Obtaining Patient Priorities in a Multiple Sclerosis Comprehensive Care Center: Beyond Patient-Reported Outcomes, 2020, Miller et al

bobbler · Jun 4, 2024

This thread has been split from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
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Just stumbled across this: Obtaining Patient Priorities in a Multiple Sclerosis Comprehensive Care Center: Beyond Patient-Reported Outcomes - Deborah M Miller, Brandon Moss, Susannah Rose, Hong Li, David Schindler, Malory Weber, Sarah M Planchon, Jay Alberts, Adrienne Boissy, Robert Bermel, 2020 (sagepub.com)

Obtaining Patient Priorities in a Multiple Sclerosis Comprehensive Care Center: Beyond Patient-Reported Outcomes

Abstract

Background:
In order to provide patient center care, our multiple sclerosis (MS) clinic assesses patient concerns before clinical encounters, first by asking the optional qualitative question “What is the most important thing you what your health-care provider to know today” (most important concern of the patient [MIPC]) and then completing quantitative patient-reported outcome measures (PROMs) including Quality of Life in Neurological Disorders (Neuro-QoL). Both sets of questions are designed to facilitate encounters that address patients’ values and preferences.

Objective:
Determine whether the qualitative MIPC responses provided unique information not included in PROMs or clinical assessments.

Methods:
We randomly selected 400 first-time MIPC responders and 400 first-time MIPC nonresponders from 2788 participants in our database. We categorized MIPC responses by content and number of unique concerns and appended them to the Neuro-QoL framework. Nonresponders were compared to those who provided 1 and 2 or more responses.

Results:
Several MIPCs MS symptoms categories were added to the Neuro-QoL Physical domain. Most important concern of the patients work and cost-of-care categories were added to the Social Domain. Domains regarding treatment satisfaction and disease management were added. Two hundred thirty (58%) MIPC respondents reported 1 concern, 140 (35%) expressed 2 to 6 concerns, and 30 (7%) reported MS-unrelated concerns and not analyzed. Physical symptoms were the most common MIPC (69.9%). Respondents with more concerns were more likely African American, lacked private insurance, and worse disability.
Conclusions:
Importantly, MIPC responders described idiosyncratic symptoms, disease management, and social concerns not included in the PROMS, suggesting the MIPC question offered patients a unique opportunity to share specific concerns with their providers.
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bobbler · Jun 4, 2024

bobbler said: ↑

Just stumbled across this: Obtaining Patient Priorities in a Multiple Sclerosis Comprehensive Care Center: Beyond Patient-Reported Outcomes - Deborah M Miller, Brandon Moss, Susannah Rose, Hong Li, David Schindler, Malory Weber, Sarah M Planchon, Jay Alberts, Adrienne Boissy, Robert Bermel, 2020 (sagepub.com)
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Without leading the witness or copy-pasting too much of this, I would like to encourage people to give this one a read from the Background section down.

There are two really important and fascinating pertinent aspects I'm fishing out here as conversations, and in order to allow for comments to hopefully stream from each (although they might interact as they do here), I'm pasting them one at a time:

The first is specifically about care, PROMS and other measures (I've inserted line-break for readability):

Patient-centered care, as is advocated for by the Institute of Medicine (1) and chronic disease management (2), both of which emphasize patient engagement (3) in their care and, more specifically, patient activation (4) to manage their own health care, is central to our treatment approach to managing multiple sclerosis (MS). Central to that engagement is patients’ direct input about their concerns.

While there are relatively high correlations between patient-reported outcome measures (PROMs) and clinical assessment of walking speed and manual dexterity (5), research shows that patients and clinicians differ in what they consider to be the most important MS symptoms and how they prioritize treatments (6,7). Moreover, the relevance of using PROMs in MS clinical practice is well recognized because many of the most disabling symptoms including fatigue and pain do not have objective clinical measures that assess them (8,9).
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bobbler · Jun 4, 2024

bobbler said: ↑

Just stumbled across this: Obtaining Patient Priorities in a Multiple Sclerosis Comprehensive Care Center: Beyond Patient-Reported Outcomes - Deborah M Miller, Brandon Moss, Susannah Rose, Hong Li, David Schindler, Malory Weber, Sarah M Planchon, Jay Alberts, Adrienne Boissy, Robert Bermel, 2020 (sagepub.com)
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THe second, which perhaps might also eventually deserve it's own page (and to see if there are any other similar set-ups doing this, including for other conditions) is the talk about their centre having set up a 'Learning Health System' model:

Our MS Center has established a learning health system (LHS) model to advance our ongoing care and research goals. The platform we developed to support this LHS is called the Multiple Sclerosis Performance Test (MSPT). This platform allows clinicians and researchers to measure and address the spectrum of clinical questions across diverse MS patients. The goal of the LHS is to accumulate large-scale clinical and objective data to develop more effective patient-specific treatment approaches.

This model will transform treatment approaches from one in which the “typical patient with MS” is considered to one in which a precise phenotype of the patient will be treated based on effectiveness observed in patients of a similar phenotype. This approach will assure that unique groups of patients get the best care to meet their needs. The benefit of an LHS can have an immediate impact on patient engagement and health-care delivery when they provide self-reported data that are incorporated into the clinical encounter.

The basis of an LHS is the structured and systematic collection of consistent data elements that are typically determined by members of the health-care team (10). While constructing this system, the development team, with input from our Voice of the Patient Advisory Council, and in response to recommendations by the MS in the 21st Century Steering Group (11), wanted to ensure that we offered patients an opportunity to communicate their goals for any given clinical encounter.
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bobbler · Jun 4, 2024

bobbler said: ↑

Just stumbled across this: Obtaining Patient Priorities in a Multiple Sclerosis Comprehensive Care Center: Beyond Patient-Reported Outcomes - Deborah M Miller, Brandon Moss, Susannah Rose, Hong Li, David Schindler, Malory Weber, Sarah M Planchon, Jay Alberts, Adrienne Boissy, Robert Bermel, 2020 (sagepub.com)

Background:
In order to provide patient center care, our multiple sclerosis (MS) clinic assesses patient concerns before clinical encounters, first by asking the optional qualitative question “What is the most important thing you what your health-care provider to know today” (most important concern of the patient [MIPC]) and then completing quantitative patient-reported outcome measures (PROMs) including Quality of Life in Neurological Disorders (Neuro-QoL). Both sets of questions are designed to facilitate encounters that address patients’ values and preferences.
Click to expand...

I'm also intrigued to pick out of the quote from here, and look up the following elements in more detail (my adding of numbers and lines and my bolding):

"1. first by asking the optional qualitative question “What is the most important thing you what your health-care provider to know today” (most important concern of the patient [MIPC])

2. and then completing quantitative patient-reported outcome measures (PROMs)

3. including Quality of Life in Neurological Disorders (Neuro-QoL)"

There also seem to be the following, which I'm trying to confirm exactly where they fit in:

Neuro-performance tests

Four NPTs were included in the MSPT, each forming a separate module:

– Walking Speed Test, an iPad-adapted version of the Timed-25 Foot Walk (15).

– Manual Dexterity Test (MDT), an iPad-adapted version of the 9-Hole Peg Test (15).

– Processing Speed Test, an iPad-adapted version of the Symbol Digit Modalities Test (24).

– Contrast Sensitivity Test (CST), an iPad-adapted version of the Sloan Low Contrast Letter Acuity (25).
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MrMagoo · Jun 4, 2024

I feel like the MS PROMS were mentioned earlier in this thread*

[the thread mentioned in the first post]

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