Evaluation of the Effect of Surgery on Psychosocial Function and Quality of Life in Children with Simple Congenital Ptosis and Their Parents

Ethics statement

This study was approved by the Human Research Ethics Committee of Universiti Sains Malaysia (No. USM/JEPeM/22080509) and the Medical Research and Ethics Committee of the Malaysian Ministry of Health (No. NMRR-22-02442-W6W). Written consent was obtained from the parents/guardians, and written assent was given by the recruited children. The study was conducted in accordance with the Declaration of Helsinki.

Study design and setting

This prospective cohort study was conducted at three oculoplasty referral centers from September 2022 to June 2024. Children with primary unilateral congenital ptosis aged 7 to 17 years old and one of their parents/guardians were recruited. Simple congenital ptosis was defined as the drooping of the eyelid noticeable at birth or within the first year of life, without evidence of any secondary causes [1,10,11]. A successful ptosis surgery was quantitatively defined by a margin to reflex distance (MRD) 1 greater than 2 mm and an intereye MRD1 difference of less than 1 mm [8]. The change in questionnaire scores was calculated by subtracting the preoperative score from the postoperative score.

All children who fulfilled the clinical diagnosis of primary unilateral simple congenital ptosis, underwent ptosis surgery, and could comprehend the Malay language were included. Those with bilateral ptosis, ptosis of secondary causes, preexisting ocular problems, such as cataract, strabismus, optic neuropathy, neurological diseases with developmental delay, and other systemic diseases were excluded. One of each of their accompanying parents/guardians was recruited concurrently. Sample size was calculated using G*Power (Heinrich Heine University Düsseldorf), a power and sample size calculator. With a sample size of 45, excluding the 10% dropout rate, this study had 80% power for detecting an effect size of 0.3 for the outcome psychosocial function and quality of life (QoL) with a 95% confidence interval and type 1 error probability of 0.05.

Demographic data were collected, including age, sex, children’s schooling profile (e.g., attendance rate, academic performance, disciplinary status), educational level of the parents or guardians, household income, and family structure. A complete ocular examination was performed for all the children at enrollment and at 3 months after the ptosis surgery. This included visual acuity, refraction, ptosis severity grading and measurements (MRD1, intereye MRD1 difference, and levator function), anterior segment, and fundoscopy. The severity of ptosis was classified as mild (1–2 mm), when the upper lid did not cover the pupil; moderate (3–4 mm), when the upper lid partially covered the pupil; and severe (>4 mm), when the pupil was completely covered by the eyelid [12]. Therefore, a lower MRD1 value and a higher intereye MRD1 difference signified a more severe ptosis. Children with amblyopia were treated with amblyopia therapy prior to the surgery, which was continued post surgery.

The surgical method of ptosis correction was as follows. Levator resection was performed in all children aged 1 year and above. In those below 1 year, frontalis sling with silicone was performed. All procedures were performed under general anesthesia. Levator resection was performed via an anterior approach. An upper eyelid crease was marked 4–5 mm from the lid margin. Local infiltration of bupivacaine with adrenaline (1:200,000) was given subcutaneously and subconjunctivally. A skin incision was made. The tissue was dissected superiorly till levator muscle was identified, followed by inferior tissue dissection to identify the tarsal plate. Levator aponeurosis was disinserted from the tarsal plate, followed by separation of Muller muscle. Fixation of the flap thus created to the superior part of the tarsal plate, and was done using three nonabsorbable 6/0 sutures to achieve acceptable lid height and contour. The upper lid crease was formed using an absorbable 6/0 suture through the pretarsal orbicularis oculi muscle. Skin was closed using an absorbable 7/0 suture. Antibiotic ointment was applied, and a Frost stitch was placed for 1 day.

The frontalis sling method applied was that of the double Crawford sling with silicone. The intended upper eyelid crease and suprabrow skin incision site were marked 3 mm from the lid margin at the central, medial, and lateral aspects. Local infiltration of bupivacaine with adrenaline (1:200,000) was given subcutaneously. Incisions were made over markings. For the suprabrow incision, the tissue was bluntly undermined towards the periosteum and about 1 cm above the incision to create a pocket. A Wright needle was used to thread the silicone rod for each triangle and tied at the suprabrow point, with the knot buried in the tissue pocket. Skin was closed using an absorbable 7/0 suture. Antibiotic ointment was applied.

