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Background Advances in diagnostic and therapeutic interventions for rare diseases result in greater survival rates, with on the flipside an expanding group of children with medical complexity (CMC). When CMC leave the protective hospital environment to be cared for at home, their parents face many challenges as they take on a new role, that of caregiver rather than care-recipient. However, an overview of needs and experiences of parents of CMC during transition from hospital-to-home (H2H) is lacking, which hampers the creation of a tailored H2H care pathway. Here we address this unmet medical need by performing a literature review to systematically identify, assess and synthesize all existing qualitative evidence on H2H transition needs of CMC parents. Methods An extensive search in Medline, PsychINFO and CINAHL (up to September 2022); selection was performed to include all qualitative studies describing parental needs and experiences during H2H transition of CMC. All papers were assessed by two independent investigators for methodological quality before data (study findings) were extracted and pooled. A meta-aggregation method categorized the study findings into categories and formulated overarching synthesized findings, which were assigned a level of confidence, following the ConQual approach. Results The search yielded 1880 papers of which 25 met eligible criteria. A total of 402 study findings were extracted from the included studies and subsequently aggregated into 50 categories and 9 synthesized findings: (1) parental empowerment: shifting from care recipient to caregiver (2) coordination of care (3) communication and information (4) training skills (5) preparation for discharge (6) access to resources and support system (7) emotional experiences: fatigue, fear, isolation and guilt (8) parent-professional relationship (9) changing perspective: finding new routines and practices. The overall ConQual Score was low for 7 synthesized findings and very low for 2 synthesized findings. Conclusions Despite the variability in CMC symptoms and underlying (rare disease) diagnoses, overarching themes in parental needs during H2H transition emerged. We will augment this new knowledge with an interview study in the Dutch setting to ultimately translate into an evidence-based tailored care pathway for implementation by our interdisciplinary team in the newly established ‘Jeroen Pit Huis’ , an innovative care unit which aims for a safe and sustainable H2H transition for CMC and their families.

Introduction Resourcefulness training (RT) supports stroke recovery by improving coping strategies and self‐management. Recognising the need for such training is crucial for providing targeted transitional care. We aimed to explore the evolving need for RT among young and middle‐aged stroke survivors during their transition from hospital to home. Methods Using purposive sampling, we conducted two rounds of semi‐structured face‐to‐face interviews, supplemented by observational methods, involving 21 young and middle‐aged stroke survivors and 13 informal caregivers. Data were collected at two time points: 1–3 days before hospital discharge (T1) and 2 months after returning home (T2). Thematic analysis was conducted, and NVivo 12 was used to facilitate data coding and organisation. Results Longitudinal qualitative analysis revealed two interconnected and fluid psychosocial stages in the transition from hospital to home: a vulnerable window immediately after discharge and an open period for rebuilding the rhythm of life. Each stage encompassed two major themes and four sub‐themes: (1) crisis awareness: limited coping capacity and concerns regarding stroke recovery; (2) low participation in rehabilitation training: limited initiative towards rehabilitation and insufficient awareness of available social resources; (3) repositioning needs: adjustment and reconstruction of self‐perception, along with a desire for self‐actualisation; and (4) desire for social support: assistance with behavioural change and the pursuit of community acceptance. Conclusion These findings indicate that the need for RT for young and middle‐aged stroke survivors during the hospital‐to‐home transition evolves dynamically from personal to social resourcefulness. Enhancing disease awareness during hospitalisation, gradually integrating social support resources after discharge, and tailoring interventions according to age, sex and rehabilitation status may better meet the rehabilitation needs of this population as they transition to home care. Patient or Public Contribution Patients and caregivers were actively involved in the feedback and early phases of data analysis. They verified the accuracy and relevance of the analysed themes. The medical staff provided respondent names and bed information that met the inclusion criteria. Their involvement contributed to ensuring the accuracy of data collection and enhancing the validity of the results.

