Date of Degree
Philip van der Wees, Ph.D., PT
Shared Decision-Making, Patient Reported Outcomes, Radiation Oncology, Medical Management
Background. Chronic diseases, such as lung cancer, require a provider-patient relationship developed over time. This relationship fosters shared decision-making (SDM), a collaborative, dynamic information exchange and analysis between provider and patient regarding treatment and desired outcomes. Established benefits to SDM include an improved quality of life and decreased anxiety and depression. Despite established benefits, recent research suggests radiation oncologists are not engaging in SDM. A decision-aid tool utilizing patient reported outcome measures may increase SDM between radiation oncologists and patients with lung cancer. Patient-reported outcome measures, wherein the patient provides direct assessment of their health and quality of life, can inform and initiate SDM. This study investigated the design and implementation of a collaborative decision-aid tool for patients with lung cancer at a Midwestern cancer center as informed by stakeholders, practice considerations, and the evidence base.
Objectives. The primary objective was to develop a collaborative decision-aid tool, using patient-reported outcome measures, that can be implemented in an academic radiation oncology clinic. Secondary objectives then assessed the tool’s impact through surrogates of shared decision making (add-on oncology visits, concomitant medication prescriptions), medical management (adverse events, radiation therapy compliance, chemotherapy compliance) and emergent care and its costs (emergency room visits and estimated costs, inpatient admissions and estimated costs). The hypothesized result was a decision aid designed to increase collaborative communication between radiation oncologists and patients will result in improved shared decision making, yielding better medical management and patient outcomes and reducing emergent care costs. Lastly, an implementation roadmap provided information on experienced barriers, facilitators, and considerations for performance objectives.
Materials and Methods. A sequential exploratory mixed methods design was employed. The qualitative strand explored how stakeholders, practice considerations, and the evidence base informed the design and installation of an ideal collaborative decision-aid tool. Semi-structured interviews were completed with both patients who completed radiation therapy for lung cancer and their radiation oncologist. Interviews were coded and evaluated for themes. Interviews were transcribed verbatim, coded using Atlas.ti software, and analyzed thematically and visually. The results of this analysis, combined with information from the literature base and implementation stakeholders, was used to inform design of the collaborative decision-aid tool that was installed employing the principles of clinical implementation using the plan-do-study-act (PDSA) implementation cycle model. Simple descriptive analysis was performed on objective measures. Mixed analysis included data display, comparison, and integration.
Results. Six patients and six radiation oncologists participated in the semi-structured interviews. Interviews provided insights that patients did not know what to ask of their radiation oncologists, prioritized survival over reduced side effects, and minimized complaints to their radiation oncologists, often to their detriment. Interviews yielded feedback on commonly used patient reported outcome instruments, identifying context as important and the recall timeframe as difficult. Commonly patient-identified adverse events of concern were fatigue, dyspnea, vomiting, and dysphagia. Radiation oncologists identified a patient’s personality as critical to care and translating responses and symptoms to adverse events of treatment. For this reason, numeric scales were not endorsed as they were seen as ambiguous and lacking context. With this feedback, a collaborative decision-aid tool was designed that focused on adverse events of interest (nausea, vomiting, fatigue, dyspnea, chest pain, weight loss). Rather than numeric scales, responses provided granular context that clued physicians to medical needs (i.e., “I cannot walk to my appointment,” “It hurts when I eat,” “I am not vomiting but I’m not hungry”). This tool was implemented as a quality initiative project for pragmatic impact. Four patients were assigned the tool during the first PDSA implementation cycle. The first follow-up evaluation meeting identified four critical outcomes for the next implementation cycle: how to identify which consults require the decision-aid, how the need for the decision-aid on doctor visits is consistently provided to scheduling, how unplanned visits/special complaints are addressed with regard to the decision-aid, and what actions are necessary if the patient leaves prior to the decision-aid being reviewed. Mixed analysis provided direction for next steps in implementation, tool design, and quantitative data measures. The primary concern, increase in time expended per clinic visit, was not supported by the limited data available from the first implementation cycle.
Conclusion. Implementation of collaborative decision-aid within the radiation oncology clinic is feasible without disruption of the on-treatment visit time. Radiation oncologists can use the tool as a guide for routine on-treatment visit review, so that it is harmonized with their routine practice. Care should be taken during implementation to ensure all stakeholders are included in the tool’s implementation and that desired outcomes are appropriately identified to truly capture what impact the tool has, if any, on clinical outcomes. Focusing on the patient with the goal of improving their experience will guide collaborative decision-aid tool adaptation, implementation, and uptake.
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Bodeker, Kellie, "The Contribution of Patient Reported Outcome Measures to Shared Decision-Making in Radiation Oncology at a Midwestern Comprehensive Cancer Center" (2021). Doctor of Philosophy in Translational Health Sciences Dissertations. Paper 10.