after discharge remain unknown. We aim to characterize risk factors for prolonged opioid use after an ICU stay. METHODS/STUDY POPULATION: A retrospective study using insurance claims from Optum Clinformatics ®Data Mart was conducted for opioid-naive adult patients (18-64 years) with an ICU admission from 2010 to 2019. The primary outcome was new persistent opioid use, defined as a continued prescription fill 91-180 days after discharge, in addition to a fill in the first 90 days. The primary exposure was an opioid fill at discharge. The ICU admission was characterized using the Clinical Classification System from the Agency of Healthcare Research and Quality, based on patients’primary diagnosis code. Diagnoses were combined into 11 groups highlighting the affected organ system/mechanism of injury. Logistic regression evaluated the associations of patient demographic and clinical characteristics with the probability of persistent opioid use. RESULTS/ANTICIPATED RESULTS: In this cohort of 90,721 patients discharged from the ICU, 3.3% continued to fill opioids at 6 months. An opioid prescription fill (OR 3.1; 95% CI 28 - 3.3) and benzodiazepine prescription fill (OR 1.6; 95% CI 1.4 - 1.8) within 3 days of ICU discharge were each significantly associated with the development of new persistent opioid use. Patient diagnosis groups of Musculoskeletal/Trauma (OR 2.3; 95% CI 2.0 - 2.6), Neoplasms (OR 1.6; 95% CI 1.5 - 1.9), and GI/Hepatobiliary (OR 1.5; 95% CI 1.3 - 1.8) were significantly more likely to develop new persistent use when compared to the Cardiovascular diagnosis group. DISCUSSION/SIGNIFICANCE OF FINDINGS: Opioid prescriptions at discharge after an ICU stay increase the odds of prolonged opioid use. These results will inform efforts to strengthen prescribing guidelines and care models after a critical illness. Further work will characterize the trajectory of prescribing and patient exposure to high-risk prescribing after ICU discharge.

Covid-19: A critical time for cross-sector social work care management

ABSTRACT Covid-19 has profoundly impacted social work and has exposed the existing inequities in the health care system in the United States. Social workers play a critical role in the pandemic response for historically marginalized communities and for those who find themselves needing support for the first time. Innovative approaches to care management, including the Center for Health and Social Care Integration (CHaSCI) Bridge Model of transitional care provides a foundation from which social workers can rise to meet these new challenges.

ECHO-CT: An Interdisciplinary Videoconference Model for Identifying Potential Postdischarge Transition-of-Care Events.

Discharge from the hospital to a post-acute care setting can be complex and potentially dangerous, with opportunities for errors and lapses in communication between providers. Data collected through the Extension for Community Health Outcomes- Care Transitions (ECHO-CT) model were used to identify and classify transition-of-care events (TCEs). The ECHO-CT model employs multidisciplinary videoconferences between a hospital-based team and providers in post-acute care settings; during these conferences, concerns regarding the patient's care transition were identified and recorded. The videoconferences took place from January 2016 to October 2018 and included patients discharged from inpatient medical and surgical services to a total of eight participating post-acute care facilities (skilled nursing facilities or long-term acute care hospitals). During the interdisciplinary videoconferences in this period, 675 patients were discussed. A total of 139 TCEs were identified; 58 (41.7%) involved discharge communication or coordination errors and 52 (37.4%) were classified as medication issues. The TCEs identified in this study highlight areas in which providers can work to reduce issues arising during the course of discharge to post-acute care facilities. Standardized processes to identify, record, and report TCEs are necessary to provide high-quality, safe care for patients as they move across care settings.

