The development of a transition medical home utilizing the individualized transition plan (ITP) model for patients with complex diseases of childhood

BackgroundAdvances in medicine and technology, have enabled greater numbers of children with complex illness to survive into adulthood. Adolescents with these conditions are at high risk for adverse outcomes when transitioning to adult health care. The “Staging Transition for Every Patient” (STEP) Program was developed to systematically improve the transition from pediatric to adult healthcare.ObjectiveThis article details the development of the STEP program and the novel use of “Individualized Transition Plans” (ITP) in the clinic setting.MethodsA provider needs’ assessment of the existing transition services among youth with specific diagnoses was performed, a steering committee was developed that created a transition policy, and a medical home within the adult system was established with an interdisciplinary approach. The ITP focuses on 5 individualized goals, it was developed and tested with the first-year cohort of patients.ResultsIn the initial needs assessment, 7 of 35 diagnoses were found to have an effective transition plan. The STEP program partnered with departments across the adult facility to conduct 267 interdisciplinary patient visits. In the first year, 169 new patients were seen in the clinic. The average age was 23.0 ± 4.1 years old. The ITP goals included referrals to adult specialists, advanced care planning, career and education, transition readiness, caregiver burden, and an emergency sick plan.ConclusionThere is a need for organized transition care for medically complex youth. The STEP program answers that need by addressing the unique needs of each patient. Individualized transition planning builds trust and addresses multiple domains of health.     

Transition to adult care: experiences and expectations of adolescents with a chronic illness

Background Effective means of transitioning adolescent patients with chronic illness from paediatric to adult medical care are poorly documented and supported by limited evidence. The purpose of this study is to describe expectations and concerns of adolescents with chronic illness regarding transition from subspecialty paediatric to adult‐centred care during the transition process in order guide effective programme design and implementation. Methods Qualitative content and thematic analysis of semi‐structured individual interviews with 22 adolescents with chronic illness, including cystic fibrosis, sickle cell disease, juvenile rheumatoid arthritis, and inflammatory bowel disease. Interviews took place at 1–3 time points over an 18‐month study period. Results Transition topics included: timing of transfer to adult care, the transition process, attitudes about transition, and factors that might aid transition. During the study period, one‐third of participants made the transition to adult‐oriented health care. All participants who had transitioned to adult‐oriented care reported participating in a structured transition programme. Concerns of those who had not initiated the transition process centred on re‐establishing relationships and bringing a new team ‘up to speed’. Most adolescents anticipating transfer to adult care identified only downsides and felt unprepared to transition at the time of the interview. Subjects who had transitioned noted benefits of the adult‐oriented system, even if they had been ambivalent prior to transfer of care. Participants suggested that earlier discussions about transition, opportunities to meet new healthcare teams and visits to adult‐oriented venues prior to transition might aid in the transition process. Conclusions Subspecialty paediatric providers should anticipate common fears and concerns of adolescents and discuss the benefits of transfer to adult‐oriented care. Further evaluation of existing transition programmes is an area for future study and is necessary for improvement of the continuum of care for adolescents with chronic medical conditions.     

Transfer of the care for adolescents with chronic illnesses: from pediatrics to specialists for adults

Over the past few decades, paediatrics has increasingly been characterised by many developments in medical technology. This has led to a dramatic change in the clinical outcome of many severe and chronic childhood diseases. The number of children dying due to a severe illness has decreased, and at the same time the number of children surviving with a chronic disease or handicap has increased. This development requires that paediatricians and physicians in adult care adopt new initiatives so as to ensure an efficient and caring transfer of adolescents from paediatric to adult care. The purpose of this transition is (a) preparing the patient for the transfer to adult medicine by gaining an understanding of the clinical picture and the treatment goal and possibilities, and obtaining a personal responsibility for medication and diet and (b) tuning paediatric care and adult care to one another. Procedures for the transition should be established in a protocol. The responsibility for monitoring the process lies in principle with the treating paediatrician.     

