How Do Children With Medical Complexity Die? A Scoping Review.

Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.

Economic burden of respiratory syncytial virus infection in adults: a systematic literature review.

AIMS: To capture the economic and healthcare resource utilization (HCRU) burden in older adults due to respiratory syncytial virus (RSV) infection. METHODS: An electronic literature search of PubMed, Embase, the Cochrane Library, PsycINFO, and EconLit was conducted for studies of the cost and HCRU outcomes of RSV infection in adult patients, with no language or country restrictions. The search dates for the primary studies were January 1, 2002-May 18, 2022. The methodological quality of included studies was assessed using a modification of the Critical Appraisal Skills Programme (CASP) checklist for economic studies and the Drummond checklist. RESULTS: Forty-two studies were identified that reported cost or HCRU data associated with RSV infections, with geographic locations across North America, South America, Europe, Asia, and Oceania. Generally, hospitalization costs were highest in the United States (US). Driving factors of increased cost included older age, comorbidities, and length of stay. US studies found that the national direct cost burden of RSV hospitalizations was $1.3 billion for all adults and $1.5-$4.0 billion for adults aged ≥60 years (estimates for other countries were not identified). Studies estimating incremental costs for RSV cases versus controls and costs pre- and post-RSV infection demonstrated higher costs for RSV cases. Hospitalizations accounted for the majority of total costs. EVIDENCE LIMITATIONS AND GAPS: The variability in definitions of cost outcomes, age groups, study seasons, and geographic locations was prohibitive of a meta-analysis and comparisons across studies. Cost and HCRU data were limited per country outside the US, per comorbidity, and in settings other than the inpatient setting. Only one study reported indirect costs, and only the US had national cost burden data. CONCLUSION: Despite several data gaps, the economic burden of RSV infections on healthcare systems and payers was found to be substantial, globally, underscoring the need for RSV preventive strategies for reducing this burden.

Translation and Validation of the 10-Item FAMCARE Scale to Assess Satisfaction of Family Caregivers With Care Given to Cancer Patients.

CONTEXT: Family satisfaction with care is an important quality indicator in palliative care. OBJECTIVES: This study aimed to translate and validate the 10-item Family Satisfaction with End-of-Life Care (FAMCARE) tool. METHODS: Family caregivers of patients with advanced cancer were recruited. FAMCARE was translated from English to Chinese using a forward and backward translation process. Chinese-speaking caregivers were interviewed with the preliminary Chinese FAMCARE, and phrasing was edited to ensure clarity of the items. Subsequently, a baseline and follow-up survey in English and the finalized Chinese version were performed to assess psychometric properties. Cronbach's alpha (α) and intraclass correlation coefficient were used for internal consistency and test-retest reliability, respectively. Validity was assessed with Spearman's correlation coefficient (r). The Comprehensive Needs Assessment Tool-Caregiver (CNAT-C) and a one-item assessment by caregivers regarding "good-care" acted as a validity criterion. Pooled analysis of both languages and language-specific analyses were performed. RESULTS: There were 259 participants; 134 and 125 participants filled in the English and Chinese versions, respectively. Pooled analysis showed that the intraclass correlation coefficient of FAMCARE was 0.95; α was 0.91. There was a moderate positive correlation between the total FAMCARE scores and "good-care" (r = 0.54) and a moderate negative correlation between the total FAMCARE score and the CNAT-C "Healthcare Staff" domain (r = 0.41). There was a weak negative correlation between the total FAMCARE score and the CNAT-C domain of "family and social support" (r = -0.13). Language-specific analyses revealed similar results regarding FAMCARE's psychometric properties. CONCLUSION: FAMCARE showed good reliability and validity.