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result(s) for
"Juanita A. Haagsma"
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Development of a PROM set for patients with Guillain–Barré syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP): study protocol
by
Haagsma, Juanita. A.
,
Jacobs, Bart C.
,
Terwee, Caroline B.
in
Check lists
,
Chronic inflammatory demyelinating polyneuropathy
,
Collaboration
2025
Background
Guillain–Barré syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) are rare immune-mediated disorders of the peripheral nervous system. They cause significant physical and mental symptoms and functional impairments that impact patients’ daily lives. Current treatment does not effectively prevent the occurrence of these residual symptoms and functional limitations. Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) are essential tools that capture patients’ perspectives on their own health, which can be used to assess disease impact and evaluate treatment efficacy. The commonly used Inflammatory Rasch-Built Overall Disability Scale (I-RODS) primarily focuses on activity limitations, social participation, but has been noted to have certain clinimetric shortcomings. This highlights the need for a tailored PROM set that comprehensively assesses relevant aspects of health-related quality of life (HRQL) in patients with GBS or CIDP.
Methods
This prospective mixed-method study consists of a multiphase approach for developing a PROM set in a Dutch adult population with GBS and CIDP. The first phase involves a systematic review and an (online) survey with open-ended questions to identify relevant patient-reported outcomes (PROs), which will be analyzed qualitatively. Subsequently, stakeholder panel meetings will be held with patients and healthcare providers to discuss the identified PROs, including generic and disease specific symptoms and existing suitable PROMs, using the generic Patient Reported Outcomes Measurement Information System (PROMIS) as a basis. Following this, cognitive interviews will be performed to pilot-test a new disease-specific symptom checklist. A Delphi study will then be conducted to achieve consensus on the final PROM set. Finally, a validation study of the selected PROMIS measures and the newly developed disease-specific symptom checklist will be performed. The final phase of the study involves a consensus meeting with the stakeholders to discuss dissemination and implementation strategies for the proposed PROM set.
Discussion
This PROM set is being developed to measure HRQL outcomes relevant for patients with GBS and CIDP. The aim is to develop a tool for clinical practice and research to evaluate the clinical course and effect of treatments from the perspective of patients.
Trial registration
Not applicable.
Journal Article
Prevalence of and Risk Factors for Anxiety and Depressive Disorders after Traumatic Brain Injury: A Systematic Review
by
Scholten, Annemieke C.
,
van Beeck, Ed F.
,
Olff, Miranda
in
Anxiety disorders
,
Anxiety Disorders - diagnosis
,
Anxiety Disorders - epidemiology
2016
This review examined pre- and post-injury prevalence of, and risk factors for, anxiety disorders and depressive disorders after traumatic brain injury (TBI), based on evidence from structured diagnostic interviews. A systematic literature search was conducted in EMBASE, MEDLINE, Cochrane Central, PubMed, PsycINFO, and Google Scholar. We identified studies in civilian adults with TBI reporting on the prevalence of anxiety and depressive disorders using structured diagnostic interviews and assessed their quality. Pooled pre- and post-injury prevalence estimates of anxiety disorders and depressive disorders were computed. A total of 34 studies described in 68 publications were identified, often assessing anxiety disorders (n = 9), depressive disorders (n = 7), or a combination of disorders (n = 6). Prevalence rates of psychiatric disorders varied widely. Pooled prevalence estimates of anxiety and depressive disorders were 19% and 13% before TBI and 21% and 17% in the first year after TBI. Pooled prevalence estimates increased over time and indicated high long-term prevalence of Axis I disorders (54%), including anxiety disorders (36%) or depressive disorders (43%). Females, those without employment, and those with a psychiatric history before TBI were at higher risk for anxiety and depressive disorders after TBI. We conclude that a substantial number of patients encounter anxiety and depressive disorders after TBI, and that these problems persist over time. All health care settings should pay attention to the occurrence of psychiatric symptoms in the aftermath of TBI to enable early identification and treatment of these disorders and to enhance the recovery and quality of life of TBI survivors.
Journal Article
Deriving disability weights for the Netherlands: findings from the Dutch disability weights measurement study
2024
Background
The aims of this study were to establish national disability weights based on the health state preferences of a Dutch general population sample, examine the relation between results and respondent’s characteristics, and compare disability weights with those estimated in the European disability weights study.
Methods
In this cross-sectional study, a web-based survey was administered to a general population 18–75 years from the Netherlands. The survey included paired comparison questions. Paired comparison data were analysed using probit regression and located results onto the 0-to-1 disability weight scale using non-parametric regression. Bootstrapping was used to estimate 95% uncertainty intervals (95%UI). Spearman’s correlation was used to investigate the relation of probit regression coefficients between respondent’s characteristics.
