Advances in cancer treatment during the past few decades have led to increased numbers of cancer survivors and increased length of life after cancer has been diagnosed. Since many cancer survivors live with psychological distress related to their cancer and their treatment, investigators have conducted quantitative studies involving cancer survivors to gain better knowledge about the quality of life of cancer survivors. However, such studies, usually consisting of patient-reported questionnaires might cause harms to such survivors, as the questions might be intrusive and reactivate distressing memories. Accordingly, Dunberger and associates performed a study involving cancer survivors to determine their perspectives regarding participation in long-term follow-up studies. These authors report on the results of 1068 cancer survivors who completed a questionnaire to assess their perception of being a research subject. Their results show that 95% believed that it is valuable to conduct such studies, 54% felt they had been positively affected by their study participation, only 16% believed that their participation in a follow-up study reminded them of events that they had forgotten, and less then 1% felt the need to contact a social worker or a psychologist related to their participation in the study. The authors overall conclusion was that cancer survivors value long-term follow-up studies and are positively affected by their participation.
As the authors recruited women patients exclusively from Sweden, they point out that their results might not be generalizable to other populations and cultures outside of Sweden. Indeed, cancer survivors’ perception of participation in long-term follow-up clinical studies might depend on many factors mainly. These would include a) the country; b) the level of literacy of the cancer survivors; c) the socioeconomic level; and d) the extent of communications the survivors have had with their doctors.
Regarding country, it is useful to point out that for developed countries, the number of cancer survivors, as well as the length of life span will probably be greater for those living in developed countries compared with those from developing countries. Hence, there will be fewer number of cancer survivors available to enroll in long term follow-up studies. Also, the few cancer survivors available for long term follow-up study might have more hesitation to enroll in such studies. Indeed, some would like to conceal the fact that they are cancer patients due to the social stigma that might be greater in the developing world. It is very unlikely in the developing world to have cancer survivors who would talk frankly about their illness and previous suffering. As an example of the concern with social stigma, families of young children who are cancer survivors (Wilms tumor, acute leukemia, etc.) usually try to hide from their children that they had had cancer and many of the children live without ever even knowing that they are actual cancer survivors. When recurrence does occur in adulthood, such cancer survivors are astonished and surprised that they were not informed by their families about their actual cancer.
The level of literacy might be a factor regarding participation in follow-up studies, as those patients with high levels of education might be more ready to participate, while patients with illiteracy might be reluctant. The perception of those who are well educated is that participation is important for future patients to get better treatment. They also happy to appear in TV, etc to talk about their ordeal which is now a history. In contrast, those who are illiterate might have suspicions regarding discussing their illness.
Regarding socioeconomic level, asking poorer patients to participate in long-term follow-up studies might create a coercive situation. Essentially, poorer patients who had received expensive cancer treatments might think that if they refuse to participate in long-term follow-up studies they will not receive any future cancer treatments if their cancer returns. Dispelling such false beliefs during the informed consent process would prevent such a coercive situation.
Lastly, the level of contact that cancer survivors has with their doctors even after they are cured or are in remission might affect participation in follow-up studies. For example, those with continuous contact with their physicians (e.g., through birthday greetings, invitation to join hospital social activities, etc. ) might give survivors a strong stimulus for active participation in long term follow-up studies. On the other hand, those without continuous communications with their doctors might lack a good attitude toward participation in long term study.
Consideration of the above mentioned factors makes it imperative that studies be performed involving cancer survivors in the developing world to understand their perceptions regarding participating in long-term follow-up studies.
Dunberger G, Thulin H, Waldenström A, Lind H, Henningsohn L, Åvall-Lundqvist E, Steineck G, Kreicbergs U, Cancer survivors’ perception of participation in a long-term follow-up study, J Med Ethics doi:10.1136/medethics-2012-100583.