Metadata
Title | Quality of Life Outcome for Patients with Neurologic Conditions
Version | Draft based on 0.1.000
Short Name | CMS1234QOLNeurologicConditions
GUID (Version Independent) | urn:uuid:772ddd9d-27e5-456d-87bb-7fe47aa2afb6
GUID (Version Specific) | urn:uuid:5def8f3e-8c71-411c-bcbf-460552aaa131
Effective Period | 2026-01-01 through 2026-12-31
Status | draft
Use Context | org.hl7.fhir.r5.model.UsageContext@42a7d630
Steward (Publisher) | American Academy of Neurology
Developer | American Academy of Neurology
Developer | Lantana Consulting Group
Description | Percentage of adult patients with a diagnosis of a neurologic condition whose quality of life assessment results are maintained or improved in the twelve months following the first Patient-Reported Outcomes Measurement Information System (PROMIS) score
Copyright | Copyright: (C)2024 American Academy of Neurology Institute (AANI). All rights reserved.
Disclaimer | Quality Measures published by the American Academy of Neurology and its affiliates are assessments of current scientific and clinical information provided as an educational service. The information: 1) should not be considered inclusive of all proper treatments, methods of care, or as a statement of the standard of care; 2) is not continually updated and may not reflect the most recent evidence (new evidence may emerge between the time information is developed and when it is published or read); 3) addresses only the question(s) or topic(s) specifically identified; 4) does not mandate any particular course of medical care; and 5) is not intended to substitute for the independent professional judgment of the treating provider, as the information does not account for individual variation among patients. In all cases, the selected course of action should be considered by the treating provider in the context of treating the individual patient. Use of the information is voluntary. AAN provides this information on an “as is” basis, and makes no warranty, expressed or implied, regarding the information. AAN specifically disclaims any warranties of merchantability or fitness for a particular use or purpose. AAN assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of this information or for any errors or omissions. Limited proprietary coding is contained in the measure specifications for convenience. Users of the proprietary coding sets should obtain all necessary licenses from the owners of these code sets. The AAN and its members disclaim all liability for use or accuracy of any Current Procedural Terminology (CPT®) or other coding contained in the specifications. ICD10 copyright 2025 International Health Terminology Standards Development Organization CPT(R) contained in the Measure specifications is copyright 2004-2025 American Medical Association. LOINC(R) is copyright 2004-2024 Regenstrief Institute, Inc. This material contains SNOMED Clinical Terms(R) (SNOMED CT[R]) copyright 2004-2024 International Health Terminology Standards Development Organisation. ICD-10 is copyright 2025 World Health Organization. All Rights Reserved.
Rationale | Measuring quality of life allows patients and providers to identify areas of concern and develop appropriate treatment plan adjustments and collecting quality of life data in a neurology ambulatory setting was found to be meaningful (Katzan, et al. 2018) (Moura, et al. 2016).
Clinical Recommendation Statement | While there is no clinical guideline recommending that clinicians assess quality of life for patients with neurologic conditions, there is general support for the use of Patient-Reported Outcomes Measurement Information System [PROMIS]-10-Global as a meaningful assessment to aid in assessing patient concerns (Hays, et al. 2009).
Citation | Etkind, S. N., Daveson, B. A., Kwok, W., Witt, J., Lovell, N., Bajwah, S., ... Higginson, I. J. (2015). Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: Does it make a difference? Journal of Pain and Symptom Management, 49(3), 611–624. https://doi.org/10.1016/j.jpainsymman.2014.07.010
Citation | Hays, R. D., Bjorner, J. B., Revicki, D. A., Spritzer, K. L., & Cella, D. (2009). Development of physical and mental health summary scores from the Patient-Reported Outcomes Measurement Information System (PROMIS) global items. Quality of Life Research, 18(7), 873–880. https://doi.org/10.1007/s11136-009-9496-9
Citation | Katzan, I. L., & Lapin, B. (2018). PROMIS GH (Patient-Reported Outcomes Measurement Information System Global Health) scale in stroke: A validation study. Stroke, 49(1), 147–154. https://doi.org/10.1161/STROKEAHA.117.018766
Citation | Moura, L. M. V. R., Schwamm, E., Moura, V., Jr., Shubina, M., Cole, A. J., Kizer, J. S., & Kent, D. M. (2016). Feasibility of the collection of patient-reported outcomes in an ambulatory neurology clinic. Neurology, 87(1), 1–8. https://doi.org/10.1212/WNL.0000000000002801
Citation | Sico, J. J., Sarwal, A., Benish, S. M., Lum, H. D., Damush, T. M., Bravata, D. M., & Cheng, E. M. (2020). Quality improvement in neurology: Neurology Outcomes Quality Measurement Set. Neurology, 94(22), 982–990. https://doi.org/10.1212/WNL.0000000000009386
Definition | Denominator Identification Period: The period in which eligible patients can have an index event. The denominator identification period occurs prior to the measurement period and is defined as 14 months to two months prior to the start of the measurement period. For example, the denominator identification period for the 2023 measurement period is from 11/1/2021 to 10/31/2022. For patients with an index event, there needs to be enough time following index for the patients to have the opportunity to reach comparison twelve months +/- 60 days after the index event date.
