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  • 1.
    Ancillotti, Mirko
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Theology, Department of Theology.
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Institute of Health Policy and Management, Erasmus University, Bayle (J) building - Campus Woudestein, Burgemeester Oudlaan 50, 3062 PA Rotterdam, The Netherlands.
    Nihlén Fahlquist, Jessica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Andersson, Dan I
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Biochemistry and Microbiology.
    Godskesen, Tove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Ersta Sköndal Bräcke högskola, Stigbergsgatan 30, 100 61 Stockholm, Sweden.
    Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions2018In: BMC Public Health, ISSN 1471-2458, E-ISSN 1471-2458, Vol. 18, no 1, article id 1153Article in journal (Refereed)
    Abstract [en]

    Background

    High consumption of antibiotics has been identified as an important driver for the increasing antibiotic resistance, considered to be one of the greatest threats to public health globally. Simply informing the public about this consequence is insufficient to induce behavioral change. This study explored beliefs and perceptions among Swedes, with the aim of identifying factors promoting and hindering a judicious approach to antibiotics use. The study focused primarily on the medical use of antibiotics, also considering other aspects connected with antibiotic resistance, such as travelling and food consumption.

    Methods

    Data were collected through focus group discussions at the end of 2016. Twenty-three Swedes were recruited using an area-based approach and purposive sampling, aiming for as heterogeneous groups as possible regarding gender (13 women, 10 men), age (range 20–81, mean 38), and education level. Interview transcripts were analyzed using qualitative content analysis. The Health Belief Model was used as a theoretical framework.

    Results

    Antibiotic resistance was identified by participants as a health threat with the potential for terrible consequences. The severity of the problem was perceived more strongly than the actual likelihood of being affected by it. Metaphors such as climate change were abundantly employed to describe antibiotic resistance as a slowly emerging problem. There was a tension between individual (egoistic) and collective (altruistic) reasons for engaging in judicious behavior. The individual effort needed and antibiotics overprescribing were considered major barriers to such behavior. In their discussions, participants stressed the need for empowerment, achieved through good health communication from authorities and family physicians.

    Conclusions

    Knowledge about antibiotic consumption and resistance, as well as values such as altruism and trust in the health care system, has significant influence on both perceptions of individual responsibility and on behavior. This suggests that these factors should be emphasized in health education and health promotion. To instead frame antibiotic resistance as a slowly emerging disaster, risks diminish the public perception of being susceptible to it.

  • 2.
    de Bekker-Grob, Esther W.
    et al.
    Erasmus Univ, Sect Hlth Technol Assessment, POB 1738, NL-3000 DR Rotterdam, Netherlands.;Erasmus Univ, Inst Hlth Policy & Management, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands.;Erasmus MC Univ Med Ctr, Sect Med Decis Making, Rotterdam, Netherlands.;Erasmus MC Univ Med Ctr, Dept Publ Hlth, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands..
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Erasmus Univ, Sect Hlth Technol Assessment, POB 1738, NL-3000 DR Rotterdam, Netherlands.;Erasmus Univ, Inst Hlth Policy & Management, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands.
    Jonker, Marcel
    Erasmus Univ, Sect Hlth Technol Assessment, POB 1738, NL-3000 DR Rotterdam, Netherlands.;Erasmus Univ, Inst Hlth Policy & Management, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands..
    Donkers, Bas
    Erasmus Univ, Dept Business Econ, Rotterdam, Netherlands.;Erasmus Univ, Erasmus Sch Econ, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands..
    Huisman, Jan
    Het Doktershuis, Ridderkerk, Netherlands..
    Buis, Sylvia
    Gezondheidsctr Ommoord, Rotterdam, Netherlands..
    Swait, Joffre
    Univ South Australia, Inst Choice, Sydney, NSW, Australia..
    Lancsar, Emily
    Monash Univ, Ctr Hlth Econ, Melbourne, Vic, Australia..
    Witteman, Cilia L. M.
    Radboud Univ Nijmegen, Behav Sci Inst, Nijmegen, Netherlands..
    Bonsel, Gouke
    EuroQol Fdn, Rotterdam, Netherlands..
    Bindels, Patrick
    Erasmus MC Univ Med Ctr, Dept Gen Practice, Rotterdam, Netherlands..
    The impact of vaccination and patient characteristics on influenza vaccination uptake of elderly people: A discrete choice experiment2018In: Vaccine, ISSN 0264-410X, E-ISSN 1873-2518, Vol. 36, no 11, p. 1467-1476Article in journal (Refereed)
    Abstract [en]

    Objectives: To improve information for patients and to facilitate a vaccination coverage that is in line with the EU and World Health Organization goals, we aimed to quantify how vaccination and patient characteristics impact on influenza vaccination uptake of elderly people.

