Cancer patient decision making related to clinical trial participation: an integrative review with implications for patients' relational autonomy

Support Care Cancer. 2015 Apr;23(4):1169-96. doi: 10.1007/s00520-014-2581-9. Epub 2015 Jan 17.

Abstract

Purpose: Oncology clinical trials are necessary for the improvement of patient care as they have the ability to confirm the efficacy and safety of novel cancer treatments and in so doing, contribute to a solid evidence base on which practitioners and patients can make informed treatment decisions. However, only 3-5 % of adult cancer patients enroll in clinical trials. Lack of participation compromises the success of clinical trials and squanders an opportunity for improving patient outcomes. This literature review summarizes the factors and contexts that influence cancer patient decision making related to clinical trial participation.

Methods: An integrative review was undertaken within PubMed, CINAHL, and EMBASE databases for articles written between 1995 and 2012 and archived under relevant keywords. Articles selected were data-based, written in English, and limited to adult cancer patients.

Results: In the 51 articles reviewed, three main types of factors were identified that influence cancer patients' decision making about participation in clinical trials: personal, social, and system factors. Subthemes included patients' trust in their physician and the research process, undue influence within the patient-physician relationship, and systemic social inequalities. How these factors interact and influence patients' decision-making process and relational autonomy, however, is insufficiently understood.

Conclusions: Future research is needed to further elucidate the sociopolitical barriers and facilitators of clinical trial participation and to enhance ethical practice within clinical trial enrolment. This research will inform targeted education and support interventions to foster patients' relational autonomy in the decision-making process and potentially improve clinical trial participation rates.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Adult
  • Clinical Trials, Phase I as Topic / methods
  • Clinical Trials, Phase I as Topic / psychology*
  • Decision Making*
  • Humans
  • Medical Oncology / methods
  • Neoplasms / psychology*
  • Neoplasms / therapy
  • Patient Education as Topic
  • Patient Participation / methods
  • Patient Participation / psychology*
  • Physician-Patient Relations
  • Trust*