Background A systematic literature review on the transition from hospital-to-home (H2H) of families with a child with medical complexity (CMC), resulted in nine overarching themes. These demonstrated common needs and experiences despite the widely differing CMC diagnoses and family characteristics. However, none of the reported studies was conducted in the Netherlands, which hampers the creation of a tailored H2H care pathway, deemed essential for our recently established Transitional Care Unit in the Netherlands: the ‘Jeroen Pit Huis’ . Therefore, the aim of this study was to gain a deeper understanding of the needs and experiences of Dutch CMC parents on H2H transition and integrate these insights with the literature review into an evidence-based H2H care pathway for CMC and their families. Methods A descriptive phenomenological approach was applied. Heterogeneous purposeful sampling methods were used to recruit participants according to the following criteria: parents of CMC from various regions in the Netherlands, who spoke Dutch fluently and who had been discharged home from a tertiary hospital within the previous five years. Semi-structured, open-ended interviews were conducted via video call by two researchers, who transcribed the audio recordings verbatim. Thematic analysis methods were used to identify emerging themes from the individual transcripts, involving a third and fourth researcher to reach consensus. Results Between March and August 2021, 14 mothers and 7 fathers participated in 14 interviews. They elaborated on the H2H transition of 14 CMC with a wide range of underlying diseases: 7 male, 7 female, aged 6 months to 10 years. Eight overarching themes, consistent with the results of the systematic review, represent CMC parental needs and experiences during the H2H process in the Netherlands: (1) autonomy, (2) division of tasks and roles, (3) family emotions, (4) impact on family life, (5) communication, (6) coordination of care, (7) support system and (8) adaptation. Conclusions The H2H needs and experiences reported by the CMC families in this study align with the results of our systematic review. The H2H transition process is not linear but continuous, and should extend beyond the specific medical needs of the CMC to holistic care for the family as a whole. The overarching care needs and experiences, expressed by all CMC families, regardless of underlying symptoms and diagnoses, inform the H2H care pathway and its future evaluation. Our studies highlight the necessity to focus on the family needs rather than on the specific illness of the child, as well as the value of our interdisciplinary care team partnering with parents in the ‘Jeroen Pit Huis’ towards a safe and sustainable transition home.

Discharge to home is considered appropriate as a treatment goal for diseases that often leave disabilities such as cerebral infarction. Previous studies showed differences in risk-adjusted in-hospital mortality and readmission rates; however, studies assessing the rate of hospital-to-home transition are limited. We developed and calculated the hospital standardized home-transition ratio (HSHR) using Japanese administrative claims data from 2016–2020 to measure the quality of in-hospital care for cerebral infarction. Overall, 24,529 inpatients at 35 hospitals were included. All variables used in the analyses were associated with transition to another hospital or facility for inpatients, and evaluation of the HSHR model showed good predictive ability with c-statistics (area under curve, 0.73 standard deviation; 95% confidence interval, 0.72–0.73). All HSHRs of each consecutive year were significantly correlated. HSHRs for cerebral infarction can be calculated using Japanese administrative claims data. It was found that there is a need for support for low HSHR hospitals because hospitals with high/low HSHR were likely to produce the same results in the following year. HSHRs can be used as a new quality indicator of in-hospital care and may contribute to assessing and improving the quality of care.

The COVID-19 pandemic, patient preference, and economic opportunity are shifting acute care from the hospital to the home, supported by the transformation in remote monitoring technology. Monitoring patients with digital medical devices gives unprecedented insight into their physiology. However, this technology does not exist in a vacuum. Distinguishing pathology from physiological variability, user error, or device limitations is challenging. In a hospital, patients are monitored in a contrived environment. Monitoring at home instead captures activities of daily living alongside patients’ trajectory of disease and recovery. Both settings make for “noisy” data. However, we are familiar with hospital noise, accounting for it in our practice and perceptions of normal. Home monitoring as a diagnostic intervention introduces a new set of downstream consequences, dependent on device, cadence of collection, adherence, duration, alarm thresholds, and escalation criteria. We must accept greater ambiguity and contextualize vital signs. All devices balance accuracy with acceptability, so compromises are inevitable and perfect data should not be expected. Alarms must be specific as well as sensitive, balancing clinical risk with capacity for response. By setting expectations around data from the home, we can smooth the adoption of remote monitoring and accelerate the transition of acute care.