    Methods: An online discrete choice experiment (DCE) was conducted among 1261 representatives of the Dutch general population aged 60 years or older. In the DCE, we used influenza vaccination scenarios based on five vaccination characteristics: effectiveness, risk of severe side effects, risk of mild side effects, protection duration, and absorption time. A heteroscedastic multinomial logit model was used, taking scale and preference heterogeneity (based on 19 patient characteristics) into account.

    Results: Vaccination and patient characteristics both contributed to explain influenza vaccination uptake. Assuming a base case respondent and a realistic vaccination scenario, the predicted uptake was 58%. One-way changes in vaccination characteristics and patient characteristics changed this uptake from 46% up to 61% and from 37% up to 95%, respectively. The strongest impact on vaccination uptake was whether the patient had been vaccinated last year, whether s/he had experienced vaccination side effects, and the patient's general attitude towards vaccination.

    Conclusions: Although vaccination characteristics proved to influence influenza vaccination uptake, certain patient characteristics had an even higher impact on influenza vaccination uptake. Policy makers and general practitioners can use these insights to improve their communication plans and information regarding influenza vaccination for individuals aged 60 years or older. For instance, physicians should focus more on patients who had experienced side effects due to vaccination in the past, and policy makers should tailor the standard information folder to patients who had been vaccinated last year and to patient who had not.

  • 3.
    Eilers, R.
    et al.
    Univ Groningen, Univ Med Ctr Groningen, Dept Epidemiol, POB 30-001, NL-9700 RB Groningen, Netherlands.;Natl Inst Publ Hlth & Environm RIVM, Ctr Infect Dis Control, POB 1, NL-3720 BA Bilthoven, Netherlands..
    de Melker, H. E.
    Natl Inst Publ Hlth & Environm RIVM, Ctr Infect Dis Control, POB 1, NL-3720 BA Bilthoven, Netherlands..
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Natl Inst Publ Hlth & Environm RIVM, Ctr Nutr Prevent & Hlth Serv, NL-3720 BA Bilthoven, Netherlands.
    Krabbe, P. F. M.
    Univ Groningen, Univ Med Ctr Groningen, Dept Epidemiol, POB 30-001, NL-9700 RB Groningen, Netherlands..
    Vaccine preferences and acceptance of older adults2017In: Vaccine, ISSN 0264-410X, E-ISSN 1873-2518, Vol. 35, no 21, p. 2823-2830Article in journal (Refereed)
    Abstract [en]

    Background: Expanding vaccination programs for the older population might be important as older adults are becoming a larger proportion of the general population. The aim of this study is to determine the relative importance of vaccine and disease specific characteristics and acceptance for Dutch older adults, including pneumococcal disease, herpes zoster, pertussis vaccination, and influenza vaccination.

    Methods: A discrete choice experiment was conducted to generate choice data that was analyzed using a mixed multinomial logit statistical model.

    Results: Important factors that were associated with vaccination acceptance in older adults are high mortality risk of the infectious disease, high susceptibility of getting the infectious disease, and high vaccine effectiveness. Age, influenza vaccination in 2013 and self-perceived health score were identified as personal factors that affect vaccine preference. Potential vaccination rates of older adults were estimated at 68.1% for pneumococcal vaccination, 58.1% for herpes zoster vaccination, 53.9% for pertussis vaccination and 54.3% for influenza vaccination. For persons aged 50-65, potential vaccination rates were estimated at 58.1% for pneumococcal vaccination, 49.5% for herpes zoster vaccination, 43.9% for pertussis vaccination and 42.2% for influenza vaccination. For persons aged 65 and older, these were respectively 76.2%, 67.5%, 57.5% and 65.5%.

    Discussion: Our results suggest that older adults are most likely to accept pneumococcal vaccination of the four vaccines. Information provision accompanied with the implementation of a new vaccine has to be tailored for the individual and the vaccine it concerns. Special attention is needed to ensure high uptake among persons aged 50-65 years.

