Patient Roadmaps for Chronic Illness: Introducing a New Approach for Fostering Patient-Centered Care.

Background. Too frequently, patients with chronic illnesses are surprised by disease-related changes and are unprepared to make decisions based on their values. Many patients are not activated and do not see a role for themselves in decision making, which is a key barrier to shared decision making and patient-centered care. Patient decision aids can educate and activate patients at the time of key decisions, and yet, for patients diagnosed with chronic illness, it would be advantageous to activate patients in advance of critical decisions. In this article, we describe and formalize the concept of the Patient Roadmap, a novel approach for promoting patient-centered care that aims to activate patients earlier in the care trajectory and provide them with anticipatory guidance. Methods. We first identify the gap that the Patient Roadmap fills, and describe theory underlying its approach. Then we describe what information a Patient Roadmap might include. Examples are provided, as well as a review comparing the Patient Roadmap concept to existing tools that aim to promote patient-centered care (e.g., patient decision aids). Results and Conclusions. New approaches for promoting patient-centered care are needed. This article provides an introduction and overview of the Patient Roadmap concept for promoting patient-centered care in the context of chronic illness.

Enhancing Success of Medicare's Shared Decision Making Mandates Using Implementation Science: Examples Applying the Pragmatic Robust Implementation and Sustainability Model (PRISM).

The Centers for Medicare and Medicaid Services (CMS) has mandated shared decision making (SDM) using patient decision aids for three conditions (lung cancer screening, atrial fibrillation, and implantable defibrillators). These forward-thinking approaches are in response to a wealth of efficacy data demonstrating that decision aids can improve patient decision making. However, there has been little focus on how to implement these approaches in real-world practice. This article demonstrates how using an implementation science framework may help programs understand multilevel challenges and opportunities to improve adherence to the CMS mandates. Using the PRISM (Pragmatic Robust Implementation and Sustainability Model) framework, we discuss general challenges to implementation of SDM, issues specific to each mandate, and how to plan for, enhance, and assess SDM implementation outcomes. Notably, a theme of this discussion is that successful implementation is context-specific and to truly have successful and sustainable changes in practice, context variability, and adaptation to context must be considered and addressed.

Content Analysis of Negative Online Reviews of Hospice Agencies in the United States.

Importance: As online reviews of health care become increasingly integral to patient decision-making, understanding their content can help health care practices identify and address patient concerns. Objective: To identify the most frequently cited complaints in negative (ie, 1-star) online reviews of hospice agencies across the United States. Design, Setting, and Participants: This qualitative study conducted a thematic analysis of online reviews of US hospice agencies posted between August 2011 and July 2019. The sample was selected from a Hospice Analytics database. For each state, 1 for-profit (n = 50) and 1 nonprofit (n = 50) hospice agency were randomly selected from the category of extra-large hospice agencies (ie, serving >200 patients/d) in the database. Data analysis was conducted from January 2019 to April 2019. Main Outcomes and Measures: Reviews were analyzed to identify the most prevalent concerns expressed by reviewers. Results: Of 100 hospice agencies in the study sample, 67 (67.0%) had 1-star reviews; 33 (49.3%) were for-profit facilities and 34 (50.7%) were nonprofit facilities. Of 137 unique reviews, 68 (49.6%) were for for-profit facilities and 69 (50.4%) were for nonprofit facilities. A total of 5 themes emerged during the coding and analytic process, as follows: discordant expectations, suboptimal communication, quality of care, misperceptions about the role of hospice, and the meaning of a good death. The first 3 themes were categorized as actionable criticisms, which are variables hospice organizations could change. The remaining 2 themes were categorized as unactionable criticisms, which are factors that would require larger systematic changes to address. For both for-profit and nonprofit hospice agencies, quality of care was the most frequently commented-on theme (117 of 212 comments [55.2%]). For-profit hospice agencies received more communication-related comments overall (34 of 130 [26.2%] vs 9 of 82 [11.0%]), while nonprofit hospice agencies received more comments about the role of hospice (23 of 33 [69.7%] vs 19 of 31 [61.3%]) and the quality of death (16 [48.5%] vs 12 [38.7%]). Conclusions and Relevance: Regarding actionable criticisms, hospice agencies could examine their current practices, given that reviewers described these issues as negatively affecting the already difficult experience of losing a loved one. The findings indicated that patients and their families, friends, and caregivers require in-depth instruction and guidance on what they can expect from hospice staff, hospice services, and the dying process. Several criticisms identified in this study may be mitigated through operationalized, explicit conversations about these topics during hospice enrollment.