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1.
Cancers (Basel) ; 16(11)2024 May 21.
Article in English | MEDLINE | ID: mdl-38893073

ABSTRACT

The EuroQoL 5-Dimension 5-Level questionnaire (EQ-5D-5L) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30) are commonly used Patient-Reported Outcome Measures (PROMs) for breast cancer. This study assesses and compares the internal responsiveness of the EQ-5D-5L and EORTC QLQ-C30 in Dutch breast cancer patients during the first year post-surgery. Women diagnosed with breast cancer who completed the EQ-5D-5L and EORTC QLQ-C30 pre-operatively (T0), 6 months (T6), and 12 months post-surgery (T12) were included. Mean differences of the EQ-5D-5L and EORTC QLQ-C30 between baseline and 6 months (delta 1) and between baseline and 12 months post-surgery (delta 2) were calculated and compared against the respective minimal clinically important differences (MCIDs) of 0.08 and 5. Internal responsiveness was assessed using effect sizes (ES) and standardized response means (SRM) for both deltas. In total, 333 breast cancer patients were included. Delta 1 and delta 2 for the EQ-5D-5L index and most scales of the EORTC QLQ-C30 were below the MCID. The internal responsiveness for both PROMs was small (ES and SRM < 0.5), with greater internal responsiveness for delta 1 compared to delta 2. The EQ-5D-5L index showed greater internal responsiveness than the EORTC QLQ-C30 Global Quality of Life scale and summary score. These findings are valuable for the interpretation of both PROMs in Dutch breast cancer research and clinical care.

2.
Crit Rev Oncol Hematol ; 195: 104267, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38311011

ABSTRACT

Generating guideline-based recommendations during multidisciplinary team (MDT) meetings in solid cancers is getting more complex due to increasing amount of information needed to follow the guidelines. Usage of clinical decision support systems (CDSSs) can simplify and optimize decision-making. However, CDSS implementation is lagging behind. Therefore, we aim to compose a CDSS implementation model. By performing a scoping review of the currently reported CDSSs for MDT decision-making we determined 102 barriers and 86 facilitators for CDSS implementation out of 44 papers describing 20 different CDSSs. The most frequently reported barriers and facilitators for CDSS implementation supporting MDT decision-making concerned CDSS maintenance (e.g. incorporating guideline updates), validity of recommendations and interoperability with electronic health records. Based on the identified barriers and facilitators, we composed a CDSS implementation model describing clinical utility, analytic validity and clinical validity to guide CDSS integration more successfully in the clinical workflow to support MDTs in the future.


Subject(s)
Decision Support Systems, Clinical , Neoplasms , Humans , Neoplasms/therapy , Patient Care Team
3.
Neth Heart J ; 32(1): 63-66, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38085507

ABSTRACT

Dutch and European guidelines recommend systematic screening for cognitive and emotional impairments in cardiac arrest survivors. We aimed to clarify opinions on cognitive screening and rehabilitation, identify barriers and facilitators for implementation in the Netherlands, and arrive at recommendations in this field. We conducted 22 semi-structured interviews with various stakeholders using the Tailored Implementation in Chronic Diseases checklist. There is broad-based acknowledgement of the relevance of cognitive impairment and a positive attitude regarding early cognitive screening among health professionals and patients. Barriers to implementation include a lack of practical recommendations on how, where and when to screen, insufficient knowledge of cognitive consequences of cardiac arrest, insufficient collaboration and knowledge sharing among different specialties within hospitals, insufficient resources, and insufficient evidence of the effectiveness of screening and therapy to justify financial compensation. Most of the identified barriers to implementation are solvable: national guidelines need practical recommendations and knowledge gaps among healthcare workers can be bridged by in-hospital collaboration. Fulfilling these requirements should be sufficient for the implementation of simple screening and tailored advice. More extensive cognitive rehabilitation therapy needs stronger evidence of efficacy in order to warrant stronger guideline recommendations and financial reimbursement.

