Article type
Abstract
Background
The 2021 World Health Organization (WHO) CureAll framework calls for globally adapted childhood cancer guidelines. In resource limited settings, limited evidence is available to address known contextual barriers (i.e., diagnostic limitations, cytotoxic stockouts, etc). ARIA addresses contextual guidance gaps via a globally inclusive approach integrating evidence- and consensus-based methods.
Methods
Each disease-based guideline is developed in four phases. Strategy: A working group assembles through consultation between ARIA founding professional societies/organizations (SIOP, IPSO, PROS, CCI, St. Jude Global). Current standard(s) of care is defined by review of completed clinical trials. In parallel, systematic literature search to evaluate outcomes associated with adaptations to standard of care is completed. Existing evidence is reviewed, critical barriers to care are identified and disease-specific treatment strategies—stratified based upon resource access—are developed for all contexts. When available, recommendations based upon published evidence are used. Delphi statements are developed when evidence from trials or historic data is lacking. Consensus: Adapted Management Guidelines (AMGs) are reviewed by a representative panel comprised of healthcare professionals nominated by 64 childhood cancer professional societies/collaborative groups. Each panel includes representation from all WHO regions, and curated to ensure gender, income level, multidisciplinary and clinical experience balance. Panelists complete an iterative review/adaptation process through three rounds of survey-based review/Delphi. Validation: Two steps completed in parallel: (1) review by external expert reviewers to evaluate for over-adaptation; (2) integration of patient/family input via focus groups. Dissemination: Final AMG upload to online ARIA portal and shared across community platforms.
Results
602 healthcare workers worldwide, from 90 countries, currently participate in ARIA. 12 diseases are currently under development with the Hodgkin lymphoma pilot AMG completed. One additional guideline is in the validation phase, four in or starting the consensus phase and six in the strategy phase. Hodgkin lymphoma and low-grade glioma AMGs are on www.ariaguide.org in beta form (available online/offline).
Conclusions
The ARIA approach integrates existing evidence-based methods while recognizing biases in the evidence towards therapies designed for maximal resource settings. Through integration of rigorous consensus-based approaches and global representation, ARIA provides a trusted methodological framework for adaptation and a freely available eHealth dissemination platform.
The 2021 World Health Organization (WHO) CureAll framework calls for globally adapted childhood cancer guidelines. In resource limited settings, limited evidence is available to address known contextual barriers (i.e., diagnostic limitations, cytotoxic stockouts, etc). ARIA addresses contextual guidance gaps via a globally inclusive approach integrating evidence- and consensus-based methods.
Methods
Each disease-based guideline is developed in four phases. Strategy: A working group assembles through consultation between ARIA founding professional societies/organizations (SIOP, IPSO, PROS, CCI, St. Jude Global). Current standard(s) of care is defined by review of completed clinical trials. In parallel, systematic literature search to evaluate outcomes associated with adaptations to standard of care is completed. Existing evidence is reviewed, critical barriers to care are identified and disease-specific treatment strategies—stratified based upon resource access—are developed for all contexts. When available, recommendations based upon published evidence are used. Delphi statements are developed when evidence from trials or historic data is lacking. Consensus: Adapted Management Guidelines (AMGs) are reviewed by a representative panel comprised of healthcare professionals nominated by 64 childhood cancer professional societies/collaborative groups. Each panel includes representation from all WHO regions, and curated to ensure gender, income level, multidisciplinary and clinical experience balance. Panelists complete an iterative review/adaptation process through three rounds of survey-based review/Delphi. Validation: Two steps completed in parallel: (1) review by external expert reviewers to evaluate for over-adaptation; (2) integration of patient/family input via focus groups. Dissemination: Final AMG upload to online ARIA portal and shared across community platforms.
Results
602 healthcare workers worldwide, from 90 countries, currently participate in ARIA. 12 diseases are currently under development with the Hodgkin lymphoma pilot AMG completed. One additional guideline is in the validation phase, four in or starting the consensus phase and six in the strategy phase. Hodgkin lymphoma and low-grade glioma AMGs are on www.ariaguide.org in beta form (available online/offline).
Conclusions
The ARIA approach integrates existing evidence-based methods while recognizing biases in the evidence towards therapies designed for maximal resource settings. Through integration of rigorous consensus-based approaches and global representation, ARIA provides a trusted methodological framework for adaptation and a freely available eHealth dissemination platform.