Quality in care requires kindness and flexibility - a hermeneutic-phenomenological study of patients' experiences from pathways including transitions across healthcare settings.

BACKGROUND: The number of people living with chronic conditions is increasing worldwide, and with that, the need for multiple long-term complex care across care settings. Undergoing transitions across healthcare settings is both challenging and perilous for patients. Nevertheless, knowledge of what facilitates quality during transitions in healthcare settings from the lifeworld perspective of patients is still lacking. Therefore, we aimed to explore the lived experience in healthcare quality for Danish adult patients during healthcare pathways including transitions across settings. METHODS: Within a hermeneutic-phenomenological approach, interviews were conducted with three women and five men with various diagnoses and care paths between 30 and 75 years of age. Data underwent a three phased thematic analysis leading to three themes. RESULTS: Patients with various illnesses' experiences of quality of care is described in the themes being powerless in the face of illness; burdensome access and navigation; and being in need of mercy and striving for kindness. This highlights that patients' experiences of quality in healthcare pathways across settings interweaves with an overall understanding of being powerless at the initial encounter. Access and navigation are burdensome, and system inflexibility adds to the burden and enhances powerlessness. However, caring care provided through the kindness of healthcare professionals supports patients in regaining control of their condition. CONCLUSIONS: This hermeneutical-phenomenological study sheds light on the lived experiences of people who are at various stages in their care paths with transitions across healthcare settings. Although our findings are based on the lived experiences of 8 people in a Danish context, in light of the discussion with nursing theory and other research, the results can be reflected in two main aspects: I) kind and merciful professional relationships and II) system flexibility including access and navigation, were essential for their experiences of care quality during healthcare transitions. This is important knowledge when striving to provide patients with a clear voice regarding quality in care pathways stretching across settings.

Content validity of patient-reported measures evaluating experiences of the quality of transitions in healthcare settings-a scoping review.

No reviews so far have been conducted to define the constructs of patient-experienced quality in healthcare transitions or to identify existing generic measures of patients' experience of the quality within healthcare transitions. Our aim was to identify domains relevant for people experiencing healthcare transitions when evaluating the quality of care they have received, map the comprehensiveness of existing patient-reported experience measures (PREM), and evaluate the PREMs' content validity. The method was guided by the Joanna Briggs Institutes' guidance for scoping reviews. The search was performed on 07 December 2021 and updated 27 May 2024, in the electronic databases Medline (Ovid), Embase (Ovid), and Cinahl (EBSCO). The search identified 20,422 publications, and 190 studies were included for review. We identified 30 PREMs assessing at least one aspect of adults' experience of transitions in healthcare. Summarising the content, we consider a model with two domains, organisational and human-relational, likely to be adequate. However, a more comprehensive analysis and adequate definition of the construct is needed. None of the PREMs were considered content valid.

Identification of interventions to improve patient experienced quality of care in transitions between healthcare settings: a scoping review.

BACKGROUND: Transitions in healthcare settings can be a challenge for patients and they express a need for guidance and support to cope with these transitions. The aim of this scoping review was to investigate if interventions can improve patients' experiences when transitioning between healthcare settings. METHODS: This review was conducted following the Johanna Briggs Institute's methods and reported according to the PRISMA-ScR Checklist. Included articles were published and peer-reviewed, and reported qualitative and quantitative findings on patient experiences with interventions when transitioning between healthcare settings. The search was conducted in May 2024 in Medline Ovid, Embase Ovid, and Cinahl. RESULTS: Twenty-three studies were included. Factors extracted from the studies were: author(s), year of publication, country of origin, study design, theoretical methods, population description, intervention, phenomena of interest(s), and key findings. There has been an increase in published studies on the subject in the last few years, and most of the included studies originated from Western countries. Most studies were quantitative, primarily RCTs, and the theoretical methods were thus mainly statistical analysis. The study populations were found to be heterogeneous. The interventions were categorized: care coordinator, program, integrated care, online communication platform, coaching, discharge care plan, and miscellaneous interventions. CONCLUSIONS: Overall, interventions were found to improve the patient experience. Centralization of healthcare has increased the number of transitions, and patients express that the coordination of healthcare transitions can be improved. This review's findings should be used alongside other research on interventions' effect on factors like hospital readmissions and mortality to determine the optimal intervention to implement.

Online healthcare transition resources for pediatric neurosurgical care: supporting the journey of individuals living with spina bifida.

