Uncovering the hidden socioeconomic impact of juvenile idiopathic arthritis and paving the way for other rare childhood diseases: an international, cross-disciplinary, patient-centered approach (PAVE Consortium).

BACKGROUND: Juvenile idiopathic arthritis (JIA) refers to a heterogeneous group of rheumatic conditions in children. Novel drugs have greatly improved disease outcomes; however, outcomes are impacted by limited awareness of the importance of early diagnosis and adequate treatment, and by differences in access across health systems. As a result, patients with JIA continue to be at risk for short- and long-term morbidity, as well as impacts on virtually all aspects of life of the child and family. MAIN BODY: Literature on the socioeconomic burden of JIA is largely focused on healthcare costs, and the impact of JIA on patients, families, and communities is not well understood. High quality evidence on the impact of JIA is needed to ensure that patients are receiving necessary support, timely diagnostics, and adequate treatment, and to inform decision making and resource allocation. This commentary introduces the European Joint Programme on Rare Diseases: Producing an Arthritis Value Framework with Economic Evidence: Paving the Way for Rare Childhood Diseases (PAVE) project, which will co-develop a patient-informed value framework to measure the impact of JIA on individuals and on society. With a patient-centered approach, fundamental to PAVE is the involvement of three patient advocacy organizations from Canada, Israel, and Europe, as active research partners co-designing all project phases and ensuring robust patient and family engagement. The framework will build on the findings of projects from six countries: Canada, Germany, Switzerland, Spain, Israel, and Belgium, exploring costs, outcomes (health, well-being), and unmet needs (uveitis, mental health, equity). CONCLUSION: This unique international collaboration will combine evidence on costs (from family to societal), outcomes (clinical, patient and family outcomes), and unmet needs, to co-design and build a framework with patients and families to capture the full impact of JIA. The framework will support the development of high-quality evidence, encompassing economic and clinical considerations, unmet needs, and patient perspectives, to inform equitable resource allocation, health system planning, and quality of care better aligned with the needs of children with JIA, their families, and communities. Knowledge gained from this novel approach may pave the way forward to be applied more broadly to other rare childhood diseases.

Leber hereditary optic neuropathy in Czechia and Slovakia: Quality of life and costs from patient perspective.

Introduction: Leber hereditary optic neuropathy (LHON) is the most frequent mitochondrial disease causing dyschromatopsia and progressive central visual loss that is subacute in progression and painless. Several studies have been published assessing QoL in patients with LHON, but no estimate of the economic burden has been reported to date. This study aims to quantify direct non-medical and indirect costs (productivity loss) incurred by LHON patients and their informal caregivers in Czechia and Slovakia, as well as to assess their quality of life. Methods: The study was performed in 27 adults and children with LHON. To determine the socioeconomic burden of LHON, separate questionnaires for adults, children, and their parents were developed, including demographic and socioeconomic data. The following data were collected: age, education, family size, severity of LHON, non-medical direct and indirect costs of LHON. Results: The mean age of adult respondents was 36.1 years (SD 13.1; n = 21). The total cost of absenteeism was EUR 1003 per person/year in adult employees, and EUR 2711 per person/year in children's parents. The productivity loss as a consequence of LHON due to combined relative absenteeism and relative presenteeism was estimated at EUR 9840 per an adult patient/year, and EUR 6298 per a parent/year, respectively. The mean cost of informal care was estimated at EUR 4502 (SD 4772; n = 6) per person/year. The mean VFQ-25 score for adult patients with LHON was 43.47 (SD 15.86). Conclusion: The results of this study clearly show that patients with LHON and their families face an extensive socioeconomic burden related to this rare disease. Early, timely and appropriate access to diagnosis, treatment, and reimbursement decisions, but also to psychological counselling and services may help the patients and their relatives adapt and cope with the challenging aspects of vision loss and life with the disease.

Prevalences and Interrelationships of Post COVID-19 Fatigue, Sleep Disturbances, and Depression in Healthy Young and Middle-Aged Adults.

