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Disability Weights for Diseases in The Netherlands
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... Four health states and their respective labels were identified, each assumed to be internally homogeneous in terms of disease severity, disability, treatment and prognosis. In line with several studies on DWs elicitation (23)(24)(25), also a description of the health states through EQ-5D-3L descriptive system was provided on five different dimensions: mobility, self-care, usual activities, pain/discomfort, anxiety/depression (26). Each dimension presents three levels of severity: no problems, moderate problems and severe problems. ...
... An online questionnaire was designed through Qualtrics XM and administered to clinicians, whose preferences on the health states were elicited using two valuation methods, the Person-Trade-Off (PTO) and the Visual Analogue Scale (VAS). With the PTO method, experts were asked to trade-off a number of individuals with perfect health and a number of individuals in the health state to be assessed (Supplementary File S2) (23,28). Due to the complexity of PTO exercise, respondents were given the possibility to check their answers and revise them if necessary. ...
... Therefore, the estimates derived from PTO should reflect the perspective of a policy-maker, and PTO may represent the preferred method for estimating DWs for burden of disease studies. With the VAS method, instead, experts were asked to give a direct ranking of the health states in two steps: (1) by ordering the health states from the best (I) to the worst (IV); (2) by assigning a score to each health state through a graduated scale, which assumes values from 0 (worst score = death or worst possible health status) to 100 (best score = perfect health) (Supplementary File S2) (23). The VAS exercise is cognitively simpler than the PTO (29) as it does not entail a trade-off feature, and it was used to double-check the reliability of DWs obtained through the PTO method (23). ...
Introduction: Health state valuation and diagnostic-therapeutic pathways at the junction between non-metastatic and metastatic castration-resistant prostate cancer (CRPC) are not well documented. We aimed at: (i) estimating the disability weights (DWs) for health states across a continuum of disease from asymptomatic non-metastatic (nmCRPC) to symptomatic metastatic state (mCRPC); (ii) mapping the diagnostic-therapeutic pathway of nmCRPC in Italy.
Methods: Structured qualitative interviews were performed with clinical experts to gather information on nmCRPC clinical pathway. An online survey was administered to clinical experts to estimate DWs for four CRPC health states defined from interviews and literature review (i.e., nmCRPC, asymptomatic mCRPC, symptomatic mCRPC, mCRPC in progression during or after chemotherapy). Clinicians’ preferences for health states were elicited using the Person-Trade-Off (PTO) and Visual Analogue Scale (VAS) methods. DWs associated with each health state, from 0 (best imaginable health state) and 1 (worst imaginable health state), were estimated.
Results: We found that the management of nmCRPC is heterogeneous across Italian regions and hospitals, especially with respect to diagnostic imaging techniques. DWs for PTO ranged from 0.415 (95% confidence interval [CI] 0.208-0.623) in nmCRPC to 0.740 (95% CI 0.560-0.920) in mCRPC, in progression during or after chemotherapy. DWs for VAS ranged between 0.246 (95% CI 0.131-0.361) in nmCRPC to 0.689 (95% CI 0.583-0.795) in mCRPC, in progression during or after chemotherapy.
Conclusions: Estimated DWs suggest that delaying transition to a metastatic state might ease the disease burden at both patient and societal levels.
... Due to the controversy generated by weight changes from 1990 to 2010, the WHO's GHE reestimated the 2010 GBD DW. The regression was constructed considering the description of health states according to EuroQol 5D, as proposed by Stouthard et al. 27 . These values maintain the original conception of measuring health loss and related decreases in functioning in different health domains 26 . ...
... Likewise, the distribution by sex of the number of cases ( Fig. 1) shows that visual impairment is slightly more frequent in women (56%) than in men. In addition, the highest disease burden occurs in the 60-64 age group (27,477 YLDs) followed by the 55-59 age group. The rate of YLDs per 100,000 population for vision loss was 703.5/100,000 (UI: 670.7-755.1) in the Colombian context. ...