Perceived Quality of Care Transitions between Hospital and the Home in People with Stroke

ObjectivesTo explore the perceived quality of care transitions from hospital to the home with referral to subsequent rehabilitation in the home, and factors associated with low perceived quality, in people with stroke.DesignObservational study.Setting and ParticipantsEligible were patients with a suspected acute stroke admitted to 1 of 4 inpatient hospital units in the Stockholm region and discharged home with referral to a neurorehabilitation team in primary care.MethodsData on perceived quality of care transition was collected with the Care Transition Measure (CTM-15) 1 week after discharge. Additional data were mainly retrieved from medical records. To analyze difference in mean total score of the CTM-15 between participants' characteristics, length of hospital stay, disease-related data, and functioning, the Mann-Whitney U test and independent sample t test were used for dichotomized variables and 1-way analysis of variance and the Tukey post hoc test for variables with more than 2 groups. To analyze differences between participants with low and high perceived quality per item, univariable regression analyses were performed. Thereafter, multivariable regression models were created to explore associations between low perceived quality and the independent variables.ResultsMean age of the 189 participants was 75 years and 91% had a mild or very mild stroke. The majority perceived most areas of the care transition to be of high quality. Nevertheless, several areas for improvement were identified. People with a more severe stroke perceived the quality of the care transition to be lower in comparison with those with a mild stroke. The association was weak between patient or clinical characteristics and the perceived quality.Conclusion and ImplicationsOur findings suggest that preparation for discharge and information and support for self-management postdischarge should be enhanced in the referral-based care transition after stroke. Special attention should be given to people with severe stroke.     

Experiences of general practitioners participating in oncology meetings with specialists to support GP-led survivorship care; an interview study from the Netherlands

Background: Due to ageing, increasing cancer incidence and improved treatment, the number of survivors of cancer increases. To overcome the growing demand for hospital care survivorship by the involvement of the general practitioner (GP) has been suggested. Dutch GPs started a project to offer survivorship care to their patients with the help of monthly oncology meetings with hospital specialists.

Objectives: To evaluate the experiences of GPs with monthly oncology meetings in a GP-practice to support GP-led survivorship care of colon cancer patients.

Methods: This is a qualitative study in primary care centres in a region in the Netherlands around one hospital. GPs were recruited from practices organizing monthly oncology meetings with hospital specialists. Ten of 15 participating GPs were interviewed until saturation. The interviews were transcribed verbatim and two independent researchers analysed the data.

Results: The oncology meetings and individual care plans attributed to a feeling of shared responsibility for the patients by the GP and the specialist. The meetings helped the GPs to be informed about the patients in the diagnostic and treatment phase, which was followed by a clear moment of transfer from hospital to primary care. GPs were better equipped to treat comorbidity and were more confident in providing survivorship care. Due to lack of reimbursement for survivorship care, the internal motivation of the GP must high.

Conclusion: The oncology meetings fulfil the need for information and communication. Close cooperation between GPs and oncology specialists appears to be an essential factor for GPs to value GP-led survivorship care positively.     

Support needs of people living with obesity during transition from tertiary obesity treatment to community care.

BackgroundAs the number of people living with obesity increases, the maintenance of treatment outcomes is especially pertinent. Treatment at tertiary obesity services have proven to be successful, but patients need to be transitioned out of these services to community-based care to accommodate the influx of new patients. Little is known about the support needs of patients after transition from acute tertiary obesity services. It is important to establish the supports needed by these patients, especially in the context of maintaining treatment outcomes and ensuring continuity of care.MethodsA qualitative study was conducted to identify the support needs of people with obesity as they transition to community care. Patients and clinicians recruited from a tertiary obesity clinic participated in semi-structured interviews and focus groups to explore factors influencing transition and supports needed in the community. Data was collected through audio recordings, transcribed verbatim and analysed thematically.ResultsA total of 16 patients and 7 clinicians involved in the care of these patients participated between July 2020 and July 2021. Themes identified included the influence of clinic and individual factors on transition, the benefits of phased transition, patient-centred communication, and the role of social support. It was found that dependency and lack of self-efficacy, as well as low social support, hindered transition efforts. It was also identified that patients required substantial integrated professional and social support structures in the community to adequately address their care needs both during and following transition.ConclusionInterventions are needed to provide social community services following transition to ensure adequate community care that can support the maintenance of treatment outcomes. Such services should be integrated and address the social needs of people living with obesity.     