Background: An evaluation of the persistence of symptoms following COVID-19 in economically active young and middle-aged adults is crucial due to its significant socioeconomic impact resulting from compromised work performance. Methods: A prospective, multicenter study at 12 South Korean hospitals from January to December 2022 involved telephone interviews along with validated questionnaires. Results: Among 696 participants with a median age of 32 and no prior diagnoses, 30% of participants experienced persistent fatigue, while 21.4% suffered from sleep disturbance at 6 months following infection. Additionally, approximately 25% of the participants exhibited depression that endured for up to 6 months. Symptomatic individuals at 3 months exhibited a significantly higher prevalence of persistent fatigue, sleep disturbances, and depression at 6 months compared to those who remained asymptomatic. Notably, sleep disturbance and persistent fatigue at 3 months emerged as significant independent predictors of the presence of depression at 6 months. Conclusions: Even among young and middle-aged healthy adults, prolonged fatigue, sleep disturbance, and depression exhibit a significant prevalence and persisted for up to 6 months. Therefore, implementing a workplace management protocol for these symptoms is essential to mitigate the socioeconomic burden caused by the impairment of work efficiency.

The economic impact of anastomotic leakage after colorectal surgery: a systematic review.

BACKGROUND: Anastomotic leakage (AL) remains a burdensome complication following colorectal surgery, with increased morbidity, oncological compromise, and mortality. AL may impose a substantial financial burden on hospitals and society due to extensive resource utilization. Estimated costs associated with AL are important when exploring preventive measures and treatment strategies. The purpose of this study was to systematically review the existing literature on (socio)economic costs associated with AL after colorectal surgery, appraise their quality, compare reported outcomes, and identify knowledge gaps. METHODS: Health economic evaluations reporting costs related to AL after colorectal surgery were identified through searching multiple online databases until June 2023. Pairs of reviewers independently evaluated the quality using an adapted version of the Consensus on Health Economic Criteria list. Extracted costs were converted to 2022 euros (€) and also adjusted for purchasing power disparities among countries. RESULTS: From 1980 unique abstracts, 59 full-text publications were assessed for eligibility, and 17 studies were included in the review. The incremental costs of AL after correcting for purchasing power disparity ranged from €2250 (+39.9%, Romania) to €83,633 (+ 513.1%, Brazil). Incremental costs were mainly driven by hospital (re)admission, intensive care stay, and reinterventions. Only one study estimated the economic societal burden of AL between €1.9 and €6.1 million. CONCLUSIONS: AL imposes a significant financial burden on hospitals and social care systems. The magnitude of costs varies greatly across countries and data on the societal burden and non-medical costs are scarce. Adherence to international reporting standards is essential to understand international disparities and to externally validate reported cost estimates.

Socioeconomic Burden of Pyogenic Liver Abscess Caused by Klebsiella Pneumoniae from a Teaching Hospital in East China.

Background: The prevalence of pyogenic liver abscess (PLA) is increasing worldwide. However, evaluation on its economic burden is still lack. Methods: A retrospective study that included all patients identified PLA from 2017 to 2020 was conducted. Clinical information and hospital costs were collected through the electronic medical records. We evaluated the economic burden using disability-adjusted life years (DALYs). Differences in socioeconomic burdens between Klebsiella pneumoniae-caused liver abscesses (KPLA) and non-Klebsiella pneumoniae-caused liver abscesses (non-KPLA) were compared. Results: We found 327 patients identified PLA in the study, including 146 with KPLA and 181 with non-KPLA. The demographic characteristics, median hospital stay, severity, and in-hospital mortality were similar between the two groups. The median total in-hospital cost was higher in the non-KPLA than in the KPLA group, although no statistical difference was found ($3607.2 vs $3424.6; P = 0.446). The median DALY loss was significantly higher in the KPLA than in the non-KPLA group [1.49 (0.97-2.30) vs 1.27 (0.87-1.89); P = 0.033)], and male patients presented a higher average DALY loss than female patients. KPLA had a substantially greater median indirect economic loss than the non-KPLA group [$1442.8 (915.9-17,221.5) vs $1232.5 (764.6-15,473.0); P = 0.028], and indirect economic loss exhibited a significant increase from 2017 to 2020 in patients with PLA. No differences were found in the socioeconomic burden between the two groups [$8019.6 (4200.3-21,832.1) vs $7436.4 (4023.2-19,063.9); P = 0.172]. Conclusion: The economic burden of PLA is significant, particularly in patients with KP. Patients with KPLA experienced increased DALY loss and indirect economic loss than non-KPLA. PLA must be prioritized as the indirect economic burden rises annually.

