Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis.

The purpose of this study is to investigate out-of-pocket non-medical expenses and employment-related outcomes in families of children with life-limiting conditions, specifically, to quantify the financial and employment implications of two events: a child's hospitalization and death. This cohort study used panel data collected prospectively for a larger study investigating the effectiveness of specialized pediatric palliative care. Participants were recruited by medical professionals between November 2019 and May 2022 at four Swiss children's hospitals. The care follow-up and bereavement follow-up assessments were 330 and 300 days, respectively. We measured out-of-pocket non-medical expenses, individual full-time equivalent units, and personal income, as well as sick leave and vacation days taken. Analyses included descriptive statistics and two-way linear fixed-effects regressions. The analysis included 110 parents (mothers n = 59, fathers n = 51) of 61 children. Children were hospitalized for a median of 7 days (interquartile range 0-21, range 0-227). The fixed-effects models found a positive association between hospitalization, i.e., length of stay, and travel and accommodation expenses (coefficient 4.18, 95% confidence interval 2.20-6.16). On average, for each week of hospitalization, parents spent an additional 29 Swiss francs on travel and accommodation. During the 300-day bereavement follow-up, six (26%) of 23 parents increased their work commitments, while one reported a decrease. CONCLUSIONS: Families incur higher travel and accommodation expenses during hospitalization than during non-hospitalized periods. Instrumental support, e.g., parking vouchers, can help families minimize these costs. Future studies should investigate whether early return to work during bereavement is driven by economic considerations or a desire for distraction. CLINICAL TRIAL REGISTRATION: Data analyzed in this study were collected as part of a clinical trial, registered on ClinicalTrials.gov, No. NCT04236180, 15 March 2019 What Is Known: • Families of children with life-limiting conditions are at risk of substantial financial burden from high out-of-pocket medical expenses. • It is also known that parents often have to incur out-of-pocket non-medical expenses and reduce their work commitments. Little is known about the economic consequences of losing a child to a life-limiting condition. WHAT IS NEW: • We provide new longitudinal evidence on the hospitalization- and death-related financial and employment implications for families of children with life-limiting conditions. • Child hospitalizations add to families' financial burden through increased travel and accommodation expenses. Work commitments rose during early bereavement.

Work-related quality of life in professionals involved in pediatric palliative care: a repeated cross-sectional comparative effectiveness study.

Background: Working in pediatric palliative care (PPC) impacts healthcare and allied professionals' work-related quality of life (QoL). Professionals who lack specific PPC training but who regularly provide services to the affected children have articulated their need for support from specialized PPC (SPPC) teams. Objectives: This study had two objectives: (1) to evaluate whether the availability of a SPPC team impacted the work-related QoL of professionals not specialized in PPC; and (2) to explore the work-related QoL of professionals working in PPC without specialized training. Design: Repeated cross-sectional comparative effectiveness design. Methods: One hospital with an established SPPC program and affiliated institutions provided the intervention group (IG). Three hospitals and affiliated institutions where generalist PPC was offered provided the comparison group (CG). Data were collected by paper-pencil questionnaire in 2021 and 2022. The Professional Quality of Life (ProQOL 5) questionnaire was used to assess work-related QoL, yielding separate scores for burnout (BO), secondary traumatic stress (STS) and compassion satisfaction (CS). A descriptive statistical analysis was performed and general estimation equations were modelled. To increase the comparability of the IG and CG, participants were matched by propensity scores. Results: The 301 participating non-PPC-specialized professionals had overall low to moderate levels of BO and STS and moderate to high levels of CS. However, none of these scores (BO: p = 0.36; STS: p = 0.20; CS: p = 0.65) correlated significantly with support from an SPPC team. Compared to nurses, physicians showed higher levels of BO (1.70; p = 0.02) and STS (2.69; p ⩽ 0.001). Conclusion: Although the study sample's overall work-related QoL was satisfactory, it showed a considerable proportion of moderate BO and STS, as well as moderate CS. To provide tailored support to professionals working in PPC, evidence regarding key SPPC support elements and their effectiveness is needed. Trial registration: ClinicalTrials.gov ID, NCT04236180.