Results
3994 respondents completed the questionnaire. The disability weights ranged from 0.007 (95%UI: 0.003–0.012) for mild distance vision impairment to 0.741 (95% UI: 0.498–0.924) for intensive care unit admission. Spearman’s correlation of probit coefficients between sub-groups based on respondent’s characteristics were all above 0.95 (
p
< 0.001). Comparison of disability weights of 140 health states that were included in the Dutch and European disability weights study showed a high correlation (Spearman’s correlation: 0.942;
p
< 0.001); however, for 76 (54.3%) health states the point estimate of the Dutch disability weight fell outside of the 95%UI of the European disability weights.
Conclusions
Respondent’s characteristics had no influence on health state valuations with the paired comparison. However, comparison of the Dutch disability weights to the European disability weights indicates that health state preferences of the general population of the Netherlands differ from those of other European countries.
Journal Article
The global burden of disease study 2013: What does it mean for the NTDs?
by
Basáñez, María-Gloria
,
King, Charles H.
,
Ramaiah, Kapa D.
in
African trypanosomiasis
,
Bacterial infections
,
Bacterial Infections - economics
2017
[...]other major trends noted in GBD 2013 include a 71% reduction in the number of cases of human African trypanosomiasis (HAT) infection. Because such cases were not included in the current estimates, this may have led to an underestimation of the burden of cysticercosis by the GBD 2013. [...]this means that part of the disability incurred by other neurological and mental health disorders caused by NCC increases the DALYs of these diseases, making other disorders look less important. [...]terms such as prevalence or cases are not always clearly defined in GBD models for individual diseases, which can create some confusion when interpreting the meaning of the results. [...]we have not seen meaningful declines in diseases such as hookworm infection, trichuriasis, and schistosomiasis, while for dengue, leishmaniasis, and foodborne trematodiases, we have seen substantial increases [3]. [...]we need to consider adopting public health policies to address these trends and adapt our current approaches to specifically guide better disease surveillance, improved water quality and sanitation, affordable diagnostic tests, access to healthcare and medications, and further investments in new preventive and disease-control technologies.
Journal Article
Mortality burden of cardiovascular disease attributable to ambient PM2.5 exposure in Portugal, 2011 to 2021
by
Charalampous, Periklis
,
Haagsma, Juanita A.
,
Martins, Carla
in
Age groups
,
Air pollution
,
Biostatistics
2024
Background
Exposure to high levels of environmental air pollution causes several health outcomes and has been associated with increased mortality, premature mortality, and morbidity. Ambient exposure to PM
2.5
is currently considered the leading environmental risk factor globally. A causal relationship between exposure to PM
2.5
and the contribution of this exposure to cardiovascular morbidity and mortality was already demonstrated by the American Heart Association.
Methods
To estimate the burden of mortality attributable to environmental risk factors, a comparative risk assessment was performed, considering a “top-down” approach. This approach uses an existing estimate of mortality of the disease endpoint by all causes as a starting point. A population attributable fraction was calculated for the exposure to PM
2.5
the overall burden of IHD and stroke was multiplied by the PAF to determine the burden attributable to this risk factor. The avoidable burden was calculated using the potential impact fraction (PIF) and considering the WHO-AQG 2021 as an alternative scenario.
Results
Between 2011 and 2021, the ambient exposure to PM
2.5
resulted in a total of 288,862.7 IHD YLL and a total of 420,432.3 stroke YLL in Portugal. This study found a decreasing trend in the mortality burden attributable to PM2.5 exposure, for both males and females and different age-groups. For different regions of Portugal, the same trend was observed in the last years. The mortality burden attributable to long-term exposure to PM
2.5
was mainly concentrated in Lisbon Metropolitan Area, North and Centre. Changes in the exposure limits to the WHO recommended value of exposure (WHO-AQG 2021) have a reduction in the mortality burden due to IHD and stroke attributable to PM
2.5
exposure, in Portugal.
Conclusion
Between 2011 and 2021, approximately 22% and 23% of IHD and stroke deaths were attributable to PM
2.5
exposure. Nevertheless, the mortality burden attributable to cardiovascular diseases has been decreasing in last years in Portugal. Our findings provide evidence of the impact of air pollution on human health, which are crucial for decision-making, at the national and regional level.