Definition | Index Event: An index event includes ALL of the following criteria 1) Outpatient and virtual visits during the Denominator Identification Period 2) Patients with an active diagnosis of a neurologic condition 3) and includes the first instance a PROMIS Global Health-10 score was recorded
Definition | Index Event Date: The date the Index Event occurred
Definition | Measure Assessment Period: The Index Event Date marks the start of the measurement assessment period and concludes at twelve months allowing a grace period of sixty days prior to and sixty days after this date (+/-60 days) for the follow-up PROMIS score. For patients with more than 2 scores present at twelve months (+/- 60 days) the last score recorded shall be compared to the Index Event score.
Definition | PROMIS 10: A validated 10 question survey to assess physical and mental health.
Guidance (Usage) | Patients meeting the Index event criteria are excluded from the measure regardless if both PROMIS Assessments are performed prior to death. The measure is not expected to have a 100% performance rate given the goal of implementing this quality measure is to establish an individual benchmark in the first measurement period and drive performance improvement over time in subsequent measurement periods. The work group discussed the potential value of exclusions and unintended consequences of excluding specific neurologic conditions such as ALS and Huntington disease. The work group ultimately determined that there would be value in the continued assessment of quality of life for those with a terminal illness and/or neurodegenerative disease. Existing data demonstrates that patient outcome measures reported within palliative care populations enhance patients’ quality of life (Etkind, et al. 2015), including patients with neurodegenerative diseases. There are opportunities to identify unmet or underappreciated patient needs and improve quality of life throughout disease stages. It was also noted that if a neurologist is working strictly with an ALS population, the benchmarks identified would be meaningful and could drive change over time (Sico, et al. 2020). Virtual visits are acceptable for this measure. This digital quality measure (dQM) is a patient-based measure. Regarding Index Event, the above criteria are required, and the patient is NOT in a prior index period. Regarding the exception, the work group recommends that clinics and providers reach out to all patients and their care partners to provide this information. The work group is aware that patients with advanced disease activity may not be able to provide accurate responses to this question, but efforts should be made to engage care partners to provide information. For example, some patients may be unable to hold a pen or type on a keyboard to answer the question while others may experience delusional beliefs preventing an accurate assessment of provider performance. These scenarios include patients with reduced cognitive ability. Providers are encouraged to gain proxy information on performance when possible, and the work group recognizes this is not always possible. The AAN will monitor the measure over time for unintended consequences of having such an exception.