Work-related quality of life in professionals involved in pediatric palliative care - Why was this study done? Caring for children suffering from life-limiting conditions and their families impacts professionals' work-related Quality of Life (QoL). Professionals without specific training often provide pediatric palliative care (PPC) to children and their families. - What did the researchers do? We aimed to determine whether the work-related the QoL of professionals without specialised PPC training would be positively influenced when they were supported by PPC specialists. We also wanted to explore what person-specific factors might correspond with higher or lower work-related QoL. Work-related QoL was analysed in relation to burnout (BO), secondary traumatic stress (STS), and compassion satisfaction (CS). These variables' levels were assessed with a questionnaire survey in 2021 and 2022. - What did the researchers find? The 301 participating professionals had overall low to moderate levels of BO and STS and moderate to high levels of CS. There was no substantial difference in work-related QoL in the professionals supported by PPC specialists compared to those who did not receive specialist support. Physicians showed higher levels of BO and STS than nurses. - What do the findings mean? Although the studied professionals' overall work-related QoL was satisfactory, there is a considerable proportion of moderate BO and STS scores in professionals working with children suffering from life-limiting conditions. Further research should explore the specific needs of professionals not specialised in PPC.

IgG4-related uveitis. A French cohort and literature review.

INTRODUCTION: IgG4-related disease (IgG4-RD) is a fibro-inflammatory disorder that can affect almost any organ. IgG4-related ophthalmic disease is a protean condition involving the orbit and ocular adnexa. Although a few cases of uveitis have been reported, the exact pattern of IgG4-related intraocular manifestations remains unclear. Here, we report on a nationwide French multicenter cohort of patients with IgG4-RD and uveitis and conducted a literature review. METHODS: Patients with uveitis and a concomitant definite diagnosis of IgG4-RD (Revised Comprehensive Diagnostic criteria, American College of Rheumatology/European League Against Rheumatism classification criteria for IgG4-RD, International Consensus Diagnostic Criteria for auto-immune pancreatitis, or diagnostic criteria for IgG4-related hypophysitis), were screened from our national IgG4-RD and systemic fibrosis database. Concomitantly, we conducted a PubMed literature review and selected cases of definite IgG4-RD with uveitis. RESULTS: We reported on 16 patients (8 from our database and 8 from the literature) and a total of 30 episodes of uveitis. Uveitis cases represented 3 % of total IgG4-RD patients in the national database on IgG4-RD and systemic fibrosis. Uveitis was inaugural in IgG4-RD in 4/16 cases (25 %) (appearing before any other IgG4-related symptom, at a median of 9 months), occurred concurrently to other IgG4-related symptoms in 9/16 cases (56 %) (at a median of 15 months before IgG4-RD diagnosis), and appeared during follow up in 3/16 patients (19 %) (at a median of 57 months after first IgG4-related symptoms). When uveitis occurred during follow up, it was associated with IgG4-RD manifestations in other organs in 6/9 patients (67 %). Uveitis was bilateral in 8/16 cases (50 %) and granulomatous in 5/10 cases (50 %). It was anterior in 8/13 (62 %), intermediate in 3/13 (23 %), and global (panuveitis) in 4/13 patients (31 %). Median serum IgG4 at diagnosis was 3.2 g/L. Median follow up time was of 6 years, during which 8/16 patients (50 %) experienced at least one relapse of uveitis. Treatment data was available for 29/30 uveitis flares. Steroids were used in 28/29 episodes of uveitis (97 %), leading to remission of uveitis in 16/28 cases (57 %). Methotrexate and rituximab (in combination with systemic steroids) were administered as second- or third-line therapy in 6/29 (21 %) and 5/29 (17 %) episodes of uveitis, respectively, and led to remission of uveitis in 4/6 cases (67 %) and 4/5 cases (80 %), respectively. One third of uveitides required at least two different lines of treatment for remission induction (mainly a combination of both systemic steroids and methotrexate or rituximab). DISCUSSION AND CONCLUSIONS: Uveitis may be one of the initial symptoms of IgG4-RD, and IgG4-RD should be considered in the diagnostic workup of uveitis. Its early onset in IgG4-RD may help with early diagnosis and treatment of the disease. Steroid monotherapy may be sufficient to treat IgG4-related uveitis, yet relapses were frequent (50 %) and ultimately a third of patients required at least two lines of treatment. Hence, steroid-sparing agents can be considered at early stages of the disease, particularly for patients with a high risk of relapse or steroid-related complications.

