Children with congenital and acquired medical conditions, including those affecting the structure and function of the eye, experience unique risks related to social, emotional, and developmental functioning. Many families affected by pediatric disease and illness demonstrate effective coping and adjustment in the face of such challenges, but all patients and families are likely to experience varying levels of distress throughout all stages of diagnosis and treatment and as such are likely to benefit from targeted support. Routine evaluation of psychosocial risk among patients and families is critical to promptly identifying those in need of support and intervention matched to the assessed level of need [11].

The Pediatric Psychosocial Preventative Health Model [12] is a useful tool when considering varying levels of risk and matched interventions among families coping with pediatric health conditions. The PPPHM proposes a model for screening all families and children entering treatment, with higher levels of care recommended for those with highest levels of psychosocial risk. It assumes that most families in the pediatric healthcare setting are competent and exhibit adaptive functioning but recognizes that some families may experience expected distress related to diagnosis or specific aspects of treatment, while other families may exhibit preexisting difficulties that are increased with diagnosis and treatment such that they may experience significant distress and functional impairments.

Based on a public health framework, the PPPHM outlines three levels of risk with associated interventions. At the base level is the largest group, Universal families , who are experiencing expected levels of concern and distress about the child’s condition but who are demonstrating resiliency and effective coping and adjustment [12]. Families at the Universal level benefit from the provision of general support and educational resources geared toward helping families identify the resources available to them to enhance coping and compliance. This can include psychoeducation about treatment, case management services, collaboration with schools, general supportive counseling, brief medical play, or referral to local and national condition-specific support networks.

At the next level are Targeted families , who experience continued or worsened vulnerability secondary to preexisting concerns in conjunction with the stressors of medical treatment [12]. Such families benefit from recommendations for psychosocial interventions to address their specific symptoms, as well as ongoing monitoring to determine whether they have continued or increasing support needs. For example, a family at the Targeted level may benefit from a brief course of supportive therapy to address a child’s adjustment to diagnosis and treatment, compliance with medical treatments (e.g., eye drops, patching), and specific interventions to address procedural anxiety or fears of upcoming surgeries.

At the top level is the smallest group representing the highest level of risk and greatest need for psychosocial care, Clinical families . These patients and families exhibit multiple preexisting, chronic, and complex difficulties requiring intensive intervention with a behavioral health specialist such as a psychologist or a psychiatrist [12]. Such families are likely to experience escalating difficulties requiring crisis intervention, legal supports or consultation with child welfare agencies, psychiatric medication, or interventions designed to assure the safety of the patient and family members. Clinical families require the highest level of support and monitoring, even when the acute risk has passed.

Families can move from level to level within the PPPHM, either as a result of effective intervention or related to aspects of the child’s medical condition and its treatment. Ongoing assessment of a family’s level of risk allows for the tailoring of preventive, evidence-based, and cost-effective psychosocial care designed to enhance patient outcomes and quality of life. Psychosocial risk screening can be completed by many members of the patient’s care team, especially when using validated parent-report measures such as the Psychosocial Assessment Tool (PAT) [13, 14]. Though initially designed for use with pediatric cancer populations, the PAT has since been studied and adapted to a wide range of pediatric health populations, including those with specific diseases like craniofacial conditions, and translated into multiple languages. This brief, parent-reported screener of psychosocial risk includes subscales assessing family structure and resources, family problems, social support, stress reactions, child problems, sibling problems, family functioning, and belief systems. Scores are designed to alert clinical staff to the family’s current risk status and need for intervention at the Universal, Clinical, or Targeted level. Though the PAT and other screeners can be administered by most clinical staff, collaboration between ophthalmic surgeons and specially trained psychosocial providers can allow for the most effective and efficient evaluation and intervention. Ongoing assessment will help treatment teams best meet their patients’ changing needs and help optimize patient outcomes and enhance quality of life in the face of congenital and acquired oculoplastic conditions.

Quality of life (QOL) is broadly characterized as a multidimensional, subjective evaluation of the positive and negative aspects of one’s life [15]. Health-related quality of life (HRQOL) focuses more specifically on perceived physical and mental health over time [16] and is comprised of physical, emotional, social, and cognitive factors as well as aspects of medical conditions and treatment, financial impact of health conditions, and community resources, policies, and practices that affect health and healthcare. As with the ongoing screening for psychosocial risk, it is important to assess HRQOL regularly to best understand the impact of medical conditions and their treatment on the individual’s broader experience and to demonstrate the efficacy and clinical benefit of treatments.

