Multi-media support for informed/shared decision-making before and after a cancer diagnosis.
ABSTRACT To define and distinguish informed decision-making (IDM) from shared decision-making (SDM) and review the evidence for technology-based interventions designed to facilitate informed decisions about cancer screening and treatment.
Peer-reviewed research articles from Medline and other data sources accessible through pubmed.gov.
There is evidence that multi-media decision aids (DAs) or support systems can improve quality of decision-making in terms of enhancing knowledge relevant to decision-making, reducing decisional conflict, and customizing education and coaching of patients with cancer.
Nurses have a key role to play in designing, deploying, monitoring, and evaluating multi-media DAs in oncology practice settings. DAs are an adjunct to interpersonal education, providing information to patients in both the clinical setting and in more familiar settings without the time constraints of clinical encounters. Nurses can adopt such DAs and support systems and work with patients to ensure that information has been comprehended, that values have been considered, and that patients play an active role in the decision-making process as they desire.
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ABSTRACT: The 2009 U.S. Preventive Services Task Force (USPSTF) changed mammography guidelines to recommend routine biennial screening starting at age 50. This study describes women's awareness of, attitudes toward, and intention to comply with these new guidelines. Women ages 40-50 years old were recruited from the Boston area to participate in focus groups (k = 8; n = 77). Groups were segmented by race/ethnicity (Caucasian = 39%; African American = 35%; Latina = 26%), audio-taped, and transcribed. Thematic content analysis was used. Participants were largely unaware of the revised guidelines and suspicious that it was a cost-savings measure by insurers and/or providers. Most did not intend to comply with the change, viewing screening as obligatory. Few felt prepared to participate in shared decision-making or advocate for their preferences with respect to screening. Communication about the rationale for mammography guideline changes has left many women unconvinced about potential disadvantages or limitations of screening. Since further guideline changes are likely to occur with advances in technology and science, it is important to help women become informed consumers of health information and active participants in shared decision-making with providers. Additional research is needed to determine the impact of the USPSTF change on women's screening behaviors and on breast cancer outcomes.BMC Public Health 12/2013; 13(1):1169. DOI:10.1186/1471-2458-13-1169 · 2.32 Impact Factor
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ABSTRACT: The purpose of this trial was to evaluate the effect of a Web-based, self-report assessment and educational intervention on symptom distress during cancer therapy. A total of 752 ambulatory adult participants were randomly assigned to symptom/quality-of-life (SxQOL) screening at four time points (control) versus screening, targeted education, communication coaching, and the opportunity to track/graph SxQOL over time (intervention). A summary of the participant-reported data was delivered to clinicians at each time point in both groups. All participants used the assessment before a new therapeutic regimen, at 3 to 6 weeks and 6 to 8 weeks later, completing the final assessment at the end of therapy. Change in Symptom Distress Scale-15 (SDS-15) score from pretreatment to end of study was compared using analysis of covariance and regression analysis adjusting for selected variables. We detected a significant difference between study groups in mean SDS-15 score change from baseline to end of study: 1.27 (standard deviation [SD], 6.7) in the control group (higher distress) versus -0.04 (SD, 5.8) in the intervention group (lower distress). SDS-15 score was reduced by an estimated 1.21 (95% CI, 0.23 to 2.20; P = .02) in the intervention group. Baseline SDS-15 score (P < .001) and clinical service (P = .01) were predictive. Multivariable analyses suggested an interaction between age and study group (P = .06); in subset analysis, the benefit of intervention was strongest in those age > 50 years (P = .002). Web-based self-care support and communication coaching added to SxQOL screening reduced symptom distress in a multicenter sample of participants with various diagnoses during and after active cancer treatment. Participants age > 50 years, in particular, may have benefited from the intervention.Journal of Clinical Oncology 12/2013; 32(3). DOI:10.1200/JCO.2013.48.6662 · 18.43 Impact Factor
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ABSTRACT: Objective This article describes the rigorous development process and initial feedback of the PRE-ACT (Preparatory Education About Clinical Trials) web-based- intervention designed to improve preparation for decision making in cancer clinical trials. Methods The multi-step process included stakeholder input, formative research, user testing and feedback. Diverse teams (researchers, advocates and developers) participated including content refinement, identification of actors, and development of video scripts. Patient feedback was provided in the final production period and through a vanguard group (N = 100) from the randomized trial. Results Patients/advocates confirmed barriers to cancer clinical trial participation, including lack of awareness and knowledge, fear of side effects, logistical concerns, and mistrust. Patients indicated they liked the tool's user-friendly nature, the organized and comprehensive presentation of the subject matter, and the clarity of the videos. Conclusion The development process serves as an example of operationalizing best practice approaches and highlights the value of a multi-disciplinary team to develop a theory-based, sophisticated tool that patients found useful in their decision making process. Practice Implications. Best practice approaches can be addressed and are important to ensure evidence-based tools that are of value to patients and supports the usefulness of a process map in the development of e-health tools.Patient Education and Counseling 07/2014; 96(1). DOI:10.1016/j.pec.2014.04.009 · 2.60 Impact Factor