The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities.

BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing SPPC in dedicated settings. However, systematic evidence on existing models of funding as well as primary challenges faced by stakeholders remains scarce. AIMS: The present study's first aim was to investigate and conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. Its second aim was to identify obstacles to and priorities for funding these programmes sustainably. METHODS:  A 4-step process, including a document analysis, was used to conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. In consultation with a purposefully selected panel of experts in the subject, a 3-round modified Delphi study was conducted to identify funding-relevant obstacles and priorities regarding SPPC. RESULTS: Current funding of hospital-based consultative specialised paediatric palliative care programmes is complex and fragmented, combining funding from public, private and charitable sources. Overall, 21 experts participated in the first round of the modified Delphi study, 19 in round two and 15 in round three. They identified 23 obstacles and 29 priorities. Consensus (>70%) was obtained for 12 obstacles and 22 priorities. The highest level of consensus (>90%) was achieved for three priorities: the development of financing solutions to ensure long-term funding of SPPC programmes; the provision of funding and support for integrated palliative care; and sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients. CONCLUSION: Decision- and policy-makers hoping to further develop and expand SPPC in Switzerland should be aware that current funding models are highly complex and that SPPC funding is impeded by many obstacles. Considering the steadily rising prevalence of children with life-limiting conditions and the proven benefits of SPPC, improvements in funding models are urgently needed to ensure that the needs of this highly vulnerable population are adequately met.

Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol.

BACKGROUND: The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex healthcare needs of children and their families. The questions of, how SPPC is beneficial, for whom, and under what circumstances, remain largely unanswered in the current literature. This study's overall target is to evaluate the effectiveness of a SPPC programme in Switzerland with respect to its potential to improve patient-, family-, health professional-, and healthcare-related outcomes. METHODS: This comparative effectiveness study applies a quasi-experimental design exploring the effectiveness of SPPC as a complex intervention at one treatment site in comparison with routine care provided in a generalised PPC environment at three comparison sites. As the key goal of palliative care, quality of life - assessed at the level of the patient-, the family- and the healthcare professional - will be the main outcome of this comparative effectiveness research. Other clinical, service, and economic outcomes will include patient symptom severity and distress, parental grief processes, healthcare resource utilisation and costs, direct and indirect health-related expenditure, place of death, and introduction of SPPC. Data will be mainly collected through questionnaire surveys and chart analysis. DISCUSSION: The need for SPPC has been demonstrated through numerous epidemiological and observational studies. However, in a healthcare environment focused on curative treatment and struggling with limited resources, the lack of evidence contributes to a lack of acceptance and financing of SPPC which is a major barrier against its sustainability. This study will contribute to current knowledge by reporting individual and child level outcomes at the family level and by collecting detailed contextual information on healthcare provision. We hope that the results of this study can help guiding the expansion and sustainability of SPPC and improve the quality of care for children with life-limiting conditions and their families internationally. TRIAL REGISTRATION: Registered prospectively on ClinicalTrials.gov on January 22, 2020. NCT04236180 PROTOCOL VERSION: Amendment 2, March 01, 2021.

Measuring Financial Burden in Families of Children Living With Life-Limiting Conditions: A Scoping Review of Cost Indicators and Outcome Measures.

