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Cancer patient decision making related to clinical trial participation: an integrative review with implications for
Jennifer A H Bell1, Lynda G Balneaves
1Psychosocial Oncology and Palliative Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada, Jennifer.Bell2@uhn.ca.
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.
Insights
Understanding factors influencing cancer patient decisions on clinical trial participation is crucial. Personal, social, and system factors impact enrollment, highlighting the need for further research to improve participation rates.
Area of Science:
- Oncology
- Clinical Trials
- Patient Decision Making
Background:
- Oncology clinical trials are vital for evaluating new cancer treatments.
- Low patient enrollment in clinical trials (3-5%) hinders research progress and patient care improvement.
- Understanding patient decision-making is key to increasing clinical trial participation.
Purpose of the Study:
- To review and summarize factors influencing cancer patients' decisions regarding clinical trial participation.
- To identify personal, social, and system-level influences on enrollment.
- To highlight gaps in understanding how these factors affect patient autonomy.
Main Methods:
- An integrative literature review was conducted.
- Databases searched included PubMed, CINAHL, and EMBASE (1995-2012).
- Included data-based, English-language articles on adult cancer patients.
Main Results:
- Fifty-one articles were reviewed, identifying personal, social, and system factors.
- Key subthemes included patient trust, physician influence, and social inequalities.
- The interaction of these factors and their impact on relational autonomy require further investigation.
Conclusions:
- Further research is needed to understand sociopolitical barriers and facilitators.
- Enhancing ethical practices in clinical trial enrollment is essential.
- Interventions should focus on patient education and support to improve decision-making and participation.
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