Abstract
Background: A first adult appointment is only one part of continued care for young people with sickle cell disease (SCD). Saudi adult-service publications provide context but do not measure the paediatric-to-adult transfer interval.
Objective: To examine transition measures and propose a bounded Saudi evaluation that separates transfer, sustained engagement and patient-important outcomes. Sources and approach: We conducted purposive PubMed and SciSpace-assisted searches in a targeted literature search and checked cited identities and five accessible pivotal full texts. This is a critical narrative review, not a systematic review or Saudi guideline. Synthesis: US consensus standards combine adult visits with identification of an adult SCD medical home, but have not been validated as Saudi thresholds. In a US cohort restricted to people reaching partner adult centres, a transfer gap of at least six months was associated with more inpatient and emergency use; selection and case mix limit causal inference. Three readiness-score cohorts did not consistently predict transfer or utilization. A US randomized trial found a statistically supported but modest quality-of-life score contrast from community health worker support, below its prespecified large-effect threshold.
Conclusion: A Saudi evaluation should enumerate eligible young people, link paediatric and adult encounters, retain missing and out-of-network care, and pair time-to-contact with sustained visits, patient experience, safety and clinical outcomes. Indicators require local co-design, feasibility and validity testing before they become performance targets.
Keywords
- sickle cell disease
- transition to adult care
- continuity of care
- quality measurement
- Saudi Arabia
- adolescent health
- health services research
Declarations
- Ethics approval
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- Consent to participate
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- Consent for publication
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- Funding
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- Competing interests
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- Author contributions
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- Data availability
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- Registration
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- Acknowledgements
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