Document Type

Dissertation

Date of Degree

Spring 2021

Primary Advisor

Trudy Mallinson

Keywords

Patient-Centered Measurement; Coma Recovery Scale-Revised; Translational Medical Research

Abstract

Background: Disorders of consciousness (DoC) include different states (e.g., comatose, vegetative state/unresponsive wakefulness syndrome, minimally conscious state (MCS), and emerging minimally conscious state (eMCS)) following a severe brain injury. Yet, effective communication about treatment of patients with DoC is often inhibited because family caregivers and rehabilitation practitioners do not interpret recovery of consciousness in the same way (Epstein & Street, 2007; Weaver et al., 2018). Because a person may remain in a disordered state of consciousness for as long as two decades and receive multiple episodes of rehabilitation during that time, ensuring clear communication among family caregivers and rehabilitation practitioners about treatment decisions is important (Beaumont & Kenealy, 2005). Incorporating person-centered measurement principles (American Institutes for Research, 2017) into how assessment results are shared between and within key stakeholders’, rehabilitation practitioners’ and family caregivers’, may facilitate shared treatment decisionmaking (SDM). SDM is the process in which both family caregivers and rehabilitation practitioners share clinical data and personal values to arrive at a mutual treatment decision (Elwyn et al., 2016; Papadimitriou et al., 2020).

Objective: The long-term objective of this research is to facilitate shared decision making in treatment planning between rehabilitation practitioners and the family caregivers of individuals with DoC following a severe brain injury. The purpose of this research is to create a recovery ruler that facilitates effective communication about assessment results between caregivers and rehabilitation practitioners as a preliminary step in advancing shared treatment decision making.

Methods: Using a mixed methods design, a shared decision making tool was developed with the purpose of facilitating communication between family caregivers and rehabilitation practitioners when treatment planning. A scoping review evaluated and characterized treatments for patients with DoC, particularly ones that could be tailored to patient-specific contextual factors, and which would be enhanced with family caregivers and rehabilitation practitioner’s collaboration. Next, the qualitative phase explored family caregivers’ and rehabilitation practitioners’ (key stakeholders) decision making process when treatment planning for the patient. The quantitative phase, conducted mostly simultaneously with the qualitative phase, examined one of the most widely used neurobehavioral assessments, the Coma Recovery Scale – Revised (CRS-R) for its psychometric properties. Neurobehavioral assessments play an important role in evaluating recovery of function that is a key indicator of treatment effectiveness for patients in DoC. A co-calibration, performed using Rasch Analysis, aligned states of consciousness to CRS-R items, rating scale steps and total score, to create a Keyform prototype (Linacre, 1995, 1997). A participatory design with family caregivers, rehabilitation practitioners, and an instructional designer, facilitated the co-creation of a shared decision making tool based on the Keyform prototype to ensure comprehensibility, timeliness, transparency, and a relationship focus. Design groups with key stakeholders transformed the initial Keyform prototype from quantitative data output to a final prototype that could be evaluated for supports and barriers to implementation.

Results: In the scoping review, four studies meeting the Scottish Intercollegiate Guideline Network criteria for acceptable to high levels of evidence were identified for targeting body functions that incorporated contextual factors (e.g., personal preferences and interests) and demonstrated positive findings; three of these studies demonstrated medium to large effect sizes. Ultimately, the scoping review findings provide preliminary evidence supporting the tailoring of treatments to patient-specific contextual factors. During the ethnographic study, two types of shared treatment decision making, integrative and declarative, were identified from the qualitative analyses. Both types served to foster a partnership between the family caregiver and rehabilitation practitioner. Integrative shared decision making was observed when the family caregiver was included in the delivery of the rehabilitation treatment and contributed to decision-making as the treatment unfolded. Declarative shared decision making was observed when the rehabilitation practitioner and family member agreed upon treatment at a prior time that was then subsequently delivered by the rehabilitation practitioner. Based on Rasch Analysis in the quantitative phase, the six items on the CRS-R were found to demonstrate good structural validity, reproducibility, and strong external validity with states of disordered consciousness. All items had monotonic rating scale structures, demonstrated sufficient unidimensionality, excellent measurement precision (Wright’s person separation reliability 0.95) and the item hierarchy reflected a continuum of neurobehavioral function that aligned with clinical expectations and prior literature. Co-calibration aligned CRS-R items and rating scale steps with consensus-based states of disordered consciousness, known as the Aspen criteria. This analysis identified additional rating scale steps which are of equal challenge to those in the consensus criteria and may help better distinguish between MCS and eMCS. A participatory method to co-create a shared decision making tool facilitated the identification of content that could be added, removed, or changed, to create a ‘recovery ruler’. Key features that were added to the recovery ruler included descriptions of the states of disordered consciousness and a box where the family can share information about the patient’s preferences, values, and interests. Participants reported improved usability, acceptability, adaptability, and feasibility of the recovery ruler after incorporating recommended changes from the design groups. In addition, supports and barriers to implementing the recovery ruler in practice were identified which informed the creation of an implementation strategy, including developing practitioner training for the recovery ruler and laminating the tool to keep at the patient’s bedside.

Conclusions: Findings suggested the value of tailoring treatments for patients with disorders of consciousness, which requires rehabilitation practitioners collaborate in shared decision making with family caregivers to identify personal preferences, values, and interests. Understanding how shared decision-making occurs in choosing and implementing evidence-based rehabilitation treatment can inform education approaches for rehabilitation practitioners so they develop specific skills related to engaging family caregivers in treatment planning. Determining that the CRS-R had good psychometric properties on a large sample size provides substantive evidence that it was valid and appropriate for use in designing a recovery ruler. Integrating person-centered measurement principles based on feedback from design group participants resulted in a prototype that can provide instantaneous assessment results to family caregivers and rehabilitation practitioners. To our knowledge, this is the first study that has incorporated person-centered measurement principles to develop a shared decision making tool for an existing assessment about neurobehavioral function. Future evaluation of the recovery ruler in a real-world setting will determine if it improves communication between family caregivers and rehabilitation practitioners. Addressing the supports and barriers to implementation identified in this study, such as using the ruler at the patient’s bedside and developing training, will be critical to the design and approach for future studies.

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©2021 by Jennifer Ann Craft Weaver. All rights reserved.

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