Development and Validation of a Quality-of-Life Instrument for Infantile Hemangiomas

Area of Science:

• Pediatric dermatology
• Health outcomes research
• Psychometrics

Background:

• Infantile hemangiomas (IH) are common pediatric tumors.
• Existing quality-of-life (QoL) measures lack disease-specific validation for IH.
• There is a need for a reliable instrument to assess QoL in infants with IH and their families.

Purpose of the Study:

• To prospectively develop and validate a disease-specific QoL instrument for infants with IH and their parents/caregivers.
• To assess the psychometric properties of the developed instrument.
• To correlate clinical and demographic factors with QoL outcomes.

Main Methods:

• Prospective development and validation of the 35-item Infantile Hemangioma Quality-of-Life (IH-QoL) instrument.
• Factor analysis and Rasch measurement model evaluation for dimensionality and fit.
• Assessment of content validity, internal consistency (Cronbach's alpha), and test-retest reliability (ICC).

Main Results:

• The final 29-item IH-QoL instrument demonstrated four factors: child physical symptoms, child social interactions, parent emotional functioning, and parent psychosocial functioning.
• The instrument showed acceptable fit to the Rasch model, excellent internal consistency (alpha 0.76-0.88), and good test-retest reliability (ICC 0.84).
• Hemangiomas on the head/neck, in the proliferative stage, or requiring treatment were associated with greater QoL impact.

Conclusions:

• The IH-QoL is a valid and reliable disease-specific instrument for assessing QoL in infants with IH and their families.
• The IH-QoL can identify specific QoL domains affected by infantile hemangiomas.
• Clinical characteristics of IH significantly influence the QoL of affected infants and their caregivers.