Changes in health insurance coverage and health care access as teens with disabilities transition to adulthood

BackgroundPre-ACA, less than 6% of children with disabilities were uninsured, compared with more than 42% of young adults with disabilities ages 19–25. Individuals with disabilities face greater barriers to health care access upon transition into adulthood.ObjectivesWe examined whether the ACA dependent coverage provision and Medicaid expansion improved the transition from pediatric to adult healthcare systems by reducing the gap in insurance coverage and access to care between teens and young adults with disabilities.MethodsUsing cross-sectional data from the 2006–2009 and 2011–2015 National Health Interview Survey (n = 10,136), we estimate the change in insurance coverage and access to care from pre-to post-ACA time periods for teens (ages 13–18) and young adults (ages 19–25) with disabilities in a difference-in-differences model. We completed the same analyses for these groups in Medicaid expansion and non-expansion states.ResultsBoth teens and young adults with disabilities made significant gains in insurance coverage (4.55 and 8.96% point gains respectively, p < .001) and access to care (4.01 and 3.14% points decline in delayed care due to cost, p < .05) under the dependent coverage provision and Medicaid expansion.ConclusionsMedicaid expansion had a greater impact on both insurance coverage and on access to care than did the dependent coverage provision. The benefits of these changes flowed primarily to young adults with disabilities, reducing the gaps in insurance coverage between teens and young adults, and expanding access to care for both groups, providing a more seamless transition from pediatric to adult health care systems, post-ACA.     

Transition to Comfort Care Only and End-of-Life Trajectories in an Acute Geriatric Unit: A Secondary Analysis of the DAMAGE Cohort

ObjectivesComfort care for a dying patient increases the quality of the end of life. End-of-life situations are frequently managed in acute geriatric units (AGUs), and transition to comfort care only is often necessary. However, the frequency of transition to comfort care and the latter's putative link with the end-of-life trajectory (sudden death, cancer, organ failure, and frailty with or without dementia) have not previously been studied in acute geriatric units. We sought to (1) describe end-of-life trajectories and the transition to comfort care only, and (2) analyse the relationship between the two, prior to death in an AGU.DesignA secondary analysis of a subgroup of the DAMAGE cohort (a prospective multicentre cohort of 3509 patients aged 75 years and over and admitted consecutively to an AGU).Setting/ParticipantsDAMAGE patients who died in an AGU after a stay of at least 48 hours.MethodsData on the end-of-life trajectory and the transition to comfort care only were extracted from medical records.ResultsOf the 177 included patients, 123 (69.5%) transitioned to comfort care only in the AGU. A frailty trajectory (in patients living with dementia or not) accounted for nearly 70% of deaths. Paradoxically, only frailty among people living without dementia was not significantly associated with a more frequent transition to comfort care [odds ratio (95% confidence interval): 1.44 (0.44–4.76), relative to a patient dying suddenly].Conclusions and ImplicationsTransition to comfort care only is frequent in AGUs and is linked to the end-of-life trajectory (except for frail patients living without dementia). The frailty trajectory is one of the most frequent, and, therefore, physicians must be aware of the need to improve practice in this context.     

