By Dr. Gerold Bepler,
H. Lee Moffitt Cancer Center & Research Institute
Clinical trials hold great promise for lung cancer treatment and cure. Yet lung cancer patients are less likely than other cancer patients to participate in a clinical trial.We found that this difference may, at least in part, be explained by misperceptions about clinical trials held by lung cancer patients. For patients facing a life-threatening disease, the concept of participating in a clinical research program as their medical treatment can be at once confusing and frightening. It is not surprising then, that one of the most important decisions that many cancer patients face is whether or not to enroll in a clinical trial as a treatment choice.
In the area of thoracic cancers, improvements in life expectancy and cure rates have seen small progress in the last 15 years. Additionally, lung cancer patients are underrepresented in clinical trials, particularly compared to colorectal cancer and leukemia. Lung cancers comprise the highest portion of deaths from cancer in the U.S., yet there are fewer lung cancer trials than trials for patients with other types of cancer. The inequity of available trials for lung cancer patients compared to other cancer types may contribute to patient perceptions that clinical trials are less viable options in lung cancer treatment. Lung cancer patients are less likely to participate in support groups, and to seek psychosocial support services than patients with other types of cancer. The combined effect of fewer trials and reduced interaction with other patients may contribute to the lack of knowledge,and ultimately participation in trials among lung cancer patients.
Personalized educational information has shown success with other types of cancers in improving quality of life, reducing patient distress, and increasing accrual to clinical trials.A personalized approach to the development of educational materials regarding clini- cal trials may promote informed deci- sion-making among patients about clinical trials.The purpose of this project was to develop personalized information to educate newly diagnosed lung cancer patients about clinical trials. The essays were created through qualitative interviews and photographic sessions conducted with patients, family members, caregivers, and health care professionals. The ultimate goal of this work is not to persuade patients to participate in a particular trial, but to address the general lack of information and misperceptions about trials among lung cancer patients.
Ultimately, these images and essays are meant to offer a message of hope. The featured stories are the stories of real people describing their experiences with a lung cancer diagnosis and clinical trials. For some, the treatment has been life-prolonging, for others, their health has not improved significantly. However, each of these photo-essays offers lung cancer patients the opportunity to see that men and women like themselves have been in a similar situation. The despair, isolation, shock,and fear of having a lung cancer diagnosis can evolve into hope. Readers can witness the transformation of patients feeling like a "guinea pig" in an experiment, to a "pioneer" for their own health and the future of medical science.