4.
Patient ; 17(1): 3-12, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37874464

ABSTRACT

Health preference research (HPR) is being increasingly conducted to better understand patient preferences for medical decisions. However, patients vary in their desire to play an active role in medical decisions. Until now, few studies have considered patients' preferred roles in decision making. In this opinion paper, we advocate for HPR researchers to assess and account for role preferences in their studies, to increase the relevance of their work for medical and shared decision making. We provide recommendations on how role preferences can be elicited and integrated with health preferences: (1) in formative research prior to a health preference study that aims to inform medical decisions or decision makers, (2a) in the development of health preference instruments, for instance by incorporating a role preference instrument and (2b) by clarifying the respondent's role in the decision prior to the preference elicitation task or by including role preferences as an attribute in the task itself, and (3) in statistical analysis by including random parameters or latent classes to raise awareness of heterogeneity in role preferences and how it relates to health preferences. Finally, we suggest redefining the decision process as a model that integrates the role and health preferences of the different parties that are involved. We believe that the field of HPR would benefit from learning more about the extent to which role preferences relate to health preferences, within the context of medical and shared decision making.


Subject(s)
Clinical Decision-Making , Patient Preference , Humans , Decision Making, Shared , Research Design , Patients , Decision Making , Patient Participation
5.
Eur Radiol ; 2023 Dec 07.
Article in English | MEDLINE | ID: mdl-38060003

ABSTRACT

OBJECTIVES: Lung cancer screening (LCS), using low-dose computed tomography (LDCT), can be more efficient by simultaneously screening for chronic obstructive pulmonary disease (COPD) and cardiovascular disease (CVD), the Big-3 diseases. This study aimed to determine the willingness to participate in (combinations of) Big-3 screening in four European countries and the relative importance of amendable participation barriers. METHODS: An online cross-sectional survey aimed at (former) smokers aged 50-75 years elicited the willingness of individuals to participate in Big-3 screening and used analytical hierarchy processing (AHP) to determine the importance of participation barriers. RESULTS: Respondents were from France (n = 391), Germany (n = 338), Italy (n = 399), and the Netherlands (n = 342), and consisted of 51.2% men. The willingness to participate in screening was marginally influenced by the diseases screened for (maximum difference of 3.1%, for Big-3 screening (73.4%) vs. lung cancer and COPD screening (70.3%)) and by country (maximum difference of 3.7%, between France (68.5%) and the Netherlands (72.3%)). The largest effect on willingness to participate was personal perceived risk of lung cancer. The most important barriers were the missed cases during screening (weight 0.19) and frequency of screening (weight 0.14), while diseases screened for (weight 0.11) ranked low. CONCLUSIONS: The difference in willingness to participate in LCS showed marginal increase with inclusion of more diseases and limited variation between countries. A marginal increase in participation might result in a marginal additional benefit of Big-3 screening. The amendable participation barriers are similar to previous studies, and the new criterion, diseases screened for, is relatively unimportant. CLINICAL RELEVANCE STATEMENT: Adding diseases to combination screening modestly improves participation, driven by personal perceived risk. These findings guide program design and campaigns for lung cancer and Big-3 screening. Benefits of Big-3 screening lie in long-term health and economic impact, not participation increase. KEY POINTS: • It is unknown whether or how combination screening might affect participation. • The addition of chronic obstructive pulmonary disease and cardiovascular disease to lung cancer screening resulted in a marginal increase in willingness to participate. • The primary determinant influencing individuals' engagement in such programs is their personal perceived risk of the disease.

6.
Pediatr Rheumatol Online J ; 21(1): 69, 2023 Jul 11.
Article in English | MEDLINE | ID: mdl-37434157

ABSTRACT

OBJECTIVE: Approximately one third of children with JIA receive biologic therapy, but evidence on biologic therapy withdrawal is lacking. This study aims to increase our understanding of whether and when pediatric rheumatologists postpone a decision to withdraw biologic therapy in children with clinically inactive non-systemic JIA. METHODS: A survey containing questions about background characteristics, treatment patterns, minimum treatment time with biologic therapy, and 16 different patient vignettes, was distributed among 83 pediatric rheumatologists in Canada and the Netherlands. For each vignette, respondents were asked whether they would withdraw biologic therapy at their minimum treatment time, and if not, how long they would continue biologic therapy. Statistical analysis included descriptive statistics, logistic and interval regression analysis. RESULTS: Thirty-three pediatric rheumatologists completed the survey (40% response rate). Pediatric rheumatologists are most likely to postpone the decision to withdraw biologic therapy when the child and/or parents express a preference for continuation (OR 6.3; p < 0.001), in case of a flare in the current treatment period (OR 3.9; p = 0.001), and in case of uveitis in the current treatment period (OR 3.9; p < 0.001). On average, biologic therapy withdrawal is initiated 6.7 months later when the child or parent prefer to continue treatment. CONCLUSION: Patient's and parents' preferences were the strongest driver of a decision to postpone biologic therapy withdrawal in children with clinically inactive non-systemic JIA and prolongs treatment duration. These findings highlight the potential benefit of a tool to support pediatric rheumatologists, patients and parents in decision making, and can help inform its design.