... The shift from the Dutch disability weights [50] to the European disability weights [25] for infectious YLD calculations, especially in disease burden studies published after 2015, is another noteworthy finding of this review. This shift can primarily be explained by the fact that the Dutch disability weights [50] were derived in the 1990s and since then, the methods for deriving disability weights have evolved [22]. ...
... The shift from the Dutch disability weights [50] to the European disability weights [25] for infectious YLD calculations, especially in disease burden studies published after 2015, is another noteworthy finding of this review. This shift can primarily be explained by the fact that the Dutch disability weights [50] were derived in the 1990s and since then, the methods for deriving disability weights have evolved [22]. Differences in methodologies to derive disability weights have an impact on the actual value of disability weights, thereby inhibiting comparability with other burden of disease studies, as well as the validity and reproducibility of disability weights. ...
This systematic literature review aimed to provide an overview of the characteristics and methods used in studies applying the disability-adjusted life years (DALY) concept for infectious diseases within European Union (EU)/European Economic Area (EEA)/European Free Trade Association (EFTA) countries and the United Kingdom. Electronic databases and grey literature were searched for articles reporting the assessment of DALY and its components. We considered studies in which researchers performed DALY calculations using primary epidemiological data input sources. We screened 3053 studies of which 2948 were excluded and 105 studies met our inclusion criteria. Of these studies, 22 were multi-country and 83 were single-country studies, of which 46 were from the Netherlands. Food- and water-borne diseases were the most frequently studied infectious diseases. Between 2015 and 2022, the number of burdens of infectious disease studies was 1.6 times higher compared to that published between 2000 and 2014. Almost all studies (97%) estimated DALYs based on the incidence- and pathogen-based approach and without social weighting functions; however, there was less methodological consensus with regards to the disability weights and life tables that were applied. The number of burdens of infectious disease studies undertaken across Europe has increased over time. Development and use of guidelines will promote performing burden of infectious disease studies and facilitate comparability of the results.
... The shift from the Dutch disability weights [50] to the European disability weights [25] for infectious YLD calculations, especially in disease burden studies published after 2015, is another noteworthy finding of this review. This shift can primarily be explained by the fact that the Dutch disability weights [50] were derived in the 1990s and since then, the methods for deriving disability weights have evolved [22]. ...
... The shift from the Dutch disability weights [50] to the European disability weights [25] for infectious YLD calculations, especially in disease burden studies published after 2015, is another noteworthy finding of this review. This shift can primarily be explained by the fact that the Dutch disability weights [50] were derived in the 1990s and since then, the methods for deriving disability weights have evolved [22]. Differences in methodologies to derive disability weights have an impact on the actual value of disability weights, thereby inhibiting comparability with other burden of disease studies, as well as the validity and reproducibility of disability weights. ...
This systematic literature review aimed to provide an overview of the characteristics and methods used in studies applying the disability-adjusted life years (DALY) concept for infectious diseases within European Union (EU)/European Economic Area (EEA)/European Free Trade Association (EFTA) countries and the United Kingdom. Electronic databases and grey literature were searched for articles reporting the assessment of DALY and its components. We considered studies in which researchers performed DALY calculations using primary epidemiological data input sources. We screened 3053 studies of which 2948 were excluded and 105 studies met our inclusion criteria. Of these studies, 22 were multi-country and 83 were single-country studies, of which 46 were from the Netherlands. Food- and water-borne diseases were the most frequently studied infectious diseases. Between 2015 and 2022, the number of burden of infectious disease studies was 1.6 times higher compared to that published between 2000 and 2014. Almost all studies (97%) estimated DALYs based on the incidence- and pathogen-based approach and without social weighting functions; however, there was less methodological consensus with regards to the disability weights and life tables that were applied. The number of burden of infectious disease studies undertaken across Europe has increased over time. Development and use of guidelines will promote performing burden of infectious disease studies and facilitate comparability of the results.