Nearly all older patients receiving postacute home health care (HHC) use potentially inappropriate medications (PIMs) that carry a risk of harm. Deprescribing can reduce and optimize the use of PIMs, yet it is often not conducted among HHC patients. The objective of this study was to gather perspectives from patient, practitioner, and HHC clinician stakeholders on tasks that are essential to postacute deprescribing in HHC. A total of 44 stakeholders, including 14 HHC patients, 15 practitioners (including 9 primary care physicians, 4 pharmacists, 1 hospitalist, and 1 nurse practitioner), and 15 HHC nurses, participated. The stakeholders were from 12 US states, including New York (n = 29), Colorado (n = 2), Connecticut (n = 1), Illinois (n = 2), Kansas (n = 2), Massachusetts (n = 1), Minnesota (n = 1), Mississippi (n = 1), Nebraska (n = 1), Ohio (n = 1), Tennessee (n = 1), and Texas (n = 2). First, individual interviews were conducted by experienced research staff via video conference or telephone. Second, the study team reviewed all interview transcripts and selected interview statements regarding stakeholders’ suggestions for important tasks needed for postacute deprescribing in HHC. Third, concept mapping was conducted in which stakeholders sorted and rated selected interview statements regarding importance and feasibility. A content analysis was conducted of data collected in the individual interviews, and a mixed-method analysis was conducted of data collected in the concept mapping. Four essential tasks were identified for postacute deprescribing in HHC: (1) ongoing review and assessment of medication use, (2) patent-centered and individualized plan of deprescribing, (3) timely and efficient communication among members of the care team, and (4) continuous and tailored medication education to meet patient needs. Among these tasks, developing patient-centered deprescribing considerations was considered the most important and feasible, followed by medication education, review and assessment of medication use, and communication. Deprescribing during the transition of care from hospital to home requires the following: continuous medication education for patients, families, and caregivers; ongoing review and assessment of medication use; patient-centered deprescribing considerations; and effective communication and collaboration among the primary care physician, HHC nurse, and pharmacist.

IntroductionMinority-serving hospitals (MSHs) need evidence-based strategies tailored to the populations they serve to improve patient-centered outcomes after hospitalization.MethodsWe conducted a pragmatic randomized clinical trial (RCT) from October 2014 to January 2017 at a MSH comparing the effectiveness of a stakeholder-supported Navigator intervention vs. Usual care on post-hospital patient experience, outcomes, and healthcare utilization. Community health workers and peer coaches delivered the intervention which included (1) in-hospital visits to assess barriers to health/healthcare and to develop a personalized Discharge Patient Education Tool (DPET); (2) a home visit to review the DPET; and (3) telephone-based peer coaching. The co-primary outcomes were between-group comparisons of 30-day changes in Patient-Reported Outcomes Measurement Information System (PROMIS) measures of anxiety and informational support (minimum important difference is 2 to 5 units change); a p-value <0.025 was considered significant using intention-to-treat analysis. Secondary outcomes included death, ED visits, or readmissions and measures of emotional, social, and physical health at 30 and 60 days.ResultsWe enrolled 1029 adults hospitalized with heart failure (28%), pneumonia (22%), MI (10%), COPD (11%), or sickle cell disease (29%). Over 80% were non-Hispanic Black. Overall, there were no significant between-group differences in the 30-day change in anxiety (adjusted difference: −1.6, 97.5% CI −3.3 to 0.1, p=0.03), informational support (adjusted difference: −0.01, 97.5% CI −2.0 to 1.9, p=0.99), or any secondary outcomes. Exploratory analyses suggested the Navigator intervention improved anxiety among participants with COPD, a primary care provider, a hospitalization in the past 12 months, or higher baseline anxiety; among participants without health insurance, the intervention improved informational support (all p-values <0.05).ConclusionsIn this pragmatic RCT at a MSH, the Navigator intervention did not improve post-hospital anxiety, informational support, or other outcomes compared to Usual care. Benefits observed in participant subgroups should be confirmed in future studies.Trial RegistrationClinicaltrials.gov identifier: NCT02114515

