Faculty Collaboration Database

Development and Validation of a Quality-of-Life Instrument for Infantile Hemangiomas. J Invest Dermatol 2015 Jun;135(6):1533-1539

Date

01/24/2015

Pubmed ID

25615551

DOI

10.1038/jid.2015.18

Scopus ID

2-s2.0-84938079954 (requires institutional sign-in at Scopus site)   26 Citations

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.

Author List

Chamlin SL, Mancini AJ, Lai JS, Beaumont JL, Cella D, Adams D, Drolet B, Baselga E, Frieden IJ, Garzon M, Holland K, Horii KA, Lucky AW, McCuaig C, Metry D, Morel KD, Newell BD, Nopper AJ, Powell J, Siegel D, Haggstrom AN

Author

Kristen E. Holland MD Associate Professor in the Dermatology department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Algorithms
Caregivers
Dermatology
Female
Hemangioma
Humans
Infant
Infant, Newborn
Male
Models, Statistical
Parents
Prospective Studies
Psychometrics
Quality of Life
Reproducibility of Results
Severity of Illness Index
Surveys and Questionnaires