... In the GBD study and the Netherlands study 20 , the prevalence and disability weights of the comorbid disease were calculated under the assumption that each disease was carried independently, and the YLD rate was simulated to compensate for multimorbidity. In this study, as in the GBD study, the YLD rate adjusted for multimorbidity was calculated under the assumption of independent diseases. ...
Objectives:
To efficiently utilize limited health and medical resources, it is necessary to accurately measure the level of health, and to do this the burden of disease must be measured by correcting the multimorbidity.
Methods:
This study used 2015 and 2016 data from the National Health Insurance Service, and employed the list of diseases defined in a Korean study of the burden of disease, the criteria for prevalence, and the disease system. When calculating the years lost to disability(YLD), the multiple disease relapse condition was corrected using Monte-Carlo simulation.
Results:
The change in YLD after correction for multimorbidity at all ages in Korea decreased by -11.2%(-24.1-3.6) in men and -12.4%(-23.0-0.3) in women in 2015, and by -10.8%(-24.1-4.6) in men and -11.1%(-22.8-1.7) in women in 2016. When examined by disease group, the YLD rate for non-communicable diseases in men decreased most in both years, by -11.8%(-19.5-3.6) and -11.5%(-19.3- -3.0), respectively. By age group, the overall YLD rate decreased by -1.3% in the 5-9 year age group, and the level remained similar until the 10-19 year age group, showing a tendency for a gradual decrease after 20 years of age, and a steep increase of more than 10% in those aged 60 and older.
Conclusion:
Calculations of YLD should include an adjustment for multimorbidity, as the disease burden can otherwise be overestimated for the elderly, who tend to exhibit a high prevalence of multimorbidity.
... Several studies have attempted in understanding the 'value' of a certain health state or disease using various health state valuation methods. [5][6][7] An important metric-Disability-adjusted life years-a product of the GBD studies, is a measurement of the disabling power of a disease or health condition required for calculating the burden of diseases using the 'value' or 'disability weight for a health state'. [8] However, previous GBD studies have garnered criticism for the manner of estimation of disability weights, especially for its "one size fits all" approach and selection of health states, where unaffected individuals and community perception of health conditions were unaccounted for. ...
Background: Health state valuation attempts to evaluate health states based on the perception of individuals. The values are used to derive disability weights (DWs) —an important metric for estimation of disability‑adjusted life years and thereby calculation of the burden of diseases. Several studies have calculated DWs using different methods of valuation, however, very few have attempted to explore the underlying cause for assigning values to different health states. This study aims to document the perceptions, preferences, and social context in assigning DWs to given health states.
Methods: A total of 42 community members and 21 service providers (from public and private sectors) across urban and rural Odisha and Telangana were interviewed between July to September 2018. A face‑to‑face in‑depth interview and a rank ordering technique through card sort exercise was employed to explore reasons and perceptions of individuals in the context of health states using the thematic framework approach.
Findings: Six themes emerged through analysis: awareness of the health state, nature of the disease, disease consequences, treatment‑related issues, social implications, and case burden. Each theme captured an individual’s reason for valuing one health state as different from the other, with differences and/or similarities between community members and service providers.
Conclusion: Our study provides a comprehensive comparison between contrasting groups of individuals, thereby suggesting mere acceptance of ‘experts’ reasoning may not always suffice. Further research studies in the future need to be conducted for a better insight into the health perspective of a culturally diverse community. It can also help estimate the burden of disease for decision making and resource allocation in developing countries.
Keywords: Card sort, disability weights, health state valuation, Odisha, service providers, Telangana
Background
Hodgkin lymphoma (HL) occurs at young ages, with the highest incidence between 20 and 40 years. While cure rates have improved to 80%-90% over the past decades, survivors of HL are at substantial risk of late treatment–related complications, such as cardiovascular diseases, breast cancer, severe infections, and hypothyroidism. To reduce morbidity and mortality from late treatment effects, the Dutch Better care after lymphoma, Evaluation of long-term Treatment Effects and screening Recommendations (BETER) consortium developed a survivorship care program for 5-year survivors of HL that includes risk-based screening for and treatment of (risk factors for) late adverse events. Even though several cancer survivorship care programs have been established worldwide, there is a lack of knowledge about their effectiveness in clinical practice.
