A stakeholder-driven approach to improve the informed consent process for palliative chemotherapy |
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| Affiliation: | 1. McGraw Patterson Center for Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA;2. Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA;3. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA;4. Susan F. Smith Center for Women''s Cancers, Dana-Farber Cancer Institute, Boston, MA, USA;5. Colon Cancer Alliance, Washington, DC, USA;6. Department of Nursing, Dana-Farber Cancer Institute, Boston, MA, USA;7. Department of Psychological and Brain Sciences, University of Delaware, Newark, DE, USA;8. Division of Hematology and Oncology, University Hospitals Case Medical Center, Case Comprehensive Cancer Center, Case Western Reserve University, Cleveland, OH, USA;1. Department of Psychology, Washington State University, Pullman, WA, USA;2. College of Nursing, Washington State University Vancouver, Vancouver, WA, USA;1. Massachusetts General Hospital, USA;2. Johns Hopkins University School of Medicine, Division of General Internal Medicine, Johns Hopkins Bayview Medical Center, USA;1. Department of Psychology, Iowa State University, Ames, USA;2. War Related Illness and Injury Study Center (WRIISC), Veterans Affairs New Jersey Healthcare System, East Orange, USA;3. Department of Educational and Counseling Psychology, University at Albany, Albany, USA;4. Department of Psychology, The George Washington University, Washington, D.C., USA;5. War Related and Injury Study Center, US Department of Veterans Affairs, Washington, D.C., USA;6. Silberman School of Social Work, Hunter College, CUNY, NY, USA |
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| Abstract: | ObjectivePatients often anticipate cure from palliative chemotherapy. Better resources are needed to convey its risks and benefits. We describe the stakeholder-driven development and acceptability testing of a prototype video and companion booklet supporting informed consent (IC) for a common palliative chemotherapy regimen.MethodsOur multidisciplinary team (researchers, advocates, clinicians) employed a multistep process of content development, production, critical evaluation, and iterative revisions. Patient/clinician stakeholders were engaged throughout using stakeholder advisory panels, featuring their voices within the intervention, conducting surveys and qualitative interviews. A national panel of 57 patient advocates, and 25 oncologists from nine US practices critiqued the intervention and rated its clarity, accuracy, balance, tone, and utility. Participants also reported satisfaction with existing chemotherapy IC materials.ResultsFew oncologists (5/25, 20%) or advocates (10/22, 45%) were satisfied with existing IC materials. In contrast, most rated our intervention highly, with 89–96% agreeing it would be useful and promote informed decisions. Patient voices were considered a key strength. Every oncologist indicated they would use the intervention regularly.ConclusionOur intervention was acceptable to advocates and oncologists. A randomized trial is evaluating its impact on the chemotherapy IC process.Practice implicationsStakeholder-driven methods can be valuable for developing patient educational interventions. |
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| Keywords: | Cancer chemotherapy Informed consent Palliative care Prognosis communication Video intervention Patient-centered communication |
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