Translating Measurement Advances to Practice

Doctor holding patient's hand

What are we doing?

Advanced Metrics Lab goes beyond developing measures that are psychometrically sound by including stakeholders in the process to ensure that the measure is usable and feasible in the clinic providing individuals with information they feel they need to know. For example, Drs. Trudy Mallinson and Christina Papadimitriou were funded by AIR through RWJF and our team caregiver co-investigators as we developed a prototype of a person-centered measure for individuals with disorders of consciousness. Dr. Jen Weaver is working on using an existing and widely used neurobehavioral measure, the Coma Recovery Scale-revised, to develop a visual representation of the patient’s progress to improve communication about therapy progress between the family and rehabilitation therapists.

Why does this matter?

Our current work in shows that assessments information is often poorly communicated because outputs, such as scores or cut points, do not help practitioners and care partners make decisions or effectively guide treatment planning. Our research in this space focuses on including multiple stakeholders in the testing, evaluation, and dissemination of assessment research, with the goal of designing and implementing more user-friendly, relationship-centered assessments.

What are our current/recent projects?

Relationship-Centered Shared Decision-Making (RC-SDM) in chronic disability

Shared decision-making, a cornerstone of patient-centered care, relies on patient engagement. But some patients lack the cognitive capacity to decide for themselves and communicate their wishes. Care partners -family or informal caregivers can be important voices in communicating and advocating with healthcare practitioners around treatment decisions. However, our work finds that care partners and practitioners struggle to engage in SDM because they are not always listened to by practitioners, and practitioners do not always effectively include care partners in SDM.

This work began with a pilot study from American Institutes of Research supported by the Robert Wood Johnson Foundation to apply five person-centered measurement principles: patient-driven, holistic, transparent, comprehensible and timely, and co-created with patients. Listen to Christina and Trish discuss this project https://youtu.be/V4cEb-WtM8Y

https://www.air.org/project/patient-centered-measurement-pilot-projects

  • Conceptualizing the RC-SDM process
    • Weaver, J., Papadimitriou, C., Davidson, L., Guernon, A., van der Wees, P., & Mallinson, T. (2022). Explicating Integrative and Declarative Shared Treatment Decision Making in Rehabilitation Encounters When Patients are Without a Voice: A Grounded Theory Analysis. Archives of Physical Medicine & Rehabilitation, 103(3), e22. https://doi.org/10.1016/j.apmr.2022.01.060
    • Papadimitriou C, Clayman M, Mallinson T, Weaver J, Kot T, Ford P, Corcoran M, Van der Wees P, Guernon A. (2020). What Does Shared Decision Making Look Like in Chronic Disability Care? A Conceptual Process Model of SDM to Better Serve PM&R. Archives of Physical Medicine & Rehabilitation, 101 (12), E155. https://doi.org/10.1016/j.apmr.2020.10.090

Recover Ruler

Led, by Jen Weaver, the lab is working to create Recovery Rulers. Recovery Rulers are comprehensible and timely, transparent, and relationship-focused visual tools that communicate real-time assessment results and facilitates shared decision-making between practitioners and care partners. Recovery Rulers are based on the Winsteps keyform, a visual display of the relationship between persons and items developed by the late Dr. Benjamin D. Wright

Understanding Care Partner Experiences in DoC

Our goal is to understand the experiences of care partners who care for patients in DoC Care partners who care for persons in DoC become legal surrogates as well as everyday advocates for their loved one. We have focused on two topics: 1) How they understand the clinical assessments used to evaluate their loved one’s behaviors, especially with a focus on how assessment information is communicated to them and how treatment decisions are made; 2) Some care partners state that healthcare practitioners do not listen to them and not always include them in decisions about their loved ones. Others state that their interactions with practitioners are supportive. We focus on understanding whether shared decision-making occurs and how.

