Clinical trial participation is a common topic for mesothelioma patients and their caregivers.
Treatment options for mesothelioma are increasing. This is a direct result of the number of clinical trials available to patients. Yet, little is known about patients’ and relatives’ feelings about trial participation.
A new study provides insight into people’s experiences of clinical trial participation. They also report what factors influence decision-making.
Scientists interviewed twelve people, comprising five mesothelioma patients and seven relatives. They identified four themes related to the experience of mesothelioma.
First, is the physicality of the disease. Second, the patient’s quality of life. Third, uncertainty and risk are associated with mesothelioma. And fourth, planning for an unpredictable future. A further theme included attitudes on clinical trial participation.
Physicality and Physical Health of Mesothelioma Patients
Patients and caregivers are both concerned about the physical aspects of mesothelioma. Being breathless during activities gave strong emotions such as frustration and anger.
A few patients recognized that their physical strength was deteriorating. This often created sadness and regret in at the new reality of their illness.
Patients and their relatives were aware of the physical health side effects. This influenced the experience of clinical trial participation. Many people expressed relief at not being randomized to receive the trial treatment.
Quality of Life for Mesothelioma Patients
Quality of life was important to patients and relatives. This was especially true in the limited life expectancy context. And, it was an important factor in the decision on clinical trial participation.
Many reviewed the time they had left to live against how they felt during that time. There was a common awareness that the patient’s situation was likely to change in the future.
Anna Bibby from the University of Bristol Medical School said, “For most, living longer was not desirable unless accompanied by good quality of life.”
Uncertainty and Risk
Mesothelioma patients are knowledgeable. They actively seek information from many sources to assist indecision-making. They prefer factual, numerical data. And they want the information to be presented as unequivocal or absolute.
Most dislike uncertainty and express frustration if the information is not specific. A patient’s desire for certainty has implications on clinical trial participation.
Planning For an Unpredictable Future
Mesothelioma patients and their families seek certainty as a coping strategy. It helps them to manage the uncertainty of their future. Patients are aware that they are likely to die as a result of their illness. But the inability to predict their personal experience causes worry.
Caregivers are concerned for their loved one’s future. Despite this, both patients and relatives kept a positive outlook.
Attitudes to Research and Factors Influencing Participation
Mesothelioma patients and their families were generally positive about clinical research. Most recognized that clinical trials were important to develop new knowledge about mesothelioma. Research generates new treatment options.
Most participated in research for altruistic reasons. Research provided hope for helping other patients in the future. Some people were aware that trial participation could benefit them. But this was rarely their primary motivation.
Other people said it was a desire to repay the care they had received from their doctors. Patients were well informed about the science supporting the clinical trial research. Relatives were generally supportive of their family member’s decision to take part in the research.
Yet, families were often concerned about the downsides. Some were reluctant for their family members to take part in the trial. Clinical trial participants often remained committed to their decision, even after adverse events. But their relatives often felt anxiety.
Patients, Caregivers, and Clinical Trial Participation
A new study provided insight into the experiences of those living with mesothelioma. Participants valued physical strength. They were careful not to jeopardize it with potential medication side effects.
Next, their quality of life was important and was often prioritized over survival. Many participants found the uncertainty of their disease challenging. The desire for certainty affected their risk perception. This is an important factor in decision-making.
Relatives often advocated on behalf of patients. They were more worried about research participation due to concern about potential risks. Clinical trials multiply as more effective therapies are approved for use in mesothelioma. Patient physicality, quality of life, and uncertainty are important.
This new data argue that relatives were less enthusiastic about research. Their reluctance may reflect the higher levels of anxiety experienced by caregivers. Or, it may be an example of relatives advocating on behalf of stoical patients.
Either way, it emphasizes the different experiences and concerns of relatives compared with patients. This is an important factor in clinical trial decision-making.
Bibby, A.C., Morley, A.J., Keenan, E., Maskell, N.A., Gooberman-Hill, R., The priorities of people withmesothelioma and their carers: A qualitative interview study of trial participation and treatment decisions,European Journal of Oncology Nursing (2022), doi: https://doi.org/10.1016/j.ejon.2022.102111.