Socioeconomic impacts of airborne and droplet-borne infectious diseases on industries: a systematic review.

BACKGROUND: Recent pandemics have had far-reaching effects on the world's largest economies and amplified the need to estimate the full extent and range of socioeconomic impacts of infectious diseases outbreaks on multi-sectoral industries. This systematic review aims to evaluate the socioeconomic impacts of airborne and droplet-borne infectious diseases outbreaks on industries. METHODS: A structured, systematic review was performed according to the PRISMA guidelines. Databases of PubMed, Scopus, Web of Science, IDEAS/REPEC, OSHLINE, HSELINE, and NIOSHTIC-2 were reviewed. Study quality appraisal was performed using the Table of Evidence Levels from Cincinnati Children's Hospital Medical Center, Joanna Briggs Institute tools, Mixed Methods Appraisal Tool, and Center of Evidence Based Management case study critical appraisal checklist. Quantitative analysis was not attempted due to the heterogeneity of included studies. A qualitative synthesis of primary studies examining socioeconomic impact of airborne and droplet-borne infectious diseases outbreaks in any industry was performed and a framework based on empirical findings was conceptualized. RESULTS: A total of 55 studies conducted from 1984 to 2021 were included, reporting on 46,813,038 participants working in multiple industries across the globe. The quality of articles were good. On the whole, direct socioeconomic impacts of Coronavirus Disease 2019, influenza, influenza A (H1N1), Severe Acute Respiratory Syndrome, tuberculosis and norovirus outbreaks include increased morbidity, mortality, and health costs. This had then led to indirect impacts including social impacts such as employment crises and reduced workforce size as well as economic impacts such as demand shock, supply chain disruptions, increased supply and production cost, service and business disruptions, and financial and Gross Domestic Product loss, attributable to productivity losses from illnesses as well as national policy responses to contain the diseases. CONCLUSIONS: Evidence suggests that airborne and droplet-borne infectious diseases have inflicted severe socioeconomic costs on regional and global industries. Further research is needed to better understand their long-term socioeconomic impacts to support improved industry preparedness and response capacity for outbreaks. Public and private stakeholders at local, national, and international levels must join forces to ensure informed systems and sector-specific cost-sharing strategies for optimal global health and economic security.

Work-Related Asthma and Its Impact on Quality of Life and Work Productivity.

BACKGROUND: The impact of work-related asthma (WRA) on quality of life (QoL) and work productivity remains largely neglected/uncertain despite its high prevalence. OBJECTIVE: To investigate the association of WRA with QoL and work productivity as compared with subjects with non-WRA and those without asthma and rhinitis. METHODS: A cross-sectional survey was carried out among workers during their periodic occupational health visit in Belgium. The Mini Asthma Quality of Life Questionnaire, the 8-item Medical Outcome Study Short Form instrument, and the Work Productivity and Activity Impairment-General Health questionnaire were administered. Survey participants were divided into 3 groups: (1) WRA (current asthma with ≥2 respiratory symptoms at work; n = 89); (2) non-WRA (current asthma without work-related respiratory symptoms; n = 119); and (3) the reference group (no asthma and no lower respiratory, nasal, or eye symptoms; n = 815). Associations of QoL and work productivity with WRA were evaluated by multivariable regression analyses. RESULTS: WRA and having poor asthma control were significantly associated with lower global Mini Asthma Quality of Life Questionnaire scores compared with non-WRA. Asthmatic subjects had significantly lower physical and mental health component scores of the 8-item Medical Outcome Study Short Form instrument and overall work productivity compared with the reference group, with greater impairment in workers with WRA than in those without WRA. Moreover, workers with WRA had higher percentages of doctor visits and income reduction because of respiratory symptoms than those with non-WRA. Work-related rhinitis and depression were associated with reduced QoL, independent of the effect of WRA. CONCLUSIONS: WRA should be managed comprehensively to reduce the worsening of QoL and work productivity of those affected.

The socioeconomic burden of acromegaly.