OBJECTIVE: In the global environment in which neurosurgical providers practice, there is a pressing need to identify and highlight online resources to support families shifting from pediatric to adult-centered spina bifida (SB) care in general and neurosurgical care in particular. The purpose of this paper was to identify high-quality resources for clinicians and families of individuals affected by SB to be utilized during the transition years. With knowledge of, and access to, these online resources, neurosurgical providers can aim to make the transition process effective, to improve the quality of care for young adults with SB. METHODS: All identified online resources were found on the GOT TRANSITION platform and by searching "spina bifida transition resources" between January and March 2024. Resources were coded for transition focus areas and stratified into predefined categories: 1) education for clinicians, 2) preparation for youth and families, 3) educational/school, and 4) employment and independent living. RESULTS: A total of 160 websites were cataloged; 11% of websites focused on medical provider education, 44% on preparation for youth, 29% on educational/school resources, and 16% on employment and independent living. CONCLUSIONS: In the global environment of today's medicine, online transition resources are available to assist clinicians and families in the transition process of individuals living with SB. With improved knowledge and utilization of online transition resources, neurosurgical providers can better serve individuals with SB and their families to improve quality of care with the aim of improving lifelong outcomes.

Potentially inappropriate medications and medication combinations before, during and after hospitalizations: an analysis of pathways and determinants in the Swiss healthcare setting.

BACKGROUND: A hospitalization phase represents a challenge to medication safety especially for multimorbid patients as acute medical needs might interact with pre-existing medications or evoke adverse drug effects. This project aimed to examine the prevalence and risk factors of potentially inappropriate medications (PIMs) and medication combinations (PIMCs) in the context of hospitalizations. METHODS: Analyses are based on claims data of patients (≥65 years) with basic mandatory health insurance at the Helsana Group, and on data from the Hirslanden Swiss Hospital Group. We assessed PIMs and PIMCs of patients who were hospitalized in 2013 at three different time points (quarter prior, during, after hospitalization). PIMs were identified using the PRISCUS list, whereas PIMCs were derived from compendium.ch. Zero-inflated Poisson regression models were applied to determine risk factors of PIMs and PIMCs. RESULTS: Throughout the observation period, more than 80% of patients had at least one PIM, ranging from 49.7% in the pre-hospitalization, 53.6% in the hospitalization to 48.2% in the post-hospitalization period. PIMCs were found in 46.6% of patients prior to hospitalization, in 21.3% during hospitalization, and in 25.0% of patients after discharge. Additional medication prescriptions compared to the preceding period and increasing age were the main risk factors, whereas managed care was associated with a decrease in PIMs and PIMCs. CONCLUSION: We conclude that a patient's hospitalization offers the possibility to increase medication safety. Nevertheless, the prevalence of PIMs and PIMCs is relatively high in the study population. Therefore, our results indicate a need for interventions to increase medication safety in the Swiss healthcare setting.

An Integrated Model to Improve Medication Reconciliation in Oncology: Prospective Interventional Study.

BACKGROUND: Accurate medication reconciliation reduces the risk of drug incompatibilities and adverse events that can occur during transitions in care. Community pharmacies (CPs) are a crucial part of the health care system and could be involved in collecting essential information on conventional and supplementary drugs used at home. OBJECTIVE: The aim of this paper was to establish an alliance between our cancer institute, Istituto Romagnolo per lo Studio dei Tumori (IRST), and CPs, the latter entrusted with the completion of a pharmacological recognition survey. We also aimed to integrate the national information technology (IT) platform of CPs with the electronic medical records of IRST. METHODS: Cancer patients undergoing antiblastic treatments were invited to select a CP taking part in the study and to complete the pharmacological recognition step. The information collected by the pharmacist was sent to the electronic medical records of IRST through the new IT platform, after which the oncologist performed the reconciliation process. RESULTS: A total of 66 CPs completed surveys for 134 patients. An average of 5.9 drugs per patient was used at home, with 12 or more used in the most advanced age groups. Moreover, 60% (80/134) of the patients used nonconventional products or critical foods. Some potential interactions between nonconventional medications and cancer treatments were reported. CONCLUSIONS: In the PROF-1 (Progetto di Rete in Oncologia con le Farmacie di comunità della Romagna) study, an alliance was created between our cancer center and CPs to improve medication reconciliation, and a new integrated IT platform was validated. TRIAL REGISTRATION: ClinicalTrials.gov NCT04796142; https://clinicaltrials.gov/ct2/show/NCT04796142.

