Employment status, productivity loss, and associated factors among people with multiple sclerosis.

BACKGROUND: Multiple Sclerosis (MS) affects people in their most productive years of life. Consequently, MS can substantially affect employment and work-related outcomes. OBJECTIVES: This study characterizes productivity loss and employment status of people with multiple sclerosis (pwMS) and investigates associated factors. METHODS: We used baseline data collected as part of the Canadian Prospective Cohort Study to Understand Progression in Multiple Sclerosis (CanProCo). Using the Valuation of Lost Productivity questionnaire, we measured MS-related paid work productivity loss for those employed, productivity losses incurred by those unemployed (i.e. lost employment time), and unpaid work productivity losses for all. A set of sociodemographic, disease, and performance-related factors were investigated using a two-part regression model for productivity loss and a multinomial logistic model for employment status. RESULTS: From the cohort of 888 pwMS enrolled at baseline (mostly showing mild to moderate disability), 75% were employed, and of those unemployed, 69% attributed their unemployment to health-related issues. Total productivity loss over a 3-month period averaged 64 and 395 hours for those employed and unemployed, respectively. Some factors that affected productivity loss and employment status included use of disease-modifying therapies, fatigue, and performance indicators such as cognitive processing speed. CONCLUSION: Productivity loss experienced by employed and unemployed pwMS is substantial. Targeting the identified modifiable factors is likely to improve work productivity and permanence of MS patients in the workforce.

A Rapid Review on the Value of Biobanks Containing Genetic Information.

OBJECTIVES: Increasing access to health data through biobanks containing genetic information has the potential to expand the knowledge base and thereby improve screening, diagnosis, and treatment options for many diseases. Nevertheless, although privacy concerns and risks surrounding genetic data sharing are well documented, direct evidence in favor of the hypothesized benefits of data integration is scarce, which complicates decision making in this area. Therefore, the objective of this study is to summarize the available evidence on the research and clinical impacts of biobanks containing genetic information, so as to better understand how to quantify the value of expanding genomic data access. METHODS: Using a rapid review methodology, we performed a search of MEDLINE/PubMed and Embase databases; and websites of biobanks and genomic initiatives published from 2010 to 2022. We classified findings into 11 indicators including outputs (a direct product of the biobank activities) and outcomes (changes in scientific and clinical capacity). RESULTS: Of 8479 abstracts and 101 gray literature sources were reviewed, 96 records were included. Although most records did not report key indicators systematically, the available evidence concentrated on research indicators such as publications and gene-disorder association discoveries (63% of studies), followed by research infrastructure (26%), and clinical indicators (11%) such as supporting the diagnosis of individual patients. CONCLUSIONS: Existing evidence on the benefits of biobanks is skewed toward easily quantifiable research outputs. Measuring a comprehensive set of outputs and outcomes inspired by value frameworks is necessary to generate better evidence on the benefits of genomic data sharing.

Frameworks for Health Technology Assessment at an Early Stage of Product Development: A Review and Roadmap to Guide Applications.

OBJECTIVES: Early health technology assessment (eHTA) can be used to evaluate and optimize a medical product's value proposition and to inform go/no-go decisions by using health economic modeling, literature scanning, and stakeholder preference studies at an early stage of development. eHTA frameworks offer high-level guidance on conducting this complex, iterative, and multidisciplinary process. The objective of this study was to review and summarize existing eHTA frameworks, understood as systematic approaches to guide early evidence generation and decision making. METHODS: Using a rapid review methodology, we identified all relevant studies published in English, French, and Spanish from PubMed/MEDLINE and Embase until February 2022. We only included frameworks relevant to the preclinical and early clinical (phase I) stages of medical product development. RESULTS: From 737 reviewed abstracts, 53 publications describing 46 frameworks were selected for inclusion and classified into categories based on their scope: (1) criteria frameworks, which provide an overview of eHTA; (2) process frameworks, which offer stepwise guidance for conducting eHTA, including preferred methods; and (3) methods frameworks, which provide detailed descriptions of specific eHTA methods. Most of the frameworks did not specify their target users or the specific stage of technology development. CONCLUSIONS: Despite some variability and gaps found across existing frameworks, the structure provided by this review helps inform eHTA applications. Remaining challenges are the frameworks' limited accessibility to users without a background in health economics, poor distinctions being made among early lifecycle stages and technology types, and the inconsistent terminology used to describe eHTA in different contexts.

