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Prevalence of Severe Visual Disability Among Preterm Children With Retinopathy of Prematurity and Association With Adherence to Best Practice Guidelines
Karolinska Inst, Div Pediat, Dept Clin Sci Intervent & Technol, Stockholm, Sweden;Karolinska Univ Hosp, Dept Neonatal Med, Stockholm, Sweden;Swedish Neonatal Qual Registry, Umea, Sweden.
Gothenburg Univ, Sahlgrenska Acad, Dept Ophthalmol, Inst Neurosci & Physiol, Gothenburg, Sweden.
Karolinska Inst, Div Pediat, Dept Clin Sci Intervent & Technol, Stockholm, Sweden;Karolinska Univ Hosp, Dept Neonatal Med, Stockholm, Sweden.
St Erik Eye Hosp, Dept Pediat Ophthalmol & Strabismus, Stockholm, Sweden.
Vise andre og tillknytning
2019 (engelsk)Inngår i: JAMA NETWORK OPEN, ISSN 2574-3805, Vol. 2, nr 1, artikkel-id e186801Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

IMPORTANCE Retinopathy of prematurity (ROP) can cause severe visual disability even in high-resource settings. A better understanding of the prevalence and processes leading to ROP-induced severe visual impairment may help health care professionals design preventive measures. OBJECTIVES To determine the prevalence of severe visual disability among children born preterm in Sweden, evaluate adherence to best practice, and determine the health system's structural capacity. DESIGN, SETTING, AND PARTICIPANTS Population-based, nationwide cohort study of 1 310 227 children born between January 1, 2004, and December 31, 2015, in Sweden, of whom 17 588 (1.3%) were born very preterm (<32 weeks of gestation). Children born preterm with a verified diagnosis of severe visual disability had their medical records reviewed for evaluation of ROP screening, diagnosis, and treatment. In addition, a questionnaire on structural capacity was sent to all ophthalmology departments. EXPOSURES Stages 4 and 5 ROP. MAIN OUTCOMES AND MEASURES The primary outcome was prevalence of severe visual disability (visual acuity similar to 20/200 for both eyes) associated with ROP stages 4 and 5. Secondary outcomes included adherence to national ROP guidelines using a predefined protocol with 15 key performance indicators for screening, diagnosis, and treatment; assessment of whether visual disability was deemed avoidable; and examination of structural capacity, including information on equipment and facilities, staffing, and patients. RESULTS Seventeen children (10 boys; mean [range] birth weight, 756 [454-1900] g; mean [range] gestational age, 25 [22-33] weeks) became severely visually disabled because of ROP, corresponding to a prevalence of 1 in 1000 very preterm infants (< 32 weeks of gestational age) and 1 in 77 000 for all live births. Severe visual impairment was considered potentially avoidable in 11 of 17 affected children (65%) owing to untimely or no screening, missed diagnosis, or untimely and suboptimal treatment. Large variations in infrastructure (facilities, guidelines, staffing, and annual patient numbers) were also identified as potential contributors to these findings. CONCLUSIONS AND RELEVANCE Retinopathy of prematurity still causes severe visual disability in Sweden, resulting in 1 affected infant per 1000 very preterm births. In most of these infants, noncompliance with best practice was identified, indicating that a significant proportion could have been avoided.

sted, utgiver, år, opplag, sider
AMER MEDICAL ASSOC , 2019. Vol. 2, nr 1, artikkel-id e186801
HSV kategori
Identifikatorer
URN: urn:nbn:se:uu:diva-383210DOI: 10.1001/jamanetworkopen.2018.6801ISI: 000465422700045PubMedID: 30646195OAI: oai:DiVA.org:uu-383210DiVA, id: diva2:1317572
Tilgjengelig fra: 2019-05-23 Laget: 2019-05-23 Sist oppdatert: 2019-05-23bibliografisk kontrollert

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