Measure Group (Rate) (ID: Group_1)
Basis | boolean
Scoring | [http://terminology.hl7.org/CodeSystem/measure-scoring#proportion: 'Proportion']
Type | [http://terminology.hl7.org/CodeSystem/measure-type#outcome: 'Outcome']
Improvement Notation | [http://terminology.hl7.org/CodeSystem/measure-improvement-notation#increase: 'Increased score indicates improvement']
Initial Population | ID: InitialPopulation_1 Description: Patients aged 18 years and older at the time of the first PROMIS assessment visit who have a diagnosis of a neurological condition Logic Definition: Initial Population
Denominator | ID: Denominator_1 Description: Equals Initial Population Logic Definition: Denominator
Denominator Exclusion | ID: DenominatorExclusion_1 Description: *Patients who died *Second PROMIS Global Health-10 score not collected at twelve months (+/-60 days) Logic Definition: Denominator Exclusion
Numerator | ID: Numerator_1 Description: Patients whose PROMIS Global Health-10 score at twelve months (+/-60 days) following the Index Event was maintained or improved from the index score Logic Definition: Numerator
Supplemental Data Guidance | For every patient evaluated by this measure also identify payer, race, ethnicity and sex
Supplemental Data Elements
Supplemental Data Element | ID: sde-ethnicity Usage Code: [http://terminology.hl7.org/CodeSystem/measure-data-usage#supplemental-data] Description: SDE Ethnicity Logic Definition: SDE Ethnicity
Supplemental Data Element | ID: sde-payer Usage Code: [http://terminology.hl7.org/CodeSystem/measure-data-usage#supplemental-data] Description: SDE Payer Logic Definition: SDE Payer
Supplemental Data Element | ID: sde-race Usage Code: [http://terminology.hl7.org/CodeSystem/measure-data-usage#supplemental-data] Description: SDE Race Logic Definition: SDE Race
Supplemental Data Element | ID: sde-sex Usage Code: [http://terminology.hl7.org/CodeSystem/measure-data-usage#supplemental-data] Description: SDE Sex Logic Definition: SDE Sex
Measure Logic
Primary Library | https://madie.cms.gov/Library/QOLNeurologicConditions
Contents | Population Criteria Logic Definitions Terminology Dependencies Data Requirements
Population Criteria
Measure Group (Rate) (ID: Group_1)
Initial Population
    define "Initial Population":
      "Age 18 Or Older At Time Of First PROMIS"
Denominator
    define "Denominator":
      "Initial Population"
Denominator Exclusion
    define "Denominator Exclusion":
      "Patient Expired"
        or "Second PROMIS Not Collected"
Numerator
    define "Numerator":
      "Last PROMIS Same Or Higher Score Compared To First PROMIS"
Logic Definitions
Logic Definition | Library Name: SupplementalDataElements
    define "SDE Sex":
      case
        when Patient.sex = '248153007' then "Male (finding)"
        when Patient.sex = '248152002' then "Female (finding)"
        else null
      end
Logic Definition | Library Name: SupplementalDataElements
    define "SDE Payer":
      [Coverage: type in "Payer Type"] Payer
        return {
          code: Payer.type,
          period: Payer.period
        }
Logic Definition | Library Name: SupplementalDataElements
    define "SDE Ethnicity":
      Patient.ethnicity E
        return Tuple {
          codes: { E.ombCategory } union E.detailed,
          display: E.text
        }
Logic Definition | Library Name: SupplementalDataElements
    define "SDE Race":
      Patient.race R
        return Tuple {
          codes: R.ombCategory union R.detailed,
          display: R.text
        }
Logic Definition | Library Name: QOLNeurologicConditions
    define "SDE Sex":
      SDE."SDE Sex"
Logic Definition | Library Name: QOLNeurologicConditions
    define "PROMIS 10 Global Health":
      ( [ObservationScreeningAssessment: "Global Health 10 (LOINC)"] PROMISAssessment
          where PROMISAssessment.effective.toInterval ( ) is not null
            and PROMISAssessment.value is not null
            and PROMISAssessment.status ~ 'final'
      )
Logic Definition | Library Name: QOLNeurologicConditions
    define "Encounters With Neurologic Disorders During ID Period":
      ( [Encounter: "Office Visit"]
        union [Encounter: "Outpatient Consultation"]
        union [Encounter: "Online Evaluation and Management Encounters"]
        union [Encounter: "Telephone Visits All"] ) ValidEncounter
        where ValidEncounter."encounterDiagnosis" ( ).code in "Neurologic Disorders"
Logic Definition | Library Name: QOLNeurologicConditions
    define "Outpatient Encounters With Neurologic Disorders During ID Period":
      "Encounters With Neurologic Disorders During ID Period"
Logic Definition | Library Name: QOLNeurologicConditions
    define "Denominator Identification Period":
      Interval[start of "Measurement Period" - 14 months, start of "Measurement Period" - 2 months )
Logic Definition | Library Name: QOLNeurologicConditions
