Invasive versus non-invasive paediatric home mechanical ventilation: review of the international evolution over the past 24 years.

BACKGROUND: Home mechanical ventilation (HMV) is the treatment for chronic hypercapnic alveolar hypoventilation. The proportion and evolution of paediatric invasive (IMV) and non-invasive (NIV) HMV across the world is unknown, as well as the disorders and age of children using HMV. METHODS: Search of Medline/PubMed for publications of paediatric surveys on HMV from 2000 to 2023. RESULTS: Data from 32 international reports, representing 8815 children (59% boys) using HMV, were analysed. A substantial number of children had neuromuscular disorders (NMD; 37%), followed by cardiorespiratory (Cardio-Resp; 16%), central nervous system (CNS; 16%), upper airway (UA; 13%), other disorders (Others; 10%), central hypoventilation (4%), thoracic (3%) and genetic/congenital disorders (Gen/Cong; 1%). Mean age±SD (range) at HMV initiation was 6.7±3.7 (0.5-14.7) years. Age distribution was bimodal, with two peaks around 1-2 and 14-15 years. The number and proportion of children using NIV was significantly greater than that of children using IMV (n=6362 vs 2453, p=0.03; 72% vs 28%, p=0.048), with wide variations among countries, studies and disorders. NIV was used preferentially in the preponderance of children affected by UA, Gen/Cong, Thoracic, NMD and Cardio-Resp disorders. Children with NMD still receiving primary invasive HMV were mainly type I spinal muscular atrophy (SMA). Mean age±SD at initiation of IMV and NIV was 3.3±3.3 and 8.2±4.4 years (p<0.01), respectively. The rate of children receiving additional daytime HMV was higher with IMV as compared with NIV (69% vs 10%, p<0.001). The evolution of paediatric HMV over the last two decades consists of a growing number of children using HMV, in parallel to an increasing use of NIV in recent years (2020-2023). There is no clear trend in the profile of children over time (age at HMV). However, an increasing number of patients requiring HMV were observed in the Gen/Cong, CNS and Others groups. Finally, the estimated prevalence of paediatric HMV was calculated at 7.4/100 000 children. CONCLUSIONS: Patients with NMD represent the largest group of children using HMV. NIV is increasingly favoured in recent years, but IMV is still a prevalent intervention in young children, particularly in countries indicating less experience with NIV.

Effectiveness of home treatment in children and adolescents with psychiatric disorders-systematic review and meta-analysis.

BACKGROUND: Home treatment in child and adolescent psychiatry offers an alternative to conventional inpatient treatment by involving the patient's family, school, and peers more directly in therapy. Although several reviews have summarised existing home treatment programmes, evidence of their effectiveness remains limited and data synthesis is lacking. METHODS: We conducted a meta-analysis on the effectiveness of home treatment compared with inpatient treatment in child and adolescent psychiatry, based on a systematic search of four databases (PubMed, CINAHL, PsychINFO, Embase). Primary outcomes were psychosocial functioning and psychopathology. Additional outcomes included treatment satisfaction, duration, costs, and readmission rates. Group differences were expressed as standardised mean differences (SMD) in change scores. We used three-level random-effects meta-analysis and meta-regression and conducted both superiority and non-inferiority testing. RESULTS: We included 30 studies from 13 non-overlapping samples, providing data from 1795 individuals (mean age: 11.95 ± 2.33 years; 42.5% female). We found no significant differences between home and inpatient treatment for postline psychosocial functioning (SMD = 0.05 [- 0.18; 0.30], p = 0.68, I2 = 98.0%) and psychopathology (SMD = 0.10 [- 0.17; 0.37], p = 0.44, I2 = 98.3%). Similar results were observed from follow-up data and non-inferiority testing. Meta-regression showed better outcomes for patient groups with higher levels of psychopathology at baseline and favoured home treatment over inpatient treatment when only randomised controlled trials were considered. CONCLUSIONS: This meta-analysis found no evidence that home treatment is less effective than conventional inpatient treatment, highlighting its potential as an effective alternative in child and adolescent psychiatry. The generalisability of these findings is reduced by limitations in the existing literature, and further research is needed to better understand which patients benefit most from home treatment. TRIAL REGISTRATION: Registered at PROSPERO (CRD42020177558), July 5, 2020.