Acromegaly is a rare and insidious disease characterized by chronic excess growth hormone, leading to various morphological changes and systemic complications. Despite its low prevalence, acromegaly poses a significant socioeconomic burden on patients and healthcare systems. This review synthesizes the current state of knowledge on the psychosocial burden, disability, impact on daily life, and cost of acromegaly disease, focusing on the quality of life, partnership, medical care and treatment afflictions, participation in daily activities, professional and leisure impairment, and cost of treatment for acromegaly and its comorbidities. It also examines management strategies, coping mechanisms, and interventions aimed at alleviating this burden. A comprehensive understanding of the extent of the socioeconomic burden in acromegaly is crucial to develop effective strategies to improve treatment and care. Further research is warranted to explore the myriad factors contributing to this burden, as well as the efficacy of interventions to alleviate it, ultimately enhancing the quality of life for patients with acromegaly.

The Socioeconomic Impact of Irritable Bowel Syndrome: An Analysis of Direct and Indirect Health Care Costs.

BACKGROUND & AIMS: Irritable bowel syndrome (IBS) is associated with substantial costs to society. Extensive data on direct costs (health care consumption) and indirect costs (health-related productivity loss) are lacking. Hence, we examined the socioeconomic costs of IBS and assessed which patient characteristics are associated with higher costs. METHODS: Cross-sectional data from 3 Rome-defined Dutch IBS patient cohorts (n = 419) were collected. Bootstrapped mean direct and indirect costs were evaluated per patient with IBS using validated questionnaires (ie, medical cost questionnaire and productivity cost questionnaire, respectively). Multivariable regression analyses were performed to identify variables associated with higher costs. RESULTS: Quarterly mean total costs per patient were €2.156 (95% confidence interval (CI), €1793-€2541 [$2444]), consisting of €802 (95% CI, €625-€1010 [$909]) direct costs and €1.354 (95% CI, €1072-€1670 [$1535]) indirect costs. Direct costs consisted primarily of health care professional consultations, with costs related to gastrointestinal clinic visits accounting for 6% and costs related to mental health care visits for 20%. Higher direct costs were significantly associated with older age (P = .007), unemployment (P = .001), IBS subtypes other than constipation (P = .033), lower disease-specific quality of life (P = .027), and more severe depressive symptoms (P = .001). Indirect costs consisted of absenteeism (45%), presenteeism (42%), and productivity loss related to unpaid labor (13%) and were significantly associated with the male sex (P = .014) and more severe depressive symptoms (P = .047). CONCLUSIONS: Productivity loss is the main contributor to the socioeconomic burden of IBS. Direct costs were not predominantly related to gastrointestinal care, but rather to mental health care. Awareness of the nature of costs and contributing patient factors should lead to significant socioeconomic benefits for society.

Economic Burden of Cervical and Head and Neck Cancer in Taiwan from a Societal Perspective.

BACKGROUND: Head and neck cancers (HNC) are increasingly recognized as important human papillomavirus (HPV)-related malignancies in addition to cervical cancer (CC). However, data on the socioeconomic impact of HNC and CC in Taiwan are limited. METHODS: A retrospective cohort study was conducted to estimate the total direct medical cost and indirect productivity loss from CC and HNC between 2014 and 2015. Patient data from the Taiwan National Cancer Registry were analyzed, with matched non-cancer controls from the Taiwan National Healthcare Reimbursement Database. Indirect costs due to premature deaths were calculated using public data from Taiwanese government reports. RESULTS: In the direct cost analysis, 2083 patients with newly diagnosed CC and 11,078 with newly diagnosed HNC (10,036 males) were identified between 2014 and 2015 and followed up through the end of 2016 or until death. The total direct medical costs incurred in 2014 and 2015 due to HNC were 11.54 times higher in males than in females, and 4.55 times higher than CC. Indirect cost analysis showed the total annual productivity loss was New Taiwan Dollar (NTD) $12 billion in 2019, and 79.99% was attributed to male HNC. CONCLUSION: In Taiwan, the socioeconomic burden associated with male HNC is high and greater than that seen with CC. While not all HNCs are attributable to HPV infection, prevention of HNC through HPV vaccination should be considered for both sexes.

Quality of Life in Mucormycosis Patients Post Discharge: A Pilot Study Using a New MQOL-36 Questionairre.