Subject(s)
Arthritis, Juvenile , Biological Products , Withholding Treatment , Child , Humans , Biological Products/therapeutic use , Canada , Duration of Therapy , Netherlands , Rheumatologists , Arthritis, Juvenile/therapy
7.
J Parkinsons Dis ; 12(5): 1655-1664, 2022.
Article in English | MEDLINE | ID: mdl-35527565

ABSTRACT

BACKGROUND: In Parkinson's disease (PD), several disease-modifying treatments are being tested in (pre-)clinical trials. To successfully implement such treatments, it is important to have insight into factors influencing the professionals' decision to start disease-modifying treatments in persons who are in the prodromal stage of PD. OBJECTIVE: We aim to identify factors that professionals deem important in deciding to a start disease-modifying treatment in the prodromal stage of PD. METHODS: We used a discrete choice experiment (DCE) to elicit preferences of neurologists and last-year neurology residents regarding treatment in the prodromal phase of PD. The DCE contained 16 hypothetical choice sets in which participants were asked to choose between two treatment options. The presented attributes included treatment effect, risk of severe side-effects, risk of mild side-effects, route of administration, and annual costs. RESULTS: We included 64 neurologists and 18 last year neurology residents. Participants attached most importance to treatment effect and to the risk of severe side-effects. Participants indicated that they would discuss one of the presented treatments in daily practice more often in persons with a high risk of being in the prodromal phase compared to those with a moderate risk. Other important factors for deciding to start treatment included the amount of evidence supporting the putative treatment effect, the preferences of the person in the prodromal phase, and the life expectancy. CONCLUSION: This study provides important insights in factors that influence decision making by professionals about starting treatment in the prodromal phase of PD.


Subject(s)
Drug-Related Side Effects and Adverse Reactions , Parkinson Disease , Humans , Neurologists , Parkinson Disease/therapy , Prodromal Symptoms
8.
Value Health ; 25(1): 125-132, 2022 01.
Article in English | MEDLINE | ID: mdl-35031091

ABSTRACT

OBJECTIVES: The ICEpop Capability Measure for Adults (ICECAP-A) assesses 5 capabilities (stability, attachment, autonomy, achievement, and enjoyment) that are important to one's quality of life and might be an important addition to generic health questionnaires currently used in economic evaluations. This study aimed to develop a Dutch tariff of the Dutch translation of the ICECAP-A. METHODS: The methods used are similar to those used in the development of the UK tariff. A profile case best-worst scaling task was presented to 1002 participants from the general Dutch population. A scale-adjusted latent class analysis was performed to test for preferences of ICECAP-A capabilities and scale heterogeneity. RESULTS: A 3-preference class 2-scale class model with worst choice as scale predictor was considered optimal and was used to calculate the resulting tariff. Results indicated that the capabilities stability, attachment, and enjoyment were considered more important aspects of quality of life than autonomy and achievement. Additionally, improving capabilities from low to moderate levels had a larger effect on quality of life than improving capabilities that were already at a higher level. CONCLUSIONS: The ICECAP-A tariffs found in this study could be used in economic evaluations of healthcare interventions in The Netherlands.