Home-Based Pediatric Hospice and Palliative Care Provider Visits: Effects on Healthcare Utilization.

OBJECTIVE: This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare use. STUDY DESIGN: Retrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) HV through 2 HBHPC programs in the Midwest from January 1, 2013, through December 31, 2018. Descriptive statistics were calculated for healthcare use variables. Paired t test or Wilcoxon signed-rank test compared the changes in healthcare use the year before and year after initial provider HVs. RESULTS: The cohort included 195 individuals (49% female), with diagnoses composed of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed decreases in the median (IQR) number of intensive care unit days (before HV, 12 [IQR, 4-37]; after HV, 0 [IQR, 0-8]; P < .001); inpatient admissions (before HV, 1 [IQR, 1-3]; after HV, 1 [IQR, 0-2]; P = .005); and number of inpatient days (before HV, 5 [IQR, 1-19]; after HV, 2 [IQR, 0-8]; P = .009). There was an increase in clinically relevant phone calls to the HBHPC team (before HV, 1 [IQR, 0-4] vs after HV, 4 [IQR, 1-7]; P < .001) and calls to the HBHPC team before emergency department visits (before HV, 0 [IQR, 0-0] vs after HV, 1 [IQR, 1-2]; P < .001). CONCLUSION: HBHPC provider HVs were associated with fewer inpatient admissions, hospital days, and intensive care unit days, and increased clinically relevant phone calls and phone calls before emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient use and increased use of the HBHPC team.

Factors Associated With Mortality and Hospice Use Among Medicare Beneficiaries With Heart Failure Who Received Home Health Services.

BACKGROUND: Although many Medicare beneficiaries with heart failure (HF) are discharged with home health services, little is known about mortality rates and hospice use in this group. OBJECTIVES: To identify risk factors for 6-month mortality and hospice use among patients hospitalized due to HF who receive home health care, which could inform efforts to improve palliative and hospice use for these patients. METHODS: A retrospective cohort analysis was conducted in a 100% national sample of Medicare fee-for-service beneficiaries with HF who were discharged to home health care between 2017 and 2018. Multivariable Cox regression models examined factors associated with 6-month mortality, and multivariable logistic regression models examined factors associated with hospice use at the time of death. RESULTS: A total of 285,359 Medicare beneficiaries were hospitalized with HF and discharged with home health care; 15.5% (44,174) died within 6 months. Variables most strongly associated with mortality included: age > 85 years (hazard ratio [HR] 1.66, 95% CI 1.61-1.71), urgent/emergency hospital admission (HR 1.68, 1.61-1.76), and "serious" condition compared to "stable" condition (HR 1.64, CI 1.52-1.78). Among 44,174 decedents, 48.2% (21,284) received hospice care at the time of death. Those with lower odds of hospice use at death included patients who were: < 65 years (odds ratio [OR] 0.65, CI 0.59-0.72); of Black (OR 0.64, CI 0.59-0.68) or Hispanic race/ethnicity (OR 0.79, CI 0.72-0.88); and Medicaid-eligible (OR 0.80, CI 0.76-0.85). CONCLUSIONS: Although many patients hospitalized for HF are at risk of 6-month mortality and may benefit from palliative and/or hospice services, our findings indicate under-use of hospice care and important disparities in hospice use by race/ethnicity and socioeconomic status.

Hospital-to-Home-Health Transition Quality (H3TQ) Index: Further Evidence on its Validity and Recommendations for Implementation.