  • 4.
    Eilers, R.
    et al.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    van Lier, A.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Suijkerbuik, A.
    RIVM, Ctr Prevent & Hlth Serv Res, Bilthoven, Netherlands..
    Lehmann, B. A.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    de Melker, H. E.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ferreira, J.
    RIVM, Ctr Publ Hlth & Hlth Serv, Bilthoven, Netherlands..
    Mollema, L.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Kristensen, M.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Nielen, M. M.
    NIVEL, Utrecht, Netherlands..
    Kretzschmar, M. E.
    Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands..
    van der Maas, N.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Krabbe, P. F. M.
    Univ Groningen, Univ Med Ctr Groningen, Dept Epidemiol, Groningen, Netherlands..
    Mc Donald, S. A.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    van Essen, T.
    Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands..
    van der Hoek, W.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Opstelten, W.
    Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands..
    The willingness of older adults to receive vaccination against influenza, pneumococcal disease, herpes zoster and pertussis and the role of the general practitioners2016In: European Journal of Public Health, ISSN 1101-1262, E-ISSN 1464-360X, Vol. 26Article in journal (Refereed)
  • 5.
    Eilers, R.
    et al.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    van Lier, A.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Suijkerbuik, A.
    RIVM, Ctr Prevent & Hlth Serv Res, Bilthoven, Netherlands..
    Lehmann, B. A.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    de Melker, H. E.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ferreira, J.
    RIVM, Ctr Publ Hlth & Hlth Serv, Bilthoven, Netherlands..
    Mollema, L.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Kristensen, M.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Nielen, M. M.
    NIVEL, Utrecht, Netherlands..
    Kretzschmar, M. E.
    Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands..
    van der Maas, N.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Krabbe, P. F. M.
    Univ Groningen, Univ Med Ctr Groningen, Dept Epidemiol, Groningen, Netherlands..
    Mc Donald, S. A.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    van Essen, T.
    Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands..
    van der Hoek, W.
    RIVM, Ctr Infect Dis Control, Bilthoven, Netherlands..
    Opstelten, W.
    Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands..
    The willingness of older adults to receive vaccination against influenza, pneumococcal disease, herpes zoster and pertussis and the role of the general practitioners2016In: European Journal of Public Health, ISSN 1101-1262, E-ISSN 1464-360X, Vol. 26, p. 274-U502Article in journal (Other academic)
  • 6.
    Grauman, Åsa
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Puranen, Arvid
    Sunderby Hospital, Region Norrbotten, Luleå, Sweden.
    James, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiology.
    Veldwijk, Jorien
    Erasmus School of Health Policy & Management, Erasmus University, Rotterdam, Netherlands, Erasmus Choice Modelling Centre, Erasmus University, Rotterdam, Netherlands.
    Short-term mental distress in research participants after receiving cardiovascular risk information2019In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 5, article id e0217247Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Understanding of how cardiovascular risk information influence individuals is critical for the practice of risk assessment and the management of patients with cardiovascular disease.

    OBJECTIVES: The objective of this study was to investigate change in mental distress among research participants after undergoing a cardiovascular risk assessment and receiving individual test results.

    METHODS: In 2017, a questionnaire measuring mental distress after taking part in a risk assessment was distributed among 615 participants in the Swedish Cardiopulmonary Bio Image Study in Uppsala, Sweden, aged 50-64 years. Outcome measures were re-assessed after three months (30% were lost to follow-up).

    RESULTS: There were no differences in outcomes after three months for participants with normal test results or for participants who were referred to primary health care. Mental distress increased in participants who were referred to the hospital, and were further explained by the fact that these participants were diagnosed with coronary artery stenosis.

    CONCLUSIONS: CV risk information can be provided to individuals with lower levels of risk without concerns of inducing mental distress. However, in order to prevent unnecessary worry in contexts similar to this study, one should be prepared for different risk outcomes and plan for support for individuals with higher risk. The increased utility of powerful, yet not fully mature, imaging techniques requires careful considerations extending beyond medical risks and benefits; the clinician must also take into account the risk of mental distress and secure support when necessary.