Reaching for equitable care: High levels of disability-related knowledge and cultural competence only get us so far

BackgroundAchieving equitable medical care for people with disabilities is a complex challenge with emphasis often placed on the need for improved physician knowledge and cultural competence. Physical medicine and rehabilitation (PM&R) is a specialty dedicated to maximizing patient function, where a focus on working with and learning from patients with complex disabilities informs physician training and patient care.ObjectiveThe purpose of this study was to assess barriers to equitable care in PM&R clinics through a structural checklist and semi-structured interviews with clinic staff and physicians.MethodsWe used qualitative analysis with a grounded theory approach to develop a unified explanation of how existing clinic processes and provider attitudes affect equitable access to medical care.ResultsWe found physicians comfortable with and respectful of patient differences who described leveraging unpaid time and creativity to navigate structural, resource, and awareness barriers. Staff and physicians described current barriers as negatively affecting quality of care, clinic efficiency, and, in some cases, patient and staff safety.ConclusionOur results suggest that high levels of physician disability-related knowledge and cultural competence may be insufficient to the challenge of achieving equitable care.     

Augmenting a Transitional Care Model With Artificial Intelligence Decreased Readmissions

ObjectivesEvaluate if augmenting a transitions of care delivery model with insights from artificial intelligence (AI) that applied clinical and exogenous social determinants of health data would reduce rehospitalization in older adults.DesignRetrospective case-control study.Setting and ParticipantsAdult patients discharged from integrated health system between November 1, 2019, and February 31, 2020, and enrolled in a rehospitalization reduction transitional care management program.InterventionAn AI algorithm utilizing multiple data sources including clinical, socioeconomic, and behavioral data was developed to predict patients at highest risk for readmitting within 30 days and provide care navigators five care recommendations to prevent rehospitalization.MethodsAdjusted incidence of rehospitalization was estimated with Poisson regression and compared between transitional care management enrollees that used AI insights and matched enrollees for whom AI insights were not used.ResultsAnalyses included 6371 hospital encounters between November 2019 and February 2020 across 12 hospitals. Of the encounters 29.3% were identified by AI as being medium-high risk for re-hospitalizing within 30 days, for which AI provided transitional care recommendations to the transitional care management team. The navigation team completed 40.2% of AI recommendations for these high-risk older adults. These patients had overall 21.0% less adjusted incidence of 30-day rehospitalization compared with matched control encounters, or 69 fewer rehospitalizations per 1000 encounters (95% CI 0.65‒0.95).Conclusions and ImplicationsCoordinating a patient's care continuum is critical for safe and effective transition of care. This study found that augmenting an existing transition of care navigation program with patient insights from AI reduced rehospitalization more than without AI insights. Augmenting transitional care with insights from AI could be a cost-effective intervention to improve transitional care outcomes and reduce unnecessary rehospitalization. Future studies should examine cost-effectiveness of augmenting transitional care models of care with AI when hospitals and post-acute providers partner with AI companies.     

An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

The transition of adolescents with chronic conditions is a challenging task. This study aimed to explore the experiences and needs of adolescents with chronic conditions in the transition period and to apply these findings to the design of a generic patient education programme. Data were collected from a sample of 29 adolescents with chronic conditions from Northern Germany and Switzerland including a broad range of views due to variation in disease management and organisation of care both in paediatric and adult populations. Participants were interviewed in group (n = 18) or individual (n = 11) interviews between September 2011 and February 2012, and the data were analysed using qualitative content analysis. The findings revealed that the interviewees expressed high levels of competency in the management of their chronic conditions but identified gaps in healthcare and unmet needs during transition. In particular, they believed that they would benefit from opportunities to exchange ideas and more specific information with peers about vocational and medical issues concerning adolescent health. Identified themes reflecting adolescent needs were used to develop the transition workshop including modules regarding the following: transfer to adult medicine, their new role as a patient, orientation within the healthcare system, vocational issues, detachment from parents, social support, contraception, substance abuse, family planning, stress‐management, activation of resources and developing personal goals. The workshop's content was largely generic and included some condition‐specific components. The workshop was designed as a compact 2‐day patient education programme in a group setting for adolescents prior to their transfer to adult care. The guiding principle was the idea of empowerment by supporting the adolescents through various interactive methods to develop adequate knowledge, skills, understanding and motivation regarding their chronic conditions. We conclude that patient education programmes promoting adolescent self‐management and empowerment increase the preparedness for transition.     

