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- Gyllén, Jenny, 1968, et al.
(författare)
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PECARE: Parental Feedback to Improve Congenital Cataract Care in Sweden
- 2023
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Ingår i: Journal of Pediatric Ophthalmology & Strabismus. - : SLACK, Inc.. - 0191-3913 .- 1938-2405. ; 60:4, s. 288-294
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To analyze non-directed parental feedback to health care providers responsible for pediatric cataract care in Sweden. Methods: A directed content analysis was used to analyze data consisting of text representing free comments provided by 40 parents. A deductive approach was employed by applying the model of balancing the child's inability and ability, which includes the categories mastering, collaborating, facilitating, and adapting. Results: Parents lacked piloting and self-management support. They experienced an absence of partnership with the health care team and not being taken seriously. They also felt abandoned by health care, resulting in emotional distress. Parents highlighted the impact of their social network and the challenges involved in accepting and adapting to the changes in everyday life. Conclusions: This study emphasizes the consequences of the lack of a caring partnership with health care professionals. Because parents act as mediators of care to the child with congenital cataract, persistence on the part of parents and a family-centered approach are essential for the child's visual development.
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| 2. |
- Magnusson, Gunilla, 1968, et al.
(författare)
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The Paediatric Cataract Register (PECARE): an overview of operated childhood cataract in Sweden and Denmark
- 2018
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Ingår i: Acta Ophthalmologica. - : Wiley. - 1755-375X .- 1755-3768. ; 96:1, s. 51-55
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To report basic epidemiological data concerning surgically treated childhood cataract in Sweden and Denmark. Methods: Data were derived from the Paediatric Cataract Register (PECARE), a binational, web-based surgical register representing Sweden and Denmark. All children operated before 8years of age between 1 January 2007 and 31 December 2013 were included. Age-specific prevalence per 100000 population was calculated. Results: A total 574 operations in 213 boys (51.7%) and 199 girls (48.3%), altogether 412 children, were registered, the vast majority (n=395/412; 95.9%) being individuals with congenital/infantile cataract. Of these 412, a total of 294 (147 boys and 147 girls) were Swedish and 118 (66 boys and 52 girls) were Danish. The age-specific prevalence of operated cataract in Sweden was 31/100 000 and in Denmark 28/100 000. In 454 of 574 eyes (79.1%), the cataract was dense. Altogether, 266 of 574 (46.3%) were operated during the first year of life, 193 during the first 12weeks representing 33.6% of all operations. A primary intraocular lens (IOL) implantation was done in altogether 411 of 574 eyes (71,6%). In total, 210 unilateral cataract operations (210/574; 36.6%) were performed. Persistent fetal vasculature (PFV) was present in 64 of 193 (33.1%) of those with a congenital unilateral cataract. In 84 individuals (84/395; 21.3%) with congenital or infantile cataract, a coexisting disorder was found. Conclusion: The age-specific binational prevalence of operated congenital/infantile cataract in Sweden and Denmark is 30/100000. About half of the operations are performed within the first year of life, one-third within the first 3months. In our study population, a primary IOL was implanted in the majority of cases. © 2017 Acta Ophthalmologica Scandinavica Foundation. Published by John Wiley & Sons Ltd
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| 3. |
- Nyström, Alf, et al.
(författare)
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The Swedish National Pediatric Cataract Register (PECARE): incidence and onset of postoperative glaucoma
- 2020
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Ingår i: Acta Ophthalmologica. - : Wiley. - 1755-375X .- 1755-3768. ; 98:7, s. 654-661
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Tidskriftsartikel (refereegranskat)abstract
- Purpose The aim was to report cumulative incidence and time of onset of postoperative glaucoma in a paediatric early cataract surgery cohort. Methods Data were retrieved from the Pediatric Cataract Register (PECARE), a prospective register of Swedish cataract operations before 8 years of age. All eyes with surgery between January 2007 and December 2014 and a registered follow-up were included. Cataracts caused by uveitis, trauma or coexisting congenital glaucoma were excluded. Glaucoma was defined as early onset if diagnosed within a year after surgery and late onset if diagnosed later. Results The study included 288 eyes in 207 children (106 girls), 81 with bilateral and 126 with unilateral cataracts, with a mean follow-up of 3.31 +/- 1.77 years. Of the 288, 168 (58.3%) had surgery before 3 months of age; most of these 92.3% (155/168) were defined as dense, 208 (72.2%) were below 1 year of age. Cumulative incidence of surgically treated glaucoma among individuals was 23.7% (49/207). Median time to glaucoma onset was 0.91 years (range: 0.05-4.97 years) for eyes. Early-onset glaucoma was found in 98 % (63/64), and late onset in 2% (1/64). Conclusion In this paediatric cataract cohort, a majority of eyes had surgery before 3 months of age (58.3%). Secondary glaucoma-onset peaked within the first postoperative year, with a cumulative incidence of 23.7%. Surgery performed after the first month of life, resulted in a lower glaucoma rate. Long-term follow-up will reveal whether the low rate of late-onset glaucoma with early surgery will last, and if so, the consequences.
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| 4. |
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| 5. |
- Wackerberg, D., et al.
(författare)
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Analysis of age at detection and outcomes of dense unilateral congenital cataract surgery for children on the paediatric cataract register
- 2023
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 112:2, s. 277-285
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Tidskriftsartikel (refereegranskat)abstract
- AimAnalysis of age at time of detection and surgery of dense unilateral cataract and investigation of best-corrected visual acuity (BCVA) in a nationwide register-based cohort study, based on the routine of maternity ward eye screening. MethodsData were derived from the Paediatric Cataract Register (PECARE). All children (n = 54) diagnosed with dense congenital unilateral cataract between January 2007 and September 2014 who had surgery before 1 year of age, and for whom 5-year follow-up records were available, were included. ResultsThe majority, 35/54 (65%), were detected and operated on before age 6 weeks and 30/35 (86%) were referred from maternity wards. Visual acuity (VA) >= 0.5 (decimal, 0.3 logMAR) was found in 7/53 (13%) of the cohort at age 5 years; further, 19 children achieved VA >= 0.1 (decimal, 1.0 logMAR) (36%) and 19 children VA < 0.05 (decimal, 1.30 logMAR) (36%). Ten-year follow-up records were available for 17/53 (32%) children; 1/17 (6%) achieved VA >= 0.5 (decimal, 0.3 logMAR), 4/17 (24%) VA >= 0.3-<0.5 (decimal, 0.52-0.30 logMAR), 3/17 (18%) VA >= 0.05-0.1 (decimal, 1.30-1.0 logMAR) and 10/17 (59%) VA < 0.05 (decimal, 1.30 logMAR). ConclusionA total of 90% of the children were detected with cataract within 100 days of birth and 80% were operated on within this period. This study showed better visual acuity in those treated for dense unilateral cataracts than previously reported in an earlier Swedish cohort study.
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