  • 7.
    Janssens, R.
    et al.
    Univ Leuven, Leuven, Belgium..
    Huys, I
    Katholieke Univ Leuven, Leuven, Belgium..
    van Overbeeke, E.
    Univ Leuven, Leuven, Belgium..
    Whichello, C.
    Erasmus Univ, Rotterdam, Netherlands..
    de Bekker-Grob, E.
    Erasmus Univ, Rotterdam, Netherlands..
    Kuebler, J.
    QSciCon, Marburg, Germany..
    Harding, S.
    Takeda Dev Ctr Europe Ltd, London, England..
    Juhaeri, J.
    Sanofi, Bridgewater, NJ USA..
    Levitan, B.
    Janssen R&D, Titusville, NJ USA..
    Cleemput, I
    Belgian Hlth Care Knowledge Inst KCE, Brussels, Belgium..
    Russo, S.
    European Inst Oncol, Milan, Italy..
    Schölin Bywall, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Stakeholder Perspectives On The Integration Of Patient Preferences In The Medical Product Life Cycle: A Multimethod Approach2017In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 20, no 9, p. A689-A689Article in journal (Other academic)
  • 8.
    Molema, Claudia
    et al.
    Tilburg Univ, Dept Tranzo, Sci Ctr Care & Welf, Tilburg, Netherlands;Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands.
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands.
    Wendel-Vos, Wanda
    Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands.
    de Wit, Ardine
    Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands;Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands.
    van de Goor, Ien
    Tilburg Univ, Dept Tranzo, Sci Ctr Care & Welf, Tilburg, Netherlands.
    Schuit, Jantine
    Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands;Vrije Univ Amsterdam, Dept Hlth Sci, Amsterdam, Netherlands;EMGO Inst Hlth & Care Res, Amsterdam, Netherlands.
    Chronically ill patients' preferences for a financial incentive in a lifestyle intervention. Results of a discrete choice experiment2019In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 7, article id e0219112Article in journal (Refereed)
    Abstract [en]

    Background The preferences of diabetes type 2 patients and cardiovascular disease patients for a financial incentive added to a specified combined lifestyle intervention were investigated. Methods A discrete choice experiment questionnaire was filled out by 290 diabetes type 2 patients (response rate 29.9%). Panel-mixed-logit models were used to estimate the preferences for a financial incentive. Potential uptake rates of different financial incentives and relative importance scores of the included attributes were estimated. Included attributes and levels were: form of the incentive (cash money and different types of vouchers), value of the incentive (ranging from 15 to 100 euros), moment the incentive is received (start, halfway, after finishing the intervention) and prerequisite for receiving the incentive (registration, attendance or results at group or individual level). Results Prerequisites for receiving the financial incentive were the most important attribute, according to the respondents. Potential uptake rates for different financial incentives ranged between 37.9% and 58.8%. The latter uptake rate was associated with a financial incentive consisting of cash money with a value of (sic)100 that is handed out after completing the lifestyle program with the prerequisite that the participant attended at least 75% of the scheduled meetings. Conclusions The potential uptake of the different financial incentives varied between 37.9% and 58.8%. The value of the incentive does not significantly influence the potential uptake. However, the potential uptake and associated potential effect of the financial incentive is influenced by the type of financial incentive. The preferred type of incentive is (sic)100 in cash money, awarded after completing the lifestyle program if the participant attended at least 75% of the scheduled meetings.

  • 9.
    Russo, Selena
    et al.
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Discipline of Paediatrics, School of Women's and Children's Health, University of New South Wales, Kensington, New South Wales, Australia.
    Jongerius, Chiara
    Department of Medical Psychology—Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands.
    Faccio, Flavia
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Department of Oncology and Hemato-oncology, University of Milan, Milan, Italy.
    Pizzoli, Silvia F.M.
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Department of Oncology and Hemato-oncology, University of Milan, Milan, Italy.
    Pinto, Cathy Anne
    Department of Pharmacoepidemiology, Merck & Co, Inc, Kenilworth, NJ, USA.
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Erasmus School of Health Policy and Management and Erasmus Choice Modelling Center, Erasmus University, Rotterdam, the Netherlands.
    Janssens, Rosanne
    Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium.
    Simons, Gwenda
    Rheumatology Research Group, Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK.
    Falahee, Marie
    Rheumatology Research Group, Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK.
    de Bekker-Grob, Esther
    Erasmus School of Health Policy and Management and Erasmus Choice Modelling Center, Erasmus University, Rotterdam, the Netherlands.
    Huys, Isabelle
    Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium.
    Postmus, Douwe
    University Medical Center Groningen, Groningen, the Netherlands.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Pravettoni, Gabriella
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Department of Oncology and Hemato-oncology, University of Milan, Milan, Italy.
    Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies2019In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 22, no 4, p. 491-501Article, review/survey (Refereed)
    Abstract [en]

    Background

    Research has been mainly focused on how to elicit patient preferences, with less attention on why patients form certain preferences.

    Objectives

    To assess which psychological instruments are currently used and which psychological constructs are known to have an impact on patients' preferences and health-related decisions including the formation of preferences and preference heterogeneity.

    Methods

    A systematic database search was undertaken to identify relevant studies. From the selected studies, the following information was extracted: study objectives, study population, design, psychological dimensions investigated, and instruments used to measure psychological variables.

    Results

    Thirty-three studies were identified that described the association between a psychological construct, measured using a validated instrument, and patients' preferences or health-related decisions. We identified 33 psychological instruments and 18 constructs, and categorized the instruments into 5 groups, namely, motivational factors, cognitive factors, individual differences, emotion and mood, and health beliefs.

