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Cancer survivors' perception of participation in a long-term follow-up study.

Dunberger, Gail (author)
Clinical Cancer Epidemiology, Karolinska Institutet, Stockholm, Sweden
Thulin, Helena (author)
Karolinska Institutet,Karolinska institutet
Waldenström, Ann-Charlotte, 1950 (author)
Gothenburg University,Göteborgs universitet,Institutionen för kliniska vetenskaper, Avdelningen för onkologi,Institute of Clinical Sciences, Department of Oncology,Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, Gothenburg, Sweden
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Lind, Helena (author)
Karolinska Institutet,Karolinska institutet
Henningsohn, Lars (author)
Karolinska Institutet,Karolinska institutet
Åvall-Lundqvist, Elisabeth (author)
Karolinska Institutet,Karolinska institutet
Steineck, Gunnar, 1952 (author)
Karolinska Institutet,Gothenburg University,Göteborgs universitet,Institutionen för kliniska vetenskaper, Avdelningen för onkologi,Institute of Clinical Sciences, Department of Oncology,Clinical Cancer Epidemiology, Karolinska Institutet, Stockholm, Sweden / Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, Gothenburg, Sweden,Karolinska institutet; Göteborgs universitet
Kreicbergs, Ulrika (author)
Karolinska Institutet,Sophiahemmet Högskola,Department of Women and Child's Health, Karolinska Institutet, Stockholm, Sweden / Sophiahemmet University College, Stockholm, Sweden,Karolinska institutet; Sophiahemmet högskola
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 (creator_code:org_t)
2012-10-09
2013
English.
In: Journal of medical ethics. - : BMJ. - 1473-4257 .- 0306-6800. ; 39:1, s. 41-5
  • Journal article (peer-reviewed)
Abstract Subject headings
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  • Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also included questions evaluating the participants' experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Urologi och njurmedicin (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Urology and Nephrology (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Cancer och onkologi (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Cancer and Oncology (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Public Health, Global Health, Social Medicine and Epidemiology (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP  -- Annan medicin och hälsovetenskap -- Övrig annan medicin och hälsovetenskap (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Other Medical and Health Sciences -- Other Medical and Health Sciences not elsewhere specified (hsv//eng)

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