SHARED DECISION MAKING IN DCM

Knowledgeable patients, equipped with the necessary skills and confidence in managing their own health, are able to take a more active role in their care decisions and are more likely to have better clinical outcomes.

This is particularly important in chronic conditions, where care decisions are open to context and interpretation, and where such circumstances can change and decisions must be revisited. Moreover, unlike professionals who often favour personal experience for recommendations, patients can be more likely to bring the latest evidence into the discussion.

This summarises “shared decision making” (SDM; see Figure 1), a process by which patients and professionals work together to make healthcare decisions. Many tools have been proposed to support SDM. These can offer not just an opportunity to help individuals, but also a means to help integrate knowledge updates into clinical care.

*Figure 1: Overview of shared decision making (SDM).*
*Figure adapted from Joseph-Williams et al [2019]*

How Is Myelopathy.org and RECODE-DCM Working to Support Shared Decision Making?

In May 2021, Myelopathy.org was awarded an Evelyn Trust Health and Wellbeing Grant to help lay the foundations for quality SDM in Degenerative Cervical Myelopathy (DCM) in two ways:

First, developing a Core Information Set (CIS) for DCM to support the “Preparation Phase”. A CIS represents a baseline information “checklist” intended to facilitate a dialogue between patients and professionals in order for patients to make better value-based decisions about their healthcare when multiple options are available. A DCM CIS was proposed, recognising that patients currently struggle to find information about DCM and have no general knowledge, making it difficult for them to enter into a SDM process.

Second, process mapping the care pathway in DCM, to establish the key points at which decisions are made, and if/how a SDM process can be supported. We anticipate that a detailed map of the DCM care pathway could also support other areas of DCM research. An overview of this process can be seen in the below Figure 2: Overview of the Phases Involved in the Development of the DCM Diagnosis Core Information Set (CIS).

Where Is SHARED-DCM Up To?

Core Information Set

During the first step of this work, we conducted a review of the existing educational content sources. Scientific publications, videos, health websites and patient leaflets were included. Our analysis showed that an overwhelming majority (80%) of resources are geared towards professionals, leaving patients with limited resources to improve their knowledge.

Next, we wanted to understand the perspectives and information needs of people with DCM. We conducted and analysed qualitative, semi-structured interviews from twenty people with DCM recruited from the Myelopathy.org Support Group on Facebook. Preliminary results indicated critical, wide-ranging knowledge deficiencies on the topics of the condition and its trajectory, pre- and post-operative guidance, finances, employment, and mental health management.

We are now entering the CIS development stage (Figure 2, Phase 3: Consensus Process). Using robust methodology (the Delphi consensus procedure) and the input of key stakeholders we will refine and agree on a final DCM Diagnosis CIS. We expect the development of the CIS to be completed by May 2023. We will then validate the tool and demonstrate its effectiveness in clinical practice.

Process Map

The process mapping exercise is expected to commence in April 2023, at which point people with DCM, their supporters and clinicians will be invited to participate in a comprehensive semi-structured interview conducted online, via Zoom. Interviews will focus on understanding a number of aspects related to the clinical care pathways associated with DCM, including:

The timepoints at which decisions need to be made

The nature of decisions under consideration

The magnitude (level of risk / importance) of decisions under consideration

The information required to support each decision under consideration

The process map(s) will be developed iteratively and validated by all key stakeholders who contribute to the study. We are taking an international approach, inviting the participation of stakeholders from all over the world, to ensure a globally shared understanding of DCM care. This is key as, ultimately, the process map will inform the design and implementation of SDM tools.

To contribute to the project, please contact Irina Sangeorzan at irina@myelopathy.org.

To stay tuned for project updates, please ensure you are subscribed to the RECODE-DCM newsletter.

Patient Decision Aid

One of the common tools used to help patients participate in decision making is called a patient decision aid. This can take a variety of different formats but aims to help the patient understand the context of the decision, and help them define and articulate their priorities, whilst presenting the pros and cons of different options.

Myelopathy.org and RECODE-DCM are working with a team from the University of Melbourne, Australia, to produce a “Should I Have Surgery?” patient decision aid. A final version is expected by the end of 2023.

Why Is This Considered Part of the RECODE-DCM Toolkit?

Whilst SHARED-DCM and its resources may appear more applicable to clinical practice than research, we have included these resources within the toolkit for a number of reasons:

1. Ensuring that research participants are well informed is a critical part of consent into research. The CIS may have a role here.

2. Understanding the DCM care pathway can help investigators refine their recruitment strategies (e.g. where, how, and by whom should participants be recruited?). The process map may have a role here.

3. It can also help understand how their evidence will contribute to practice; perhaps to refine the research question or design, but also to inform their planned implementation strategy (e.g. who are the key stakeholders?). The process map may have a role here.