    Conclusions

    This review provides an overview of the psychological factors and related instruments in the context of patients' preferences and decisions in healthcaresettings. Our results indicate that measures of health literacy, numeracy, and locus of control have an impact on health-related preferences and decisions. Within the category of constructs that could explain preference and decision heterogeneity, health locus of control is a strong predictor of decisions in several healthcare contexts and is useful to consider when designing a patient preference study. Future research should continue to explore the association of psychological constructs with preference formation and heterogeneity to build on these initial recommendations.

  • 10.
    Schölin Bywall, Karin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Erasmus School of Health Policy & Management (ESHPM) and Erasmus Choice Modelling Centre (ECMC), Erasmus University Rotterdam, Rotterdam, The Netherlands.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis2019In: Patient, ISSN 1178-1653, E-ISSN 1178-1661, Vol. 12, no 3, p. 297-305Article in journal (Refereed)
    Abstract [en]

    Background

    There is increasing interest in involving patient preferences for benefits and risks in regulatory decision making. Therefore, it is essential to identify patient perspectives regarding the value of patient preference information (PPI).

    Objectives

    The aim of this study was to explore how patients with rheumatoid arthritis (RA) value the use of PPI in regulatory decision making regarding medical products.

    Methods

    Regulators and patients with RA were interviewed to gather initial insights into opinions on the use of PPI in regulatory decisions regarding medical products. The interviews were used to draft and validate the interview guide for focus groups with patients with RA. Participants were purposively sampled in collaboration with the Swedish Rheumatism Association in Stockholm and Uppsala. Each focus group consisted of three to six patients (18 in total). All interviews were audio-recorded, transcribed verbatim, and analysed using content analysis.

    Results

    According to the participants, PPI could lead to regulators considering patients’ needs, lifestyles and well-being when making decisions. PPI was important in all stages of the medical product lifecycle. Participants reported that, when participating in a preference study, it is important to be well-informed about the use of the study and the development, components, administration, and risks related to the medical products.

    Conclusions

    Patients thought PPI could be valuable to consider in regulatory decisions. It is essential for patients to be well-informed when asked for their preferences. Research on information materials to inform patients in preference studies is needed to increase the value of PPI in regulatory decision making.

