| 1. |
- Ferreira, Mjv, et al.
(författare)
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Poster Session 3 : Tuesday 5 May 2015, 08
- 2015
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Ingår i: European Heart Journal Cardiovascular Imaging. - : Oxford University Press (OUP). - 2047-2404 .- 2047-2412. ; 16 Suppl 1
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Tidskriftsartikel (refereegranskat)
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| 2. |
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| 3. |
- Arvidsson, Per I., et al.
(författare)
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Öppenheten förstör chansen till patent
- 2015
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Ingår i: Svenska dagbladet. - Stockholm : Svenska Dagbladet AB & Co.. - 2001-3868.
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Tidskriftsartikel (populärvet., debatt m.m.)
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| 4. |
- Bayliss, Kerin, et al.
(författare)
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Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease : a meta-synthesis of qualitative studies
- 2018
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Ingår i: Journal of Risk Research. - : ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD. - 1366-9877 .- 1466-4461. ; 21:2, s. 167-189
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Tidskriftsartikel (refereegranskat)abstract
- Background: The availability of tests to predict the risk of developing chronic diseases is increasing. The identification of individuals at high risk of disease can trigger early intervention to reduce the risk of disease and its severity. In order for predictive tests to be accepted and used by those at risk, there is a need to understand people's perceptions of predictive testing.Method: A meta-synthesis of qualitative research that explored patient and public perceptions of predictive testing for chronic inflammatory diseases was conducted. Studies were coded by researchers and patient research partners, and then organised into common themes associated with the acceptability or use of predictive testing.Results: Perceived barriers to predictive testing were identified, including a concern about a lack of confidentiality around the use of risk information; a lack of motivation for change; poor communication of information; and a possible impact on emotional well-being. In order to reduce these barriers, the literature shows that a patient-centred approach is required at each stage of the testing process. This includes the consideration of individual needs, such as accessibility and building motivation for change; readily available and easy to understand pre and post-test information; support for patients on how to deal with the implications of their results; and the development of condition specific lifestyle intervention programmes to facilitate sustainable lifestyle changes.Conclusion: Patients and members of the public had some concerns about predictive testing; however, a number of strategies to reduce barriers and increase acceptability are available. Further research is required to inform the development of a resource that supports the individual to make an informed decision about whether to engage in a predictive test, what test results mean, and how to access post-test support.
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| 5. |
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| 6. |
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| 7. |
- Drevin, Jennifer
(författare)
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Measuring Pregnancy Planning and the Effect of Childhood Abuse on Reproductive Health
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The London Measure of Unplanned Pregnancy (LMUP) and the Swedish Pregnancy Planning Scale (SPPS) are two measurements of pregnancy planning. Adverse childhood experiences (ACEs) and childhood abuse are stressful events that have been suggested to have both short- and long-term effects.Study I investigated the psychometric properties of the LMUP and the SPPS and compared their assessments. Questionnaire data from 2,314 pregnant women showed medium-high construct validity and high test-retest reliability for both measurements. The convergent validity of LMUP was low. The assessments of the LMUP and the SPPS corresponded substantially.Study II explored how the SPPS was interpreted and what women considered when responding to it. Twenty-five pregnant women were interviewed. Women responding to the SPPS took into account their life situation, intentions, desires, timing, actions to prepare for, or avoid, pregnancy, having discussed becoming pregnant with their partner, and reactions after learning of the pregnancy.Study III analysed the association between ACEs and pregnancy-related pain. Pregnant women (n = 142) responded to questionnaires in early and late pregnancy, respectively, and reported their pain intensities and pain distributions. Greater exposure to ACEs was associated with higher pain distribution and women exposed to ACEs reported higher worst pain intensities compared to non-exposed.Study IV investigated effects of childhood emotional, physical and sexual abuse on pregnancy planning. The effect of a potential collider-stratification bias were also studied. Questionnaire data from 76,197 pregnant Norwegian women showed separate but no joint effects of the categories on having an unplanned pregnancy and a collider-stratification bias could not explain the effects.The LMUP and the SPPS measure somewhat different aspects of pregnancy planning and there is a substantial agreement between their assessments. Both the LMUP and the SPPS showed good validity and test-retest reliability. However, the LMUP would likely benefit from item reduction and the SPPS poorly captures any health-related changes made in and the preconception period.The results suggest that childhood abuse and ACEs have an effect on pregnancy planning and pregnancy-related pain. The findings suggest that preventing child abuse could have a positive effect on later reproductive health.
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| 8. |
- Engström, Gunnar, et al.
(författare)
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The Swedish CArdioPulmonary BioImage Study : objectives and design
- 2015
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Ingår i: Journal of Internal Medicine. - : Wiley. - 0954-6820 .- 1365-2796. ; 278:6, s. 645-659
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Tidskriftsartikel (refereegranskat)abstract
- Cardiopulmonary diseases are major causes of death worldwide, but currently recommended strategies for diagnosis and prevention may be outdated because of recent changes in risk factor patterns. The Swedish CArdioPulmonarybioImage Study (SCAPIS) combines the use of new imaging technologies, advances in large-scale 'omics' and epidemiological analyses to extensively characterize a Swedish cohort of 30 000 men and women aged between 50 and 64 years. The information obtained will be used to improve risk prediction of cardiopulmonary diseases and optimize the ability to study disease mechanisms. A comprehensive pilot study in 1111 individuals, which was completed in 2012, demonstrated the feasibility and financial and ethical consequences of SCAPIS. Recruitment to the national, multicentre study has recently started.
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| 9. |
- Godskesen, Tove, et al.
(författare)
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Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials
- 2015
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Ingår i: European Journal of Cancer Care. - : Wiley-Blackwell. - 0961-5423 .- 1365-2354. ; 24:1, s. 133-41
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Tidskriftsartikel (refereegranskat)abstract
- It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate 92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients show adequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.
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| 10. |
- Grady, Christine, et al.
(författare)
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Broad Consent for Research With Biological Samples : Workshop Conclusions
- 2015
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Ingår i: American Journal of Bioethics. - : Informa UK Limited. - 1526-5161 .- 1536-0075. ; 15:9, s. 34-42
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Tidskriftsartikel (refereegranskat)abstract
- Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health (NIH) Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and timely topic.
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