BACKGROUND: We developed the Hospital-to-Home-Health Transition Quality (H3TQ) Index for skilled home healthcare (HH) agencies to identify threats to safe, high-quality care transitions in real time. OBJECTIVE: Assess the validity of H3TQ in a large sample across diverse communities. RESEARCH DESIGN: A survey of recently hospitalized older adults referred for skilled HH services and their HH provider at two large HH agencies in Baltimore, MD, and New York, NY. SUBJECTS: There were five hundred eighty-seven participants (309 older adults, 141 informal caregivers, and 137 HH providers). Older adults, caregivers, and HH providers rated 747 unique transitions. Of these, 403 were rated by both the older adult/caregiver and their HH provider, whereas the remaining transitions were rated by either party. MEASURES: Construct, concurrent, and predictive validity were assessed via the overall H3TQ rating, correlation with the care transition measure (CTM), and the Medicare Outcome and Assessment Information Set (OASIS). RESULTS: Proportion of transitions with quality issues as identified by HH providers and older adults/caregivers, respectively; Baltimore 55%, 35%; NYC 43%, 32%. Older adults/caregivers across sites rated their transitions as higher quality than did providers (P<0.05). H3TQ summed scores showed construct validity with the CTM-3 and concurrent validity with OASIS measures. Summed H3TQ scores were not significantly correlated with 30-day ED visits or rehospitalization. CONCLUSIONS: The H3TQ identifies care transition quality issues in real-time and demonstrated construct and concurrent validity, but not predictive validity. Findings demonstrate value in collecting multiple perspectives to evaluate care transition quality. Implementing the H3TQ could help identify transition-quality intervention opportunities for HH patients.

Effects of Home-Based Primary Care on Hospital Use for High-Need Medicare Patients: an Observational Study.

BACKGROUND: High-need, high-cost Medicare patients can have difficulties accessing office-based primary care. Home-based primary care (HBPC) can reduce access barriers and allow a clinician to obtain valuable information not obtained during office visit, possibly leading to reductions in hospital use. OBJECTIVE: To determine whether HBPC for high-need, high-cost patients reduces hospitalizations and Medicare inpatient expenditures. DESIGN: We conducted a matched retrospective cohort study using a difference-in-differences analysis to examine patients 2 years before and 2 years after their first home visit (HBPC group). PARTICIPANTS: The study included high-need, high-cost fee-for-service Medicare patients without prior HBPC use, of which 55,303 were new HBPC recipients and 156,142 were matched comparison patients. INTERVENTION: Receipt of at least two HBPC visits and, within 6 months of the index HBPC visit, a majority of a patient's primary care visits in the home. MAIN MEASURES: Total and potentially avoidable hospitalizations and Medicare inpatient expenditures. KEY RESULTS: HBPC reduced total hospitalization rates, but the marginal effects were not statistically significant: a reduction of 11 total hospitalizations per 1000 patients in the first year (- 0.6%, p = 0.19) and 14 in the second year (- 0.7%, p = 0.16). However, HBPC reduced potentially avoidable hospitalization rates in the second year. The estimated marginal effect was a reduction of 6 potentially avoidable hospitalizations per 1000 patients in the first year (- 1.6%, p = 0.16) and 11 in the second (- 3.1%, p = 0.01). The estimated effect of HBPC was a small decrease in inpatient expenditures of $24 per patient per month (- 1.1%, p = 0.10) in the first year and $0 (0.0%, p = 0.99) in the second. CONCLUSIONS: After high-need, high-cost patients started receiving HBPC, they did not experience fewer total hospitalizations or lower inpatient spending but may have had lower rates of potentially avoidable hospitalizations after 2 years.

Association between patent ductus arteriosus flow and home oxygen therapy in extremely preterm infants.

