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.

Assessing Shared Decision-Making in Cystic Fibrosis Care Using collaboRATE: A Cross-Sectional Study of 159 Programs

“…In CF care, patients with more health burden may be in the midst of acute health crises that spur changes to their existing care plans. Shared decision-making is a powerful process for ensuring that these often complex plans continue to fit the resources and constraints each individual and family brings to self-management, which is undertaken primarily outside the health care context ( 18 , 19 ). A clinic coordinator or other team members could be leveraged as an additional resource for patients and families, to better facilitate SDM.…”

Automated Tool for Health Utility Assessments: The Gambler II

“…Individual patient utilities can be used to inform shared decision making through the use of personalized decision analyses for a variety of clinical disorders. 3,4,[58][59][60] Most recently, we examined the feasibility of performing real-time utility assessments and personalized decision analyses to facilitate patient visits with their cardiologists to discuss anticoagulation options to prevent atrial fibrillation-related stroke. 59 One could envision a future in which many preference sensitive decisions are facilitated by such an approach.…”

“…They can also support decision making at the individual patient level. 3,4 The theoretical underpinnings of utility assessment derive from von Neumann-Morgenstern utility theory. 2 The resulting health utility weights range from zero to one: one representing full health and zero representing the worst outcome, generally death.…”

A new era in cystic fibrosis care: always changing and adapting

“…It is a key component of person-centered healthcare and should become the standard of care [76 ▪ ]. It has been shown that involving PwCF and their families in decision-making is associated with positive perceptions about quality of care and helped them feel like they were contributing to the care [77]. Shared decision-making leads to a partnership in developing personalized care plans based on individual medical information and standards of care while incorporating the individual's and family's preferences and goals.…”