ObjectiveThe aim of this work was to understand carer involvement in transitions of care from hospital to home in relation to medicines management. Specifically, via a realist review, to describe how carers provide support, to what extent do they support patients and under what circumstances are carers able to provide support towards patient care in relation to medicines management.DesignA realist review was conducted in line with a published protocol and as registered via PROSPERO (CRD42021262827). An initial programme theory (PT) was developed before searches of three databases, PubMed, CINHAL and EMBASE, were conducted in accordance with eligibility criteria. Data were extracted from eligible studies and synthesised into realist causal explanations in the form of Context-Mechanism-Outcome-Configurations (CMOCs) and the PT was refined. Throughout the review, a patient and PPIE group (n≥5) was involved, meeting five times, to inform the research focus and develop CMOCs and the PT by providing feedback and ensuring they capture the carer experience.ResultsFollowing title and abstract screening of 4835 papers, the final number of included articles was 208. The evidence synthesis identified 31 CMOCs which were categorised into three themes: (1) continuum of support; (2) understanding the carers’ priorities, role and responsibilities through shared decision-making (SDM) and (3) access to appropriate materials, resources and support information. These themes were formed into an updated PT with accompanying narrative that explained the transition from hospital to home involving carers in medicines management and identified possible areas for future intervention development.ConclusionThis review provides insights and recommendations on how carers can be better supported when managing medicines when patients are discharged from hospital. Carers need a continuum of support throughout and following the transition. Healthcare professionals can support this by understanding the carer’s priorities, role and responsibilities through SDM during the hospital stay. Consequently, carers can then be offered access to appropriate materials, resources and support information which allows them to provide better care relating to medicines in the long term.

Appropriate outcome measures as part of high-quality intervention trials are critical to advancing hospital-to-home transitions for Children with Medical Complexity (CMC). Our aim was to conduct a Delphi study and focus groups to identify a Core Outcome Set (COS) that healthcare professionals and parents consider essential outcomes for future intervention research. The development process consisted of two phases: (1) a three-round Delphi study in which different professionals rated outcomes, previously described in a systematic review, for inclusion in the COS and (2) focus groups with parents of CMC to validate the results of the Delphi study. Forty-five professionals participated in the Delphi study. The response rates were 55%, 57%, and 58% in the three rounds, respectively. In addition to the 24 outcomes from the literature, the participants suggested 12 additional outcomes. The Delphi rounds resulted in the following core outcomes: (1) disease management, (2) child’s quality of life, and (3) impact on the life of families. Two focus groups with seven parents highlighted another core outcome: (4) self-efficacy of parents.     Conclusion : An evidence-informed COS has been developed based on consensus among healthcare professionals and parents. These core outcomes could facilitate standard reporting in future CMC hospital to home transition research. This study facilitated the next step of COS development: selecting the appropriate measurement instruments for every outcome. What is Known: • Hospital-to-home transition for Children with Medical Complexity is a challenging process. • The use of core outcome sets could improve the quality and consistency of research reporting, ultimately leading to better outcomes for children and families. What is New: • The Core Outcome Set for transitional care for Children with Medical Complexity includes four outcomes: disease management, children’s quality of life, impact on the life of families, and self-efficacy of parents.

Children with Medical Complexity (CMC) often require 24/7 expert care, which may impede discharge from hospital to home (H2H) resulting in prolonged admission. Limited research exists on pediatric patients with delayed discharges and the underlying reasons for such extended admissions. Therefore, our objectives were to (1) describe the demographics, clinical characteristics, and course of CMC who are in their H2H transition and (2) identify the reasons for postponement of H2H discharge. Prospective, multicenter, observational cohort study performed from February 2022 until November 2022 for 6 months in four Dutch University Medical Center children’s hospitals. Clinically admitted patients (age 0–18 years) were eligible for inclusion if they were medically stable, yet required specialized nursing and/or paramedical care and were in the H2H transition process. In total, 44 participants were included, of whom 32 (72.7%) were younger than 1 year. Median stay in the hospital was 7.3 weeks (range 0.7–28.7). Upon entering the H2H phase, postponement of discharge was for 65.1% of the patients primarily due to a combination of medical reasons and organizational/family factors. For the remaining 34.9% of the patients, discharge was delayed solely due to organizational and/or family factors. Conclusion Our study highlights several reasons contributing to the postponement of discharge for pediatric patients with medical complexity, including their medical fragility, the time-consuming process of parent training, and the challenges in organizing home care. Future steps should explore various transitional care programs aimed at improving the H2H transition. What is Known : • Hospital to home transition for Children with Medical Complexity is a multi-faceted process with many challenges and obstacles • Insight into the current practice of transitioning home in University Medical Centers remains unknown and is needed to develop a tailored yet standardized approach What is New: • Our findings reveal reasons for postponement of discharge home and show that patients are medically stable for more than half of their hospital stays. This indicates potential opportunities to reorganize care for better outcomes for the child, the family, and healthcare consumption