BACKGROUND: Central blood flow measurements include the estimation of right and left ventricular output (RVO, LVO), superior vena cava (SVC) flow, and calculated patent ductus arteriosus (PDA) flow. We aimed to provide an overview of the maturation patterns of these values and the relationship between PDA flow and the need for home oxygen therapy. METHODS: This prospective single-center study was conducted in infants born at <26 weeks of gestation. We performed echocardiographic measurements five times during their life (from the 4th post-natal day to the 36th postmenstrual week). RESULTS: Sixty patients with a mean birth weight of 680 (590, 760) g were included. Postnatal development of LVO and PDA flow peaked at the end of the second postnatal week (427 and 66 mL/kg/min, respectively). The RVO increased between days 4 and 7-8. The SVCF was most stable. The development curves of PDA flow differed between the groups with (n = 28; 47%) and without home oxygen therapy. CONCLUSION: We present the central blood flow values and their postnatal development in infants <26 weeks of gestation. This study demonstrates the association between PDA flow and the future need for home oxygen therapy. IMPACT: This study enriches our knowledge of the long-term development of central blood flow parameters and derived patent ductus arteriosus (PDA) flow in extremely preterm infants (<26 weeks). While pulmonary resistance decreased, PDA flow continued to increase from day 4 to the end of the second week of life. Similarly, left ventricular output increased as a marker of preload. The superior vena cava flow remained stable. The observed association between PDA flow and an unfavorable respiratory outcome is important for future studies focusing on the prevention of chronic lung disease.

Virtual Reality for advanced cancer patients assisted at home: A randomized controlled interventional study.

OBJECTIVE: Virtual Reality (VR) has been demonstrated to be an effective option for integrating psychological interventions in different therapeutic settings. This randomized controlled interventional study aims to assess the effects of VR, compared to tablet controlled intervention, on anxiety, depression, pain, and short-term psychophysical symptoms in advanced cancer patients assisted at home. METHODS: Participants were provided with a VR headset or a tablet (TAB) for 4 days. On the first and last day, anxiety and depression were measured by Hospital Anxiety and Depression Scale and pain by Brief Pain Inventory. Before and after each VR and tablet session, symptoms were collected by the Edmonton Symptom Assessment Scale (ESAS). RESULTS: Fifty-three patients (27 VR vs. 26 TAB) completed the study. Anxiety significantly decreased in the VR group after the 4-day intervention. The analysis of ESAS showed a significant improvement in pain (p = 0.013), tiredness (p < 0.001), and anxiety (p = 0.013) for TAB group, and a significant reduction in tiredness (p < 0.001) in the VR group. CONCLUSIONS: Technological and user-friendly tools, such as VR and tablets, might be integrated with traditional psychological interventions to improve anxiety and cancer-related short-term symptoms. Further studies are needed to better consolidate the possible beneficial effects of VR.

Should people with type 2 diabetes treated by multiple daily insulin injections with home health care support be switched to hybrid closed-loop? The CLOSE AP+ randomized controlled trial.

AIM: The study aim was to evaluate the feasibility, safety and efficacy of automated insulin delivery (AID) assisted by home health care (HHC) services in people with type 2 diabetes unable to manage multiple daily insulin injections (MDI) at home on their own. PATIENTS AND METHODS: This was an open label, multicentre, randomized, parallel group trial. In total, 30 adults with type 2 diabetes using MDI and requiring nursing support were randomly allocated to AID or kept their usual therapy over a 12-week period. Both treatments were managed with the support of HHC services. The primary outcome was the percentage time in the target glucose range of 70-180 mg/dl (TIR). Secondary outcomes included other continuous glucose monitoring metrics, glycated haemoglobin (HbA1c) levels, daily insulin doses, body weight, and of quality of life scores, fear of hypoglycaemia and satisfaction questionnaires. RESULTS: Age (69.7 vs. 69.3 years) and HbA1c (9.25 vs. 9.0) did not differ in MDI and AID at baseline. Compared with MDI, AID resulted in a significant increase in TIR by 27.4% [95% CI (15.0-39.8); p < .001], a decrease in time above range by 27.7% and an unchanged time below range of <1%. A between-group difference in HbA1c was 1.3% favouring AID. Neither severe hypoglycaemia nor ketoacidosis occurred in either group. Patient and caregiver satisfaction with AID was high. CONCLUSIONS: AID combined with tailored HHC services significantly improved glycaemic control with no safety issues in people with type 2 diabetes previously under an MDI regimen with HHC. AID should be considered a safe option in these people when lacking acceptable glucose control.

