Frontiers in Neurology (Jun 2023)

Iranian clinical practice guideline for amyotrophic lateral sclerosis

  • Reza Boostani,
  • Nahid Olfati,
  • Hosein Shamshiri,
  • Hosein Shamshiri,
  • Zanireh Salimi,
  • Zanireh Salimi,
  • Farzad Fatehi,
  • Farzad Fatehi,
  • Seyed Arya Hedjazi,
  • Atefeh Fakharian,
  • Atefeh Fakharian,
  • Atefeh Fakharian,
  • Majid Ghasemi,
  • Ali Asghar Okhovat,
  • Ali Asghar Okhovat,
  • Keivan Basiri,
  • Keivan Basiri,
  • Bahram Haghi Ashtiani,
  • Behnaz Ansari,
  • Behnaz Ansari,
  • Behnaz Ansari,
  • Gholam Reza Raissi,
  • Gholam Reza Raissi,
  • Seyed Ahmadreza Khatoonabadi,
  • Payam Sarraf,
  • Payam Sarraf,
  • Sara Movahed,
  • Sara Movahed,
  • Akram Panahi,
  • Akram Panahi,
  • Bentolhoda Ziaadini,
  • Bentolhoda Ziaadini,
  • Mohammad Yazdchi,
  • Mohammad Yazdchi,
  • Jalal Bakhtiyari,
  • Shahriar Nafissi,
  • Shahriar Nafissi

DOI
https://doi.org/10.3389/fneur.2023.1154579
Journal volume & issue
Vol. 14

Abstract

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Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegeneration involving motor neurons. The 3–5 years that patients have to live is marked by day-to-day loss of motor and sometimes cognitive abilities. Enormous amounts of healthcare services and resources are necessary to support patients and their caregivers during this relatively short but burdensome journey. Organization and management of these resources need to best meet patients' expectations and health system efficiency mandates. This can only occur in the setting of multidisciplinary ALS clinics which are known as the gold standard of ALS care worldwide. To introduce this standard to the care of Iranian ALS patients, which is an inevitable quality milestone, a national ALS clinical practice guideline is the necessary first step. The National ALS guideline will serve as the knowledge base for the development of local clinical pathways to guide patient journeys in multidisciplinary ALS clinics. To this end, we gathered a team of national neuromuscular experts as well as experts in related specialties necessary for delivering multidisciplinary care to ALS patients to develop the Iranian ALS clinical practice guideline. Clinical questions were prepared in the Patient, Intervention, Comparison, and Outcome (PICO) format to serve as a guide for the literature search. Considering the lack of adequate national/local studies at this time, a consensus-based approach was taken to evaluate the quality of the retrieved evidence and summarize recommendations.

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