  • 11.
    Schölin Bywall, Karin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Rheumatoid Arthritis Patients’ Perspectives On The Value Of Patient Preferences In Regulatory Decision-Making During Drug Development: A Qualitative Study2017In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 20, no 9, p. A540-A540Article in journal (Other academic)
  • 12.
    Soekhai, V
    et al.
    Erasmus Univ, Med Ctr, Rotterdam, Netherlands..
    Whichello, C.
    Erasmus Univ, Rotterdam, Netherlands..
    Levitan, B.
    Janssen R&D, Titusville, NJ USA..
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hammad, T.
    Merck & Co Inc, N Wales, PA USA..
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Erasmus Univ, Rotterdam, Netherlands..
    van Overbeeke, E.
    Katholieke Univ Leuven, Leuven, Belgium..
    Russo, S.
    European Inst Oncol, Milan, Italy..
    Mohamed, A.
    Bayer, Whippany, NJ USA..
    Hermann, R.
    AstraZeneca, Wilmington, DE USA..
    Huys, I
    Katholieke Univ Leuven, Leuven, Belgium..
    Patadia, V
    Sanofi, Bridgewater, NJ USA..
    Juhaeri, J.
    Sanofi, Bridgewater, NJ USA..
    de Bekker-Grob, E.
    Compendium Of Methods For Measuring Patient Preferences In Medical Treatment2017In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 20, no 9, p. A684-A685Article in journal (Other academic)
  • 13.
    van Overbeeke, E.
    et al.
    Univ Leuven, Leuven, Belgium..
    Whichello, C.
    Erasmus Univ, Rotterdam, Netherlands..
    Janssens, R.
    Univ Leuven, Leuven, Belgium..
    de Bekker-Grob, E.
    Erasmus Univ, Rotterdam, Netherlands..
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Levitan, B.
    Janssen R&D, Titusville, NJ USA..
    Kuebler, J.
    QSciCon, Marburg, Germany..
    Russo, S.
    European Inst Oncol, Milan, Italy..
    Schölin Bywall, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Cleemput, Y.
    Belgian Hlth Care Knowledge Inst KCE, Brussels, Belgium..
    Juhaeri, J.
    Sanofi, Bridgewater, NJ USA..
    Huys, I
    Katholieke Univ Leuven, Leuven, Belgium..
    Conditions And Contextual Factors That Influence The Utility And Application Of Patient Preference Studies: A Study Combining Literature And Focus Groups2017In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 20, no 9, p. A690-A691Article in journal (Other academic)
  • 14.
    van Overbeeke, Eline
    et al.
    Clinical Pharmacology and Pharmacotherapy, KU Leuven, Leuven, Belgium.
    Janssens, Rosanne
    Clinical Pharmacology and Pharmacotherapy, KU Leuven, Leuven, Belgium.
    Whichello, Chiara
    School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, Netherlands.
    Schölin Bywall, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Sharpe, Jenny
    Muscular Dystrophy UK, London, United Kingdom.
    Nikolenko, Nikoletta
    John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, United Kingdom.
    Philips, Berkeley S.
    Pfizer, Tadworth, United Kingdom.
    Guiddi, Paolo
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy.
    Pravettoni, Gabriella
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Department of Oncology and Hematology Oncology, Faculty of Medicine and Surgery, University of Milan, Milan, Italy.
    Vergani, Laura
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Department of Oncology and Hematology Oncology, Faculty of Medicine and Surgery, University of Milan, Milan, Italy.
    Marton, Giulia
    Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy; Department of Oncology and Hematology Oncology, Faculty of Medicine and Surgery, University of Milan, Milan, Italy.
    Cleemput, Irina
    Belgian Health Care Knowledge Centre, Brussels, Belgium.
    Simoens, Steven
    Clinical Pharmacology and Pharmacotherapy, KU Leuven, Leuven, Belgium.
    Kübler, Jürgen
    Quantitative Scientific Consulting, Marburg, Germany.
    Juhaeri, Juhaeri
    Sanofi, Bridgewater, NJ, United States.
    Levitan, Bennet
    Janssen Research & Development, Titusville, NJ, United States.
    de Bekker-Grob, Esther W.
    School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, Netherlands.
    Veldwijk, Jorien
    School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, Netherlands.
    Huys, Isabelle
    Clinical Pharmacology and Pharmacotherapy, KU Leuven, Leuven, Belgium.
    Design, Conduct, and Use of Patient Preference Studies in the Medical Product Life Cycle: A Multi-Method Study2019In: Frontiers in Pharmacology, ISSN 1663-9812, E-ISSN 1663-9812, Vol. 10, no 1395Article in journal (Refereed)
    Abstract [en]

    Objectives: To investigate stakeholder perspectives on how patient preference studies (PPS) should be designed and conducted to allow for inclusion of patient preferences in decision-making along the medical product life cycle (MPLC), and how patient preferences can be used in such decision-making.

    Methods: Two literature reviews and semi-structured interviews (n = 143) with healthcare stakeholders in Europe and the US were conducted; results of these informed the design of focus group guides. Eight focus groups were conducted with European patients, industry representatives and regulators, and with US regulators and European/Canadian health technology assessment (HTA) representatives. Focus groups were analyzed thematically using NVivo.

    Results: Stakeholder perspectives on how PPS should be designed and conducted were as follows: 1) study design should be informed by the research questions and patient population; 2) preferred treatment attributes and levels, as well as trade-offs among attributes and levels should be investigated; 3) the patient sample and method should match the MPLC phase; 4) different stakeholders should collaborate; and 5) results from PPS should be shared with relevant stakeholders. The value of patient preferences in decision-making was found to increase with the level of patient preference sensitivity of decisions on medical products. Stakeholders mentioned that patient preferences are hardly used in current decision-making. Potential applications for patient preferences across industry, regulatory and HTA processes were identified. Four applications seemed most promising for systematic integration of patient preferences: 1) benefit-risk assessment by industry and regulators at the marketing-authorization phase; 2) assessment of major contribution to patient care by European regulators; 3) cost-effectiveness analysis; and 4) multi criteria decision analysis in HTA.

    Conclusions: The value of patient preferences for decision-making depends on the level of collaboration across stakeholders; the match between the research question, MPLC phase, sample, and preference method used in PPS; and the sensitivity of the decision regarding a medical product to patient preferences. Promising applications for patient preferences should be further explored with stakeholders to optimize their inclusion in decision-making.