To evaluate the Quality of Life in Mucormycosis patients in our hospital using a new MQOL36 questionnaire post discharge. 37 cases between Apr 2021 to July 2021 were included in the study with a minimum follow up period of 4 weeks. They were administered Mucormycosis quality-of-life questionnaire (MQOL-36) either in person or via telephonic interview and answers were recorded into digital questionnaire modulated by us using a digital data recording app-KoBoCollect. Their demographic, clinical, imaging, histopathological and treatment data was retrieved and analysed. Most of the patients reported their health to be good with only 1 patient who had extensive cranial involvement reporting as poor and still undergoing repeated surgeries. 46.67% had no nasal complaints, 20% had nasal obstruction, 13.33% had nasal discharge with 2 patients complaining of crusting and 1 of whistling sound at quiet respiration. Most worrying factor was financial condition with 33.33% patients financially distraught and 43.33% being affected but barely managing at present. Only 2 patients reported no economic impact. Mucormycosis in COVID-19 has changed the face of otorhinolaryngology as we know it-while treating the disease is important, treating the post operative aftermath also becomes equally important. The MQOL-36 produces a quality-of-life profile scoring an individual's perception of quality of life in the following domains: Physical, Psychological, Level of Independence, Social Relationships and Environment. Monitoring the quality of life in patients post discharge could help us manage the enormous morbidity associated with the disease.

Understanding the socioeconomic costs of dystrophic epidermolysis bullosa in Europe: a costing and health-related quality of life study.

BACKGROUND: Dystrophic epidermolysis bullosa (EB) is a family of rare genetic dermatological conditions. Recent evidence indicated that in addition to its detrimental implications on patient health-related quality of life (HRQoL), there are substantial socioeconomic cost implications, especially regarding direct non-medical costs. This study aims to understand the burden of dystrophic EB (DEB) in Europe, using a primary EB patient-level dataset. METHODS: A bottom-up, cross-sectional, study design was adopted for non-institutionalised patients diagnosed with EB who received outpatient care across EU5 countries: France, Germany, Italy, Spain, and the United Kingdom. A prevalence-based approach was used to estimate resource utilisation from a societal perspective, including direct (medical and non-medical) and indirect costs for patients and caregivers. Patient and caregiver outcomes were obtained using the EQ-5D questionnaire. RESULTS: A sample of 91 DEB patients was analysed. Overall, average EU5 annual cost per patient was estimated at €53,359, ranging from €18,783 (France) to €79,405 (Germany). Average EU5 annual direct medical costs were estimated at €8357 (15.7% of total), ranging from €5658 (France) to €12,576 (Germany); average direct non-medical costs were estimated at €41,353 (77.5% of total), ranging from €11,961 (France) to €57,000 (Germany); and average indirect costs were estimated at €3649 (6.8% of total), ranging from €1025 (Italy) to €9930 (United Kingdom). Costs varied across patients with different disability but also between children and adults. The mean EQ-5D index score for adult DEB patients ranged between 0.304 (United Kingdom) and 0.541 (Germany), with an EU5 average of 0.456, whereas the mean EQ-5D visual analogue scale score ranged between 47.5 (Germany) and 70.0 (France), with an EU5 average of 61.9. Limitations included potential patient selection bias, recall bias, and exclusion of bandaging and related costs. CONCLUSIONS: The study revealed a substantial socioeconomic burden for DEB in Europe, attributable mostly to high direct non-medical costs, with the majority of patients requiring support from caregivers at home. Compared to the average economic burden of the overall EB patient population, costs for DEB patients are higher across all components of direct medical, direct non-medical and indirect costs.

Clinical and socioeconomic burden of rhinoviruses/enteroviruses in the community.

BACKGROUND: The epidemiology, clinical features, and socioeconomic burden associated with detection of rhinoviruses (RV)/enteroviruses (EV) from individuals in the community with acute respiratory infections (ARIs) are not fully understood. METHODS: To assess the clinical and socioeconomic burden associated with RV/EV, a secondary analysis of data collected during a prospective, community-based ARI surveillance study was performed. From December 2012 to September 2017, adult and pediatric participants with ARIs had nasopharyngeal specimens obtained and tested by multiplex polymerase chain reaction assay. Characteristics and socioeconomic burden including missed school or work and/or antibiotic use among participants who did and did not seek medical care and among participants with and without co-detection of another respiratory pathogen with RV/EV were compared. RESULTS: Throughout the study period, RV/EV was detected in 54.7% (885/1617) of ARIs with a respiratory pathogen detected. Most ARI episodes associated with RV/EV occurred in females (59.1%) and children ≤17 years old (64.2%). Those ≤17 years were more likely to seek medical care. Compared to those not seeking medical care (n = 686), those seeking medical care (n = 199) had a longer duration of illness (5 vs. 7 days) and were more likely to miss work/school (16.4% vs. 47.7%) and/or use antibiotics (3.6% vs. 34.2%). Co-detection occurred in 8% of ARIs of which 81% occurred in children. Co-detection was not associated with longer illness, more missed work/or school, or antibiotic use. CONCLUSION: Non-medically attended and medically attended ARIs associated with RV/EV resulted in clinical and socioeconomic burden, regardless of co-detection of other respiratory pathogens.