  • “Nobody listens to me”
    • Papadimitriou C, Weaver J, Guernon A, Abuzahra I, Almaat R, Mueller C, Slack S, Versin C, Mallinson T, Kot T, & Ford P. (2022). Caregiver Perceptions of Their Communication with Rehabilitation Providers Who Treat Persons in Disordered States of Consciousness. Archives of Physical Medicine & Rehabilitation, 103(3), e18. https://doi.org/10.1016/j.apmr.2022.01.048
    • Weaver J, Mallinson T, Davidson L, Papadimitriou C, Guernon A, Van der Wees P. (2021). Exploring Shared Decision Making Between Family Caregivers, Persons with Disorders of Consciousness, and Rehabilitation Therapists in Acute Care. American Journal of Occupational Therapy, 75(Supplement_2):7512510247. https://doi.org/10.5014/ajot.2021.75S2-RP247
    • Weaver, J., Papadimitriou, C., Kot, T., Guernon, A., Ford, P., Elgin, E., Jones, A., Mallinson, T., & Pape, T. (2019). No One Listens to Me: Working with Caregivers to Listen to Their Caring Experiences. Archives of Physical Medicine and Rehabilitation, 100(10), e102-e103. https://doi.org/10.1016/j.apmr.2019.08.296
    • Papadimitriou C, Mallinson T, Pape T, Guernon A, Weaver J, & Walsh E. (2017). #0577 Identifying Exemplars of Meaningful Functional Change seen in Patients with Disorders of Consciousness Following Severe Traumatic Brain Injury - Accepted Abstracts from the International Brain Injury Association’s 12th World Congress on Brain Injury, Brain Injury, 31(6-7), 947. https://doi.org/10.1080/02699052.2017.1312145

Understanding Healthcare Provider Experiences in DoC

Our goal is to understand the experiences of rehabilitation practitioners who care for patients in DoC. Rehabilitation practitioners who care for patients in DoC work in an environment of ambiguity and uncertainty. Ambiguity exists when there is either no evidence base or there is an imprecise scientific basis to guide diagnoses, prognostication and treatment decisions. Uncertainty occurs when there is high variability in patient responses to treatment and recovery patterns are unpredictable. We have focused on two topics: 1) how do practitioners use clinical assessments to evaluate patient behaviors, and 2) how do they navigate the ambiguity and uncertainty that is inherent in their work.

  • Rehabilitation practitioner perspectives on ambiguity
    • Papadimitriou C, Weaver J, Guernon A, Walsh E, Mallinson T, Pape T. (2022). Fluctuation is the norm”: Rehabilitation practitioner perspectives on ambiguity and uncertainty in their work with persons in disordered states of consciousness after traumatic brain injury, PLOS ONE, Published: April 21, 2022, https://doi.org/10.1371/journal.pone.0267194
    • Papadimitriou C, Weaver J, Guernon A, Mallinson T, Walsh E, & Bender Pape T. (2018). Clinicians’ Sense-Making When Working with Patients in Disordered States of Consciousness Following Brain Injury—Accepted Abstracts from the American Congress of Rehabilitation Medicine, Archives of Physical Medicine and Rehabilitation, 99 (12): e195. https://doi.org/10.1016/j.apmr.2018.09.019
    • Guernon A, Papadimitriou C, Walsh E, Weaver J, Bender Pape T, & Mallinson T. (2018). Clinical Reasoning when Treating Patients with Disorders of Consciousness Following Severe Traumatic Brain Injury – Accepted Abstracts from the Federal Interagency Conference for Traumatic Brain Injury, Archives of Physical Medicine and Rehabilitation, 99(11): e131. https://doi.org/10.1016/j.apmr.2018.08.011
    • Weaver J, Mallinson T, Papadimitriou C, Guernon A, Walsh E, & Pape T. (2018). Communication Among Multidisciplinary Team Members Treating Patients with Disorders of Consciousness Following Traumatic Brain Injury – Accepted Research Abstracts from the American Occupational Therapy Association Conference, American Journal of Occupational Therapy, 72 (4: Supplement 1) PO 4041. https://doi.org/10.5014/ajot.2018.72S1-PO4041