Objective
The Improving Nationwide Survivorship care Infrastructure and Guidelines after Hodgkin lymphoma Treatment (INSIGHT) study evaluates whether Dutch BETER survivorship care for survivors of HL decreases survivors’ burden of disease from late adverse events after HL treatment and associated health care costs and improves their quality of life.
Methods
The INSIGHT study is a multicenter retrospective cohort study with a quasi-experimental design and prospective follow-up, embedded in the national BETER survivorship care infrastructure. The first BETER clinics started in 2013-2016 and several other centers started or will start BETER clinics in 2019-2024. This allows us to compare survivors who did and those who did not receive BETER survivorship care in the last decade. Survivors in the intervention group are matched to controls (n=450 per group) based on sex, age at diagnosis (±5 years), age in 2013 (±5 years), and treatment characteristics. The primary outcome is the burden of disease in disability-adjusted life years from cardiovascular disease, breast cancer, severe infections, and hypothyroidism. In a cost-effectiveness analysis, we will assess the cost of BETER survivorship care per averted or gained disability-adjusted life year and quality-adjusted life year. Secondary outcomes are BETER clinic attendance, adherence to screening guidelines, and knowledge and distress about late effects among survivors of HL. Study data are collected from a survivor survey, a general practitioner survey, medical records, and through linkages with national disease registries.
Results
The study was funded in November 2020 and approved by the institutional review board of the Netherlands Cancer Institute in July 2021. We expect to finalize recruitment by October 2024, data collection by early 2025, and data analysis by May 2025.
Conclusions
INSIGHT is the first evaluation of a comprehensive survivorship program using real-world data; it will result in new information on the (cost-)effectiveness of survivorship care in survivors of HL in clinical practice. The results of this study will be used to improve the BETER program where necessary and contribute to more effective evidence-based long-term survivorship care for lymphoma survivors.
International Registered Report Identifier (IRRID)
PRR1-10.2196/55601
In 2023, the world will be at “halftime” with respect to the sustainable development goals (SDGs). This midline acts as an important milestone to review the progress of the SDGs and develop policies based on the most effective interventions. To estimate the remaining resources needed to achieve SDG targets for vaccines from 2023 to 2030 as well the resulting economic benefits, in this analysis, the incremental economic benefit-cost ratio (BCR) for immunization programs in 80 low- and middle-income countries targeted by the Global Vaccine Action Plan from 2023 to 2030 is calculated. Of these 80 countries, 27 are classified as low-income countries and 53 are classified as lower-middle-income countries (LMICs). The economic evaluation covers 9 vaccines employed against 10 antigens and delivered through both routine immunization programs and supplemental immunization activities. The vaccines covered in the analysis include pentavalent vaccine, human papillomavirus vaccine, Japanese encephalitis vaccine, measles vaccine, measles-rubella vaccine, meningococcal conjugate A vaccine, pneumococcal conjugate vaccine, rotavirus vaccine, and yellow fever vaccine, and correspond to the vaccines covered in the return-on-investment estimates presented in Sim et al. , which covered 94 LMICs from 2011 to 2030. For these countries, we estimate program costs from the health system perspective, including vaccine costs such as costs to procure vaccines, which incorporate injection supplies and freight; and immunization delivery costs, which include nonvaccine commodity costs to deliver immunizations to target populations and incorporate labor, cold chain and storage, transportation, facilities, training, surveillance, and wastage. Economic benefits are calculated using a value of statistical life year (VSLY) approach applied to modeled cases, and deaths averted are converted into averted years of life lost using life expectancy data. BCRs are presented as the final output that compares incremental costs and benefits from the baseline of 2022 levels, assuming diminishing returns to scale. Overall, for this period, we estimate total costs of US$ 7,581,837,329.08 with VSLY benefits of US$ 762,172,371,553.54, resulting in a BCR of 100.53.
