Patient and family member perspectives on searching for cancer clinical trials: A qualitative interview study

Abstract

Objective Clinical trials are vital in the context of ovarian cancer and may offer further treatment options during disease recurrence, yet enrollment remains low. Understanding patient and family member experiences with identifying trials can inform engagement and education efforts. Methods Interviews were conducted with 33 patients who had experience with clinical trial conversations and 39 nominated family members. Thematic analysis examined experiences and generated findings for clinical practice. Results Trial conversations with providers at diagnosis were uncommon and often overwhelming. Most participants delayed engagement until later in the disease course. With hindsight, though, some wished they considered trials earlier. Difficulty identifying appropriate trials led some to defer searching to providers, but then they worried about missed opportunities. Most family members felt unqualified to search. Conclusion Trial conversations during clinical encounters should start early and include specifying search responsibilities of providers, patients, and family. Patients and family members can be engaged in searches but need guidance. Practice Implications Trials should be discussed throughout the disease course, even if patients are not ready to participate or are not making a treatment decision. Education should focus on identifying trials that meet search criteria. Transparency regarding each individual's role in identifying trials is critical.

<p>Deciding to Enrol in a Cancer Trial: A Systematic Review of Qualitative Studies</p>

“… 23 , 25 , 28 , 30 , 43 , 52 , 63 The use of the term “last resort” was used by many patients offered Phase III clinical trials. 32 , 35 , 42 , 50 , 63 As validated in Table 3 , the majority of participants suggested that treatment options presented were considered with reference to the goal of living longer and hopefully abating cancer. 43 , 44 , 46 , 60 This goal seemed to influence the way in which the options were comprehended, evaluated and experienced within decision making.…”

“… 39 “I thought that clinical trials were only for a last resort when you have nothing to lose”. 42 “I can lay down and die, or I can make myself available to the therapies that are available to me”. 56 “I feel I have no choice.…”

“…Participants accepted physician’s recommendations to enrol if they had a trusting relationship. Ramers-Verhoeven et al (2014) 42 Netherlands To identify cancer patients attitudes towards clinical trial participation. Interviews Content Analysis 120 participants (48 cancer patients; 72 caregivers) Multiple Cancer Types Patients expressed trial misunderstandings and described feeling that conversations with physicians about clinical trials were one-sided, dismissed or rushed.…”

“Ultimately, mom has the call”: Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy

“…Participant characteristics have been reported earlier . Briefly, a total of 72 participants (33 patients with ovarian cancer and 39 FMs) were interviewed across both study sites.…”

“…The data for this study were collected from January 2012 through December 2014. Specific procedures surrounding methods and recruitment have been previously reported . We used a purposeful sampling approach .…”