Direct Health Care Costs Associated With Multiple Sclerosis: A Population-Based Cohort Study in British Columbia, Canada, 2001-2020.

BACKGROUND AND OBJECTIVES: Multiple sclerosis (MS), a leading cause of nontraumatic neurologic disability in young adults, exerts a substantial economic burden on the health care system. The objective of this study was to quantify the excess health care costs of MS in British Columbia, Canada. METHODS: A retrospective-matched cohort study of patients with MS was conducted using population-based administrative health data from 2001 to 2020. Patients with MS who satisfied a validated case definition were matched to 5 unique controls without MS on sex, age, and cohort entry date. Patients and controls were followed to the end of 2020 or to their last health care resource use, whichever came first. We calculated the direct medical costs for each individual, including outpatient services use, hospital admissions, and dispensed medications. We used generalized linear models with an identity link and normal distribution to estimate the excess cost of MS as the mean cost difference between patients with MS and controls. All costs were reported in 2020 Canadian dollars. RESULTS: A total of 17,071 patients with MS were matched to 85,355 controls. Overall, 72.4% were female, and the mean age at cohort entry date was 46.1 years. The excess cost of MS was $6,881 (95% CI: $6,713, $7,049) per patient-year. Inpatient, outpatient, and medication costs accounted for 25%, 10%, and 65% of excess costs, respectively. Excess costs were higher in patients with MS with at least one disease-modifying therapy (DMT) prescription ($13,267; 95% CI: $12,992-$13,542) compared with non-DMT users ($3,469; 95% CI: $3,297-$3,641) and even higher among frequent DMT users ($24,835; 95% CI: $24,528-$25,141). Patients with MS with a history of at least one relapse requiring hospitalization had higher excess costs ($10,543; 95% CI: $10,136-$10,950) compared with patients with MS without a relapse; hospitalizations accounted for 51% of the costs in this group. The excess cost of hospitalizations was $1,391 lower among frequent DMT users than non-DMT users. DISCUSSION: The economic burden of MS is considerable, with medications, particularly DMTs, being the largest cost driver. Future studies should investigate how disease management strategies, including early diagnosis and timely use of DMTs, could offset future and ongoing costs while improving patients' quality of life.

The effect of rapid exome sequencing on downstream health care utilization for infants with suspected genetic disorders in an intensive care unit.

PURPOSE: This study aimed to compare downstream utilization of medical services among critically ill infants admitted to intensive care units who received rapid exome sequencing (ES) and those who followed alternative diagnostic testing pathways. METHODS: Using propensity score-weighted regression models including sex, age at admission, and severity indicators, we compared a group of 47 infants who underwent rapid ES with a group of 211 infants who did not receive rapid ES. Utilization and cost indicators were compared between cohorts using negative binomial models for utilization and two-part models for costs. RESULTS: After controlling for patients' sociodemographic and clinical characteristics, we found no statistically significant difference in outpatient visits, hospitalizations, intensive care unit or total length of stay, or length of stay-associated costs between the cohorts at 12- or 26-month follow-up. Similarly, there was no evidence of higher utilization or costs by the ES group when infants who died were removed from the analysis. CONCLUSION: When examining utilization during and beyond the diagnostic trajectory, there is no evidence that ES changes frequency of outpatient visits or use of in-hospital resources in critically ill infants with suspected genetic disorders.

Productivity loss among people with early multiple sclerosis: A Canadian study.

