The focus of research is to benefit society. The possibility of any given trial introducing a treatment that makes a real difference in the lives of the individuals who choose to participate is a wonderful and critical component of that benefit.
Because the development of new treatments hinges on well-conducted research that may begin "on the bench" but must, necessarily, move to the "bedside," finding and enrolling patient volunteers is a crucial element in advancing cancer care.
Recruiting for clinical trials can be a complex and challenging process. Helping our patients consider and address the questions and issues that arise around trial participation is a key element in assisting and supporting them as they come to a thoughtful and measured choice about their own potential participation.
Research (and clinical) nurses may be well aware of the kinds of issues noted here, however, many patients faced with the option of a trial find the choice a difficult one to make, in large part, because they aren't even sure what types of questions they "should" be asking and feel at-a-loss for guidance in thinking about and weighing their decisions.
We can help them by directly raising and addressing potential questions, from the most basic to the most complex:
- What is the purpose of the trial?
- What does the treatment protocol entail?
- Types and schedule of tests and treatments
- Hospitalizations anticipated
- Length of the trial
- Long-term follow-up
- How will trial-related expenses be covered?
- How will patient safety be monitored?
- Will the possible benefit from the trial outweigh the potential risk?
- How do the possible risks, side effects, and benefits compare with other treatment options?
While some patients may find the choice simple, particularly if they have late-stage disease and no remaining "standard of care" options, very often, the patients who opt for a clinical trial have grappled with a myriad of thoughts, fears, and concerns and had the opportunity to fully explore all of them with a professional before making the choice.
Those who do not participate either have simply never been told of the option in the first place, or often have been told about a trial option, given an overview of the information and a written package to "take home" and been left alone to consider it on their own. Patients who don't feel comfortable communicating with the research nurse or team may express concerns about unknown side effects and results, the possibility of greater time commitment, and fears of exploitation. Addressing these issues realistically and sensitively can remove barriers to participation.
Understanding what motivates a patient to participate in a trial can help to ensure greater outreach. Some want access to the newest research, medications, and treatments, others are interested in access to leading healthcare teams, some are operating from an altruistic perspective, some are simply hoping for that "miracle." For most, it will be some combination of reasons that brings them to trial participation. Their quality of life (on and beyond the trial), regardless of outcome, will be significantly affected by the attention paid to their full understanding of what they are choosing and why.
Trial recruiters can help to assure that as many eligible patients as possible opt for a trial and that those who do opt for a trial feel comfortable and satisfied with their choice, by communicating with compassion and clarity as they address both the spoken and unspoken concerns that patients and families bring to every discussion.
I wonder how trial recruitment is approached in your setting?
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