Socioeconomic Burden of Bloodstream Infections Caused by Carbapenem-Resistant Enterobacteriaceae.

BACKGROUND: Although infection with carbapenem-resistant Enterobacteriaceae (CRE) has become an urgent public health threat worldwide, the socioeconomic burden of CRE bloodstream infection (BSI) remains to be clarified. METHODS: This retrospective study included all patients infected with Escherichia coli or Klebsiella pneumoniae who were hospitalized for BSI from 2013 to 2015. Socioeconomic burden, including direct and indirect economic burden, was compared in patients infected with carbapenem-sensitive Enterobacteriaceae (CSE) and CRE following 1:1 propensity score matching (PSM) to control for confounding variables. RESULTS: Data from 879 patients with Enterobacteriaceae BSI were evaluated, including 152 (17.3%) patients infected with CRE and 727 (82.7%) infected with CSE. PSM yielded 112 pairs of 224 patients. Median hospital length of stay did not differ significantly in the CRE and CSE groups (35 vs 29 days, P = 0.089), but in-hospital 28-day mortality rate was significantly higher in patients infected with CRE than with CSE (45.5% vs 32.1%, P = 0.040). Median direct economic burden was significantly greater in patients with CRE-BSI than with CSE-BSI during hospitalization ($24,940.1 vs 16,864.0, P = 0.017) but not during the period after infection ($10,403.4 vs 8498.0, P = 0.178). Drug expenditure accounted for the largest proportion of costs in both groups. The median disability-adjusted life year (DALY) was higher in CRE-BSI than in CSE-BSI patients, but the difference was not statistically significant (7.9 vs 6.7 years, P = 0.190). Median indirect economic burden did not differ significantly in these two groups ($3848.5 vs 1139.9, P = 0.304), although indirect economic burden increased significantly from 2013 to 2015 in patients with CRE-BSI. CONCLUSION: Carbapenem resistance had a major impact on the clinical and socioeconomic burden of patients with Enterobacteriaceae BSI. The higher mortality rate in patients with CRE-BSI was associated with increased direct healthcare burden and indirect socioeconomic loss.

The LUCID study: living with ulcerative colitis; identifying the socioeconomic burden in Europe.

BACKGROUND: Ulcerative colitis (UC) is an inflammatory bowel disease with increasing prevalence worldwide. Current treatment strategies place considerable economic and humanistic burdens on patients. The aim of this study was to determine the socioeconomic burden of UC in adult patients in European countries in a real-world setting. METHODS: In this retrospective, cross-sectional and observational pan-European study, patients with moderate or severe UC were assigned to ARM 1 and patients who had moderate or severe UC but achieved mild or remission status 12 months before index date (or clinical consultation date), were assigned to ARM 2. Clinical and medical resource use data were collected via electronic case report forms, and data on non-medical and indirect costs, and health-related quality of life (HRQoL) were collected via patient and public involvement and engagement (PPIE) questionnaires. Per-patient annual total costs per ARM and per country were calculated using the collated resource use in the last 12 months (between the start of the documentation period and patient consultation or index date) and country specific unit costs. Quality of life was described by arm and by country. RESULTS: In the physician-reported eCRF population (n = 2966), the mean annual direct medical cost was €4065 in ARM 1 (n = 1835) and €2935 in ARM 2 (n = 1131). In the PPIE population (ARM 1, n = 1001; ARM 2, n = 647), mean annual direct cost was €4526 in ARM 1 and €3057 in ARM 2, mean annual direct non-medical cost was €1162 in ARM 1 and €1002 in ARM 2, mean annual indirect cost was €3098 in ARM 1 and €2309 ARM 2, and mean annual total cost was in €8787 in ARM 1 and €6368 in ARM 2. HRQoL scores showed moderate to high burden of UC in both groups. CONCLUSIONS: The cost and HRQoL burden were high in patients in both ARM 1 and ARM 2 indicating unmet needs in the UC active population.