OBJECTIVES: To analyze work productivity loss and costs, including absenteeism (time missed from work), presenteeism (reduced productivity while working), and unpaid work loss, among a sample of employed people with multiple sclerosis (pwMS) in Canada, as well as its association with clinical, sociodemographic, and work-related factors. METHODS: We used cross-sectional data collected as part of the Canadian Prospective Cohort Study to Understand Progression in MS (CanProCo) and information from the Valuation of Lost Productivity questionnaire. RESULTS: Among 512 pwMS who were employed, 97% showed no or mild disability and 55% experienced productivity loss due to MS in the prior 3 months. Total productivity time loss over a 3-month period averaged 60 hours (SD = 107; 23 from presenteeism, 19 from absenteeism, and 18 from unpaid work), leading to a mean cost of lost productivity of CAD$2480 (SD = 4282) per patient, with an hourly paid productivity loss greater than the wage loss. Fatigue retained significant associations with all productivity loss outcomes. CONCLUSION: Unpaid work loss and productivity losses exceeding those of the employee alone (due to teamwork and associated factors) are key additional contributors of the high economic burden of MS. Workplace accommodations and treatments targeted at fatigue could lessen the economic impact of MS.

Where is genetic medicine headed? Exploring the perspectives of Canadian genetic professionals on future trends using the Delphi method.

Driven by technological and scientific advances, the landscape of genetic medicine is rapidly changing, which complicates strategic planning and decision-making in this area. To address this uncertainty, we sought to understand genetic professionals' opinions about the future of clinical genetic and genomic services in Canada. We used the Delphi method to survey Canadian genetic professionals about their perspectives on whether scenarios about changes in service delivery and the use of genomic testing would be broadly implemented in their jurisdiction by 2030. We conducted two survey rounds; the response rates were 32% (27/84) and 67% (18/27), respectively. The most likely scenario was the universal use of noninvasive prenatal screening. The least likely scenarios involved population-based genome-wide sequencing for unaffected individuals. Overall, the scenarios perceived as most likely were those that have existing evidence about their benefit and potential medical necessity, whereas scenarios were seen as unlikely if they involved emerging technologies. Participants expected that the need for genetic healthcare services would increase by 2030 owing to changes in clinical guidelines and increased use of genome-wide sequencing. This study highlights the uncertainty in the future of genetic and genomic service provision and contributes evidence that could be used to inform strategic planning in clinical genetics.

Electronic medical records and primary care quality: Evidence from Manitoba.

Improvements in quality of care through supporting decision-making processes and increased efficiency have prompted widespread implementation of electronic medical records (EMRs) in Canada. Using a set of indicators of preventive care, chronic disease management, and hospitalizations due to ambulatory care sensitive conditions (ACSC), this study measures the effect of EMR adoption on quality of primary care measures. Population-based data for the Canadian province of Manitoba are used in a difference-in-differences approach with patient- and time-fixed effects. Evidence of changes in the selected quality-of-care indicators is weak, with preventive care, management of asthma, and hospitalizations showing no significant change due to EMR adoption. A statistically significant increase in the quality of diabetes care was found for EMR users, changes being larger for late EMR adopters which is possibly explained by a network effect. This research demonstrates that measuring whether EMRs prompt changes in the quality of care confronts serious challenges. The rapid evolution and gradual adoption of EMR technology, the inevitable learning/acceptance process by individual health practitioners, and its potential reflection on different patient populations create unmeasurable variables that confound EMRs' impact. This study also underscores the importance of data development to support the economic value of EMRs.

Data on medical technology: A new set of variables.

This article provides and describes a database containing three different variables for medical technology. To capture the various dimensions of medical technology, the set of variables covers not only drugs and devices but also general advances in medical knowledge. Information was extracted and processed from the Drug Canada Product Database, and the National Institute of Health. Variables are extracted from 1997 to 2017 and they represent global proxies. The provided data is relevant for healthcare research in various fields of study.