The role of resilience in healthcare transitions among adolescent kidney transplant recipients.

PURPOSE: AYAs with KTs experience high rates of premature allograft loss during the HCT. There is a critical need to identify protective factors associated with stable HCT. Resilience-the ability to adapt and thrive in the setting of adversity-has known positive impact on health outcomes. This study explored the novel role of resilience constructs as protective factors in securing stable HCT among AYA with KT. METHODS: We conducted semi-structured interviews of adolescents and young adults who transitioned from a single pediatric transplant center to multiple adult nephrology centers between 2010 and 2017. Interviews explored the role of key resilience constructs in participants' lives around the time of HCT. Participants were stratified into stable or unstable HCT groups based on biological markers of allograft function and clinical data from chart review. Content analyses of interview transcripts were reviewed and compared among HCT groups. RESULTS: Thirty-two participants enrolled (17 stable; 15 unstable). Key resilience constructs more salient in the stable versus unstable HCT group were confidence in and connection to one's healthcare team. Reports of healthcare self-management competencies were similar across both HCT groups. CONCLUSIONS: Confidence in and connection to one's healthcare team appear to be linked with a stable HCT among AYA with KT. This suggests that interdependence, the ability to foster connections with and elicit support from healthcare providers, as opposed to complete independence or autonomy, which is often advised in the HCT process, is a critical component of resilience linked to stable HCT.

Difficult healthcare transitions: Ethical analysis and policy recommendations for unrepresented patients.

BACKGROUND: In Ontario, Canada, patients who lack decision-making capacity and have no family or friends to act as substitute decision-makers currently rely on the Office of the Public Guardian and Trustee to consent to long-term care (nursing home) placement, but they have no legal representative for other placement decisions. OBJECTIVES: We highlight the current gap in legislation for difficult transition cases involving unrepresented patients and provide a novel framework for who ought to assist with making these decisions and how these decisions ought to be made. RESEARCH DESIGN: This paper considers models advanced by Volpe and Steinman with regard to who ought to make placement decisions for unrepresented patients, as well as current ethical models for analyzing how these decisions should be made. PARTICIPANTS AND RESEARCH CONTEXT: We describe an anonymized healthcare transition case to illustrate the fact that there is no legally recognized decision-maker for placement destinations other than long-term care facilities and to show how this impacts all stakeholders. ETHICAL CONSIDERATIONS: The case provided is an anonymized vignette representing a typical transition case involving an unrepresented patient. FINDINGS: As a result of a gap in provincial legislation, healthcare providers usually determine the appropriate placement destination without a clear framework to guide the process and this can cause significant moral distress. DISCUSSION: We argue for a team decision-making approach in the short term, and a legislative change in the long-term, to respect the patient voice, evaluate benefit and risk, enhance collaboration between healthcare providers and patients, and promote social justice. We believe that our approach, which draws upon the strengths of interprofessional teams, will be of interest to all who are concerned with the welfare and ethical treatment of the patients for whom they care. CONCLUSIONS: One of the main strengths of our recommendation is that it provides all members of the healthcare team (including nurses, social workers, therapists, and others) an increased opportunity to advocate on behalf of unrepresented patients.

Risk Management During the Transition From Hospital to Home: A Multiple Case Study Documenting the Experience of Patients Living With a Major Neurocognitive Disorder, Their Caregivers, and Healthcare Professionals.

Understanding the risks in the months following hospital discharge is crucial for healthcare professionals to ensure the need for assistance is met. However, this may be challenging in the case of patients living with a major neurocognitive disorder (PLMNCD). Thus, it is important to incorporate patients' and caregivers' experiences of the transition from hospital to home in the risk assessment. This multiple case study comprised 7 PLMNCD, their caregivers, and occupational therapists. Fifty-four interviews, conducted just before, as well as 3 weeks and 3 to 6 months after hospital discharge, were qualitatively analyzed. Results revealed that risk management during the hospital-to-home transition is a dynamic process aimed at establishing a satisfactory routine while avoiding adverse events. This risk management process, which identifies challenges over time and between stakeholders, involves (a) determining the seriousness and acceptability of risks, (b) reflecting on ways to manage risks, and (c) taking steps to manage risks. This knowledge will help to provide more appropriate care and services that strike a balance between safety and autonomy.

Two Case Reports on Financial Toxicity and Healthcare Transitions in Adolescent and Young Adult Cancer Survivors.

