Shared Decision-Making Tool for Self-Management of Home Therapies for Patients With Cystic Fibrosis

Abstract

Objective: Patients with cystic fibrosis (CF) undertake time-consuming programs of home therapies. Our objective was to develop a tool to help CF patients prioritize personal goals for some of these treatments. We describe the development and results of initial evaluation of this shared decision-making tool. Methods: Multicriteria decision-making method to develop a shared decision-making tool that integrates patient's values and perceptions of treatment impact on functionality/sense of well-being. Treatment efficacy data obtained through comprehensive review of English language literature and Cochrane reviews. Field study of 21 patients was performed to assess acceptability of the approach, understandability of the tool, and to determine whether there was sufficient patient-to-patient variability in treatment goals and patient preferences to make use of a personalized tool worthwhile. Results: Patients found the tool easy to understand and felt engaged as active participants in their care. The tool was responsive to variations in patient preferences. Priority scores were calculated (0-1.0 ± SD). Patients' most important treatment goals for improving lung health included improving breathing function (0.27 ± 0.11), improving functionality/sense of well-being (0.24 ± 0.13), preventing lung infection (0.21 ± 0.08), minimizing time to complete treatments (0.16 ± 0.12), and minimizing cost (0.11 ± 0.09). Conclusions: A shared decision-making tool that integrates patients' values and best evidence is feasible and could result in improved patient engagement in their own care.

Keywords: analytic hierarchy process; cystic fibrosis; decision support tools; shared decision making.

Figure 1

Analytic hierarchy model for patients with cystic fibrosis (CF). Analytic hierarchy structure for shared decision making about self-management of home therapies for patients with CF. The top level objective is to optimize lung health. The second level of the hierarchy illustrates the treatment goals that lead to optimizing lung health, while the third level of the hierarchy depicts treatment alternatives that differentially impact the treatment goals in the second level of the hierarchy.

Figure 2

Example of pairwise comparisons used to help patients prioritize treatment goals. In the top panel, the importance of preventing lung infection compared with improving breathing function is assessed on a 9-point scale. If a patient felt that preventing lung infection was extremely more important than improving breathing function, they would circle the number 9 at the far left of the scale. If they felt that improving breathing function was extremely more important than preventing lung infection they would circle the number 9 at the far right of the scale. If they felt these two treatment goals were equally important they would circle the number 1 in the middle of the scale. The bottom panel assesses the relative importance preventing lung infection versus improving functionality and feeling of well-being. A total of 10 pairwise comparisons are assessed to determine the relative importance of each of the five treatment goals.

Figure 3

Personalized patient report. Example of graphics in personalized patient report showing the relative importance of each treatment goal (upper panel) and a prioritized listing of home treatments and interventions (lower panel). For this patient, improving breathing function was the most important treatment goal, followed by improving functionality and feeling of well-being, and preventing lung infection. In the bottom panel, the combination of this patient’s values and preferences along with quantitative data regarding treatment efficacy, cost, and daily time required for each intervention result in a personalized ranking of treatment priorities such that adhering to inhaled antibiotics, performing airway clearance, and exercising on a regular basis are most important. If this patient found they could not adhere to every treatment and intervention on a daily basis or needed to add therapies due to early symptoms of exacerbation, inhaled hypertonic saline would have the lowest priority and personal yield, and perhaps could be a treatment that occasionally could be missed if absolutely necessary.

Figure 4

Relative importance of treatment goals. Radar chart showing the AHP-computed results for each patient’s priority score for the five different home therapies and interventions. These are the final results shared with each patient. The priority scores must sum to 100% across the five treatments for each patient. Thus, the scores reflect the relative importance of each home therapy or activity for each patient. Each colored band corresponds to one of the five home therapies. The numbers around the circle indicate each patient in the study. The mean priority score across the sample of 21 patients is shown to the right, along with the standard deviation for each treatment.