Table 1 Actionable guiding clinical questions

1.

For patients of any age with non-intellectually impairing craniofacial malformation conditions, are the social consequences of facial deformities or their own affective reaction to the appearance abnormality more troubling in most of their social settings (e.g. school, work, leisure activities enjoyed with others or in public spaces)?

2.

For patients of any age with non-intellectually impairing craniofacial malformation conditions, do non-facial aesthetic psychosocial confounds nullify the facial deformity’s effect contribution to the psychosocial burden in most of their social settings (e.g. school, work, leisure activities enjoyed with others or in public spaces)?

3.

Compared with healthy individuals raised as children in the home, does the psychosocial burden for patients of any age with non-intellectually impairing craniofacial malformation conditions raised as children in the home involve manifestation of significant psychopathology?

4.

Compared with healthy adults raised as children in the home, does the psychosocial burden for patients of any age with non-intellectually impairing craniofacial malformation conditions raised as children in the home involve manifestation of significant impairment into adulthood?

5.

For school age children with non-intellectually impairing craniofacial malformation conditions, do parents and teachers rate psychosocial competency more differently than expected for healthy children observed in similar social settings (e.g. school, family time, leisure activities enjoyed with others or in public spaces)?

6.

Compared with healthy individuals raised as children in the home, is self-concept, self-image, or body image impaired for patients of any age with non-intellectually impairing craniofacial malformation conditions raised as children in the home?

7.

Compared with healthy individuals, do gender and other socio-demographic differences in patients of any age with non-intellectually impairing craniofacial malformation conditions and those who interact with these patients (e.g. parents, teachers, raters in experimental studies) modify effect of the patient’s facial deformity on psychosocial reactions in most of social settings (e.g. home, family activities, school, work, leisure activities enjoyed with others or in public spaces)?

8.

Compared with healthy individuals raised as children in the home, do patients of any age with non-intellectually impairing craniofacial malformation conditions and their families identify more or fewer positive psychosocial experiences?

9.

For patients of any age with non-intellectually impairing craniofacial malformation conditions, does misinformation or a lack of appropriate and timely information conveyed during outpatient and inpatient medical encounters by various providers (e.g. geneticists, paediatricians, nurses, and others) constitute a psychosocially important secondary trauma or inconvenience?

10.

For patients of any age with non-intellectually impairing craniofacial malformation conditions, does folklore or other preconceived ideas about ‘crippled children’ or objective knowledge about causes and treatment of non-intellectually impairing craniofacial malformation conditions have a larger influence in the psychosocial atmosphere of the immediate and extended family at home and during family social activities?

11.

For infants with non-intellectually impairing craniofacial malformation conditions, is maternal attachment or interaction impaired in most of settings (e.g. home, daycare, activities with others or in public spaces, medical encounters) compared to that observed in healthy infants?

12.

For patients of any age with non-intellectually impairing craniofacial malformation conditions compared with healthy individuals, does the experience of social or occupational discrimination lie outside of the range expected in similar social settings (e.g. school, family time, leisure activities enjoyed with others or in public spaces)?

13.

For patients of any age with non-intellectually impairing craniofacial malformation conditions compared with healthy individuals in similar social settings (e.g. school, family time, leisure activities enjoyed with others or in public spaces), does a real or perceived social or occupational discrimination present a functional or perceived burden, psychosocial deterrent, or inconvenience?

14.

Compared to a healthy child’s birth and under similar psychosocial circumstances and healthcare setting and who is then raised in the home, do families identify the birth of a child with a non-intellectually impairing craniofacial malformation condition primarily as a psychosocially important trauma, burden, or joy?

15.

Compared to raising a healthy child at home, do families identify raising a child at home with a non-intellectually impairing craniofacial malformation condition primarily as a psychosocially important burden, logistical burden, or other type of dramatic experience?

16.

For patients of any age with non-intellectually impairing craniofacial malformation conditions and their families, are there key psychological needs that should be addressed within the setting of the craniofacial team or is a general conversation about typical psychosocial concerns within this population sufficient to reduce psychosocial morbidity for patients and their families?

17.

Compared with parents of healthy children raised in the home, what psychosocial support, assessment, and care do parents of children with non-intellectually impairing craniofacial malformation conditions require to minimize stress-related problems and maintain the integrity of the family and self-image of the patient?

18.

Compared with healthy children raised in the home, what psychosocial support, assessment, and care do children with non-intellectually impairing craniofacial malformation conditions require to minimize stress-related problems and maintain the integrity of the family and self-image of the patient?

19.

Compared to the role of the primary care provider in the psychosocial management of healthy children raised in the home and their families, what is the role of the craniofacial surgeon in the psychosocial management of patients with non-intellectually impairing craniofacial malformation conditions raised in the home and their families to best minimize stress-related problems and maintain the integrity of the family and self-image of the patient?

20.

Compared with healthy children raised in the home, do patients with non-intellectually impairing craniofacial malformation conditions and their families more often require long-term psychosocial support to minimize stress-related problems and maintain the integrity of the family and self-image of the patient?