One month before the surgery, the children and one of their parents/guardians were asked to answer both Spence Children’s Anxiety Scale (SCAS) and the PedsQL 4.0 Generic Core Scales, both in Malay. At this session, they were placed with their backs to each other or in an adjacent room to prevent interaction and allow freedom to answer the questionnaire. Trained personnel were available to explain the questionnaire if clarification was needed. Both the children and the parents/guardians were asked to circle one answer that most accurately reflected their perception regarding each questionnaire item. Children with an elevated anxiety score were referred to a psychiatrist and given a choice of whether to continue with the study. Three months after the surgery, the children and the same parents/guardian who answered the preoperative questionnaire answered the same two questionnaires.

The SCAS assesses six domains of anxiety, including generalized anxiety, panic/agoraphobia, social anxiety, separation anxiety, obsessive-compulsive disorder, and physical injury fears. The subscales are scored separately to produce scores pertinent to the specific subconstruct and can be added together for an overall anxiety symptoms score. In this study, we used social anxiety domain (SCAS-Social Anxiety) for both child and parent. This consists of a 4-point Likert-type scale, ranging from 1 (best) to 4 (worst). Both the child’s and parent’s versions consist of six questions. The SCAS has a Malay-validated version and has been tested for good reliability with satisfactory content validation [13]. The obtained scores were converted to t-statistic for easy and consistent analysis across the subject’s sex and age. A t-statistic of 60 and above is indicative of subclinical or elevated levels of anxiety [14,15].

The PedsQL 4.0 Generic Core Scales measure the health-realted QoL (HRQoL) in children. It contains 23 items, consisting of five subscales: physical functioning (eight items), emotional functioning (five items), social functioning (five items), and school functioning (five items). It has both the self-report and parents or parent proxy-report, which have the same number of items, each consisting of a 5-point Likert-type scale ranging from 0 (never) to 4 (always). The items were then reverse-scored and linearly transformed to a 0–100 scale, so that higher scores indicate better HRQoL [16]. We used the Malay version of the PedsQL 4.0 Generic Core Scales, which has been tested for good reliability with satisfactory content validation [17].

Statistical analysis

The data were analyzed using the IBM SPSS ver. 24 (IBM Corp). The paired t-test was applied to compare the mean social anxiety scores and mean HRQoL scores pre and post surgery for the children and their parents/guardians. The factors affecting the change of those two scores before and after the surgery were further analyzed based using simple and multiple linear regression analysis. The significance level was set at 5% (p < 0.05).

Social anxiety scores in children

The children’s mean social anxiety score significantly decreased following the surgical procedure, from 54.42 ± 6.57 to 46.29 ± 5.84 (p < 0.001). Our data suggests that ptosis surgery significantly reduces social anxiety in children, possibly due to enhanced self-esteem and improved social interactions following the correction of their physical facial appearance. An aesthetically normal facial appearance following the surgical procedure has the potential to boost a child’s confidence and social skills, hence improving the psychosocial functioning of these children [18,19].

Social anxiety scores in parents

Parents’ perceptions align with children’s self-reports, showing a significant reduction of social anxiety score from 49.04 ± 5.63 to 44.33 ± 5.61 (p < 0.001), indicating a consistent improvement in social anxiety following the surgery. Lower scores among parents/guardians both pre-operatively and postoperatively compared to their children has been reported by Sim et al. [18]. This reflects the fact that although the scores correlate, parents were more likely to underestimate the psychosocial effects associated with their children’s ptosis. Children may not always communicate the extent of their social anxiety and emotional distress to their parents, and parents in turn may discount the physical effects of ptosis on the psychosocial functioning of their children.

HRQoL scores in children

Our study reported substantial improvements in children’s HRQoL scores across all subdomains (physical, emotional, social, and school functioning) following ptosis surgery. Despite the absence of comparable studies on this topic, the improvements seen across all subdomains in our data suggest that ptosis surgery positively impacts multiple aspects of a child’s life, beyond just physical appearance and psychosocial function. In fact, the improvement in social anxiety following surgery itself may directly improve the overall HRQoL of those children [20]. We hypothesize that improved physical appearance and self-esteem foster better peer relationships and social acceptance, making children more confident and engaged in their schoolwork.

