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A stakeholder-driven approach to improve the informed consent process for palliative chemotherapy
Andrea C Enzinger1, Jennifer K Wind2, Elizabeth Frank3
1McGraw Patterson Center for Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA; Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA.
Patient Education and Counseling
|April 1, 2017
Summary
Developing patient educational materials for palliative chemotherapy informed consent (IC) is crucial. A new video and booklet, co-created with patients and clinicians, were highly rated and found acceptable for improving the chemotherapy IC process.
Area of Science:
- Oncology
- Patient Education
- Informed Consent
Background:
- Patients often misunderstand the goals of palliative chemotherapy, expecting cure rather than symptom management.
- Existing informed consent (IC) materials for palliative chemotherapy lack clarity and patient-centeredness.
- Improved resources are needed to effectively communicate the risks and benefits of palliative chemotherapy.
Purpose of the Study:
- To develop and assess the acceptability of a prototype video and booklet designed to support informed consent for palliative chemotherapy.
- To involve patients and clinicians in the creation of educational materials for chemotherapy informed consent.
Main Methods:
- A multidisciplinary team developed a prototype intervention (video and booklet) using a multistep process.
- Patient and clinician stakeholders were engaged through advisory panels, surveys, and interviews.
- A national panel of 57 patient advocates and 25 oncologists evaluated the intervention's clarity, accuracy, balance, tone, and utility.
Main Results:
- Low satisfaction was reported with existing chemotherapy IC materials (20% oncologists, 45% advocates).
- The developed intervention received high ratings, with 89-96% agreeing it would be useful and promote informed decisions.
- Patient voices were highlighted as a key strength, and all oncologists expressed intent to use the intervention regularly.
Conclusions:
- The stakeholder-developed intervention for palliative chemotherapy informed consent was found acceptable by both patient advocates and oncologists.
- This study highlights the value of stakeholder-driven approaches in developing effective patient educational interventions.
- A randomized trial is underway to evaluate the intervention's impact on the chemotherapy informed consent process.