Estimated mortality risk and use of palliative care services among home care clients during the last 6 months of life: a retrospective cohort study.

BACKGROUND: In Canada, only 15% of patients requiring palliative care receive such services in the year before death. We describe health care utilization patterns among home care users in their last 6 months of life to inform care planning for older people with varying mortality risks and evolving care needs as they decline. METHODS: Using population health administrative data from Ontario, we performed a retrospective cohort study involving home care clients aged 50 years and older who received at least 1 interRAI (Resident Assessment Instrument) Home Care assessment between April 2018 and September 2019. We report the proportion of clients who used acute care, long-term care, and palliative home care services within 6 months of their assessment, stratified by their predicted 6-month mortality risk using a prognostic tool called the Risk Evaluation for Support: Predictions for Elder-life in their Communities Tool (RESPECT) and vital status. RESULTS: The cohort included 247 377 adults, 11.9% of whom died within 6 months of an assessment. Among decedents, 50.6% of those with a RESPECT-estimated median survival of fewer than 3 months received at least 1 nonphysician palliative home care visit before death. This proportion declined to 38.7% and 29.5% among decedents with an estimated median survival between 3 and 6 months and between 6 and 12 months, respectively. INTERPRETATION: Many older adults in Ontario do not receive any palliative home care before death. Prognostic tools such as RESPECT may improve recognition of reduced life expectancies and palliative care needs of individuals in their final years of life.

Ascertaining the Francophone population in Ontario: validating the language variable in health data.

BACKGROUND: Language barriers can impact health care and outcomes. Valid and reliable language data is central to studying health inequalities in linguistic minorities. In Canada, language variables are available in administrative health databases; however, the validity of these variables has not been studied. This study assessed concordance between language variables from administrative health databases and language variables from the Canadian Community Health Survey (CCHS) to identify Francophones in Ontario. METHODS: An Ontario combined sample of CCHS cycles from 2000 to 2012 (from participants who consented to link their data) was individually linked to three administrative databases (home care, long-term care [LTC], and mental health admissions). In total, 27,111 respondents had at least one encounter in one of the three databases. Language spoken at home (LOSH) and first official language spoken (FOLS) from CCHS were used as reference standards to assess their concordance with the language variables in administrative health databases, using the Cohen kappa, sensitivity, specificity, positive predictive value (PPV), and negative predictive values (NPV). RESULTS: Language variables from home care and LTC databases had the highest agreement with LOSH (kappa = 0.76 [95%CI, 0.735-0.793] and 0.75 [95%CI, 0.70-0.80], respectively) and FOLS (kappa = 0.66 for both). Sensitivity was higher with LOSH as the reference standard (75.5% [95%CI, 71.6-79.0] and 74.2% [95%CI, 67.3-80.1] for home care and LTC, respectively). With FOLS as the reference standard, the language variables in both data sources had modest sensitivity (53.1% [95%CI, 49.8-56.4] and 54.1% [95%CI, 48.3-59.7] in home care and LTC, respectively) but very high specificity (99.8% [95%CI, 99.7-99.9] and 99.6% [95%CI, 99.4-99.8]) and predictive values. The language variable from mental health admissions had poor agreement with all language variables in the CCHS. CONCLUSIONS: Language variables in home care and LTC health databases were most consistent with the language often spoken at home. Studies using language variables from administrative data can use the sensitivity and specificity reported from this study to gauge the level of mis-ascertainment error and the resulting bias.

Experiences and preferences of people with stroke and caregivers, around supports provided at the transition from hospital to home: a qualitative descriptive study.