Journal Article
Health-related quality of life after TBI: a systematic review of study design, instruments, measurement properties, and outcome
by
Haagsma, Juanita A
,
van Beeck, Ed F
,
van Klaveren, David
in
Activities of daily living
,
Analysis
,
Brain
2015
Measurement of health-related quality of life (HRQL) is essential to quantify the subjective burden of traumatic brain injury (TBI) in survivors. We performed a systematic review of HRQL studies in TBI to evaluate study design, instruments used, methodological quality, and outcome. Fifty-eight studies were included, showing large variation in HRQL instruments and assessment time points used. The Short Form-36 (SF-36) was most frequently used. A high prevalence of health problems during and after the first year of TBI was a common finding of the studies included. In the long term, patients with a TBI still showed large deficits from full recovery compared to population norms. Positive results for internal consistency and interpretability of the SF-36 were reported in validity studies. The Quality of Life after Brain Injury instrument (QOLIBRI), European Brain Injury Questionnaire (EBIQ), Child Health Questionnaire (CHQ), and the World Health Organization Quality of Life short version (WHOQOL-BREF) showed positive results, but evidence was limited. Meta-analysis of SF-36 showed that TBI outcome is heterogeneous, encompassing a broad spectrum of HRQL, with most problems reported in the physical, emotional, and social functioning domain. The use of SF-36 in combination with a TBI-specific instrument, i.e., QOLIBRI, seems promising. Consensus on preferred methodologies of HRQL measurement in TBI would facilitate comparability across studies, resulting in improved insights in recovery patterns and better estimates of the burden of TBI.
Journal Article
Traumatic Brain Injury in the Netherlands: Incidence, Costs and Disability-Adjusted Life Years
2014
Traumatic brain injury (TBI) is a major cause of death and disability, leading to great personal suffering and huge costs to society. Integrated knowledge on epidemiology, economic consequences and disease burden of TBI is scarce but essential for optimizing healthcare policy and preventing TBI. This study aimed to estimate incidence, cost-of-illness and disability-adjusted life years (DALYs) of TBI in the Netherlands.
This study included data on all TBI patients who were treated at an Emergency Department (ED - National Injury Surveillance System), hospitalized (National Medical Registration), or died due to their injuries in the Netherlands between 2010-2012. Direct healthcare costs and indirect costs were determined using the incidence-based Dutch Burden of Injury Model. Disease burden was assessed by calculating years of life lost (YLL) owing to premature death, years lived with disability (YLD) and DALYs. Incidence, costs and disease burden were stratified by age and gender.
TBI incidence was 213.6 per 100,000 person years. Total costs were €314.6 (USD $433.8) million per year and disease burden resulted in 171,200 DALYs (on average 7.1 DALYs per case). Men had highest mean costs per case (€19,540 versus €14,940), driven by indirect costs. 0-24-year-olds had high incidence and disease burden but low economic costs, whereas 25-64-year-olds had relatively low incidence but high economic costs. Patients aged 65+ had highest incidence, leading to considerable direct healthcare costs. 0-24-year-olds, men aged 25-64 years, traffic injury victims (especially bicyclists) and home and leisure injury victims (especially 0-5-year-old and elderly fallers) are identified as risk groups in TBI.
The economic and health consequences of TBI are substantial. The integrated approach of assessing incidence, costs and disease burden enables detection of important risk groups in TBI, development of prevention programs that target these risk groups and assessment of the benefits of these programs.
Journal Article
Health inequities as measured by the EQ-5D-5L during COVID-19: Results from New York in healthy and diseased persons
by
Lubetkin, Erica I.
,
Haagsma, Juanita A.
,
Janssen, Mathieu F.
in
Chronic conditions
,
Chronic Disease
,
Chronic illnesses
2022
The effects of the COVID-19 pandemic caused considerable psychological and physical effects in healthy and diseased New Yorkers aside from the effects in those who were infected. We investigated the relationship between known risk-enhancing and health-promoting factors (social and medical), comorbidity indicators, and, as the primary outcome, health-related quality of life (HRQoL).
Between April 22 and May 5, 2020, a market research agency (Dynata) administered a digital survey including the EQ-5D-5L and items related to individual characteristics, social position, occupational and insurance status, living situation, exposures (smoking and COVID-19), detailed chronic conditions, and experienced access to care to an existing internet panel representative of New Yorkers.
2684 persons completed the questionnaire. The median age was 48 years old, and most respondents were non-Hispanic white (74%) and reported at least higher vocational training or a university education (83%). During COVID-19, mean HRQoL scores were 0.82 for the EQ-5D-5L index and 79.3 for the EQ VAS. Scores varied for healthy and diseased respondents differently by the above determinants. Lower age, impaired occupational status, loss of health insurance, and limited access to care exerted more influence on EQ-5D-5L scores of diseased persons compared to healthy persons. Among diseased persons, the number of chronic conditions and limited access to health care had the strongest association with EQ-5D-5L scores. While EQ-5D-5L scores improved with increasing age, gender had no noticeable effect. Deprivation factors showed moderate effects, which largely disappeared in (stratified) multivariable analysis, suggesting mediation through excess chronic morbidity and poor healthcare access. Generally, modifying effects were larger in the EQ-5D-5L as compared to the EQ VAS.