  • 15.
    van Overbeeke, Eline
    et al.
    Clinical Pharmacology and Pharmacotherapy, University of Leuven, Herestraat 49 Box 521, 3000 Leuven, Belgium.
    Whichello, Chiara
    Erasmus School of Health Policy & Management (ESHPM) and Erasmus Choice Modelling Centre (ECMC), Erasmus University Rotterdam, P.O. Box 1738, 3000 DR Rotterdam, The Netherlands.
    Janssens, Rosanne
    Erasmus School of Health Policy & Management (ESHPM) and Erasmus Choice Modelling Centre (ECMC), Erasmus University Rotterdam, P.O. Box 1738, 3000 DR Rotterdam, The Netherlands.
    Veldwijk, Jorien
    Erasmus School of Health Policy & Management (ESHPM) and Erasmus Choice Modelling Centre (ECMC), Erasmus University Rotterdam, P.O. Box 1738, 3000 DR Rotterdam, The Netherlands.
    Cleemput, Irina
    Belgian Health Care Knowledge Centre (KCE), Kruidtuinlaan 55, 1000 Brussels, Belgium.
    Simoens, Steven
    Clinical Pharmacology and Pharmacotherapy, University of Leuven, Herestraat 49 Box 521, 3000 Leuven, Belgium.
    Juharei, Juharei
    Sanofi, 55 Corporate Drive, Bridgewater, NJ 08807, USA.
    Levitan, Bennett
    Janssen Research & Development, 1125 Trenton-Harbourton Road, P.O. Box 200, Titusville, NJ 08560, USA.
    Kübler, Jürgen
    Quantitative Scientific Consulting, Europabadstr. 8, 35041 Marburg, Germany.
    de Bekker-Grob, Esther
    Erasmus School of Health Policy & Management (ESHPM) and Erasmus Choice Modelling Centre (ECMC), Erasmus University Rotterdam, P.O. Box 1738, 3000 DR Rotterdam, The Netherlands.
    Huys, Isabelle
    Clinical Pharmacology and Pharmacotherapy, University of Leuven, Herestraat 49 Box 521, 3000 Leuven, Belgium.
    Factors and situations influencing the value of patient preference studies along the medical product lifecycle: a literature review2018In: Drug Discovery Today, ISSN 1359-6446, E-ISSN 1878-5832Article in journal (Refereed)
    Abstract [en]

    Industry, regulators, health technology assessment (HTA) bodies, and payers are exploring the use of patient preferences in their decision-making processes. In general, experience in conducting and assessing patient preference studies is limited. Here, we performed a systematic literature search and review to identify factors and situations influencing the value of patient preference studies, as well as applications throughout the medical product lifecyle. Factors and situations identified in 113 publications related to the organization, design, and conduct of studies, and to communication and use of results. Although current use of patient preferences is limited, we identified possible applications in discovery, clinical development, marketing authorization, HTA, and postmarketing phases.

  • 16.
    Veldwijk, Jorien
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Determann, D.
    Lambooij, M.
    van Til, J. A.
    Korfage, I. J.
    de Bekker-Grob, E. W.
    de Wit, A.
    Exploring how individuals complete the choice tasks in a discrete choice experiment: an interview study2016In: BMC Medical Research Methodology, ISSN 1471-2288, E-ISSN 1471-2288, Vol. 16, no 45Article in journal (Refereed)
    Abstract [en]

    Background

    To be able to make valid inferences on stated preference data from a Discrete Choice Experiment (DCE) it is essential that researchers know if participants were actively involved, understood and interpreted the provided information correctly and whether they used complex decision strategies to make their choices and thereby acted in accordance with the continuity axiom.

    Methods

    During structured interviews, we explored how 70 participants evaluated and completed four discrete choice tasks aloud. Hereafter, additional questions were asked to further explore if participants understood the information that was provided to them and whether they used complex decision strategies (continuity axiom) when making their choices. Two existing DCE questionnaires on rotavirus vaccination and prostate cancer-screening served as case studies.

    Results

    A large proportion of the participants was not able to repeat the exact definition of the risk attributes as explained to them in the introduction of the questionnaire. The majority of the participants preferred more optimal over less optimal risk attribute levels. Most participants (66 %) mentioned three or more attributes when motivating their decisions, thereby acting in accordance with the continuity axiom. However, 16 out of 70 participants continuously mentioned less than three attributes when motivating their decision. Lower educated and less literate participants tended to mention less than three attributes when motivating their decision and used trading off between attributes less often as a decision-making strategy.

    Conclusion

    The majority of the participants seemed to have understood the provided information about the choice tasks, the attributes, and the levels. They used complex decision strategies (continuity axiom) and are therefore capable to adequately complete a DCE. However, based on the participants’ age, educational level and health literacy additional, actions should be undertaken to ensure that participants understand the choice tasks and complete the DCE as presumed.