Subject(s)
Cost-Benefit Analysis/methods , Health Status , Surveys and Questionnaires/standards , Humans , Netherlands , Quality of Life
9.
Qual Life Res ; 31(3): 687-696, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34463861

ABSTRACT

PURPOSE: The ICEpop CAPability measure for Adults (ICECAP-A) assesses five capabilities that are important to one's well-being. The instrument might be an important addition to generic health questionnaires when evaluating quality of life extending beyond health. This study aimed to conduct a psychometric assessment of the Dutch translation of the ICECAP-A. METHODS: Construct validity of the instrument was assessed in two ways. First, by measuring correlations with the EQ-5D-5L questionnaire and a measure of self-efficacy and, second, by investigating the ability to distinguish between groups known to differ on the construct the ICECAP-A means to capture. Additionally, test-retest reliability was evaluated. RESULTS: In total, 1002 participants representative of the general Dutch population completed an online survey. For test-retest reliability, 252 participants completed the same questionnaire 2 weeks later. The ICECAP-A indicated moderate to strong correlations with the EQ-5D-5L and a strong correlation with self-efficacy. Furthermore, it was capable of differentiating known groups. Moreover, results indicated adequate test-retest reliability with an intraclass correlation coefficient of 0.79. CONCLUSION: In summary, results suggest adequate test-retest reliability and construct validity and indicate that the ICECAP-A might be of added value, especially when considering areas outside of the traditional health intervention model.


Subject(s)
Ethnicity , Quality of Life , Adult , Humans , Psychometrics/methods , Quality of Life/psychology , Reproducibility of Results , Surveys and Questionnaires
10.
Cardiovasc Revasc Med ; 34: 134-139, 2022 01.
Article in English | MEDLINE | ID: mdl-33485859

ABSTRACT

PURPOSE: International coronary revascularization guidelines recommend both, transradial vascular access for coronary angiography/intervention and use of the radial artery as a conduit for coronary artery bypass grafting (CABG). These recommendations may pose a clinical dilemma, as transradial access exposes these arteries to vascular trauma which makes them potentially unsuitable as future grafts. In this study, we investigated the awareness and views of cardiologists on these guideline recommendations. METHODS: We performed semi-structured interviews with 50 cardiologists from 19 centers, who regularly perform coronary angiographies or interventions, and outlined clinical scenarios to evaluate their preference of vascular access. In addition, we assessed whether preference was related to sub-specialization. RESULTS: The interviewed cardiologists had 16 ± 9.3 years of professional experience. There were 23 (46%) cardiologists from 7 centers without percutaneous coronary intervention facilities, and 27 (56%) cardiologists from 12 interventional centers. All 50 (100%) cardiologists indicated familiarity with the guidelines, yet 28 (56%) said not to be familiar with the aforementioned dilemma, and 9 (18%) stated there was no dilemma at all. Responses did not differ significantly between interventional (n = 28) and non-interventional (n = 22) cardiologists; however, if the right radial artery was unavailable (e.g., occluded), interventional cardiologists more often said to prefer access via the left radial artery (18/28 (64%) vs. 5/22 (23%), p = 0.001). CONCLUSION: More than half of the interviewed cardiologists indicated that they had not realized that left transradial access preceding CABG may preclude later use of this artery as a conduit. Notably, in case of unavailability of the right radial artery, interventional cardiologists preferred left transradial access more often than non-interventional cardiologists.


Subject(s)
Percutaneous Coronary Intervention , Radial Artery , Coronary Angiography , Coronary Artery Bypass/adverse effects , Humans , Percutaneous Coronary Intervention/adverse effects , Radial Artery/diagnostic imaging , Radial Artery/surgery , Treatment Outcome
11.
Resuscitation ; 169: 4-10, 2021 12.
Article in English | MEDLINE | ID: mdl-34634358

ABSTRACT

AIM: To elicit preferences for prognostic information, attitudes towards withdrawal of life-sustaining treatment (WLST) and perspectives on acceptable quality of life after post-anoxic coma within the adult general population of Germany, Italy, the Netherlands and the United States of America. METHODS: A web-based survey, consisting of questions on respondent characteristics, perspectives on quality of life, communication of prognostic information, and withdrawal of life-sustaining treatment, was taken by adult respondents recruited from four countries. Statistical analysis included descriptive analysis and chi2-tests for differences between countries. RESULTS: In total, 2012 respondents completed the survey. In each country, at least 84% indicated they would prefer to receive early prognostic information. If a poor outcome was predicted with some uncertainty, 37-54% of the respondents indicated that WLST was not to be allowed. A conscious state with severe physical and cognitive impairments was perceived as acceptable quality of life by 17-44% of the respondents. Clear differences between countries exist, including respondents from the U.S. being more likely to allow WLST than respondents from Germany (OR = 1.99, p < 0.001) or the Netherlands (OR = 1.74, p < 0.001) and preferring to stay alive in a conscious state with severe physical and cognitive impairments more than respondents from Italy (OR = 3.76, p < 0.001), Germany (OR = 2.21, p < 0.001), or the Netherlands (OR = 2.39, p < 0.001). CONCLUSIONS: Over one-third of the respondents considered WLST unacceptable when there is any remaining prognostic uncertainty. Respondents had a more positive perspective on acceptable quality of life after coma than what is currently considered acceptable in medical literature. This indicates a need for a closer look at the practice of WLST based on prognostic information, to ensure responsible use of novel prognostic tests.


