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Content Validity of Patient-Reported Outcome Instruments used with Pediatric Patients with Facial Differences: A
Insights
Patient-reported outcome instruments for children with facial differences often lack content validity, particularly for appearance and function. A review found most items focused on psychological impact, with negative phrasing common.
Area of Science:
- Health outcomes research
- Pediatric psychology
- Dermatology and reconstructive surgery
Background:
- Patient-reported outcome (PRO) instruments are crucial for assessing health in pediatric populations.
- Children and youth with conditions affecting facial appearance and function require validated PRO measures.
- Existing PRO instruments may not adequately capture the unique experiences of this population.
Purpose of the Study:
- To systematically review patient-reported outcome instruments used in research with pediatric populations experiencing facial differences.
- To identify the specific health concepts measured by these instruments.
- To evaluate the content validity of existing PRO instruments for this population.
Main Methods:
- A systematic literature search was conducted across multiple databases (MEDLINE, EMBASE, CINAHL, PsycINFO) from 2004 to 2016.
- Identified PRO instruments were analyzed using content analysis to categorize measured health concepts.
- Items were coded for concepts and assessed for positive or negative content/phrasing.
Main Results:
- 96 publications utilized 6 generic and 11 condition-specific PRO instruments.
- A total of 554 items were categorized into 4 domains, 11 subdomains, and 91 health concepts.
- The psychological domain was most represented (224 items), with 76% of items having negative content. Facial appearance (19 items) and function (22 items) were poorly represented, indicating a lack of content validity.
Conclusions:
- Existing patient-reported outcome instruments demonstrate limited content validity for pediatric patients with facial differences, especially concerning appearance and function.
- The majority of measured concepts focus on psychological impact, often with negative framing.
- There is a critical need for the development of new, validated PRO instruments tailored to the specific needs of this population, such as the FACE-Q Kids instrument.
Objective:
The aim of this systematic review was to identify patient-reported outcome (PRO) instruments used in research with children/youth with conditions associated with facial differences to identify the health concepts measured.
Design:
MEDLINE, EMBASE, CINAHL, and PsycINFO were searched from 2004 to 2016 to identify PRO instruments used in acne vulgaris, birthmarks, burns, ear anomalies, facial asymmetries, and facial paralysis patients. We performed a content analysis whereby the items were coded to identify concepts and categorized as positive or negative content or phrasing.
Results:
A total of 7,835 articles were screened; 6 generic and 11 condition-specific PRO instruments were used in 96 publications. Condition-specific instruments were for acne (four), oral health (two), dermatology (one), facial asymmetries (two), microtia (one), and burns (one). The PRO instruments provided 554 items (295 generic; 259 condition specific) that were sorted into 4 domains, 11 subdomains, and 91 health concepts. The most common domain was psychological (n = 224 items). Of the identified items, 76% had negative content or phrasing (e.g., "Because of the way my face looks I wish I had never been born"). Given the small number of items measuring facial appearance (n = 19) and function (n = 22), the PRO instruments reviewed lacked content validity for patients whose condition impacted facial function and/or appearance.
Conclusions:
Treatments can change facial appearance and function. This review draws attention to a problem with content validity in existing PRO instruments. Our team is now developing a new PRO instrument called FACE-Q Kids to address this problem.