Added socioeconomic burden of non-communicable disease on HIV/AIDS affected households in the Asia Pacific region: A systematic review.

BACKGROUND: HIV/AIDS causes significant socioeconomic burden to affected households and individuals, which is exacerbated by non-communicable diseases (NCDs). The Asia Pacific Region (APR) comprises about 60% of the global population and has been significantly affected by HIV/AIDS with 5.8 million after Sub-Saharan Africa in 2019. We investigated socioeconomic impacts of HIV/AIDS alone and the added burden of NCDs on HIV-affected households (HIV-HHs) and individuals in the APR. METHOD: We searched multiple databases for studies published in English over 30 years on socioeconomic impact of HIV/AIDS alone and HIV/AIDS with NCDs on affected households or individuals in APR. Findings were synthesised across six domains: employment, health-related expenditure, non-health expenditure, strategies for coping with household liabilities, food security, and social protection. FINDINGS: HIV-HHs had a significantly higher socioeconomic burden compared to Non-HIV households. Total household expenditure was lower in HIV-HHs but with higher expenditure on health services. HIV-HHs experienced more absenteeism, lower wages, higher unemployment, and higher food insecurity. There is a paucity of evidence on the added burden of NCDs on HIV-HHs with only a single study from Myanmar. INTERPRETATION: Understanding the socioeconomic impact of HIV/AIDS with and without NCD is important. The evidence indicates that HIV-HHs in APR suffer from a significantly higher socioeconomic burden than Non-HIV-HHs. However, evidence on the additional burden of NCDs remains scarce and more studies are needed to understand the joint socioeconomic impact of HIV/AIDS and NCDs on affected households. FUNDING: Deakin University School of Health and Social Development grant and Career Continuity grant.

Socioeconomic burden of bloodstream infections caused by carbapenem-resistant and carbapenem-susceptible Pseudomonas aeruginosa in China.

OBJECTIVES: Drug resistance in Pseudomonas aeruginosa (PAE) is a serious health threat. Additionally, it is important to understand the associated socioeconomic burden. METHODS: Clinical information and hospital cost data for patients with PAE bloodstream infections (BSIs) in a tertiary teaching hospital (2011-2016) were collected retrospectively to estimate the direct economic burden. Socioeconomic loss incurred by patients was calculated using the human capital approach combined with estimating disability-adjusted life years (DALYs). Differences in socioeconomic burden between BSIs caused by carbapenem-resistant (CR) and carbapenem-susceptible (CS) PAE were compared. RESULTS: This study included data for 220 patients, of which were 29.5% (65/220) CR-PAE BSIs. The median direct economic burden of patients following CR-PAE BSI was significantly higher than following CS-PAE BSI ($5005.94 vs. $1462.86; P < 0.001). The median DALY loss was significantly higher in the CR-PAE group compared with CS-PAE group (0.024 vs. 0.008; P = 0.001). The median indirect socioeconomic loss of patients in the CR-PAE group tended to be significantly higher than in the CS-PAE group ($64.06 vs. $29.71; P = 0.011). The annual economic burden of CR-PAE is higher (up to >1.5 times) than the Chinese annual per capita GDP. CONCLUSION: The economic burden of PAE BSIs is significant, irrespective of carbapenem resistance. The direct economic burden of CR-PAE BSI was at least three-fold that of CS-PAE BSI. The DALY loss caused by CR-PAE BSI is three-fold that caused by CS-PAE BSI. The indirect socioeconomic loss caused by CR-PAE BSI is more than twice that of CS-PAE BSI.

Current State of Respiratory Syncytial Virus Disease and Management.