OBJECTIVES: This study aimed to provide a comprehensive overview of cost indicators and outcome measures used to measure financial burden in families of children with life-limiting conditions. METHODS: A scoping review methodology was used to map the existing literature and provide an overview of available cost indicators and outcome measures. Key medical, economic, and scientific databases were systematically searched to identify relevant articles published in 2000 or later. RESULTS: The database search yielded 7194 records, including 30 articles eligible for final inclusion. Retrieved cost indicators and outcome measures fell into 3 broad categories: direct costs, indirect costs, and financial support. No study comprehensively assessed all 3 categories. Cost indicators used to measure direct costs were grouped into 5 medical and 11 nonmedical out-of-pocket expenses categories, of which 5 were commonly assessed (ie, treatment and diagnostics, travel and transport, accommodation, food, childcare and home help). Half of the reviewed studies included assessments of indirect costs, most commonly estimating work-related income loss by evaluating employment disruptions. Assessments of opportunity costs arising from informal caregiving and of financial support were rarely included. CONCLUSIONS: Current estimates of the financial burden faced by families of children with life-limiting conditions are inconsistent and often incomplete, likely resulting in severe underestimations of the costs these families incur. We hope that the framework presented in this article will contribute to a more comprehensive assessment of illness-related financial burden and help guide future policies in this area.

Describing adverse events in Swiss hospitalized oncology patients using the Global Trigger Tool.

BACKGROUND AND AIMS: The occurrence rate of adverse events (AEs) related to care among hospitalized oncology patients in Switzerland remains unknown. The primary objective of this study was to describe, for the first time, the occurrence rate, type, severity of harm, and preventability of AEs related to care, reported in health records of hospitalized hematological and solid-tumor cancer patients in three Swiss hospitals. METHODS: Using an adapted version of the validated Global Trigger Tool (GTT) from the Institute for Healthcare Improvement, we conducted a retrospective record review of patients discharged from oncology units over a 6-week period during 2018. Our convenience sample included all records from adult patients (≥18 years of age), diagnosed with cancer, and hospitalized (>24 hours). Per the GTT method, two trained nurses independently assessed patient records to identify AEs using triggers, and physicians from the included units analyzed the consensus of the two nurses. Together, they assessed the severity and preventability of each AE. RESULTS: From the sample of 224 reviewed records, we identified 661 triggers and 169 AEs in 94 of them (42%). Pain related to care was the most frequent AE (n = 29), followed by constipation (n = 17). AEs rates were 75.4 per 100 admissions and 106.6 per 1000 patient days. Most of the identified AEs (78%) caused temporary harm to the patient and required an intervention. Among AEs during hospitalization (n = 125), 76 (61%) were considered not preventable, 28 (22%) preventable, and 21 (17%) undetermined. CONCLUSION: About half of the hospitalized oncology patients suffered from at least one AE related to care during their hospitalization. Pain, constipation, and nosocomial infections were the most frequent AEs. It is, therefore, essential to identify AEs to guide future clinical practice initiatives to ensure patient safety.

The monocytosis during human leptospirosis is associated with modest immune cell activation states.

Leptospirosis is a life-threatening zoonotic disease and it has been hypothesized that the innate immune system fails to control the infection through ill-characterized mechanisms. The aim of this observational study was to better evaluate the activation processes of monocytes at the early stage of the disease. Blood samples were taken from healthy donors (n = 37) and patients hospitalized for either non-severe (n = 25) or severe (n = 32) leptospirosis. Monocyte cell counts and phenotypes were assessed by flow cytometry. We analysed the expression of several cell activation markers: CD14, CD16, HLA-DR, CD69, TLR2, TLR4, CD11b and CD11c. Although monocyte values at admittance were not significantly different from controls, patients experienced significant monocytosis at 1.33 × 109/L (p < 0.0001 compared to controls: 0.56 × 109/L) during their hospital stay. This monocytosis observed during hospital stay was correlated to several surrogate markers of organ injury. Non-classical (CD14-CD16+) and intermediate (CD14+CD16+) monocyte subsets increased compared to controls (p < 0.05). Accordingly, classical monocyte subset (CD14+CD16-) showed decreased percentages (p < 0.0001). Levels of several cell surface activation molecules were decreased: HLA-DR involved in MHC class II antigen presentation, integrins CD11b and CD11c implicated in phagocytosis and cell recruitment (p < 0.0001). None of these parameters had a prognostic value. Results from this study showed that during acute human leptospirosis, patients experienced monocytosis with a switch toward an inflammation-related phenotype contrasted by low expression levels of markers implicated in monocyte function.