    define "First Index PROMIS Assessment Score":
      First("PROMIS 10 Global Health" PROMISAssessment
          with "Outpatient Encounters With Neurologic Disorders During ID Period" QualifyingEncounter
            such that PROMISAssessment.effective.toInterval() starts during day of "Denominator Identification Period"
          sort by start of effective.toInterval()
      ).value as Integer
Logic Definition | Library Name: QOLNeurologicConditions
    define "First Index PROMIS Assessment With Encounter During ID Period":
      First("PROMIS 10 Global Health" PROMISAssessment
          with "Outpatient Encounters With Neurologic Disorders During ID Period" QualifyingEncounter
            such that PROMISAssessment.effective.toInterval() starts during day of "Denominator Identification Period"
          sort by start of effective.toInterval()
      )
Logic Definition | Library Name: QOLNeurologicConditions
    define "Measure Assessment Period":
      "First Index PROMIS Assessment With Encounter During ID Period" FirstIndexAssessment
        let YearAfterIndexAssessment: date from start of FirstIndexAssessment.effective.toInterval ( ) + 12 months
        return Interval[YearAfterIndexAssessment - 60 days, YearAfterIndexAssessment + 60 days]
Logic Definition | Library Name: QOLNeurologicConditions
    define "Last PROMIS Assessment":
      Last("PROMIS 10 Global Health" PROMISAssessment
          where start of PROMISAssessment.effective.toInterval() during day of "Measure Assessment Period"
          sort by start of effective.toInterval()
      ).value as Integer
Logic Definition | Library Name: QOLNeurologicConditions
    define "Last PROMIS Same Or Higher Score Compared To First PROMIS":
      ( "First Index PROMIS Assessment Score" IndexScore
          with "Last PROMIS Assessment" MeasureAssessmentScore
            such that MeasureAssessmentScore >= IndexScore
      ) is not null
Logic Definition | Library Name: QOLNeurologicConditions
    define "Numerator":
      "Last PROMIS Same Or Higher Score Compared To First PROMIS"
Logic Definition | Library Name: QOLNeurologicConditions
    define "Age 18 Or Older At Time Of First PROMIS":
      AgeInYearsAt(date from start of "First Index PROMIS Assessment With Encounter During ID Period".effective) >= 18
Logic Definition | Library Name: QOLNeurologicConditions
    define "Initial Population":
      "Age 18 Or Older At Time Of First PROMIS"
Logic Definition | Library Name: QOLNeurologicConditions
    define "Denominator":
      "Initial Population"
Logic Definition | Library Name: QOLNeurologicConditions
    define "SDE Payer":
      SDE."SDE Payer"
Logic Definition | Library Name: QOLNeurologicConditions
    define "SDE Ethnicity":
      SDE."SDE Ethnicity"
Logic Definition | Library Name: QOLNeurologicConditions
    define "Patient Expired":
      Patient.deceased as DateTime on or before end of "Measure Assessment Period"
Logic Definition | Library Name: QOLNeurologicConditions
    define "Second PROMIS Not Collected":
      not exists ( ( "PROMIS 10 Global Health" PROMISAssessment
            where start of PROMISAssessment.effective.toInterval ( ) during day of "Measure Assessment Period"
            sort by start of effective.toInterval ( )
        )
      )
Logic Definition | Library Name: QOLNeurologicConditions
    define "Denominator Exclusion":
      "Patient Expired"
        or "Second PROMIS Not Collected"
Logic Definition | Library Name: QOLNeurologicConditions
    define "SDE Race":
      SDE."SDE Race"
Logic Definition | Library Name: CQMCommon
    /*
    @description: Returns the Condition resources referenced by the diagnosis element of the Encounter
    */
    define fluent function encounterDiagnosis(Encounter Encounter ):
      Encounter.reasonReference D
        return singleton from (([ConditionEncounterDiagnosis] union [ConditionProblemsHealthConcerns]) C where D.references(C.id))
Logic Definition | Library Name: QICoreCommon
    /*
    @description: Returns true if the given reference is to the given resourceId
    @comment: Returns true if the `resourceId` parameter exactly equals the tail of the given reference.
    NOTE: This function assumes resources from the same source server.
    */
    define fluent function references(reference Reference, resourceId String):
      resourceId = Last(Split(reference.reference, '/'))
Logic Definition | Library Name: FHIRHelpers
    define function ToString(value uri): value.value
Logic Definition | Library Name: FHIRHelpers
    /*
    @description: Converts the given [Period](https://hl7.org/fhir/datatypes.html#Period)
    value to a CQL DateTime Interval
    @comment: If the start value of the given period is unspecified, the starting
    boundary of the resulting interval will be open (meaning the start of the interval
    is unknown, as opposed to interpreted as the beginning of time).