Improving evidence-based grouping of transitional care strategies in hospital implementation using statistical tools and expert review

BackgroundAs health systems transition to value-based care, improving transitional care (TC) remains a priority. Hospitals implementing evidence-based TC models often adapt them to local contexts. However, limited research has evaluated which groups of TC strategies, or transitional care activities, commonly implemented by hospitals correspond with improved patient outcomes. In order to identify TC strategy groups for evaluation, we applied a data-driven approach informed by literature review and expert opinion.MethodsBased on a review of evidence-based TC models and the literature, focus groups with patients and family caregivers identifying what matters most to them during care transitions, and expert review, the Project ACHIEVE team identified 22 TC strategies to evaluate. Patient exposure to TC strategies was measured through a hospital survey (N = 42) and prospective survey of patients discharged from those hospitals (N = 8080). To define groups of TC strategies for evaluation, we performed a multistep process including: using ACHIEVE’S prior retrospective analysis; performing exploratory factor analysis, latent class analysis, and finite mixture model analysis on hospital and patient survey data; and confirming results through expert review. Machine learning (e.g., random forest) was performed using patient claims data to explore the predictive influence of individual strategies, strategy groups, and key covariates on 30-day hospital readmissions.ResultsThe methodological approach identified five groups of TC strategies that were commonly delivered as a bundle by hospitals: 1) Patient Communication and Care Management, 2) Hospital-Based Trust, Plain Language, and Coordination, 3) Home-Based Trust, Plain language, and Coordination, 4) Patient/Family Caregiver Assessment and Information Exchange Among Providers, and 5) Assessment and Teach Back. Each TC strategy group comprises three to six, non-mutually exclusive TC strategies (i.e., some strategies are in multiple TC strategy groups). Results from random forest analyses revealed that TC strategies patients reported receiving were more important in predicting readmissions than TC strategies that hospitals reported delivering, and that other key co-variates, such as patient comorbidities, were the most important variables.ConclusionSophisticated statistical tools can help identify underlying patterns of hospitals’ TC efforts. Using such tools, this study identified five groups of TC strategies that have potential to improve patient outcomes.

Development of the Fearless, Tearless Transition model of care for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities.

AimFirst, to understand the barriers to achieving effective transition and the supports required from the perspective of parents and carers, adolescents with intellectual disability and/or autism spectrum disorder and co‐existing mental health disorders (often termed ‘dual disability’), and those who provide services to this group. Second, to develop an informed model of shared care to improve the transition of adolescents with dual disabilities.MethodCarers and a young adult with a dual disability were surveyed about their experience of transition care. Other key stakeholders including paediatricians, general practitioners, and policy makers were also interviewed. These data informed the model of care.ResultsPaediatricians and general practitioners reported difficulties establishing working relationships to foster smooth transitions, and carers reported lacking a regular general practitioner with adequate expertise to care for people with dual disabilities. A process of shared care between paediatricians and general practitioners was developed and initiated by a dedicated transition manager, who assisted with care coordination and service linkages. Standardized clinical assessment tools were also introduced to determine patient and carer support needs.InterpretationThis study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early transition planning, consistent methods of assessing patient and carer needs, and shared care.What this paper adds Adolescents with co‐occurring disabilities require a collaborative health and disability service interface.Fearless, Tearless Transition is a new approach to transitioning adolescents with dual disabilities from paediatric to adult care.Carers of adolescents with dual disabilities require support navigating and negotiating services.Engaging general practitioners and paediatricians in shared care early during the transition process is essential.

Hospital Discharge Interventions: A Cost-Savings Comparison

For an older patient, transitioning back into the community after an acute health incident is a critical juncture. Avoidable acute-care readmissions are expensive for hospitals and federal programs. Negative health outcomes for patients and negative financial outcomes for hospitals and federal programs have focused attention on effective discharge interventions to improve care transitions and decrease avoidable acute-care readmissions. This study compares cost and readmissions outcomes from peer-reviewed publication data for three discharge interventions: Care Transitions Intervention (CTI), Project RED (ReEngineered Discharge), and the Transitional Care Model (TCM). This study adjusted costs to 2015 rates and compared cost savings per patient, return on investment (ROI) and percent reduction of readmissions. Cost savings per patient (2015-adjusted) were found for all interventions: CTI ($152.89); Project RED ($327.03); TCM ($1565.84). ROI was positive for all interventions: CTI (832%); Project RED (535%); TCM (232%). Compared to control groups, intervention group readmissions were 3.6% lower for CTI (n.s.), 5.5% lower for Project RED (p<.05), and 13.2% lower for TCM (p<.05). These three discharge interventions differ in scale and intensity, but they all show cost savings and reductions in readmissions. The lower-cost intervention shows cost savings and ROI (CTI), and the more resource-intensive interventions (Project RED and TCM) reduce costs and statistically significantly reduce rates of readmission. Even with small budget dollars, hospitals have options for finding an effective discharge intervention to reduce costs and readmission rates.

