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  • 1.
    Godskesen, Tove
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Cancerpatienter i kliniska prövningar.2016In: Onkologi i Sverige, ISSN 1653-1582, no 1, p. 16-25Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Var tredje person i Sverige kommer under sin livstid att drabbas av cancer, vilket innebär att cancer är en folksjukdom. Stora summor pengar läggs ner på cancerforskning. Många säger att det inte alls är en omöjlig uppgift att besegra cancer, medan andra säger att det kommer att bli mycket svårt. Säkert är dock att om forskningen ska gå framåt krävs mycket pengar och hängivna forskare. Men intebara det. En grundförutsättning för att vi ska kunna få fram nya eller bättre cancerbehandlingar är att nya substanser testas på patienter i läkemedelsstudier, så kallade kliniska prövningar. Om inte patienter vill delta i medicinsk forskning kommer inte cancerforskningen att lyckas. Det är därför viktigt att undersöka hur patienter ser på deltagande i läkemedelsforskning. Trots att många cancerpatienter i Sverige deltar i läkemedelsstudier finns det väldigt lite forskning om varför de väljer att delta, om de förstått informationen de fått och hur de upplever sitt deltagande.

  • 2.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    God vård innebär att sällsynta sjukdomar ges resurser.2018In: Dagens Medicin, ISSN 1104-7488Article in journal (Other (popular science, discussion, etc.))
  • 3.
    Godskesen, Tove E
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Fernow, Josepine
    Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway.2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, article id e12937Article in journal (Refereed)
    Abstract [en]

    Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information available to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the documents were misleading in part. Furthermore, the descriptions provided almost no information about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple measures like readability testing can be useful as an indicator of text quality.

  • 4.
    Godskesen, Tove
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Selektiv rapportering av kliniska prövningar2019In: Dagens Medicin, ISSN 1402-1943Article in journal (Other (popular science, discussion, etc.))
  • 5.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Nygren, Peter
    Uppsala universitet.
    Nordin, Karin
    Uppsala universitet, Universitetet i Bergen.
    Hansson, Mats
    Uppsala universitet.
    Kihlbom, Ulrik
    Uppsala universitet.
    Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation2013In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, no 11, p. 3137-3142Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials.

    METHOD: A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis.

    RESULTS: The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable.

    CONCLUSIONS: Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

  • 6.
    Lerner, Henrik
    Linköpings universitet.
    Transeminarium om eutanasi för människa och av djur2010In: Svensk Veterinärtidning, Vol. 62, no 10, p. 23-25Article in journal (Other academic)
  • 7.
    Lerner, Henrik
    et al.
    Linköpings universitet.
    Lindblad, Anna
    Karolinska institutet.
    Algers, Bo
    Sveriges lantbruksuniversitet.
    Lynoe, Niels
    Karolinska institutet.
    Veterinary surgeons' attitudes towards physician-assisted suicide: an empirical study of Swedish experts on euthanasia2011In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 37, no 5, p. 295-298Article in journal (Refereed)
    Abstract [en]

    Aim: To examine the hypothesis that knowledge about physician-assisted suicide (PAS) and euthanasia is associated with a more restrictive attitude towards PAS.

    Design: A questionnaire about attitudes towards PAS, including prioritisation of arguments pro and contra, was sent to Swedish veterinary surgeons. The results were compared with those from similar surveys of attitudes among the general public and physicians.

    Participants: All veterinary surgeons who were members of the Swedish Veterinary Association and had provided an email address (n=2421).

    Main outcome measures: Similarities or differences in response pattern between veterinary surgeons, physicians and the general public.

    Results: The response pattern among veterinary surgeons and the general public was almost similar in all relevant aspects. Of the veterinarians 75% (95% CI 72% to 78%) were in favour of PAS, compared with 73% (95% CI 69% to 77%) among the general public. Only 10% (95% CI 5% to 15%) of the veterinary surgeons were against PAS, compared with 12% (95% CI 5% to 19%) among the general public. Finally, 15% (95% CI 10% to 21%) of veterinarians were undecided, compared with 15% (95% CI 8% to 22%) among the general public. Physicians had a more restrictive attitude to PAS than the general public.

    Conclusions: Since veterinary surgeons have frequent practical experience of euthanasia in animals, they do have knowledge about what euthanasia really is. Veterinary surgeons and the general public had an almost similar response pattern. Accordingly it seems difficult to maintain that knowledge about euthanasia is unambiguously associated with a restrictive attitude towards PAS.

  • 8.
    Lerner, Henrik
    et al.
    Linköpings universitet.
    Wendel, Lotta
    Om möss och människor: försöksobjektens rättsliga ställning i human- och djurlagstiftningen2008In: Djuren är väl också människor: en antologi om hälsa och välbefinnande i djurens och människornas värld / [ed] Bo Algers, Stefan Gunnarsson, Lennart Nordenfeldt, Skara: Institutionen för husdjurens miljö och hälsa, Sveriges lantbruksuniversitet , 2008, p. 93-101Chapter in book (Other academic)
  • 9.
    Spörndly, Robert
    et al.
    Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
    Eriksson, Stefan
    Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
    Representation of Ethnic Minoritites in Swedish Clinical Cancer Trials: A Qualitative Study of Physicians' Experiences2018In: Harvard Public Health Review, Vol. 20, p. 1-18Article in journal (Refereed)
    Abstract [en]

    International literature shows ethnic minorities and immigrants being underrepresented in clinical trials. This compromises the generalizability of the results and distributes the benefits of participating unequally. This problem is unexplored in Sweden. Therefore, this explorative qualitative study examines the barriers Swedish physicians encounter, the strategies they use to prevent and circumvent the issue, and the attitudes and perceptions they have. We found that physicians do encounter ethnic minority patients that they exclude from participation in clinical cancer trials. This is primarily because of language barriers preventing patients from understanding participant information. Conscious strategies to counter this are lacking. A lack of translated material and strict inclusion criteria are two obstacles that can be overcome. The general conception is that this issue is uncommon and unimportant from a medical perspective, but questions of fairness have been raised. For such reasons, further discussion and research on this issue are needed.

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