Prevalence of skin tears in the extremities in inpatients at a hospital in Denmark.

The aims of the study were to determine the prevalence of skin tears in the extremities and to explore factors associated with development of skin tears in inpatients at a Danish hospital. The study was designed as a point prevalence survey and included 202 patients in the age range 19-99 (mean: 70·7, SD: 16·5). The patients were assessed for presence of skin tears, numbers, locations and previous skin tears. Data were collected using a data collection sheet developed for a previous study. The survey team consisted of four specialist nurses. Data were collected over a period of 24 hours spread over 3 days. Of the 202 patients, 23 had skin tears, yielding a prevalence of 11·4%. In total, 40 skin tears were observed. Multiple logistic regression analysis showed that previous skin tears (odds ratio (OR): 9·3, 95% confidence interval (CI): 2·6-33·4, P < 0·001), ecchymosis (OR: 5·6, CI: 1·4-23·2, P < 0·017) and risk of falling (OR: 3·8, CI: 1·2-12·0, P < 0·021) were significantly associated with development of skin tears. The prevalence of skin tears in this study (11·4%) matches other international observations. The following risk factors were recognised: previous skin tear, ecchymosis and risk of falling. These factors could be used to identify patients requiring prevention of skin tears.

Leprosy on Reunion Island, 2005-2013: Situation and Perspectives.

BACKGROUND: Reunion Island is a French overseas territory located in the south-western of Indian Ocean, 700 km east of Madagascar. Leprosy first arrived on Reunion Island in the early 1700s with the African slaves and immigration from Madagascar. The disease was endemic until 1980 but improvement of health care and life conditions of inhabitants in the island have allowed a strong decrease in new cases of leprosy. However, the reintroduction of the disease by migrants from endemic neighbouring countries like Comoros and Madagascar is a real and continuing risk. This observational study was then conducted to measure the number of new cases detected annually on Reunion Island between 2005 and 2013, and to describe the clinical features of these patients. METHODOLOGY/PRINCIPAL FINDINGS: Data were collected over two distinct periods. Incident cases between 2005 and 2010 come from a retrospective study conducted in 2010 by the regional Office of French Institute for Public Health Surveillance (CIRE of Indian Ocean), when no surveillance system exist. Cases between 2011 and 2013 come from a prospective collection of all new cases, following the implementation of systematic notification of all new cases. All patient data were anonymized. Among the 25 new cases, 12 are Reunion Island residents who never lived outside Reunion Island, and hence are considered to be confirmed autochthonous patients. Registered prevalence in 2014 was 0.05 /10 000 habitants, less than the WHO's eradication goal (1/10 000). CONCLUSIONS/SIGNIFICANCE: Leprosy is no longer a major public health problem on Reunion Island, as its low prevalence rate indicates. However, the risk of recrudescence of the disease and of renewed autochthonous transmission remains real. In this context, active case detection must be pursued through the active declaration and rapid treatment of all new cases.

Expert clinical reasoning and pain assessment in mechanically ventilated patients: A descriptive study.