Subject(s)
Coma , Heart Arrest , Adult , Coma/epidemiology , Coma/etiology , Heart Arrest/epidemiology , Heart Arrest/therapy , Humans , Prognosis , Quality of Life , Withholding Treatment
12.
Cancers (Basel) ; 13(16)2021 Aug 06.
Article in English | MEDLINE | ID: mdl-34439126

ABSTRACT

As ongoing trials study the safety of an active surveillance strategy for low-risk ductal carcinoma in situ (DCIS), there is a need to explain why particular choices regarding treatment strategies are made by eligible women as well as their oncologists, what factors enter the decision process, and how much each factor affects their choice. To measure preferences for treatment and surveillance strategies, women with newly-diagnosed, primary low-risk DCIS enrolled in the Dutch CONTROL DCIS Registration and LORD trial, and oncologists participating in the Dutch Health Professionals Study were invited to complete a discrete choice experiment (DCE). The relative importance of treatment strategy-related attributes (locoregional intervention, 10-year risk of ipsilateral invasive breast cancer (iIBC), and follow-up interval) were discerned using conditional logit models. A total of n = 172 patients and n = 30 oncologists completed the DCE. Patient respondents had very strong preferences for an active surveillance strategy with no surgery, irrespective of the 10-year risk of iIBC. Extensiveness of the locoregional treatment was consistently shown to be an important factor for patients and oncologists in deciding upon treatment strategies. Risk of iIBC was least important to patients and most important to oncologists. There was a stronger inclination toward a twice-yearly follow-up for both groups compared to annual follow-up.

13.
Patient ; 14(3): 331-338, 2021 05.
Article in English | MEDLINE | ID: mdl-33748930

ABSTRACT

INTRODUCTION: One of the challenges faced by hospitals during the coronavirus disease 2019 (COVID-19) pandemic is resource shortages in intensive care units (ICUs). In times of scarcity, patient prioritization based on non-medical considerations might be necessary. OBJECTIVE: The aim of this study was to pilot test a survey to elicit public opinions on the relative importance of non-medical considerations in priority setting when admitting patients to the ICU in times of crisis. METHODS: A discrete-choice experiment was used to collect social preferences for priority setting when admitting patients to the ICU during the COVID-19 pandemic. The six attributes were patient age, profession, guardianship, risk-conscious behavior on a societal level, health-conscious behavior, and expected ICU length of stay. The data were analyzed using a mixed multinomial logit model. Interactions between the age and profession of the respondents and the age and profession of the patient profiles were considered. RESULTS: The mean (± standard deviation) age of respondents was 35.9 ± 14.5 years. In all, 70% of respondents indicated that medical and/or non-medical considerations should play a role in prioritizing patients for the ICU, whereas 15% agreed with a "first come, first served" strategy and the remaining 15% had no opinion. Respondents deemed risk-conscious behavior on a societal level to be the most important non-medical factor that should be used to prioritize patients in phase three of the framework, garnering an attribute importance (AI) of 31.2%, followed by patient age (AI 16.3%) and health-conscious behavior (AI 16.0%). ICU length of stay had the lowest impact on patient prioritization for ICU admittance (AI 10.9%). Younger and older respondents attached more importance to age than respondents in the middle age group and indicated a stronger preference to prioritize patients in their own age group (p = 0.042). CONCLUSION: The results of our study demonstrate the relative importance members of the public attach to responsible societal behavior during the COVID-19 pandemic. In the next phase of the study, we will elicit the perspectives of a representative sample of the Dutch population. Changes to the task design and attribute operationalization could improve the external validity of the study findings, and optimization of the experimental design will improve the internal validity of the study.