HRQoL scores in parents

Similarly, our data demonstrated that parent HRQoL and all of its subdomains improved following surgery, confirming that both children and their parents recognized the benefits of ptosis surgery. This suggests that parents, who may initially underestimate the psychosocial and QoL impacts of congenital ptosis, are able to appreciate the positive changes in their child’s overall well-being post operation. The overall improvement in postoperative HRQoL may be due to emotional relief and happiness, reduced stress, and increased satisfaction. Furthermore, with an aesthetically normal facial appearance of their children following surgery, parents are more likely to engage in social activities without fear of judgment, improving their social life. These factors may collectively contribute to a significant improvement in the parents’ overall QoL, highlighting the broader benefits of addressing physical health conditions in children through timely surgical intervention.

Factors affecting change in scores

We found that the severity of ptosis had a significant impact on the reduction in social anxiety postoperatively (p = 0.001). Other similar published studies have not evaluated the effect of ptosis severity on social anxiety [6,9]. However, our findings are in line with previous research which suggests that patients who believe their disfiguring eye condition is more severe and more noticeable to other people are more likely to experience greater levels of preoperative baseline anxiety and would benefit significantly from ophthalmic surgery [21,22]. We also found that even with amblyopia, ptosis corrective surgery improves social anxiety and HRQoL in these children (p < 0.05). This is similar to a previous study, which stated that children are more concerned with the physical appearance of their eyes for social interaction than their functional vision [23]. Out of two postoperative parameters measured (MRD1 and intereye MRD1 difference), only the latter was statistically significant in the improvement of children’s social anxiety and HRQoL following surgery. This supports the hypothesis that eyelid asymmetry, rather than a quantitative measurement of eyelid height, is the factor most significantly associated with the psychosocial distress experienced by children with ptosis.

Our study found that the severity of ptosis was a significant factor affecting the improvement in social anxiety and HRQoL of parents/guardians following surgery (p < 0.05). These findings seem intuitive, as severe ptosis would result in greater intereye lid asymmetry and thus more obvious disfigurement, as discussed above. Parental educational level also significantly affected the change in social anxiety and HRQoL following surgery (p < 0.05). Despite the absence of directly comparable studies on this topic, observations from related research suggest that higher educated parents benefit more from facial reconstructive surgery for their children [22]. Parents with higher educational levels are likely to have better health literacy, engaging more actively in their children’s care, including attending consultations, seeking additional information, and participating in support groups. This may reflect their greater concern regarding the disease, and subsequently the greater alleviation of distress associated with treatment of the problem, resulting in improved social anxiety and HRQoL scores post successful ptosis surgery.

Besides that, we postulate that older, more educated, and female parents/guardian are more aware of the intangible effects of physical appearance on social integration and thus psychosocial functioning. The greater improvement of social anxiety among female parents/guardians following their children’s ptosis surgery is also attributed to local contextual factors, in which mothers tend to be the primary caregivers, thus were more sensitive to their child’s social struggles and emotional distress. Finally, gender-specific differences exist in response to body image–related teasing; women appear to be more susceptible than men to mental health effects from appearance concern, and this may be vicariously experienced by female caregivers when their child undergoes a similar experience [9,24].

Limitations

The quality of healthcare is increasingly being judged based on patient-reported outcomes. A retrospective case review of children with simple congenital ptosis observed that these children have significantly greater psychosocial and mental health morbidity compared to controls [6]. Among adults, ptosis surgery has been found to improve HRQoL, with an effect that was sustained for up to 5 years [25]. Our study is the first prospective study to demonstrate that among children, successful ptosis surgery likewise improves HRQoL. However, due to study time constraints, we were only able to evaluate the short-term effectiveness of the surgery. We recommend extending the follow-up duration in future research to gather data on the long-term impact of ptosis surgery on children and their parents. A larger study may also be indicated to strengthen the validity of our findings. Other strengths of our study are its multicenter involvement, thus avoiding the bias which might be experienced with a single surgeon, as well as its focus on the effect of corrective surgery among parents/guardians, which provides a holistic view of its true impact, particularly as the QoL among caregivers of children with physical deformities appears to be correlated to these children’s QoL [26].

Conclusions

Ptosis surgery resulted in statistically significant improvements in social anxiety and HRQoL in children with congenital ptosis and their parents/guardians. In addition to ptosis surgery, psychosocial function should be a consideration when identifying indications for surgery in children with congenital ptosis. When setting targets for ptosis surgery in children, prospective surgeons should bear in mind the importance of postoperative eyelid symmetry on the psychosocial function of patients and parents.