BACKGROUND: Pain assessment in mechanically ventilated patients is challenging, because nurses need to decode pain behaviour, interpret pain scores, and make appropriate decisions. This clinical reasoning process is inherent to advanced nursing practice, but is poorly understood. A better understanding of this process could contribute to improved pain assessment and management. OBJECTIVE: This study aimed to describe the indicators that influence expert nurses' clinical reasoning when assessing pain in critically ill nonverbal patients. METHODS: This descriptive observational study was conducted in the adult intensive care unit (ICU) of a tertiary referral hospital in Western Switzerland. A purposive sample of expert nurses, caring for nonverbal ventilated patients who received sedation and analgesia, were invited to participate in the study. Data were collected in "real life" using recorded think-aloud combined with direct non-participant observation and brief interviews. Data were analysed using deductive and inductive content analyses using a theoretical framework related to clinical reasoning and pain. RESULTS: Seven expert nurses with an average of 7.85 (±3.1) years of critical care experience participated in the study. The patients had respiratory distress (n=2), cardiac arrest (n=2), sub-arachnoid bleeding (n=1), and multi-trauma (n=2). A total of 1344 quotes in five categories were identified. Patients' physiological stability was the principal indicator for making decision in relation to pain management. Results also showed that it is a permanent challenge for nurses to discriminate situations requiring sedation from situations requiring analgesia. Expert nurses mainly used working knowledge and patterns to anticipate and prevent pain. CONCLUSIONS: Patient's clinical condition is important for making decision about pain in critically ill nonverbal patients. The concept of pain cannot be assessed in isolation and its assessment should take the patient's clinical stability and sedation into account. Further research is warranted to confirm these results.

Adaptation of adhesive post and cores to dentin after in vitro occlusal loading: evaluation of post material influence.

PURPOSE: Fatigue resistance of post and cores is critical to the long term behavior of restored nonvital teeth. The purpose of this in vitro trial was to evaluate the influence of the post material's physical properties on the adaptation of adhesive post and core restorations after cyclic mechanical loading. MATERIALS AND METHODS: Composite post and cores were made on endodontically treated deciduous bovine teeth using 3 anisotropic posts (made of carbon, quartz, or quartz-and-carbon fibers) and 3 isotropic posts (zirconium, stainless steel, titanium). Specimens were submitted to 3 successive loading phases--250,000 cycles at 50 N, 250,000 at 75 N, and 500,000 at 100 N--at a rate of 1.5 Hz. Restoration adaptation was evaluated under SEM, before and during loading (margins) and after test completion (margins and internal interfaces). Six additional samples were fabricated for the characterization of interface micromorphology using confocal microscopy. RESULTS: Mechanical loading increased the proportion of marginal gaps in all groups; carbon fiber posts presented the lowest final gap proportion (7.11%) compared to other stiffer metal-ceramic or softer fiber posts (11.0% to 19.1%). For internal adaptation, proportions of debonding between dentin and core or cement varied from 21.69% (carbon post) to 47.37% (stainless steel post). Debonding at the post-cement interface occurred only with isotropic materials. Confocal microscopy observation revealed that gaps were generally associated with an incomplete hybrid layer and reduced resin tags. CONCLUSION: Regardless of their rigidity, metal and ceramic isotropic posts proved less effective than fiber posts at stabilizing the post and core structure in the absence of the ferrule effect, due to the development of more interfacial defects with either composite or dentin.

Population sizes and within-deme movement of Trimerotropis saxatilis (Acrididae), a grasshopper with a fragmented distribution.

Capture-mark-recapture studies were initiated in 1990 on four Missouri populations of the lichen grasshopper, Trimerotropis saxatilis. This grasshopper lives only on glade habitat, predominantly in the Ozark Mountains. Genetic data suggest that no gene flow occurs among T. saxatilis populations. Lichen grasshopper population size (both present and historical), and the likelihood of movement within and between glades, are the subjects of this study. Population sizes on all glades were found to be small (<280 individuals) and to vary from year to year. Inbreeding effective sizes were found to be much larger than census sizes. On one of the sites, Graham Cave Glade, population size was calculated for 5 years; in 3 of those years (1991, 1993 and 1994) our studies of this population also tested for movement of T. saxatilis individuals among different regions of the moderately subdivided glade. Maintenance of Graham Cave Glade (burning and clearing) was initiated after the 1991 capture-mark-recapture season. Comparisons of before-and after-burning intraglade movement probabilities did not show a significant difference. Grasshoppers more frequently remained in the part of the glade where they were previously captured, but were able to move about the moderately subdivided glade. The presence of a closed-canopy forest, rather than distance, appears to be an effective dispersal barrier.