BACKGROUND: Transitioning home from the structured hospital setting poses challenges for people with stroke (PWS) and their caregivers (CGs), as they navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period. METHODS: Between November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis. RESULTS: Sixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition. CONCLUSIONS: Our findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. The experiences of support at this transition and the preferences of PWS and CGs during this important period highlights the need for better care co-ordination, early and ongoing emotional support, and equitable access to tailored services and support. Experiences are likely to be improved by implementing a partnership approach with improved collaboration, including joint goal-setting, between PWS, CGs, healthcare professionals and support organisations.

Reliability of the quality of life-aged care consumers (QOL-ACC) and EQ-5D-5L among older people using aged care services at home.

PURPOSE: The Quality of Life-Aged Care Consumers (QOL-ACC), a valid preference-based instrument, has been rolled out in Australia as part of the National Quality Indicator (QI) program since April 2023 to monitor and benchmark the quality of life of aged care recipients. As the QOL-ACC is being used to collect quality of life data longitudinally as one of the key aged care QI indicators, it is imperative to establish the reliability of the QOL-ACC in aged care settings. Therefore, we aimed to assess the reliability of the QOL-ACC and compare its performance with the EQ-5D-5L. METHODS: Home care recipients completed a survey including the QOL-ACC, EQ-5D-5L and two global items for health and quality of life at baseline (T1) and 2 weeks later (T2). Using T1 and T2 data, the Gwet's AC2 and intra-class correlation coefficient (ICC) were estimated for the dimension levels and overall scores agreements respectively. The standard error of measurement (SEM) and the smallest detectable change (SDC) were also calculated. Sensitivity analyses were conducted for respondents who did not change their response to global item of quality of life and health between T1 and T2. RESULTS: Of the 83 respondents who completed T1 and T2 surveys, 78 respondents (mean ± SD age, 73.6 ± 5.3 years; 56.4% females) reported either no or one level change in their health and/or quality of life between T1 and T2. Gwet's AC2 ranged from 0.46 to 0.63 for the QOL-ACC dimensions which were comparable to the EQ-5D-5L dimensions (Gwet's AC2 ranged from 0.52 to 0.77). The ICC for the QOL-ACC (0.85; 95% CI, 0.77-0.90) was comparable to the EQ-5D-5L (0.83; 95% CI, 0.74-0.88). The SEM for the QOL-ACC (0.08) was slightly smaller than for the EQ-5D-5L (0.11). The SDC for the QOL-ACC and the EQ-5D-5L for individual subjects were 0.22 and 0.30 respectively. Sensitivity analyses stratified by quality of life and health status confirmed the base case results. CONCLUSIONS: The QOL-ACC demonstrated a good test-retest reliability similar to the EQ-5D-5L, supporting its repeated use in aged care settings. Further studies will provide evidence of responsiveness of the QOL-ACC to aged care-specific interventions in aged care settings.

Costs of care trajectories of people with dementia compared with matched controls. Longitudinal analysis of linked health and administrative data.

OBJECTIVES: To provide insight into the health and social care costs during the disease trajectory in persons with dementia and the impact of institutionalization and death on healthcare costs compared with matched persons without dementia. METHODS: Electronic health record data from family physicians were linked with national administrative databases to estimate costs of primary care, medication, secondary care, mental care, home care and institutional care for people with dementia and matched persons from the year before the recorded dementia diagnosis until death or a maximum of 4 years after the diagnosis. RESULTS: Total mean health and social care costs among persons with dementia increased substantially during the disease trajectory, mainly due to institutional care costs. For people who remained living in the community, mean health and social care costs are higher for people with dementia than for those without dementia, while for those who are admitted to a long-term care facility, mean health and social care costs are higher for people without dementia than for those with dementia. CONCLUSIONS: The steep rise in health and social care costs across the dementia care trajectory is mainly due to increasing costs for institutional care. For those remaining in the community, home care costs and hospital care costs were the main cost drivers. Future research should adopt a societal perspective to investigate the influence of including social costs.

A panel vector autoregression analysis for the dynamics of medical and long-term care expenditures.