Subject(s)
COVID-19/epidemiology , Health Care Rationing/methods , Intensive Care Units/statistics & numerical data , Public Opinion , Adolescent , Adult , Age Factors , Aged , Aged, 80 and over , Choice Behavior , Delivery of Health Care , Female , Humans , Length of Stay , Male , Middle Aged , Netherlands/epidemiology , Pandemics , Patient Admission , Pilot Projects , SARS-CoV-2 , Triage/methods , Young Adult
14.
Ther Innov Regul Sci ; 55(2): 415-425, 2021 03.
Article in English | MEDLINE | ID: mdl-33111177

ABSTRACT

BACKGROUND: Benefit-risk assessments for medicinal products and devices have advanced significantly over the past decade. The purpose of this study was to characterize the extent to which the life sciences industry is utilizing quantitative benefit-risk assessment (qBRA) methods. METHODS: Semi-structured interviews were conducted with a sample of industry professionals working in drug and/or medical device benefit-risk assessments (n = 20). Questions focused on the use, timing, and impact of qBRA; implementation challenges; and future plans. Interviews were recorded, transcribed, and coded for thematic analysis. RESULTS: While most surveyed companies had applied qBRA, application was limited to a small number of assets-primarily to support internal decision-making and regulatory submissions. Positive impacts associated with use included improved team decision-making and communication. Multi-criteria decision analysis and discrete choice experiment were the most frequently utilized qBRA methods. A key challenge of qBRA use was the lack of clarity regarding its value proposition. Championing by senior company leadership and receptivity of regulators to such analyses were cited as important catalysts for successful adoption of qBRA. Investment in qBRA methods, via capability building and pilot studies, was also under way in some instances. CONCLUSION: qBRA application within this sample of life sciences companies was widespread, but concentrated in a small fraction of assets. Its use was primarily for internal decision-making or regulatory submissions. While some companies had plans to build further capacity in this area, others were waiting for further regulatory guidance before doing so.


Subject(s)
Communication , Industry , Leadership , Pilot Projects , Risk Assessment
15.
J Surg Res ; 257: 333-343, 2021 01.
Article in English | MEDLINE | ID: mdl-32892128

ABSTRACT

BACKGROUND: To improve surgical performance, image-guided (IG) technologies are increasingly introduced. Yet, it is unknown which oncological procedures yield most value from these technologies. This study aimed to select the most promising IG technology per oncologic indication. METHODS: An Analytic Hierarchical Process was used to evaluate three IG technologies: navigation, optical imaging, and augmented reality, in five oncologic indications compared with usual care. Sixteen decision criteria were selected. The relative importance of the criteria and the expected performance of the technologies were evaluated among surgeons. The combination of these scores gives the expected value per technology. RESULTS: On criteria level, sparing critical tissue (9%-18%) and reducing the risk of local recurrence (11%-27%) were most important. Navigation was preferred in three indications-removal of lymph nodes (42%), liver (47%), and rectal tumors (33%). In removing rectal tumors, optical imaging was equally preferred (34%). In removing breast and tongue tumors, no technology was clearly preferred. CONCLUSIONS: In selecting IG technologies, especially optical and navigation technologies are expected to add value in addition to usual care. Further development of those technologies for the preferred indications seems valuable. Multi-attribute analysis showed to be useful in prioritization of conducting clinical studies and steer research and development initiatives.


Subject(s)
Analytic Hierarchy Process , Neoplasms/surgery , Surgery, Computer-Assisted/statistics & numerical data , Humans , Surgeons/psychology , Surgery, Computer-Assisted/methods
16.
Value Health ; 23(7): 831-841, 2020 07.
Article in English | MEDLINE | ID: mdl-32762984

