- Eleven quality measures have been developed, in the form of a checklist, by an MDA-supported American Academy of Neurology workgroup; their purpose is to evaluate and improve the care delivered to people with ALS.
- The measures address medication, cognitive and behavioral screening, symptom relief, respiratory support, nutrition concerns, modes of communication, safety and end-of-life planning.
- MDA's chief medical and scientific officer and six directors of MDA/ALS centers were part of the AAN workgroup that developed the measures.
The American Academy of Neurology (AAN) has published new quality measures for the care of patients with amyotrophic lateral sclerosis (ALS). The measures, which are based in part on the AAN's 2009 ALS care guidelines, are designed to help researchers measure the quality of care being delivered to ALS patients and set goals for its improvement.
The new checklist, or measurement set, was developed by an MDA-supported, interdisciplinary, expert panel work group representing physicians, patient advocates and other relevant stakeholders concerned about the care of people with ALS. The measures are designed to address gaps in patient care and encourage utilization of evidence-based therapies.
Among the members of the AAN ALS Measure Development Work Group were Valerie Cwik, MDA's executive vice president and chief medical and scientific officer, and six current or former directors of MDA/ALS centers, including:
- Benjamin Brooks, director of the MDA/ALS Center at Carolinas Medical Center in Charlotte, N.C.;
- Gregory Carter, former director of the MDA/ALS Center at Providence/St. Peter Hospital in Olympia, Wash.;
- Carlayne Jackson, director of the MDA/ALS Center at the University of Texas Health Science Center in San Antonio;
- Robert Miller, director of the MDA/ALS Center at California Pacific Medical Center in San Francisco;
- Hiroshi Mitsumoto, director of the MDA/ALS Center at Columbia University Medical Center in New York; and
- Steven Ringel, director of the MDA/ALS Center at the University of Colorado Health Sciences Center in Denver.
"The AAN ALS Quality Measures dovetail nicely with MDA’s recently launched Neuromuscular Disease Registry," Cwik said. "The measures are aimed at improving care, clinical outcomes and quality of life for those living with ALS, and MDA is pleased to have supported and participated in the effort to develop this important tool."
A paper describing the quality measures and their development was published Dec. 10, 2013, in Neurology, and can be accessed without charge.
Quality measures cover support, safety and planning
Here are the 11 ALS quality measures recommended by the AAN. The measures, expressed as a checklist, address supportive care, safety and planning for complex needs using a patient-centered approach to decision-making.
- ALS multidisciplinary care plan developed or updated — measured by the percentage of patients for whom a multidisciplinary care plan was developed or updated at least once annually
- Disease-modifying pharmacotherapy for ALS discussed — measured by the percentage of patients with whom the clinician discussed disease-modifying pharmacotherapy (riluzole) to slow disease progression at least once annually
- Cognitive and behavioral impairment screening — measured by the percentage of patients who are screened at least once annually for cognitive and behavioral impairment
- Falls querying — measured by the percentage of visits during which patients were asked about falls within the past year
- Symptomatic treatment offered — measured by the percentage of patients offered treatment for pseudobulbar affect (uncontrolled laughing or crying episodes), sialorrhea (drooling) and other ALS-related symptoms
- Respiratory insufficiency querying and referral for pulmonary function testing — measured by the percentage of patients who were questioned about symptoms of respiratory insufficiency and referred for pulmonary function testing
- Noninvasive ventilation treatment for respiratory insufficiency discussed — measured by the percentage of patients with respiratory insufficiency with whom the clinician discussed treatment options for noninvasive respiratory support, such as noninvasive ventilation and assisted cough, at least once annually
- Screening for dysphagia, weight loss and impaired nutrition — measured by the percentage of patients who were screened at least every three months for dysphagia (difficulty swallowing), weight loss or impaired nutrition, with results documented in the medical record
- Nutritional support offered — measured by the percentage of patients with dysphagia, weight loss or impaired nutrition who were offered general nutritional support or support via a gastrostomy tube (feeding tube) at least once annually
- Communication support referral — measured by the percentage of patients with dysarthria (difficulty speaking) who were offered a referral to a speech-language pathologist for an augmentative/alternative communication evaluation at least once annually
- Life planning assistance — measured by the percentage of patients who were offered end-of-life planning, such as advance directives, invasive ventilation and hospice, at least once annually
"The addition of practical and meaningful quality measures for the care of patients with ALS may raise the standard of care and lead to the desired outcome, an increased life expectancy with an enhanced quality of life," the authors of the measures write in their Dec. 10 publication.