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Kihlbom, Ulrik
Publications (10 of 23) Show all publications
Matar, A., Höglund, A. T., Segerdahl, P. & Kihlbom, U. (2020). Autonomous decisions by couples in reproductive care.. BMC Medical Ethics, 21(30)
Open this publication in new window or tab >>Autonomous decisions by couples in reproductive care.
2020 (English)In: BMC Medical Ethics, ISSN 1472-6939, Vol. 21, no 30Article in journal (Refereed) Published
Place, publisher, year, edition, pages
Springer, 2020
National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-410053 (URN)10.1186/s12910-020-00470-w (DOI)
Available from: 2020-05-07 Created: 2020-05-07 Last updated: 2020-05-07
Veldwijk, J., Groothuis-Oudshoorn, C. G. M., Kihlbom, U., Langenskiöld, S., Dekker, E., Kallenberg, F. G. J., . . . Lambooij, M. S. (2019). How psychological distance of a study sample in discrete choice experiments affects preference measurement: a colorectal cancer screening case study. Patient Preference and Adherence, 13, 273-282
Open this publication in new window or tab >>How psychological distance of a study sample in discrete choice experiments affects preference measurement: a colorectal cancer screening case study
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2019 (English)In: Patient Preference and Adherence, ISSN 1177-889X, E-ISSN 1177-889X, Vol. 13, p. 273-282Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
DOVE MEDICAL PRESS LTD, 2019
Keywords
discrete choice experiment, preferences, stated preferences, sample, psychological distance, genetic screening
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:uu:diva-377980 (URN)10.2147/PPA.S180994 (DOI)000458900800001 ()
Available from: 2019-03-04 Created: 2019-03-04 Last updated: 2019-03-04Bibliographically approved
Schölin Bywall, K., Veldwijk, J., Hansson, M. G. & Kihlbom, U. (2019). Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis. Patient, 12(3), 297-305
Open this publication in new window or tab >>Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis
2019 (English)In: Patient, ISSN 1178-1653, E-ISSN 1178-1661, Vol. 12, no 3, p. 297-305Article in journal (Refereed) Published
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.

National Category
Medical Ethics
Identifiers
urn:nbn:se:uu:diva-366354 (URN)10.1007/s40271-018-0344-2 (DOI)000468375300003 ()30443897 (PubMedID)
Funder
Riksbankens Jubileumsfond, M13-0260:1
Available from: 2018-11-20 Created: 2018-11-20 Last updated: 2019-06-24Bibliographically approved
Russo, S., Jongerius, C., Faccio, F., Pizzoli, S. F. .., Pinto, C. A., Veldwijk, J., . . . Pravettoni, G. (2019). Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies. Value in Health, 22(4), 491-501
Open this publication in new window or tab >>Understanding Patients' Preferences: A Systematic Review of Psychological Instruments Used in Patients' Preference and Decision Studies
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2019 (English)In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 22, no 4, p. 491-501Article, review/survey (Refereed) Published
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.

Keywords
decision making, instruments, measurements, patient preference, psychological variables, stated preferences
National Category
Pharmaceutical Sciences
Research subject
Social Pharmacy
Identifiers
urn:nbn:se:uu:diva-381724 (URN)10.1016/j.jval.2018.12.007 (DOI)000463876900014 ()30975401 (PubMedID)
Projects
IMI-PREFER
Funder
EU, Horizon 2020, 115966
Available from: 2019-04-12 Created: 2019-04-12 Last updated: 2019-05-03Bibliographically approved
Whichello, C., Soekhai, V., Levitan, B., Veldwijk, J., Hammad, T., Kihlbom, U., . . . de Bekker-Grob, E. (2018). Compendium of methods for measuring patient preferences in medical treatment. Pharmacoepidemiology and Drug Safety, 27(Suppl. 2), 517-518, Article ID 1135.
Open this publication in new window or tab >>Compendium of methods for measuring patient preferences in medical treatment
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2018 (English)In: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, no Suppl. 2, p. 517-518, article id 1135Article in journal, Meeting abstract (Other academic) Published
Place, publisher, year, edition, pages
WILEY, 2018
National Category
Pharmacology and Toxicology Pharmaceutical Sciences
Identifiers
urn:nbn:se:uu:diva-364843 (URN)10.1002/pds.4629 (DOI)000441893804226 ()
Available from: 2018-11-05 Created: 2018-11-05 Last updated: 2018-11-05Bibliographically approved
Renzi, C., Provencal, N., Bassil, K. C., Evers, K., Kihlbom, U., Radford, E. J., . . . Rutten, B. P. (2018). From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health.. Progress in Molecular Biology and Translational Science, 158, 299-323
Open this publication in new window or tab >>From Epigenetic Associations to Biological and Psychosocial Explanations in Mental Health.
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2018 (English)In: Progress in Molecular Biology and Translational Science, ISSN 1877-1173, E-ISSN 1878-0814, Vol. 158, p. 299-323Article, review/survey (Refereed) Published
Abstract [en]

The development of mental disorders constitutes a complex phenomenon driven by unique social, psychological and biological factors such as genetics and epigenetics, throughout an individual's life course. Both environmental and genetic factors have an impact on mental health phenotypes and act simultaneously to induce changes in brain and behavior. Here, we describe and critically evaluate the current literature on gene-environment interactions and epigenetics on mental health by highlighting recent human and animal studies. We furthermore review some of the main ethical and social implications concerning gene-environment interactions and epigenetics and provide explanations and suggestions on how to move from statistical and epigenetic associations to biological and psychological explanations within a multi-disciplinary and integrative approach of understanding mental health.