ABSTRACT

OBJECTIVE: This study examines European decision makers' consideration and use of quantitative preference data. METHODS: The study reviewed quantitative preference data usage in 31 European countries to support marketing authorization, reimbursement, or pricing decisions. Use was defined as: agency guidance on preference data use, sponsor submission of preference data, or decision-maker collection of preference data. The data could be collected from any stakeholder using any method that generated quantitative estimates of preferences. Data were collected through: (1) documentary evidence identified through a literature and regulatory websites review, and via key opinion leader outreach; and (2) a survey of staff working for agencies that support or make healthcare technology decisions. RESULTS: Preference data utilization was identified in 22 countries and at a European level. The most prevalent use (19 countries) was citizen preferences, collected using time-trade off or standard gamble methods to inform health state utility estimation. Preference data was also used to: (1) value other impact on patients, (2) incorporate non-health factors into reimbursement decisions, and (3) estimate opportunity cost. Pilot projects were identified (6 countries and at a European level), with a focus on multi-criteria decision analysis methods and choice-based methods to elicit patient preferences. CONCLUSION: While quantitative preference data support reimbursement and pricing decisions in most European countries, there was no utilization evidence in European-level marketing authorization decisions. While there are commonalities, a diversity of usage was identified between jurisdictions. Pilots suggest the potential for greater use of preference data, and for alignment between decision makers.


Subject(s)
Health Services Research/organization & administration , Patient Preference , Reimbursement Mechanisms , Research Design , Technology Assessment, Biomedical/methods , Biomedical Technology/economics , Choice Behavior , Costs and Cost Analysis , Decision Making , Decision Support Techniques , Europe , Humans , Pilot Projects , Surveys and Questionnaires
17.
Patient ; 13(4): 445-455, 2020 08.
Article in English | MEDLINE | ID: mdl-32329020

ABSTRACT

INTRODUCTION: Recent reviews on patients' preferences towards attributes of oral anti-coagulant therapy have shown that preference for convenience of therapy is heterogeneous. In this study, we used a novel approach-latent class analysis (LCA)-to assess heterogeneity. METHODS: We developed a health preference survey that consisted of 12 discrete choice questions. The following attributes of convenience were included: intake frequency; need for regular coagulation monitoring; diet or drug interactions; relation between medication and food intake; and pill type. Background questions about gender, age, current therapy [i.e., direct-acting oral anti-coagulant (DOAC) or vitamin K antagonist (VKA)], self-reported medication adherence, and pill burden were included. Mixed logit analysis (MLA) and LCA were performed. The scale-adjusted LCA model with two scale classes and four preference classes emerged as the model with the best fit and interpretability. RESULTS: A total of 508 patients with non-valvular atrial fibrillation from five European countries (Germany, Italy, Spain, France, and the UK) were surveyed in August 2017. The most important attributes were need for monitoring (37%) and intake frequency (27%). Patient preferences were significantly influenced by country, gender, and current anti-coagulant therapy. Four different preference classes of patients were identified in the LCA. First, most patients (57%) were in the "no need for regular coagulation monitoring" class. Current DOAC users and patients who were the least adherent to therapy were more likely to prefer no coagulation monitoring. Second, 20% of patients were in the "balanced" class of patients. Current VKA users with moderate adherence were more likely to be in this class. Patients who reported the lowest adherence were most likely in the "once daily, interactions likely" class (16%). Fourth, current VKA users and highly adherent patients were most likely to prefer therapies with a need for regular coagulation monitoring (7%). CONCLUSIONS: This study demonstrated significant preference heterogeneity among patients with atrial fibrillation and linked these preferences to differences in background characteristics. Country of residence and currently prescribed therapy influenced patient preferences in both the MLA and LCA models.


Subject(s)
Anticoagulants/therapeutic use , Atrial Fibrillation/drug therapy , Patient Preference , Adult , Age Factors , Aged , Anticoagulants/administration & dosage , Anticoagulants/adverse effects , Choice Behavior , Decision Support Techniques , Drug Administration Schedule , Drug Monitoring , Europe , Female , Humans , Latent Class Analysis , Male , Medication Adherence , Middle Aged , Sex Factors , Stroke/prevention & control
18.
Health Informatics J ; 26(1): 486-498, 2020 03.
Article in English | MEDLINE | ID: mdl-30915900

ABSTRACT

Current guidelines for the development of decision aids recommend that they have to include a process for helping patients clarify their personal values, for example, by using values clarification methods. In this article, we extensively described the development process of the web-based values clarification method for patients with localized low- to intermediate-risk prostate cancer based on the analytic hierarchy process. With analytic hierarchy process, the relative importance of different attributes of available treatments can be determined through series of pairwise comparisons of potential outcomes. Furthermore, analytic hierarchy process is able to use this information to present respondents with a quantitative overall treatment score and can therefore give actual treatment advice upon patients' request. The addition of this values clarification method to an existing web-based treatment decision aid for patients with localized prostate cancer is thought to improve the support offered to patients in their decision-making process and their decision quality.