Perceptions of a Transitional Care Model for Older Adults With Multimorbidity and Depressive Symptoms

Transitioning from hospital to home is an important healthcare system priority. This paper reports on the qualitative findings from a larger mixed methods study designed to examine the implementation and effectiveness of a new transitional care intervention (Community Assets Supporting Transitions [CAST]). The goal of the CAST intervention is to improve the quality and experience of hospital-to-home transitions for older adults (≥ 65 years) with depressive symptoms and multimorbidity. Semi-structured interviews were completed with a sub-set of intervention group trial participants including 11 older adult participants and 1 caregiver, as well as 4 intervention nurses. A qualitative descriptive design was used to explore the perceived impacts of the CAST intervention on participants and their caregivers. Audio-recorded interviews were transcribed verbatim, with descriptive codes and themes generated using conventional content analysis. Patient participants indicated that the intervention resulted in improved access to information (e.g., medication review) and services (e.g., care coordination) that enhanced their self-management. Participants felt that the home visits and phone visits were valuable and helped to improve their mental health. Intervention nurses described advocating for patients to help achieve their needs. For example, nurses advocated for physiotherapy services to provide additional education to support patient mobility. Understanding patient, caregiver, and provider perceptions of the impact of the CAST intervention will help to identify how to improve the delivery of this transitional care intervention, to bridge the gap between hospital and community care, and to positively impact patient health outcomes.

Adverse Outcomes, Polysubstance Use, and Polypharmacy in Older Veterans

This session will provide information about adverse health outcomes, including suicide, suicide attempts and unintended death, that may be related to polysubstance use and polypharmacy in older adults, particularly older veterans. It will further provide information that will help support late-life suicide prevention and intervention efforts. Older veterans (age50 and older) have the highest number of lives lost to suicide, make up majority of the veteran population, and are highly likely to experience conditions (e.g., chronic pain, sleep disorders, musculoskeletal) associated with commonly prescribed medications that are potential markers for suicide risk (hereafter referred to as “high-risk” drug categories), including benzodiazepines, sedative-hypnotics, opioids, antidepressants, antipsychotics, and antiepileptics. The research presented in this session will highlight important patterns in high-risk drug prescribing and use and related outcomes in late life. The presentations will underscore various groups of older veterans that may be important to consider and, yet, neglected in the polysubstance and polypharmacy and suicide prevention conversation, including those who recently attempted suicide, veterans with late-life posttraumatic stress disorder (PTSD), and older veterans transitioning from prison to community. Drs. Maust and Morin will present findings on prescribing and use of high-risk medications in late life, including an overview of trends in polypharmacy and associations with suicide attempts. Drs. Byers and Barry will speak about older veterans with PTSD and those with a history of incarceration, with information on suicide, unintended death by overdose, and substance use disorder-related emergency department visits and hospitalizations, emphasizing importance of care transition models for prevention. Aging, Alcohol and Addictions Interest Group Sponsored Symposium.

Toward a Partnership in the Transition from Home to a Nursing Home: The TRANSCIT Model

The transition from home to a nursing home can be stressful and traumatic for both older persons and informal caregivers and is often associated with negative outcomes. Additionally, transitional care interventions often lack a comprehensive approach, possibly leading to fragmented care. To avoid this fragmentation and to optimize transitional care, a comprehensive and theory-based model is fundamental. It should include the needs of both older persons and informal caregivers. Therefore, this study, conducted within the European TRANS-SENIOR research consortium, proposes a model to optimize the transition from home to a nursing home, based on the experiences of older persons and informal caregivers. These experiences were captured by conducting a literature review with relevant literature retrieved from the databases CINAHL and PubMed. Studies were included if older persons and/or informal caregivers identified the experiences, needs, barriers, or facilitators during the transition from home to a nursing home. Subsequently, the data extracted from the included studies were mapped to the different stages of transition (pre-transition, mid-transition, and post-transition), creating the TRANSCIT-model. Finally, results were discussed with an expert panel, leading to a final proposed TRANSCIT model.The TRANSCIT model identified that older people and informal caregivers expressed an overall need for partnership during the transition from home to a nursing home. Moreover, it identified 4 key components throughout the transition trajectory (ie, pre-, mid-, and post-transition): (1) support, (2) communication, (3) information, and (4) time.The TRANSCIT model could advise policy makers, practitioners, and researchers on the development and evaluation of (future) transitional care interventions. It can be a guideline reckoning the needs of older people and their informal caregivers, emphasizing the need for a partnership, consequently reducing fragmentation in transitional care and optimizing the transition from home to a nursing home.

Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders.

Childhood-onset movement disorders represent a heterogenous group of conditions. Given the complexity of these disorders, the transition of care from pediatric to adult medicine is an important consideration. We performed a scoping review of the literature on transitional care in chronic neurological disease, exploring key transitional issues and proposed transitional care models. Our aim was to describe the current knowledge and gaps about the transition process of young adults with chronic neurological disorders, paying special attention to childhood onset movement disorders. A total of 64 articles were included in the qualitative synthesis; 56 articles reported on transitional care issues, and 8 articles reported on transitional care models. Only 2 articles included patients with movement disorders. The following 4 main transitional issues were identified following synthesis of the available literature: (1) inadequate preparation for the transition process, (2) inappropriate and inconsistent transition practices, (3) inadequate adult services, and (4) heightened emotional response surrounding transition. Of the reported transitional care models, multidisciplinary ambulatory care was the most common approach. In studies evaluating patient-related outcomes, positive health, educational, and vocational outcomes were found. The available literature provides insights on issues that can arise during transition that should be addressed to improve patient and caregiver comfort and satisfaction with care. Further research is needed to evaluate how transitional care programs affect outcomes and their cost effectiveness. More studies are required to determine the needs and outcomes specific to patients with childhood onset movement disorders. © 2020 International Parkinson and Movement Disorder Society.

Effects of A 3-month transitional care model (TCM) intervention by “Pathfinders” after hospital discharge on nutritional status of older patients

Rationale: Hospital stays can deteriorate older adults’ health and nutritional status (NS). At discharge, prevalence of malnutrition (MN) and risk of MN are still high among older patients, indicating a requirement for ongoing care. This study aims to evaluate whether an individualized comprehensive health advice by “pathfinders” (PF) after discharge may improve their NS.

Use of components of the transitional care model in geriatric cross-sectoral care in Germany-Results of asurvey

The inclusion of transitional care professionals to improve the sectoral interface management is politically supported. The nine components of the transitional care model (TCM) originating from the USA, are used in arandomized controlled trial within the TIGER project, which is funded by the Federal Joint Committee of Germany. Geriatric patients are accompanied prior to discharge from hospital and up to 12months after discharge in the home environment. Within the framework of the TIGER project a nationwide survey was carried out on the use of the TCM components in the accompanied transition from hospital to home in the field of geriatrics. Adata collection was set up to establish contact with people from the immediate and care policy environment of geriatrics. In a2-stage process, the first question was whether ageriatric project was known that focuses on the transition from hospital to home in geriatric patients. After confirmation, aquestionnaire could be filled out online or by post. Atotal of 31 different projects out of 39 answered questionnaires were identified. Principally, all TCM components were used in the projects. The TCM component9 that describes the coordination of support and aids, was mentioned most often (n = 30). The TCM components6 (improvement in self-management) and8 (promoting continuity) were used in only 19projects. Management of the transsectoral transition is acurrent topic in the field of geriatrics in Germany. The TCM components that have proved to be important in reducing hospital readmission rates have predominantly been used in the projects.