Although medical and long-term care expenditures for older adults are closely related, providing rigorous statistical analysis for their dynamic relationship is challenging. In this research, we propose a novel approach using the panel vector autoregression model to reveal the realized patterns of the interdependence. As an empirical application, we analyze monthly panel data on individuals in a city of Japan, where social insurance covers many formal services for long-term care. Our estimation results indicate the existence of intertemporal transition from expensive acute medical care to reasonable at-home medical care, then to at-home long-term care. Under this context, the enhancement of formal long-term care sector in Japan might have played an important role in the suppression of the total care cost in spite for its rapid aging over the past 2 decades. Additionally, we find that daycare plays multiple roles in Japanese long-term care, such as respite and rehabilitation, but there is no considerable transition from outpatient rehabilitation to daycare in the long-term care sector.

Benefits of Chinese family caregivers of patients with urostomy: a qualitative study.

BACKGROUND: Family caregivers, also known as informal caregivers, are critical for the home care of patients with urostomy. The present study aimed to investigate the benefits of family caregivers in China while taking care of patients with urostomy from a positive perspective. METHODS: A qualitative research design was adopted, with a thematic analysis. The qualitative research software NVivo was used for data analysis. Twenty-two family caregivers of urostomy patients participated in an in-depth interview for 60-90 min. A qualitative analysis was performed using a thematic approach in accordance with the six-stage thematic analysis process reported by Braun and Clarke (2006). RESULTS: The following four benefits were identified: mastering knowledge and skills, promoting self-growth, establishing close family ties, and changing the way of life. Among these four themes, 11 sub-themes were constructed by coders. CONCLUSIONS: This study provides new insights into intervention measures for family caregivers of patients with urostomy, which could play an important role in developing the overall model of family-centered nursing.

Quality indicators for integrating oncology and home palliative care in Japan: modified Delphi study.

CONTEXT: Home palliative care service increases the chance of dying at home, particularly for patients with advanced cancer, but late referrals to home palliative care services still exist. Indicators for evaluating programs that can facilitate the integration of oncology and home palliative care have not been defined. OBJECTIVES: This study developed quality indicators for the integration of oncology and home palliative care in Japan. METHODS: We conducted a systematic literature review (Databases included CENTRAL, MEDLINE, EMBASE, and Emcare) and a modified Delphi study to develop the quality indicators. Panelists rated a potential list of indicators using a 9-point scale over three rounds according to two criteria: appropriateness and feasibility. The criterion for the adoption of candidate indicators was set at a total mean score of 7 or more. Final quality indicators with no disagreement were included. RESULTS: Of the 973 publications in our initial search, 12 studies were included. The preliminary list of quality indicators by systematic literature review comprised 50 items. In total, 37 panelists participated in the modified Delphi study. Ultimately, 18 indicators were identified from the following domains: structure in cancer hospitals, structure in home palliative care services, the process of home palliative care service delivery, less aggressive end-of-life care, patient's psychological comfort, caregiver's psychological comfort, and patient's satisfaction with home palliative care service. CONCLUSION: Comprehensive quality indicators for the integration of oncology and home palliative care were identified. These indicators may facilitate interdisciplinary collaboration between professional healthcare providers in both cancer hospitals and home palliative care services.

Effects of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in patients with primary brain tumor and their caregivers: a randomized controlled trial.

PURPOSE: This study aimed to examine the effect of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in primary brain tumor patients and their caregivers. METHODS: A parallel-group randomized controlled trial was conducted with patients who underwent surgery for a primary brain tumor between March 2019 and January 2020 in a tertiary hospital and with caregivers who cared for them at home. Eligible patients and caregivers were determined by block randomization. Outcome measures included validated measures of self-care agency (Self-Care Agency Scale), symptoms and interference by symptoms (MD Anderson Symptom Inventory Brain Tumor-Turkish Form), and caregiver burden (Caregiver Burden Scale). Two-way analysis of variance was used in repeated measurements from general linear models compared to scale scores. RESULTS: Self-care agency was significantly higher in the intervention group than in the control group in the first and sixth months after surgery (p < 0.05). The severity of the patients' emotional, focal neurologic, and cognitive symptoms and interference by symptoms were significantly lower in the intervention group than in the control group (p < 0.05). Caregiver burden was significantly lower in the intervention group in the first, third, and sixth months after surgery (p < 0.05). CONCLUSION: Dependent care theory-based post-surgical home care intervention increased patients' self-care and reduced symptoms and their effects. It also reduced the caregiver burden. Dependent care theory can guide the nursing practices of nurses who provide institutional and/or home care services to patients with chronic diseases and their caregivers. TRIAL REGISTRATION: NCT05328739 on April 14, 2022 (retrospectively registered).