A team conducted semistructured interviews and developed case reports about financial toxicity (FT) and healthcare transitions (HCTs) with two adolescent and young adult (AYA) cancer survivors. These reports found poor HCTs f.

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

BACKGROUND: Advances 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. OBJECTIVE: This article details the development of the STEP program and the novel use of "Individualized Transition Plans" (ITP) in the clinic setting. METHODS: A 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. RESULTS: In 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. CONCLUSION: There 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.

Longitudinal Youth in Transition Study (LYiTS): protocol for a multicentre prospective cohort study of youth transitioning out of child and adolescent mental health services at age 18.

INTRODUCTION: Transition between health services is widely recognised as a problematic hurdle. Yet, the factors necessary for successful transition out of child and adolescent mental health services (CAMHS) as youth reach the service boundary at age 18 are poorly understood. Further, fragmentation and variability among the services provided by mental health organisations serve to exacerbate mental illness and create unnecessary challenges for youth and their families. The primary aim of the Longitudinal Youth in Transition Study (LYiTS) is to describe and model changes in psychiatric symptoms, functioning and health service utilisation at the transition out of CAMHS at age 18 and to identify key elements of the transition process that are amendable to interventions aimed at ensuring continuity of care. METHODS AND ANALYSIS: A prospective longitudinal cohort study will be conducted to examine the association between psychiatric symptoms, functioning and mental health and health service use of youth aged 16-18 as they transition out of child mental health services at age 18. We will recruit a sample of (n=350) participants from child and adolescent psychiatric programmes at two hospital and two community mental health sites and conduct assessments annually for 3 years using standardised measures of psychiatric symptoms, functioning and health service utilisation. ETHICS AND DISSEMINATION: Ethics approval has been obtained at all four recruitment sites. We will disseminate the results through conferences, open access publications and webinars.

Late Transitions and Bereaved Family Member Perceptions of Quality of End-of-Life Care.

OBJECTIVES: To examine associations between healthcare transitions at the end of life (EOL; late transitions) and bereaved family members' and friends' assessment of EOL quality of care (QOC). DESIGN: National Health and Aging Trends Study (NHATS), a prospective cohort of Medicare enrollees aged 65 and older. SETTING: United States, all sites of death. PARTICIPANTS: Family members and close friends of decedents from NHATS Rounds 2 through 6 (N=1,653; weighted 6.0 million Medicare deaths). MEASUREMENTS: Multivariable logistic regression with survey weights was used to examine the association between having a late transition and reports of perceived unmet needs for symptom management, spiritual support, concerns with communication, and overall QOC. RESULTS: Seventeen percent of decedents had a late transition. Bereaved respondents for decedents experiencing late transitions were more likely to report that the decedent was treated without respect (21.3% vs 15.6%; adjusted odds ratio (AOR)=1.59, 95% confidence interval (CI)=1.09-2.33), had more unmet needs for spiritual support (67.4% v 55.2%; AOR=1.48, 95% CI=1.03-2.13), and were more likely to report they were not kept informed about the person's condition (31.0% vs 20.9%; AOR=1.54, 95% CI=1.07-2.23). Bereaved respondents were less likely to rate QOC as excellent when there was a late transition (43.6% vs 48.2%; AOR=0.79, 95% CI=0.58-1.06). Subgroup analyses of those experiencing a transition between a nursing home and hospital (13% of all late transitions) revealed such transitions to be associated with even worse QOC. CONCLUSION: Transitions in the last 3 days of life are associated with more unmet needs, higher rate of concerns, and lower rating of QOC than when such late transitions are absent, especially when that transition is between a nursing home and hospital.

Healthcare transitions of older adults: an overview for the general practitioner.

Healthcare transition refers to the care "hand-off" of a patient among providers and treatment settings. Older adults experience more frequent care transitions than younger patients due to the presence of co-morbidities, cognitive impairment, increased dependence and medication use. Hospitalization and subsequent readmission after discharge to a nursing home represents a unique care transition situation. It is estimated that as many as 60% of readmissions from nursing homes can be avoided. Poor communication between hospital and nursing home staff; delayed, inaccurate, or missing discharge summaries; lack of accurate medication reconciliation; pending test results; inappropriate follow-up; and poor education of patient and families all contribute to poor care transition quality, and increase the probability of rehospitalization. Interventions for improved care transitions are suggested. They focus on patient and family-centered care effectiveness, minimizing adverse events, and increasing timely, accurate and complete communication.