J Med Ethics 39:41-45 doi:10.1136/medethics-2012-100583
  • Research ethics

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

  1. Ulrika Kreicbergs5,6
  1. 1Clinical Cancer Epidemiology, Karolinska Institutet, Stockholm, Sweden
  2. 2Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, Gothenburg, Sweden
  3. 3Department of Clinical Science Intervention and Technology, Karolinska Institutet, Stockholm, Sweden
  4. 4Department of Gynaecological Oncology, Karolinska University Hospital, Stockholm, Sweden
  5. 5Department of Women and Child's Health, Karolinska Institutet, Stockholm, Sweden
  6. 6Sophiahemmet University College, Stockholm, Sweden
  1. Correspondence to Dr Gail Dunberger, Clinical Cancer Epidemiology, Karolinska Institutet, Karolinska University Hospital, Z5U1, Stockholm 171 76, Sweden; gail.dunberger{at}
  • Received 17 February 2012
  • Accepted 21 July 2012
  • Published Online First 9 October 2012


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.