Differences in discharge letter content: oncologists' vs. home care physicians' needs.

PURPOSE: To compare the details, oncologists include in discharge letters with what home care physicians need. Although discharge letters are important to share patients' information for home palliative care, few studies have compared the details, especially patients' emotions, regarding what oncologists include in discharge letters and home care physicians' needs. METHODS: This cross-sectional study was conducted by sending anonymous, self-administered questionnaires to 500 certified oncologists (OCs) and 500 directors of home care supporting clinics (HCs) in Japan between March and May 2023. The survey considered 20 potential items found in discharge letters, and compared rates of OCs including these items and HCs needs. RESULTS: Of 310 valid responses, 186 were from OCs (average age: 47.7; 29 females) and 124 from HCs (average age: 55.4; 9 females). Major items with lower inclusion rates for OCs included patients' emotions regarding medical conditions (58.4% in OCs vs. 92.6% in HCs, p < 0.001), families' emotions regarding medical conditions (60.0 vs. 92.6%, respectively, p < 0.001), patients' perceptions regarding medical conditions (84.9 vs. 94.3%, respectively, p = 0.011), families' perceptions regarding medical conditions (84.3 vs. 95.1%, respectively, p = 0.004), and potential late-onset treatment-related adverse events (79.3 vs. 92.6%, respectively, p = 0.002). Conversely, OCs included patients' activities of daily living more frequently (96.2 vs. 90.2%, respectively, p = 0.031). CONCLUSION: Transitioning to home-based palliative care may necessitate accurate information and consideration of patients' and families' perceptions and emotions regarding medical conditions in discharge letters for continuous provision of high-quality care.

Trend analysis of quality indicators in palliative home care among terminally ill cancer and non-cancer patients in Taiwan: a 6-year observational study.

PURPOSE: Palliative home care services (PHCS) have been emerging for years. However, limited data exist regarding quality indicators for pain control, unplanned hospital readmissions, and household deaths among terminal cancer and non-cancer patients receiving PHCS. METHODS: We conducted a retrospective collection and recording of data from 1242 terminally ill cancer and non-cancer patients receiving PHCS. The data were obtained from the Hospice-Palliative Clinical Database (HPCD) of Taichung Veterans General Hospital (TCVGH) for the period from 2016 to 2021. T test and chi-square test were applied for characteristics and the quality indicators among cancer and non-cancer groups. Chi-square test was used for trend analysis of the number of patients receiving PHCS and the quality indicators among cancer and non-cancer groups throughout the study period. RESULTS: A total of 1242 terminally ill cancer and non-cancer patients who had received PHCS were documented by TCVGH from the years 2016 to 2021, including 221 non-cancer patients and 1021 cancer patients having an average age of 70. The number of terminally ill cancer and non-cancer patients receiving PHCS has increased annually since 2016. Another finding was that age was a statistically significant factor impacting quality indicators. On the other hand, compared to non-cancer patients, cancer patients had a higher likelihood of receiving treatment with analgesics when needed. Their odds of needing analgesics more than three times within 4 days after PHCS enrollment were significantly elevated [OR 4.188, 95% CI (1.002, 17.51)]. CONCLUSION: The results of this 6-year observational study indicate a substantial increase in the number of terminal cancer and non-cancer patients receiving PHCS over the past decade. Furthermore, aging plays an important role in life quality of terminal cancer and non-cancer patients.