  • 17.
    Veldwijk, Jorien
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Erasmus Univ, Erasmus Sch Hlth Policy & Management, POB 1738, NL-3000 DR Rotterdam, Netherlands;Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands.
    Groothuis-Oudshoorn, Catharina G. M.
    Univ Twente, Hlth Technol & Serv Res, Enschede, Netherlands.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics. Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Langenskiöld, Sophie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Dekker, Evelien
    Acad Med Ctr, Dept Gastroenterol & Hepatol, Amsterdam, Netherlands.
    Kallenberg, Frank G. J.
    Acad Med Ctr, Dept Gastroenterol & Hepatol, Amsterdam, Netherlands.
    de Wit, G. Ardine
    Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands;Univ Med Ctr Utrecht, Julius Ctr Hlth Sci & Primary Care, Utrecht, Netherlands.
    Lambooij, Mattijs S.
    Natl Inst Publ Hlth & Environm, Ctr Nutr Prevent & Hlth Serv, Bilthoven, Netherlands.
    How psychological distance of a study sample in discrete choice experiments affects preference measurement: a colorectal cancer screening case study2019In: Patient Preference and Adherence, ISSN 1177-889X, E-ISSN 1177-889X, Vol. 13, p. 273-282Article in journal (Refereed)
    Abstract [en]

    Purpose: The purpose of this study was to investigate to what extent the outcomes of a discrete choice experiment (DCE) differ based on respondents' psychological distance to the decision at hand. Methods: A DCE questionnaire regarding individuals' preferences for genetic screening for colorectal cancer (CRC) within the Dutch national CRC screening program was created. The DCE contained nine D-efficient designed choice tasks and was distributed among two populations that differ in their psychological distance to the decision at hand: 1) a representative sample of the Dutch general population aged 55-65 years, and 2) a sample of Dutch individuals who attended an information appointment regarding colonoscopies following the detection of blood in their stool sample in the CRC screening program. The DCE consisted of four attributes related to the decision whether to participate in genetic screening for CRC: 1) risk of being genetically predisposed, 2) risk of developing CRC, 3) frequency of follow-up colonoscopies, and 4) survival. Direct attribute ranking, dominant decision-making behavior, and relative importance scores (based on panel MIXL) were compared between the two populations. Attribute level estimates were compared with the Swait and Louviere test. Results: The proportion of respondents who both ranked survival as the most important attribute, and showed dominant decision-making behavior for this attribute, was significantly higher in the screened population compared to the general population. The relative importance scores of the attributes significantly differed between populations. Finally, the Swait and Louviere test also revealed significant differences in attribute level estimates in both the populations. Conclusion: The study outcomes differed between populations depending on their psychological distance to the decision. This study shows the importance of adequate sample selection; therefore, it is advocated to increase attention to study sample selection and reporting in DCE studies.

  • 18.
    Viberg, Jennifer
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Langenskiöld, Sophie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiology. Karolinska Inst, Med Management Ctr, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Segerdahl, Pär
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hösterey, Ulrika Ugander
    Sahlgrens Univ Hosp, Dept Clin Pathol & Genet, Gothenburg, Sweden.
    Gummesson, Anders
    Sahlgrens Univ Hosp, Dept Clin Pathol & Genet, Gothenburg, Sweden.
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Erasmus Univ, Erasmus Sch Hlth Policy & Management, Rotterdam, Netherlands; Erasmus Univ, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands.
    Research participants' preferences for receiving genetic risk information: a discrete choice experiment2019In: Genetics in Medicine, ISSN 1098-3600, E-ISSN 1530-0366, Vol. 21, no 10, p. 2381-2389Article in journal (Refereed)
    Abstract [en]

    Purpose: This study aims to determine research participants’ preferences for receiving genetic risk information when participating in a scientific study that uses genome sequencing.

    Methods: A discrete choice experiment questionnaire was sent to 650 research participants (response rate 60.5%). Four attributes were selected for the questionnaire: type of disease, disease penetrance probability, preventive opportunity, and effectiveness of the preventive measure. Panel mixed logit models were used to determine attribute level estimates and the heterogeneity in preferences. Relative importance of the attribute and the predicted uptake for different information scenarios were calculated from the estimates. In addition, this study estimates predicted uptake for receiving genetic risk information in different scenarios.

    Results: All characteristics influenced research participants’ willingness to receive genetic risk information. The most important characteristic was the effectiveness of the preventive opportunity. Predicted uptake ranged between 28% and 98% depending on what preventive opportunities and levels of effectiveness were presented.

    Conclusion: Information about an effective preventive measure was most important for participants. They valued that attribute twice as much as the other attributes. Therefore, when there is an effective preventive measure, risk communication can be less concerned with the magnitude of the probability of developing disease.

     

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