Subject(s)
Prostatic Neoplasms , User-Centered Design , Decision Making , Decision Support Techniques , Humans , Male , Patient Participation , Prostatic Neoplasms/therapy , User-Computer Interface
19.
PLoS One ; 14(11): e0224550, 2019.
Article in English | MEDLINE | ID: mdl-31710618

ABSTRACT

OBJECTIVE: As part of the Models of Child Health Appraised (MOCHA) project, this study aimed to answer the following research questions: 1) How do European citizens perceive the quality of primary health care provided for children? And 2) What are their priorities with respect to quality assessment of primary health care aimed at satisfying children's needs? METHODS: Nine potential attributes of quality of primary care were operationalized in 40 quality aspects. An online survey was used to elicit opinions in a representative sample of citizens of Germany, the Netherlands, Poland, Spain, and the United Kingdom. Data collection comprised: background characteristics; perceived quality of primary health care for children; and priority setting of quality aspects. Descriptive analysis was performed and differences between groups were tested using Chi-Square test and ANOVA. RESULTS: Valid results were obtained from 2403 respondents. Mean satisfaction with quality of primary care ranged from 5.5 (Poland) to 7.2 (Spain). On average, between 56% (Poland) and 70% (Netherlands) of respondents had a positive perception of the primary health care system for children in their country. The ability of a child to limit their parents' access to the child's medical records was judged most negatively in all countries (average agreement score 28%, range 12-36%). The right of a child to a confidential consultation was judged most differently between countries (average agreement score 61%, range 40-75%). Overall top-10 priorities in ensuring high quality primary care were: timeliness (accessibility); skills/competences, management, facilities (appropriateness); no costs (affordability); information, dignity/respect (continuity); and swift referrals, collaboration (coordination). DISCUSSION: Between countries, significant differences exist in the perceived quality of primary care and priorities with regard to quality assessment. Taking into account the citizens' perspective in decision-making means that aspects with low perceived quality that are highly prioritized warrant further action.


Subject(s)
Patient Satisfaction , Primary Health Care/standards , Quality of Health Care/standards , Child , Europe , Health Care Surveys , Humans
20.
Value Health ; 22(11): 1283-1288, 2019 11.
Article in English | MEDLINE | ID: mdl-31708065

ABSTRACT

OBJECTIVE: Recent years have witnessed an increased interest in the use of multicriteria decision analysis (MCDA) to support health technology assessment (HTA) agencies for setting healthcare priorities. However, its implementation to date has been criticized for being "entirely mechanistic," ignoring opportunity costs, and not following best practice guidelines. This article provides guidance on the use of MCDA in this context. METHODS: The present study was based on a systematic review and consensus development. We developed a typology of MCDA studies and good implementation practice. We reviewed 36 studies over the period 1990 to 2018 on their compliance with good practice and developed recommendations. We reached consensus among authors over the course of several review rounds. RESULTS: We identified 3 MCDA study types: qualitative MCDA, quantitative MCDA, and MCDA with decision rules. The types perform differently in terms of quality, consistency, and transparency of recommendations on healthcare priorities. We advise HTA agencies to always include a deliberative component. Agencies should, at a minimum, undertake qualitative MCDA. The use of quantitative MCDA has additional benefits but also poses design challenges. MCDA with decision rules, used by HTA agencies in The Netherlands and the United Kingdom and typically referred to as structured deliberation, has the potential to further improve the formulation of recommendations but has not yet been subjected to broad experimentation and evaluation. CONCLUSION: MCDA holds large potential to support HTA agencies in setting healthcare priorities, but its implementation needs to be improved.


Subject(s)
Decision Making , Technology Assessment, Biomedical/organization & administration , Decision Support Techniques , Humans , Needs Assessment , Quality-Adjusted Life Years , Research Design , Severity of Illness Index , Technology Assessment, Biomedical/standards
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