Identifying Adolescent and Young Adults' Preferences for Oncology Symptom Management Clinical Trial Participation.

Abstract

Background: Most studies to date exploring facilitators and barriers to adolescent and young adults' (AYAs') participation in clinical trials have been focused on external factors to AYAs' participation or recruitment strategies.

Objective: The purpose of this mixed-methods study was to determine AYA cancer survivors' preferences for oncology symptom management clinical trial participation.

Methods: Semistructured interviews and conjoint analysis were conducted to clarify potential attributes (eg, characteristics) and levels (eg, value of the characteristic) that may be important to AYA cancer survivors when considering clinical trial participation (n = 19). The final list of attributes and levels was administered within a choice-based conjoint analysis survey (n = 52). The utility score for each level was analyzed using hierarchical Bayes estimation, and the feature importance for each attribute was quantified.

Results: The type of new treatment (22.9%) and perceived importance of study topic (19.5%) were the most important attributes identified by participants. The levels with the highest utility scores within each attribute included prescription medicine treatment with mild side effects, electronic surveys, under-30-minute study visits, no follow-up visits, 4-week treatment period, and once-a-week treatment frequency.

Conclusion: The data support that study designs with low participant burden, interventions with few side effects, and the involvement of AYAs in determining the priority of the research topic are appealing to AYAs when considering participation in symptom management trials.

Implications for practice: AYA participation in clinical trials is necessary to develop new symptom management modalities. Clinicians may use the results to introduce clinical trials containing trial characteristics that appeal to AYA cancer survivors.