A combined Haemophilus influenzae type b (Hib)/meningococcal serogroup C (MenC) vaccine will soon be unavailable in the UK immunisation schedule due to discontinuation by the manufacturer. An interim statement by the Joint Committee on Vaccination and Immunisation (JCVI) advises stopping MenC immunisation at 12 months of age when this occurs. We undertook an analysis of the public health impact of various potential meningococcal vaccination strategies in the UK in the absence of the Hib/MenC vaccine. A static population-cohort model was developed evaluating the burden of IMD (using 2005–2015 epidemiological data) and related health outcomes (e.g., cases, cases with long-term sequelae, deaths), which allows for the comparison of any two meningococcal immunisation strategies. We compared potential strategies that included different combinations of infant and/or toddler MenACWY immunisations with the anticipated future situation in which a 12-month MenC vaccine is not used, but the MenACWY vaccine is routinely given in adolescents. The most effective strategy is combining MenACWY immunisation at 2, 4, and 12 months of age with the incumbent adolescent MenACWY immunisation programme, resulting in the prevention of an additional 269 IMD cases and 13 fatalities over the modelling period; of these cases, 87 would be associated with long-term sequelae. Among the different vaccination strategies, it was observed that those with multiple doses and earlier doses provided the greatest protection. Our study provides evidence suggesting that the removal of the MenC toddler immunisation from the UK schedule would potentially increase the risk of unnecessary IMD cases and have a detrimental public health impact if not replaced by an alternate infant and/or toddler programme. This analysis supports that infant and toddler MenACWY immunisation can provide maximal protection while complementing both infant/toddler MenB and adolescent MenACWY immunisation programmes in the UK.
This thesis addresses a number of related topics in health status measurement in the
evaluation of the effects of disease and of medical care. Its main objectives are:
I. To provide a general overview of the field of descriptive health status measurement.
2. To compare the contents and the relative performance of a number of currently
available measures for descriptive health status measurement, to demonstrate
applications of descriptive health status measurement and to discuss the importance
of standardization of research methods in health status measurement.
3. To provide an overview of the current state of affairs in evaluative health status
measurement, and to demonstrate empirical studies addressing the feasibility of
collecting valuation data by self-assessment questionnaire.
To test whether cost-effectiveness analysis and present methods of eliciting health condition "utilities" capture the public's values for health care rationing.
Two surveys of economics students. The first survey measured their utilities for three states of health, using either analog scale, standard gamble, or time tradeoff. The second survey measured their preferences, in paired rationing choices of the health states from the first survey and also compared with treatment of acutely fatal appendicitis. The rationing choices each subject faced were individualized according to his or her utility responses, so that the subject should have been indifferent between the two conditions in each rationing choice.
The analog-scale elicitation method produced significantly lower utilities than the time-tradeoff and standard-gamble methods for two of the three conditions (p < 0.001). Compared with the rationing choices, all three utility-elicitation methods placed less value on the importance of saving lives and treating more severely ill people compared with less severely ill ones (p < 0.0001). The subjects' rationing choices indicated that they placed values on treating severely ill people that were tenfold to one-hundred-thousand-fold greater than would have been predicted by their utility responses. However, the subjects' rationing choices showed internal inconsistency, as, for example, treatments that were indicated to be ten times more beneficial in one scenario were valued as one hundred times more beneficial in other scenarios.
The subjects soundly rejected the rationing choices derived from their utility responses. This suggests that people's answers to utility elicitations cannot be easily translated into social policy. However, person-tradeoff elicitations, like those given in our rationing survey, cannot be substituted for established methods of utility elicitation until they can be performed in ways that yield acceptable internal consistency.
In the course of developing a standardised, non-disease-specific instrument for describing and valuing health states (based on the items in Table 1), the EuroQol Group (whose members are listed In the Appendix) conducted postal surveys in England, The Netherlands and Sweden which indicate a striking similarity in the relative valuations attached to 14 different health states (see Table 3). The data were collected using a visual analogue scale similar to a thermometer (see Table 2). The EuroQol Instrument Is Intended to complement other quality-of-life measures and to facilitate the collection of a common data set for reference purposes. Others interested in participating in the extension of this work are invited to contact the EuroQol Group.
