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Development and Validation of a Quality-of-Life Instrument for Infantile Hemangiomas
Sarah L Chamlin1, Anthony J Mancini1, Jin-Shei Lai2
1Division of Pediatric Dermatology, Ann and Robert H. Lurie Children's Hospital of Chicago and Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Insights
A new quality-of-life instrument, the Infantile Hemangioma Quality-of-Life (IH-QoL) scale, has been developed for infants with hemangiomas and their caregivers. This tool measures the impact of infantile hemangiomas on patient and family well-being.
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.
Abstract:
Infantile hemangiomas (IH) are common tumors for which there is no validated disease-specific instrument to measure the quality of life in infants and their parents/caregivers during the critical first months of life. This study prospectively developed and validated a quality-of-life instrument for patients with IH and their parents/caregivers and correlated demographic and clinical features to the effects on the quality of life. A total of 220 parents/caregivers completed the 35-item Infantile Hemangioma Quality-of-Life (IH-QoL) instrument and provided demographic information. The dimensionality of the items was evaluated using factor analysis, with results suggesting four factors: child physical symptoms, child social interactions, parent emotional functioning, and parent psychosocial functioning. Each factor fit the Rasch measurement model with acceptable fit index (mean square <1.4) and demonstrated excellent internal consistency, with alpha ranging from 0.76 to 0.88. The final instrument consists of four scales with a total of 29 items. Content validity was verified by analyzing parents' responses to an open-ended question. Test-retest reliability at a 48-hour interval was supported by a total IH-QoL intraclass correlation coefficient of 0.84. Certain clinical characteristics of hemangioma, including those located on the head and neck, in the proliferative stage, and requiring treatment, are associated with a greater impact on QoL.
