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2020 MIPS Measure #386: Amyotrophic Lateral Sclerosis (ALS) Patient Care Preferences

Quality ID 386
High Priority Measure Yes
Specifications Registry
Measure Type Process
Specialty Neurology

Measure Description

Percentage of patients diagnosed with Amyotrophic Lateral Sclerosis (ALS) who were offered assistance in planning for end of life issues (e.g., advance directives, invasive ventilation, hospice) at least once annually



This measure is to be submitted a minimum of once per performance period for patients with a diagnosis of ALS during the performance period. This measure may be submitted by Merit-based Incentive Payment System (MIPS) eligible clinicians who perform the quality actions described in the measure based on the services provided and the measure-specific denominator coding. This measure is appropriate for use in outpatient and long term care (e.g., nursing home, ambulatory). For each of these settings, there should be documentation in the medical record(s) that advance care planning was discussed or documented.

Measure Submission Type:

Measure data may be submitted by individual MIPS eligible clinicians, groups, or third-party intermediaries. The listed denominator criteria are used to identify the intended patient population. The numerator options included in this specification are used to submit the quality actions as allowed by the measure. The quality-data codes listed do not need to be submitted by MIPS eligible clinicians, groups, or third-party intermediaries that utilize this modality for submissions; however, these codes may be submitted for those third-party intermediaries that utilize Medicare Part B claims data. For more information regarding Application Programming Interface (API), please refer to the Quality Payment Program (QPP) website.



All patients with a diagnosis of Amyotrophic Lateral Sclerosis (ALS)

Denominator Criteria (Eligible Cases):

Diagnosis for Amyotrophic Lateral Sclerosis (ICD-10-CM): G12.21, G12.23, G12.24, G12.25


Patient encounter during the performance period (CPT): 99201, 99202, 99203, 99204, 99205, 99211, 99212, 99213, 99214, 99215, 99304, 99305, 99306, 99307, 99308, 99309, 99310, 99318, 99324, 99325, 99326, 99327, 99328, 99334, 99335, 99336, 99337, 99341, 99342, 99343, 99345, 99348, 99349, 99350


Telehealth Modifier: GQ, GT, 95, POS 02



Patient in hospice at any time during the measurement period: G9758



Patients who were offered assistance in planning for end of life issues (e.g., advance directives, invasive ventilation, or hospice) at least once annually


Assistance with end of life issues – assessment of patient concerns, desires and needs relating to end of life issues. Bases on patient’s disease progression this may include discussions regarding invasive ventilation, advance directives and hospice.

Numerator Options:

Performance Met: Patient offered assistance with end of life issues during the measurement period (G9380)


Performance Not Met: Patient not offered assistance with end of life issues during the measurement period (G9382)



Palliative care should be adopted from the time of diagnosis. Many patients are not adequately informed about advance directives and end of life decision making and many hospice workers are not familiar with ALS. Management of the terminal phase of ALS is unsatisfactory in 33% - 61% of cases in Europe and only 8% of palliative care units are involved from the time of diagnosis. The current system of palliative care in the USA is highly decentralized. Between 60-88% of patients die in a medical facility in some countries and not at home, while over 58% of seriously ill ALS patients do not have hospice care. Approaches to end of life care vary widely and are not standardized either in timing or content.

Clinical Recommendation Statements

• Advance directives for palliative end-of-life care should be discussed early with the patient and carers, respecting the patient's social and cultural background.1

• Offer assistance in formulating an advance care directive. (GPP)2

• Review the patients’ wishes regarding their care and advance directives regularly. (Level II)3

• Re-discuss the patient’s preferences for life-sustaining treatments every 6 months. (GPP)2

• Initiate discussions on end-of-life issues whenever the patient asks or “opens the door” for end-of-life information and/or interventions. (GPP) 2Treat pain in ALS following accepted guidelines. (GPP)2

• Initiate early referral to hospice or home care teams well in advance of the terminal phase of ALS to facilitate the work of the hospice team. (GPP)2

• Discuss options for respiratory support and end-of-life issues if the patient has dyspnea, other symptoms of hypoventilation or VC <50%. (GPP)2

• Treat terminal dyspnea and/or pain with opioids alone or in combination with benzodiazepines if anxiety is present.(GPP)2


1. Andersen PM, Abrahams S, Borasio GD, et al. EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) - revised report of an EFNS task force. Eur J Neurol 2011; 19(3) 360-375 (GPP=Good Practice Point)

2. Andersen PM, Borasio GD, Dengler R, et al. EFNS task force on management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives. European J of Neurology 2005; 12:921-938 (GPP=Good Practice Point)

3. Heffernan C., Jenkinson C, Holmes T, et al. Management of respiration in MND/ALS patients: An evidence based review. Amyotrophic Lateral Sclerosis 2006; 7(1):5-15

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