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J Invest Dermatol. 2015 Jun;135(6):1533-1539. doi: 10.1038/jid.2015.18. Epub 2015 Jan 23.

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

Author information

1
Division of Pediatric Dermatology, Ann and Robert H. Lurie Children's Hospital of Chicago and Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
2
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
3
Department of Oncology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, Ohio, USA.
4
Department of Dermatology, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.
5
Department of Dermatology, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain.
6
Departments of Dermatology and Pediatrics, University of California San Francisco, San Francisco, California, USA.
7
Departments of Dermatology and Pediatrics, Columbia University, New York, New York, USA.
8
Division of Dermatology, Children's Mercy Hospital, Kansas City, Missouri, USA.
9
Divisions of Dermatology and General and Community Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
10
Division of Dermatology (Pediatrics), CHU Sainte-Justine, University of Montreal, Montreal, Canada.
11
Department of Dermatology, Baylor College of Medicine, Houston, Texas, USA.
12
Department of Dermatology and Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana, USA. Electronic address: ahaggstr@iu.edu.

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.

PMID:
25615551
DOI:
10.1038/jid.2015.18
[Indexed for MEDLINE]
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