Keywords
Brain development, Environment, Epidemiology, Epigenetics, Genetics, Gene–environment interactions, Mental disorders, Mental health, Neuronal epigenesis
National Category
Medical Genetics
Identifiers
urn:nbn:se:uu:diva-372312 (URN)10.1016/bs.pmbts.2018.04.011 (DOI)000452377300013 ()30072059 (PubMedID)
Available from: 2019-01-07 Created: 2019-01-07 Last updated: 2019-01-17Bibliographically approved
Kihlbom, U. (2018). Genetic risk and value. Journal of Risk Research, 21(2), 222-235
Open this publication in new window or tab >>Genetic risk and value
2018 (English)In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 222-235Article in journal (Refereed) Published
Abstract [en]

A conceptual truth about risks is that they involve a possible and future adverse effect or a negative value of some kind. The genetic risks that individuals may face in the health care setting differ in some crucial respects to other kind of risks. The aims of this paper are to analyse the notion of value in the context of genetic risk in the setting of health care, and to suggest a conception of the evaluative aspect of genetic risk that is fruitful for genetic risk information. Two influential and relevant approaches to value, preferentialism and the capability approach, are discussed in the light of certain distinctive features of genetic risk and a third, a sensibility theory of value is suggested. According to this view, the concept of risk is a so-called ‘thick’ evaluative concept that has both a world-guiding function as well as an action-guiding or normative function. It is argued that this provides a more promising way to think about genetic risks in the clinical setting.

Place, publisher, year, edition, pages
Taylor & Francis Group, 2018
Keywords
genetic risk, values, ethics, preferentialism, the capability approach, thick moral concepts
National Category
Medical Ethics
Research subject
Bioethics
Identifiers
urn:nbn:se:uu:diva-303537 (URN)10.1080/13669877.2016.1200653 (DOI)000419609100008 ()
Projects
Mind the Risk
Funder
Riksbankens Jubileumsfond, M13-0260:1
Available from: 2016-09-20 Created: 2016-09-20 Last updated: 2018-02-07Bibliographically approved
Kihlbom, U., Russo, S., Monzani, D., Stichele, G. V., Verscheuren, S. & Pinto, C. A. (2018). Patient-centered benefit-risk decision-making and the role of educational tools and psychological instruments in preference elicitation-Year 1 of IMI prefer. Pharmacoepidemiology and Drug Safety, 27(Suppl. 2), 512-512, Article ID 1123.
Open this publication in new window or tab >>Patient-centered benefit-risk decision-making and the role of educational tools and psychological instruments in preference elicitation-Year 1 of IMI prefer
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2018 (English)In: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, no Suppl. 2, p. 512-512, article id 1123Article in journal, Meeting abstract (Other academic) Published
Place, publisher, year, edition, pages
WILEY, 2018
National Category
Pharmacology and Toxicology
Identifiers
urn:nbn:se:uu:diva-364842 (URN)10.1002/pds.4629 (DOI)000441893804214 ()
Available from: 2018-11-05 Created: 2018-11-05 Last updated: 2018-11-05Bibliographically approved
Soekhai, V., Whichello, C., Levitan, B., Veldwijk, J., Hammad, T., Kihlbom, U., . . . de Bekker-Grob, E. (2017). Compendium Of Methods For Measuring Patient Preferences In Medical Treatment. Value in Health, 20(9), A684-A685
Open this publication in new window or tab >>Compendium Of Methods For Measuring Patient Preferences In Medical Treatment
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2017 (English)In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 20, no 9, p. A684-A685Article in journal, Meeting abstract (Other academic) Published
National Category
Health Sciences
Identifiers
urn:nbn:se:uu:diva-345700 (URN)10.1016/j.jval.2017.08.1725 (DOI)000413599902268 ()
Projects
IMI-PREFER
Available from: 2018-03-16 Created: 2018-03-16 Last updated: 2018-10-04Bibliographically approved
Godskesen, T. & Kihlbom, U. (2017). "I have a lot of pills in my bag, you know": Institutional Norms in the Provision of Hope in Phase 1 Clinical Cancer Trials. Journal of Oncology Pharmacy Practice, 13(10), 679-682
Open this publication in new window or tab >>"I have a lot of pills in my bag, you know": Institutional Norms in the Provision of Hope in Phase 1 Clinical Cancer Trials
2017 (English)In: Journal of Oncology Pharmacy Practice, ISSN 1078-1552, E-ISSN 1477-092X, Vol. 13, no 10, p. 679-682Article in journal (Refereed) Published
Abstract [en]

Hope of a miracle cure is often an important motive for participating in phase 1 clinical cancer trials. Communication of hope may stimulate patients to participate and may enhance their quality of life; however, it may also deprive them of an opportunity to spend the remainder of their lives as they wish. Much depends on the kind of hope involved. This article outlines three forms of hope entertained by trial participants that, in various ways, are triggered, enhanced or modified by institutional norms within health care. This has normative as well as clinical implications; the information threshold for informed consent to enter phase 1 trials should be higher than that for consenting to medical treatment or entering randomised, controlled, phase 3 trials, clarifying the demarcation between clinical treatment and research. A simultaneous care model that integrates both trial participation and palliative care could and should also be offered; this is in line with the recommendations of the WHO, which state that palliative care should be applicable early in the course of illness. 

Keywords
Clinical trials phase 1, cancer, palliative, hope
National Category
Medical Ethics Cancer and Oncology
Research subject
Bioethics
Identifiers
urn:nbn:se:uu:diva-252879 (URN)10.1200/JOP.2017.021832 (DOI)000414677100014 ()28837376 (PubMedID)
Funder
Swedish Cancer Society
Available from: 2015-05-13 Created: 2015-05-13 Last updated: 2018-08-02
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