Development and validation of a quality-of-life instrument for infantile hemangiomas

Sarah L. Chamlin, Anthony J. Mancini, Jin Shei Lai, Jennifer L. Beaumont, David Cella, Denise Adams, Beth Drolet, Eulalia Baselga, Ilona J. Frieden, Maria Garzon, Kristin Holland, Kimberly A. Horii, Anne W. Lucky, Catherine McCuaig, Denise Metry, Kimberly D. Morel, Brandon D. Newell, Amy J. Nopper, Julie Powell, Dawn SiegelAnita N. Haggstrom*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

17 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)1533-1539
Number of pages7
JournalJournal of Investigative Dermatology
Issue number6
StatePublished - Jan 1 2015

ASJC Scopus subject areas

  • Biochemistry
  • Molecular Biology
  • Dermatology
  • Cell Biology

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