Systemic challenges in bipolar disorder management: A patient-centered approach

Abstract

Objectives: As part of a series of Patient-Centered Outcomes Research Institute-funded large-scale retrospective observational studies on bipolar disorder (BD) treatments and outcomes, we sought the input of patients with BD and their family members to develop research questions. We aimed to identify systemic root causes of patient-reported challenges with BD management in order to guide subsequent studies and initiatives.

Methods: Three focus groups were conducted where patients and their family members (total n = 34) formulated questions around the central theme, "What do you wish you had known in advance or over the course of treatment for BD?" In an affinity mapping exercise, participants clustered their questions and ranked the resulting categories by importance. The research team and members of our patient partner advisory council further rated the questions by expected impact on patients. Using a Theory of Constraints systems thinking approach, several causal models of BD management challenges and their potential solution were developed with patients using the focus group data.

Results: A total of 369 research questions were mapped to 33 categories revealing 10 broad themes. The top priorities for patient stakeholders involved pharmacotherapy and treatment alternatives. Analysis of causal relationships underlying 47 patient concerns revealed two core conflicts: for patients, whether or not to take pharmacotherapy, and for mental health services, the dilemma of care quality vs quantity.

Conclusions: To alleviate the core conflicts identified, BD management requires a coordinated multidisciplinary approach including: improved access to mental health services, objective diagnostics, sufficient provider visit time, evidence-based individualized treatment, and psychosocial support.

Keywords: Theory of Constraints; bipolar disorder; operational excellence; patient priorities; patient-centered; systems thinking.

Figure 1

Seeking vs avoiding pharmacotherapy. A communication current reality tree (CCRT) reflecting bipolar disorder (BD) management challenges experienced by patients with BD and their family members is shown. Undesirable effects (UDEs) are framed in red rounded rectangles, and additional entities in black rounded rectangles. The red rounded rectangle with dashed lines represents a cluster of UDEs that are further expanded in Figure 3. Arrows signify direct causal relationships; arrows directed to “AND” operators imply that the combination of causes is needed to produce the resulting effect. The lightning sign reflects a conflict between mutually exclusive alternatives [Colour figure can be viewed at wileyonlinelibrary.com]

Figure 2

Treatment leads to wellness. A future reality tree (FRT) reflecting potential improvements in bipolar disorder (BD) care management is shown. Positive changes are framed in green rounded rectangles, additional entities in black rounded rectangles, and system interventions in square rectangles. Arrows signify direct causal relationships; arrows directed to “AND” operators imply that the combination of causes is needed to produce the resulting effect [Colour figure can be viewed at wileyonlinelibrary.com]

Figure 3

Quality vs quantity. A communication current reality tree (CCRT) reflecting causal relationships underlying patients’ experience that mental health care does not address their needs is shown. Undesirable effects (UDEs) are framed in red rounded rectangles, and additional entities in black rounded rectangles. Arrows signify direct causal relationships; arrows directed to “AND” operators imply that the combination of causes is needed to produce the resulting effect. The lightning sign reflects a conflict between mutually exclusive alternatives. The UDEs at the top of the tree are the same as in Figure 1, but represented in shortened form [Colour figure can be viewed at wileyonlinelibrary.com]

Figure 4

System overhaul. A future reality tree reflecting potential interventions to produce bipolar disorder (BD) management success is shown. Positive changes are framed in green rounded rectangles, additional entities in black rounded rectangles, and system interventions in square rectangles. Interventions shown in italics are being developed but are not yet ready for practical implementation. Arrows signify direct causal relationships; arrows directed to “AND” operators imply that the combination of causes is needed to produce the resulting effect. ECHO, Extension for Community Healthcare Outcomes [Colour figure can be viewed at wileyonlinelibrary.com]