    */
    define function ToInterval(period FHIR.Period):
        if period is null then
            null
        else
            if period."start" is null then
                Interval(period."start".value, period."end".value]
            else
                Interval[period."start".value, period."end".value]
Logic Definition | Library Name: FHIRHelpers
    /*
    @description: Converts the given FHIR [Coding](https://hl7.org/fhir/datatypes.html#Coding) value to a CQL Code.
    */
    define function ToCode(coding FHIR.Coding):
        if coding is null then
            null
        else
            System.Code {
              code: coding.code.value,
              system: coding.system.value,
              version: coding.version.value,
              display: coding.display.value
            }
Terminology
Code System | Description: Code system SNOMEDCT Resource: http://snomed.info/sct Canonical URL: `http://snomed.info/sct`
Value Set | Description: Value set Global Health 10 (LOINC) Resource: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1034.595 Canonical URL: `http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1034.595`
Value Set | Description: Value set Office Visit Resource: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113883.3.464.1003.101.11.1005 Canonical URL: `http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113883.3.464.1003.101.11.1005`
Value Set | Description: Value set Outpatient Consultation Resource: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113883.3.464.1003.101.11.1040 Canonical URL: `http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113883.3.464.1003.101.11.1040`
Value Set | Description: Value set Online Evaluation and Management Encounters Resource: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1034.539 Canonical URL: `http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1034.539`
Value Set | Description: Value set Telephone Visits All Resource: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1260.161 Canonical URL: `http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1260.161`
Value Set | Description: Value set Neurologic Disorders Resource: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1034.640 Canonical URL: `http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1034.640`
Value Set | Description: Value set Payer Type Resource: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.114222.4.11.3591 Canonical URL: `http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.114222.4.11.3591`
Direct Reference Code | Display: Male (finding) Code: 248153007 System: `http://snomed.info/sct`
Direct Reference Code | Display: Female (finding) Code: 248152002 System: `http://snomed.info/sct`
Dependencies
Dependency | Description: QICore model information Resource: http://hl7.org/fhir/Library/QICore-ModelInfo Canonical URL: `http://hl7.org/fhir/Library/QICore-ModelInfo`
Dependency | Description: Library SDE Resource: https://madie.cms.gov/Library/SupplementalDataElements|5.1.000 Canonical URL: `https://madie.cms.gov/Library/SupplementalDataElements|5.1.000`
Dependency | Description: Library FHIRHelpers Resource: https://madie.cms.gov/Library/FHIRHelpers|4.4.000 Canonical URL: `https://madie.cms.gov/Library/FHIRHelpers|4.4.000`
Dependency | Description: Library QICoreCommon Resource: https://madie.cms.gov/Library/QICoreCommon|4.0.000 Canonical URL: `https://madie.cms.gov/Library/QICoreCommon|4.0.000`
Dependency | Description: Library CQMCommon Resource: https://madie.cms.gov/Library/CQMCommon|4.1.000 Canonical URL: `https://madie.cms.gov/Library/CQMCommon|4.1.000`
Data Requirements
Data Requirement | Type: Patient Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-patient Must Support Elements: extension, url, deceased
Data Requirement | Type: Observation Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-observation-screening-assessment Must Support Elements: value, effective
Data Requirement | Type: Observation Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-observation-screening-assessment Must Support Elements: code, effective, value, status, status.value Code Filter(s): Path: code ValueSet: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1034.595
Data Requirement | Type: Condition Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-condition-encounter-diagnosis
Data Requirement | Type: Condition Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-condition-problems-health-concerns
Data Requirement | Type: Encounter Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-encounter Must Support Elements: type Code Filter(s): Path: type ValueSet: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113883.3.464.1003.101.11.1005
Data Requirement | Type: Encounter Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-encounter Must Support Elements: type Code Filter(s): Path: type ValueSet: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113883.3.464.1003.101.11.1040
Data Requirement | Type: Encounter Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-encounter Must Support Elements: type Code Filter(s): Path: type ValueSet: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1034.539
Data Requirement | Type: Encounter Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-encounter Must Support Elements: type Code Filter(s): Path: type ValueSet: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.113762.1.4.1260.161
Data Requirement | Type: Coverage Profile(s): http://hl7.org/fhir/us/qicore/StructureDefinition/qicore-coverage Must Support Elements: type, period Code Filter(s): Path: type ValueSet: http://cts.nlm.nih.gov/fhir/ValueSet/2.16.840.1.114222.4.11.3591
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