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  • 1.
    Alevronta, Eleftheria
    et al.
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Sjöberg, Fei
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Jörnsten, Rebecka
    Karolinska institutet.
    Steineck, Gunnar
    Göteborgs universitet, Chalmers tekniska högskola.
    Dose-response relationships of the sigmoid for urgency syndrome after gynecological radiotherapy.2018In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, no 10, p. 1352-1358Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To find out what organs and doses are most relevant for 'radiation-induced urgency syndrome' in order to derive the corresponding dose-response relationships as an aid for avoiding the syndrome in the future.

    MATERIAL AND METHODS: From a larger group of gynecological cancer survivors followed-up 2-14 years, we identified 98 whom had undergone external beam radiation therapy but not brachytherapy and not having a stoma. Of those survivors, 24 developed urgency syndrome. Based on the loading factor from a factor analysis, and symptom frequency, 15 symptoms were weighted together to a score interpreted as the intensity of radiation-induced urgency symptom. On reactivated dose plans, we contoured the small intestine, sigmoid colon and the rectum (separate from the anal-sphincter region) and we exported the dose-volume histograms for each survivor. Dose-response relationships from respective risk organ and urgency syndrome were estimated by fitting the data to the Probit, RS, LKB and gEUD models.

    RESULTS: The rectum and sigmoid colon have steep dose-response relationships for urgency syndrome for Probit, RS and LKB. The dose-response parameters for the rectum were D50: 51.3, 51.4, and 51.3 Gy, γ50 = 1.19 for all models, s was 7.0e-09 for RS and n was 9.9 × 107 for LKB. For Sigmoid colon, D50 were 51.6, 51.6, and 51.5 Gy, γ50 were 1.20, 1.25, and 1.27, s was 2.8 for RS and n was 0.079 for LKB.

    CONCLUSIONS: Primarily the dose to sigmoid colon as well as the rectum is related to urgency syndrome among gynecological cancer survivors. Separate delineation of the rectum and sigmoid colon in order to incorporate the dose-response results may aid in reduction of the incidence of the urgency syndrome.

  • 2.
    Eilertsen, M.E
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Norge.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Wallin, A.E
    Högskolan Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    The Voices of Cancer-Bereaved Siblings: A Nation-Wide Long-Term Follow-up2018In: Pediatric blood & cancer: Supplement: Abstracts from the 50th Congress of the International Society of Paediatric Oncology (SIOP) Kyoto, Japan November 16–19, 2018, 2018, Vol. 65, p. 555-556, article id PO-297Conference paper (Refereed)
    Abstract [en]

    Background/Objectives: Siblings face many challenges and the aim of this paper is to explore bereaved siblings’ memories and experiences of their brother's or sister's illness and death.

    Design/Methods: In this nationwide Swedish study 174 of 240 (73 %) bereaved siblings participated and 70 % responded to two open‐ended questions on siblings’ positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

    Results: The bereaved siblings’ responses were categorized into four different themes: endurance vs. vulnerability; family cohesion vs. family conflicts; growth vs. stagnation; professional support vs. lack of professional support. Endurance was expressed as the influence that the ill siblings’ willpower, good mood and stamina had on the healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness. Family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme, most siblings perceived support by physicians and staff at the hospital as being warm, kind and honest, while some siblings had negative experiences.

    Conclusions: Our study shows that bereaved siblings can have positive memories and experiences, even though the death of a sibling is a distressing situation. The significance of the positive buffering effect on the bereaved siblings’ own endurance, personal growth, family cohesion and social support should be noted. The knowledge acquired by listening to the voices of bereaved siblings can be valuable in showing healthcare professionals the importance of supporting siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

  • 3.
    Elmberger, Eva
    Ersta Sköndal University College, Department of Health Care Sciences.
    Att som förälder få en cancersjukdom: erfarenheter av föräldraansvar2004Doctoral thesis, comprehensive summary (Other academic)
  • 4.
    Ervik, Bente
    et al.
    University of Tromsø.
    Asplund, Kenneth
    University of Tromsø, Mittuniversitetet.
    Dealing with a troublesome body: A qualitative interview study of men’s experiences living with prostate cancer treated with endocrine therapy2012In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 16, no 2, p. 103-108Article in journal (Refereed)
    Abstract [en]

    Purpose: Endocrine therapy for prostate cancer causes substantial side effects, and previous studies have focused on the impacts on sexuality and masculinity. Little is known about how men experience bodily alterations in everyday life through the course of the prostate cancer and treatment. The aim of this study was to show how men with prostate cancer experience bodily changes and how these alterations influence daily life.

