A poor number of studies examined the impact of QoL in patients with JIA-U.
It is not infrequent that the uveitis appears as asymptomatic or the child does not perceive it, while it being in an advanced stage. Therefore, we are faced already with visual loss, or ocular complications to be managed and sometimes we have to resort to surgery.22
Most recent studies concern solely adult patients,8,23,24 contrary very few about children and teens and their parents. Our study is one of them and, to our knowledge, it is the only one to have a control group.
Analyzing the responses to the PedsQL questionnaire significant results emerged in all domains: PF, EF, SF, ScF. These results highlight that uveitis has a major impact on the quality of life and affects every aspect of the children’s life. Our results agree with most of other studies.10,25-28
In particular a study reviewed groups of children (and their parents) with visual impairment due to ocular conditions apart from the uveitis (and their parents) and found comments from 510 (44%) of 1163 children and 1078 (55%) of 1952 parents related with the QoL, such as psychosocial, impact on the school, expectations and frustrations, dependency, and participation.25 An other study conducted a semi-structured interview on 10 children and adolescents aged between 6 and their parents; impact on the school, social factors, and emotional reactions were investigated, considering clinical evidence and therapeutic strategies were practiced.26
A recent study had proven a worsening of overall parameters of the QoL among children with a visual impairment, as measured by the PedsQL, version 188.8.131.52
A series of factors JIA-U-related were contemplated how strongly impactful on the QoL in these patients.
These studies show that indeed uveitis is associated with worse physical and mental health-related quality of life in children because of additional important medical stressors in this population.10,28 Management of uveitis consists in complicated examinations, which can be frightening for children, and complex regimens of topical and systemic medications, which can be difficult to follow. Parents in fact report that children have difficulty understanding treatment regimens. Furthermore, children with uveitis may need to miss numerous school days for eye treatments and often may miss school for long periods because of complications. Many children report difficulty compensating for missed course work and this obviously has a negative impact on their academic performance. Absences from school result also in less opportunities to socialize with peers and loss of friends. These children have less time to spent with other children for eye examinations and treatments and often changes in vision affects the ability to play some sports and to take part in play and leisure activities. Furthermore, children find embarrassing to talk about their eye conditions with their peers and this contributes to the deterioration of interpersonal relationships. Uveitis and generally chronic illness of childhood can also lead to a slower development of autonomy, close relationships with parents and high levels of parental involvement. These children are vulnerable to being unable to manage their disease enough to ask for the help of parents even in adulthood. For all these reasons children with uveitis experience negative emotions as sadness, anxiety and anger for the future, according to the results of our study.
The American Academy of Pediatrics Section on Rheumatology and Section on Ophthalmology recommended then ophthalmology screenings every 3–4 months until 7 years of age to monitor the disease development, considering in the childhood the higher risk to develop uveitis for youngest with JIA.29
For the correct adherence to the therapy, attention and care of the family is fundamental.28
The chronic disease so had a strong impact on the child’s parents. A study showed a greater total stress score of mothers of children with JIA as measured by the PSI (235.4; 95% CI 218.5-252.3) than the mean total stress scores for mothers of normal children (222.8; 95% CI 221.4-224.2).30
Instead in our study, no significant results emerged on parenting distress by the PSI. Our hypothesis is that the SARS-Cov-2 pandemic may have impacted parental stress. In fact, several studies show an increase in parenting distress in the pandemic period.31-33 The main stressors for parents were having to reconcile work with family routine. Many parents worked from home, with related logistical problems and at the same time, due to the closure of schools, managing their children in the context of personal autonomy, management of meals, school activities, and free time. Further causes of stress were in many cases the loss of work and a direct experience with Covid-19. This would explain why from our data, parenting stress is high but comparable to those parents of the control sample.
The statistical analysis of the CBCL questionnaire did not show significant results. It appears from our data that a chronic disease such as JIA-U does not cause emotional and behavioral problems in children. To the best of our knowledge, there are no other studies that focused on CBCL in children with JIA-U. A coping with anxiety was reported instead in adolescents.34
The importance to screen psychological challenges in even younger children origin from the possibility that chronic disease might develop in anxiety and depression in adulthood.35-38 For this reason, we believe it is important to evaluate the psychological health of these children through frequent screening.
Our study is also the only one that studied the adaptation of the parents on the child’s clinical conditions (CISS Test). In this perspective, parents' adaptative skills may be crucial to manage the clinical condition, depending on this even the child's behavior. However, no significant results emerged from the CISS. Several studies show instead that the use of positive coping strategies is considered a necessary step in achieving resiliency and successful adaptation to stress.39,40
Agree with other study, our impression is that parents help their children when they focus coping efforts on altering controllable factors.28 In all these cases we have observed various examples of resilience in children and their parents.
Some limitations of our study should be noted. The number of the sample is limited and the interview took place with a single parent, mainly mothers with a low number of fathers recruited. Finally, we collected data in the first and second wave of the pandemic. We believe this may have affected the stress levels of the general population and acted as a confounding factor on our data.