Almost all factors relating to a disadvantaged position showed a negative association with HRQoL. In diseased respondents, pre-existing chronic comorbidity and experienced access to health care are key factors.
Journal Article
Long-term medical and productivity costs of severe trauma: Results from a prospective cohort study
by
de Jongh, Mariska A. C.
,
Haagsma, Juanita A.
,
Havermans, Roos J. M.
in
Care and treatment
,
Evaluation
,
Medical care, Cost of
2021
Through improvements in trauma care there has been a decline in injury mortality, as more people survive severe trauma. Patients who survive severe trauma are at risk of long-term disabilities which may place a high economic burden on society. The purpose of this study was to estimate the health care and productivity costs of severe trauma patients up to 24 months after sustaining the injury. Furthermore, we investigated the impact of injury severity level on health care utilization and costs and determined predictors for health care and productivity costs. This prospective cohort study included adult trauma patients with severe injury (ISS[greater than or equal to]16). Data on in-hospital health care use, 24-month post-hospital health care use and productivity loss were obtained from hospital registry data and collected with the iMTA Medical Consumption and Productivity Cost Questionnaire. The questionnaires were completed 1 week and 1, 3, 6, 12 and 24 months after injury. Log-linked gamma generalized linear models were used to investigate the drivers of health care and productivity costs. In total, 174 severe injury patients were included in this study. The median age of participants was 55 years and the majority were male (66.1%). The mean hospital stay was 14.2 (SD = 13.5) days. Patients with paid employment returned to work 21 weeks after injury. In total, the mean costs per patient were [euro]24,760 with in-hospital costs of [euro]11,930, post-hospital costs of [euro]7,770 and productivity costs of [euro]8,800. Having an ISS [greater than or equal to]25 and lower health status were predictors of high health care costs and male sex was associated with higher productivity costs. Both health care and productivity costs increased with injury severity, although large differences were observed between patients. It is important for decision-makers to consider not only in-hospital health care utilization but also the long-term consequences and associated costs related to rehabilitation and productivity loss.
Journal Article
Adjusting for comorbidity in incidence-based DALY calculations: an individual-based modeling approach
by
McDonald, Scott A.
,
Devleesschauwer, Brecht
,
Haagsma, Juanita A.
in
Analysis
,
Arthritis
,
Chronic obstructive pulmonary disease
2020
Background
The co-occurrence of two or more medical conditions in the same individual is not uncommon. If disability-adjusted life year (DALY) calculations are carried out for each condition separately, multimorbidity may lead to an overestimation of the morbidity component, the Years Lived with Disability (YLD). Adjusting for comorbidity may be straightforward if all symptoms have same onset and duration; however, when the comorbid health states occur at different time points, an analytical solution to the comorbidity problem becomes more complex. The aim of this study was to develop an individual-based modelling (IBM) approach to adjust incidence-based disease burden estimation for multimorbidity that allows simulating hypothetical individuals and tracking their disease history, including possible comorbidities, over time.
Methods
We demonstrated the IBM approach using an example of external comorbidity, i.e., colon cancer comorbid with healthcare-associated pneumonia (HAP) and by assuming an independent multiplicative model. First, each cumulative progression probabilities were converted to a daily transition probabilities. Second, disability weights for simultaneously experienced health states and duration in each health state were determined. Third, YLD, adjusted for comorbidity, was calculated at every time step. We simulated a cohort of 1000 colorectal cancer patients aged 65 years. Ninety-five percent uncertainty intervals around median YLD values were estimated by Monte Carlo methods.
Results
The median estimated YLD per 1000 cases (due to both cancer and HAP) adjusted for co-morbidity was 545 YLD/1000 (95% interval: 513–585). The impact of not adjusting disability weights for co-existent health states varied from minimal to small; YLD for colorectal cancer would be overestimated only slightly – by 1.6 YLD/1000 – by not adjusting for concurrent HAP. YLD for those HAP patients who have concurrent early-stage colorectal cancer would be overestimated by 2.3 YLD/1000.
Conclusions
The computation of disease burden in the presence of multimorbidity using the incidence-based DALY approach can be handled through IBM. Our approach can be extended to other, more complicated multimorbidity scenarios which are responsible for a high current global disease burden, such as tuberculosis and HIV infection.
Journal Article