Older people often suffer from comorbidity, or several chronic conditions simultaneously. Disability rises rapidly as the number of chronic conditions grows, although very ill people who acquire another condition experience attenuated increases. High prevalence conditions such as arthritis tend to have a low or occasionally moderate impact for community residents, while low prevalence ones such as osteoporosis have a high impact; paired conditions sometimes give extra propulsion to disability, as when cerebrovascular disease and hip fracture co-occur. Further research is needed to pin-point combinations of conditions posing great risks and to identify demographic segments in which comorbidity has elevated effects.
Values play a critical part in decision making at both the individual and policy levels. Numerous methodologies for determining the preferences of individuals and groups have been proposed, but agreement has not been reached regarding their scientific adequacy and feasibility. This is the first of a four-part series of papers that analyzes and critiques the state-of-the-art in measuring preferences, particularly the measurement of health-state preferences. In this first paper we discuss the selection of relevant attributes to comprise the health-state descriptions, and the relative merits of three measurement strategies: holistic, explicitly decomposed, and statistically inferred decomposed. The functional measurement approach, a statistically inferred decomposed strategy, is recommended because it simultaneously validates the process by which judges combine attributes, the scale values they assign to health states, and the interval property of the scale.
This paper begins with a discussion of measurement principles relevant to determining health-state preferences. Six scaling methods are described and evaluated on the basis of their reliability, validity, and feasibility. They are the standard gamble, time trade-off, rating scale, magnitude estimation, equivalence, and willingness-to-pay methods. Reliability coefficients for most methods are acceptable although the low coefficients for measurements taken a year apart suggest that preferences change over time. Convergent validity among methods has been supported in some but not all studies, and there are limited data supporting hypothetical relationships between preferences and other variables. The category ratings method is easiest to administer and appears to yield valid scale values; thus, it is recommended for large-sample studies. However, decision-oriented methods, particularly the time trade-off and standard gamble, may be more effective in small-scale investigations and individual decision making.
Three psychological scaling procedures - category rating, magnitude estimation, and equivalence - were used to measure the levels of well being that student and health leader judges in 14 experimental groups associate with 50 case descriptions of function status representing the continuum from complete well being to death. No significant differences were detected for order of method presentation, interview situation, scaling method, student vs. leader judges, or most interactions among these factors. Category rating, the simplest and apparently the most reliable of the methods, was consistent with the results of the social choices implied in the equivalence technique. The results indicate the feasibility of measuring the social values of large numbers of cases in household interview surveys.
The person-trade-off technique is a way of estimating the social values of different health care interventions. Basically it consists in asking people how many outcomes of one kind they consider equivalent in social value to X outcomes of another kind. The paper outlines a number of the author's previous studies using the technique. The studies suggest that while the technique is theoretically appealing for resource-allocation purposes, it is in practice quite demanding. It needs to be applied in fairly large groups of subjects to keep random measurement error at an acceptable level. Possible framing effects include the effects of argument presentation and the choice of start points in numerical exercises. To control for these effects, it seems important to take subjects through a multistep procedure, in which they are induced to carefully consider the various arguments that might be relevant in each exercise and to reconsider initial responses in the light of their implications. The investigator must also think through which decision context he or she wishes to study and make his or her choice of context very clear when reporting the results. In spite of these problems, the person-trade-off technique deserves greater attention in the field of cost-utility analysis.
The paper presents two methods for eliciting individuals' implicit weights to be attached to health benefits which extend over time. The first is a person-trade-off type which implies that social weights are attached to years with improved health when these are distributed between different groups of people. The second method is based on time-trade-off which yields private weights to succeeding years with improved health for oneself. Emphasis is placed on methodological issues, but some preliminary results obtained from small samples are also presented.