Respiratory syncytial virus (RSV) is a major cause of hospitalizations due to pneumonia and bronchiolitis. Substantial morbidity and socioeconomic burden are associated with RSV infection worldwide. Populations with higher susceptibility to developing severe RSV include premature infants, children with chronic lung disease of prematurity (CLDP) or congenital heart disease (CHD), elderly individuals aged > 65 years, and immunocompromised individuals. In the pediatric population, RSV can lead to long-term sequelae such as wheezing and asthma, which are associated with increased health care costs and reduced quality of life. Treatment for RSV is mainly supportive, and general preventive measures such as good hygiene and isolation are highly recommended. Although vaccine development for RSV has been a global priority, attempts to date have failed to yield a safe and effective product for clinical use. Currently, palivizumab is the only immunoprophylaxis (IP) available to prevent severe RSV in specific high-risk pediatric populations. Well-controlled, randomized clinical trials have established the efficacy of palivizumab in reducing RSV hospitalization (RSVH) in high-risk infants including moderate- to late-preterm infants. However, the American Academy of Pediatrics (AAP), in its 2014 policy, stopped recommending RSV IP use for ≥ 29 weeks' gestational age infants. Revisions to the AAP policy for RSV IP have largely narrowed the proportion of pediatric patients eligible to receive RSV IP and have been associated with an increase in RSVH and morbidity. On the other hand, after reviewing the recent evidence on RSV burden, the National Perinatal Association, in its 2018 clinical practice guidelines, recommended RSV IP use for a wider pediatric population. As the AAP recommendations drive insurance reimbursements for RSV IP, they should be revised to help further mitigate RSV disease burden.

Challenges Faced by Multidrug-Resistant Tuberculosis Patients in Three Financially Affluent Chinese Cities.

PURPOSE: The aim of this study was to analyze socioeconomic burdens and other difficulties that multidrug-resistant tuberculosis (MDR-TB) patients in cities are facing, to identify major obstacles and which groups of patients are most affected. METHODS: Face-to-face and phone-call interviews were conducted in early 2018 to follow-up with patients newly diagnosed with MDR-TB in 2017 in three tuberculosis hospitals in three financially affluent Chinese cities. Demographic data and information on their medical care, insurance coverage, and medical expenses were collected and analyzed. RESULTS: A total of 144 newly diagnosed MDR-TB cases were reviewed during the study period, excluding 38 who were lost to follow-up and 29 patients who refused to participate, 77 patients were enrolled in this study. A total of 61 (79%) of these patients were hospitalized after MDR-TB diagnosis with an average hospital stay of 14 days, of them 57 (74%) were sputum positive on diagnosis. The proportion of patients who failed community care were 48% married, 56% in white collar employment and 43% in temp jobs/unemployed. In terms of insurance coverage, the proportion of patients who failed community care were 23% with no insurance and/or New Rural Co-operative Medical Care Scheme (NRCMS) and 45% with Urban Employee Basic Medical Insurance (UEBMI)/Urban Residents Basic Medical Insurance (URBMI) and commercial insurance. Difficulties patients encountered were, financial pressure (33%), psychological stress (26%), adverse drug reactions (23%), repulsive reaction to injections (17%). Fourty-eight percent of the patients spent over ¥2000 (USD300) per month on TB treatment. CONCLUSION: Despite insurance coverage, financial hardship remains the number one difficulty MDR-TB patients encountered in relatively financially affluent cities. Among them, the married working class were found to be the most financially sensitive group and have the highest tendency to fail community care. It is of utmost urgency to enhance the current medical policy to improve treatment adherence.

Costs of illness in amyotrophic lateral sclerosis (ALS): a cross-sectional survey in Germany.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disorder. Consequently, patients undergo a multidisciplinary treatment that often requires intensive use of medical resources. This study provides an estimate on the cost of illness depending on the clinical severity while also analysing the patients' health-related quality of life. METHODS: Primary data from patients and caregivers was collected through a standardised questionnaire. Direct medical, direct non-medical and indirect costs were calculated using the latest German health economic guidelines. Patients were divided into five groups according to the King's staging system. Health-related quality of life was assessed using EuroQoL Group EQ-5D-5L™ questionnaire. Influencing factors on both total cost and quality of life were examined. RESULTS: The mean annual total cost of illness was 78,256€ per patient while the lifetime cost per patient was estimated at 246,184€. The prevalence based total burden yearly therefore was 519,776,352€ in Germany. Nearly half of the costs were attributable to informal care. With increase of the clinical severity stage, costs rose and quality of life decreased. The score of the revised Amyotrophic Laterals Sclerosis Functional Rating Scale was identified as one major influencing factor on total costs, while subjective impairment in daily activities and classification into a care level as opposed to having no care level influenced patients' quality of life. CONCLUSION: It is essential to understand the socioeconomic burden of a disease. These data can be used to improve patient care standards and quality of life while also serving as a basis for cost-benefit analyses during the approval process of new treatments.