The transition from children’s services to adult services for young people with attention deficit hyperactivity disorder: the CATCh-uS mixed-methods study

Background Attention deficit hyperactivity disorder was previously seen as a childhood developmental disorder, so adult mental health services were not set up to support attention deficit hyperactivity disorder patients who became too old for child services. To our knowledge, this is the first in-depth study of the transition of attention deficit hyperactivity disorder patients from child to adult health services in the UK. Objectives Our objectives were to explore how many young people with attention deficit hyperactivity disorder are in need of services as an adult, what adult attention deficit hyperactivity disorder services are available and how attention deficit hyperactivity disorder stakeholders experience transition from child to adult services. Design An interactive mixed-method design was adopted with three study streams: (1) a 12-month surveillance study with 9-month follow-up to find out how many young people required ongoing medication when they were too old for child services (929 surveys completed by children’s clinicians); (2) a mapping study to identify and describe services for young adults with attention deficit hyperactivity disorder (2686 respondents to online surveys for patients and health workers and freedom of information requests to service providers and commissioners); and (3) a qualitative study to explore key stakeholders’ experiences of transition from child to adult services (144 interviews with 64 attention deficit hyperactivity disorder patients, 28 parents and 52 health clinicians; 38 working in child or adult secondary health services and 14 general practitioners). Members of the public advised at each stage of the study. Results When corrected for non-response and case ascertainment, the annual number of young people with an ongoing need for medication for attention deficit hyperactivity disorder lies between 270 and 599 per 100,000 people aged 17–19 years. Among 315 individuals eligible for transition, 64% were accepted, but only 22% attended their first adult services appointment. Our interactive map describes 294 unique services for adults with attention deficit hyperactivity disorder across the UK, of which 44 are ‘dedicated’ attention deficit hyperactivity disorder services. Few services provide the full range of recommended provision; most focus on diagnosis and medication. Services are unevenly distributed across the UK, with nearly all ‘dedicated’ services being in England. Exploring stakeholders’ experiences revealed how invested the stakeholders are in continuing attention deficit hyperactivity disorder treatment and how the architecture of services affects transition. An association between attention deficit hyperactivity disorder, education and continuance of medication into young adulthood, plus parent involvement and feeling prepared for transition and adult life with attention deficit hyperactivity disorder, influenced investment. However, even with investment, how accessible adult services are, how patient needs fit with the remit of the adult service and the level of patient information available affect transition outcomes. The results also highlight how general practitioners can end up as care co-ordinators during transition by default. Limitations Transition estimates were based on those who want medication, so these indicate a minimum level of need. Conclusions Few of those who need ongoing support for attention deficit hyperactivity disorder successfully transfer to adult services, and a small proportion of those who transfer experience optimal transitional care. Adult attention deficit hyperactivity disorder service provision is patchy. Even among ‘dedicated’ services, few provide the whole range of National Institute for Health and Care Excellence-recommended treatments. Future work We need to evaluate various models of transitional care and adult attention deficit hyperactivity disorder provision, as well as develop and evaluate psychosocial interventions for young people and adults with attention deficit hyperactivity disorder. Trial registration Current Controlled Trials ISRCTN12492022. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 42. See the NIHR Journals Library website for further project information.

Burdensome Transitions of Care for Patients with End-Stage Liver Disease and Their Caregivers.

Patients with end-stage liver disease (ESLD) experience frequent readmissions; however, studies focused on patients' and caregivers' perceptions of their transitional care experiences to identify root causes of burdensome transitions of care are lacking. To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs. We conducted interviews with 15 patients with ESLD and 14 informal caregivers. We used semi-structured interview guides to explore their experiences since the diagnosis of ESLD including their care transitions. Two raters coded interviews independently (κ = 0.95) using template analysis. Participants reported feeling unprepared to manage their informational, psychosocial, and practical care needs as they transitioned from hospital to home after the diagnosis of ESLD. Delay in the timely receipt of supportive care services addressing these care needs resulted in hospital readmissions, emotional distress, caregiver burnout, reduced work capacity, and financial hardship. Participants shared the following resources that they perceived would improve their quality of care: (1) discharge checklist, (2) online resources, (3) mental health support, (4) caregiver support and training, and (5) financial navigation. Transitional care models that attend to the informational, psychosocial, and practical domains of care are needed to better support patients with ESLD and their caregivers at the time of diagnosis and beyond. Without attending to the multidimensional care needs of newly diagnosed patients with ESLD and their caregivers, they are at risk of burdensome transitions of care, high healthcare utilization, and poor health-related quality of life.