Congenital cataract and contact lenses

Abstract: Purpose: Having a child with congenital cataract is associated with a huge responsibility for the parents in terms of the outcome of their child’s visual development. If the cataract is not removed the condition will lead to lifelong visual impairment and the surgery is preferably preformed within the first three months of life. After the surgery, contact lenses are fitted to manage the hyperopia. The parents are taught how to insert and remove the contact lenses every day. Also, eye drops with steroids are administered by the parents up to eight times a day with the contact lens in place on the eye. In Sweden, the care for children with congenital cataract is centralized to two hospitals, which means long distance travel for many families. The follow-up treatment goes on for many years, with frequent visits to the eye hospital, and secondary complications are not uncommon. The aim of this thesis is two- fold; the first part aims to provide more information on how the topical eye drops affect the contact lenses, and the second part is to explore parents’ experiences regarding the care in order to find possible areas for improvement. Methods: For the first part, which consists of two quantitative studies, contact lenses were collected from patients at St. Erik Eye Hospital. To develop a method for analysing used contact lenses, bandage lenses from adult patients were collected; this method was then used in the second study where paediatric contact lenses worn by infants after congenital cataract surgery were analysed. In both studies, reference lenses used without medication were also collected. Drug and preservative uptake, as well as surface morphology changes, were monitored by a combination of UV-Vis spectroscopy, LDI-MS, 1H-NMR and SEM. In the second part, a qualitative study design was used. Semi-structured in-depth interviews were conducted with parents of children operated on for congenital cataract before three months of age, when the child was between 12 and 24 months old. The interviews were analysed with content analysis with an inductive approach and they covered two different domains, which were analysed separately. The first domain was about the parents’ experiences of the information given before the surgery, the surgery itself and the subsequent care, and the second covered the parents’ adaptation to their new life situation. Results: In the contact lens studies, no drug or preservative uptake could be detected in the bandage lenses or in the paediatric contact lenses. The bandage lens surface was not altered by the drugs. However, the surface on the paediatric lenses was fractioned when the contact lenses were used together with eye drops containing dexamethasone. In the qualitative studies, the results in the first domain were on a latent level, the highest abstract level of content analysis, resulting in three themes: living in a turbulent time before the diagnosis, coping during the time of initial treatment, and managing the responsibility of their child’s visual development. In the second domain the result was more on a manifest level, where three categories emerged from the data: trying to survive during a chaotic time; adapting to a different normal; being in need of support. Conclusions: A depot effect of pharmaceutical agents in the contact lenses of any clinical significance is unlikely. Therefore, the number of drops given after surgery should remain the same regardless of whether or not the child has contact lenses. The surface of the contact lenses is altered by the eye drops, which may increase the risk of microbial adhesion, and so it is recommended that contact lenses should be replaced once a month throughout the course of anti-inflammatory eye drop treatment. Regarding the parents’ wellbeing, the qualitative studies showed that the early post-diagnostic stage was the most critical. Much of the parents’ concern was linked to poor information on the condition and treatment plan in the time between the preliminary diagnosis at the maternity ward and the visit to the eye hospital weeks later. Their need for psychosocial support varied greatly and early identification of those in need of specialized counselling is important.