Introduction and methods of the evidence-based guidelines for the diagnosis and management of autism spectrum disorder by the Italian National Institute of Health

Gian Paolo Morgano, Francesca Fulceri, Franco Nardocci, Corrado Barbui, Giovanni Ostuzzi, Davide Papola, Laura Maria Fatta, Alice Josephine Fauci, Daniela Coclite, Antonello Napoletano, Franco De Crescenzo, Gian Loreto D'Alò, Laura Amato, Michela Cinquini, Primiano Iannone, Holger Jens Schünemann, Maria Luisa Scattoni, Massimo Molteni, on behalf of the Italian National Institute of Health guidelines working group on Autism Spectrum Disorder

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Autism Spectrum Disorder (ASD) is a neuro-developmental disorder that affects communication and behavior with a prevalence of approximately 1% worldwide. Health outcomes of interventions for ASD are largely Participant Reported Outcomes (PROs). Specific guidelines can help support the best care for people with ASD to optimize these health outcomes but they have to adhere to standards for their development to be trustworthy. Objective: The goal of this article is to describe the new methodological standards of the Italian National Institute of Health and novel aspects of this guideline development process. This article will serve as a reference standard for future guideline development in the Italian setting. Methods: We applied the new standards of the Italian National Institute of Health to the two guidelines on diagnosis and management of children/adolescents and adults with ASD, with a focus on the scoping, panel composition, management of conflict of interest, generation and prioritization of research questions, early stakeholders' involvement, and PROs. Recommendations are based on the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Evidence-to-Decision frameworks. Results: Following a public application process, the ISS established two multidisciplinary panels including people with ASD and/or their caregivers. Seventy-nine research questions were identified as potentially relevant for the guideline on children and adolescents with ASD and 31 for the one on adults with ASD. Questions deemed to have the highest priority were selected for inclusion in the guidelines. Other stakeholders valued their early involvement in the process which will largely focus on PROs. The panels then successfully piloted the development of recommendations using the methodological standards and process set by the ISS with a focus on PROs. Conclusions: In this article, we describe the development of practice guidelines that focus on PROs for the diagnosis and management of ASD based on novel methods for question prioritization and stakeholder involvement. The recommendations allow for the adoption or adaptation to international settings.

Original languageEnglish
Article number81
Number of pages12
JournalHealth and Quality of Life Outcomes
Volume18
Issue number1
DOIs
Publication statusPublished - Mar 26 2020

Keywords

  • Autism Spectrum disorder
  • Diagnosis
  • GRADE approach
  • Guideline
  • Healthcare decision
  • Italian national guidelines system
  • Italian National Institute of health
  • Recommendations
  • Treatment

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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