Physician group,physician and patient characteristics associated with joining interprofessional team-based primary care in Ontario,Canada

PurposeCountries throughout the world have been experimenting with new models to deliver primary care. We investigated physician group, physician and patient characteristics associated with voluntarily joining team-based primary care in Ontario.MethodsThis cross-sectional study linked provincial administrative datasets to form data extractions of interest over time with the earliest in 2005 and the latest in 2013. We generated mixed, generalized chi-square and multivariate models to compare the characteristics of teams and non-teams, both with blended capitation reimbursement, and to examine characteristics associated with joining a team.ResultsHaving more physicians per group, being a female physician, having more years under the blended capitation model, having more patients in the lowest income quintile and more patients residing in rural areas were positively associated with joining a team. Being a female physician and having more patients who are males, recent immigrants and living in rural areas were positively associated with the outcome of joining teams in the late phase.ConclusionsOur study findings indicate that there are differences in physician group, physician and patient characteristics when comparing teams to non-teams. Other jurisdictions aiming to expand physician participation in interprofessional care should note those factors. Researchers looking to understand the impact of team-based care should be aware of pre-existing differences and the need to address selection bias associated with participation in team-based care.     

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.     

Stakeholders’ perspectives on models of care in the emergency department and the introduction of health and social care professional teams: A qualitative analysis using World Cafés and interviews

BackgroundThere is some evidence that health and social care professional (HSCP) teams contribute to enhanced patient and process outcomes in increasingly crowded emergency departments (EDs), but the views of service users and providers on this model of care need investigation to optimize implementation.ObjectiveThis qualitative study investigated the perspectives of key ED stakeholders about HSCP teams working in the ED.MethodsUsing a participatory design, we conducted World Café focus groups and individual interviews in two Irish hospital sites with 65 participants (purposive sampling) including ED patients and carers/relatives, ED doctors and nurses, HSCPs and pre‐hospital staff. Data were thematically analysed using NVivo software.ResultsParticipants reported that ED‐based HSCP teams could improve quality and integration of care and staff experience (Theme 1) and would be appropriate for older adults with complex needs and non‐urgent complaints (Theme 2). Concerns were raised about operational and relational barriers to implementation (Theme 3), and changes in processes and culture were considered necessary for HSCPs to work successfully in the ED (Theme 4). In contrast to service providers, service users’ concerns centred on the importance of positive communication and relations (Theme 5).ConclusionsOur study indicates potential acceptability of HSCP teams working in the ED, especially to care for older adults; however, operational and relational aspects, particularly developing interdisciplinary and integrated care, need addressing to ensure successful implementation. Differences in priorities between service users and providers (relational vs operational) highlighted the usefulness of gathering views from multiple stakeholders to understand ED processes.     

Experiences of hospital-based multidisciplinary team meetings in oncology: An interview study among participating general practitioners

Background: Cancer care has become complex, requiring healthcare professionals to collaborate to provide high-quality care. Multidisciplinary oncological team (MDT) meetings in the hospital have been implemented to coordinate individual cancer patients’ care. General practitioners (GPs) are invited to join, but their participation is minimal.

Objectives: Aim of this study is to explore participating GPs’ perceptions of their current role and to understand their preferences towards effective role execution during MDT meetings.

Methods: In May to June 2014, semi-structured interviews (n?=?16) were conducted involving GPs with MDT experience in Belgium. The analysis was done according to qualitative content analysis principles.

Results: Attendance of an MDT meeting is perceived as part of the GP’s work, especially for complex patient care situations. Interprofessional collaborative relationships and the GP’s perceived benefit to the MDT meeting discussions are important motivators to participate. Enhanced continuity of information flow and optimized organizational time management were practical aspects triggering the GP’s intention to participate. GPs valued the communication with the patient before and after the meeting as an integral part of the MDT dynamics.

Conclusion: GPs perceive attendance of the MDT meeting as an integral part of their job. Suggestions are made to enhance the efficiency of the meetings.