The research exploring QOL among patients with oculoplastic conditions and treatments is limited, and even more so among pediatric patients. Adults with strabismus rated the condition as having a negative impact on multiple aspects of their lives, including employment, personal relationships, and self-image [17], and demonstrated that they are often perceived negatively by others due to their appearance difference [3, 4]. Postoperatively, adult strabismus patients reported improvements in perceptions of themselves and their personality traits and beliefs that they’d be perceived more positively by others [18]. Similarly, adult patients with blepharoptosis experienced postoperative improvements in vision and their abilities to perform fine manual work, reading, and watching television [19] as well as improvements in self-image [20]. In addition, photographs of adult patients with blepharoptosis and dermatochalasis were rated more negatively before surgical treatment [2]. However, a recent review of the literature found sparse evidence for improvements in quality of life among adults who received surgical treatment of common oculoplastic conditions such as thyroid eye disease, ptosis, and nasolacrimal duct obstruction compared to the hundreds of studies examining other ophthalmologic conditions such as cataracts [21].

Together, findings suggest that surgical intervention for some ophthalmologic conditions affecting vision and appearance may contribute to improvements in vision and function as well as perceptions of the self and social perceptions by others. However, the studies exploring these issues among adults and especially children are very limited, and the use of reliable and valid assessment tools is limited. Increasingly, ophthalmologic surgeons recognize the importance of creating and refining psychometrically sound assessment tools to accurately and efficiently assess the quality of life and ophthalmologic functioning of adult and pediatric patients.

The LV Prasad-Functional Vision Questionnaire (LVP-FVQ) [22] and the Cardiff Visual Ability Questionnaire for Children (CVAQC) [23] assess visual functioning, and the Children’s Visual Function Questionnaire (CVFQ) [24] assesses visual function and quality of life, but all three rely on parent proxy report. Focus groups of young patients with visual impairment and their parents indicate that they have similar concerns about psychosocial and school functioning [25]. However, children’s perceptions of quality of life and the impact of health on functioning can often vary compared to parent and medical provider views of functioning [26–29]. This suggests that it is important to ask children directly about their experiences for the most comprehensive understanding of quality of life.

The Pediatric Quality of Life Inventory [30] assesses child self-report and parent proxy report of the child’s generic physical, mental, social, and role functioning. It’s been validated and used in healthy children as well as children with health issues, but fails to adequately assess the impact of living with a visual impairment and is not sensitive to changes in vision and appearance over time.

Recently, work has been done to create reliable and valid measures of child-centered vision-related quality of life. The Impact of Vision Impairment for Children (IVI_C) [31] is a vision-specific QOL scale designed with input from focus group discussions of children with visual impairment and validated among children and adolescents with and without visual impairment. It has been found to be a reliable and valid measure of quality of life among children aged 8–18 with vision impairment who are otherwise in good health [32]. Similarly, the Vision-related Quality of Life of Children and Young People (VQoL_CYP) instrument [33] was created using data from qualitative interviews of 10–15-year-olds with visual impairment or blindness, which was analyzed and evaluated to identify themes critical to a child-centered understanding of the impact of visual impairment on quality of life. The resulting 47-item measure assesses domains such as social relations, acceptance, and participation; independence and autonomy; psychological and emotional well-being; future aspirations and fears; functioning at home, school, and leisure; and treatment of eye conditions.

Additional research on children and adults in various stages of development and treatment, with a wide variety of oculoplastic conditions, using validated measures that examine child-reported experiences are needed to reliably demonstrate the clinical benefit of oculoplastic procedures on quality of life.

Body image , defined as perceptions and attitudes toward one’s own physical appearance, is the largest contributor to self-esteem and self-concept among children and adolescents. Body image and appearance satisfaction can be conceptualized as having three main components: (1) an individual’s objective appearance, (2) subjective evaluation of appearance (by self and others), and (3) the importance placed on appearance for self-worth. Adolescence is a key time in body image development, because of the normative, developmental challenges that influence and are influenced by body image, such as pubertal development, identity formation, and emergence of sexuality [34].