    Method: The study was conducted via qualitative interviews with a phenomenological hermeneutic approach. We interviewed ten men (aged 58-83) with prostate cancer who received endocrine therapy as the primary treatment method.

    Results: The results showed that five themes were important for the men’s experiences of their bodily alterations throughout the course of the illness: "something is ’wrong’", "when the body becomes troublesome", "to be well or to be ill", "dealing with the alterations" and "to talk about cancer and the intimate details" Initially, the shock of receiving a cancer diagnosis and the physical changes in their bodies were at the forefront of many patients’ minds. Eventually, the impact of the side effects became more evident, which caused problems in everyday life. Yet, the men were able to reflect on the impact of treatment on their everyday lives.

    Conclusion: This study showed that hormone treatment has a significant influence, both directly and indirectly, on the bodies of prostate cancer patients. The experiences of men with prostate cancer may lead to feelings of loss of identity on an existential level. © 2011 Elsevier Ltd.

  • 5.
    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.

  • 6.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Hansson, M G
    Uppsala universitet.
    Nygren, P
    Uppsala universitet.
    Nordin, K
    Uppsala universitet, Universitetet i Bergen.
    Kihlbom, U
    Uppsala universitet.
    Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials.2015In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 24, no 1, p. 133-41Article in journal (Refereed)
    Abstract [en]

    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.

  • 7.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Kihlbom, U
    Uppsala universitet.
    Nordin, K
    Uppsala universitet, Universitetet i Bergen.
    Silén, M
    Uppsala universitet.
    Nygren, P
    Uppsala universitet.
    Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials.2016In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 25, no 3, p. 516-23Article in journal (Refereed)
    Abstract [en]

    While participants in clinical oncology trials are essential for the advancement of cancer therapies, factors decisive for patient participation have been described but need further investigation, particularly in the case of phase 3 studies. The aim of this study was to investigate differences in trial knowledge and motives for participation in phase 3 clinical cancer trials in relation to gender, age, education levels and former trial experience. The results of a questionnaire returned from 88 of 96 patients (92%) were analysed using the Mann-Whitney U-test. There were small, barely relevant differences in trial knowledge among patients when stratified by gender, age or education. Participants with former trial experience were less aware about the right to withdraw. Male participants and those aged ≥65 years were significantly more motivated by a feeling of duty, or by the opinions of close ones. Men seem more motivated than women by external factors. With the awareness that elderly and single male participants might be a vulnerable group and participants with former trial experience are less likely to be sufficiently informed, the information consent process should focus more on these patients. We conclude that the informed consent process seems to work well, with good results within most subgroups.

  • 8.
    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.

  • 9.
    Hedelin, Maria
    et al.
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Ahlin, Rebecca
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Sjöberg, Fei
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Bergmark, Karin
    Göteborgs universitet.
    Stringer, Andrea
    Australien.
    Steineck, Gunnar
    Göteborgs universitet, Karolinska institutet.
    Intake of citrus fruits and vegetables and the intensity of defecation urgency syndrome among gynecological cancer survivors.2019In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 1, article id e0208115Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Despite the experimental evidence that certain dietary compounds lower the risk of radiation-induced damage to the intestine, clinical data are missing and dietary advice to irradiated patients is not evidence-based.

    MATERIALS AND METHODS: We have previously identified 28 intestinal health-related symptoms among 623 gynaecological-cancer survivors (three to fifteen years after radiotherapy) and 344 matched population-based controls. The 28 symptoms were grouped into five radiation-induced survivorship syndromes: defecation-urgency syndrome, fecal-leakage syndrome, excessive mucus discharge, excessive gas discharge and blood discharge. The grouping was based on factor scores produced by Exploratory Factor Analysis in combination with the Variable Cutoff Method. Frequency of food intake was measured by a questionnaire. We evaluated the relationship between dietary intake and the intensity of the five syndromes.

    RESULTS: With the exception of excessive mucus discharge, the intensity of all syndromes declined with increasing intake of citrus fruits. The intensity of defecation-urgency and fecal-leakage syndrome declined with combined intake of vegetables and citrus fruits. The intensity of excessive mucus discharge was increased with increasing intake of gluten.

    CONCLUSION: In this observational study, we found an association between a high intake of citrus fruits and vegetables and a lower intensity of the studied radiation-induced cancer survivorship syndromes. Our data suggest it may be worthwhile to continue to search for a role of the diet before, during and after radiotherapy to help the cancer survivor restore her or his intestinal health after irradiation.

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