title: Development and Validation of a Quality-of-Life Instrument for Infantile Hemangiomas.
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.
authors.affiliation: Division of Pediatric Dermatology, Ann and Robert H. Lurie Children's Hospital of Chicago and Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: Sarah L
authors.initials: SL
authors.lastname: Chamlin
authors.affiliation: Division of Pediatric Dermatology, Ann and Robert H. Lurie Children's Hospital of Chicago and Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: Anthony J
authors.initials: AJ
authors.lastname: Mancini
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: Jin-Shei
authors.initials: JS
authors.lastname: Lai
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: Beaumont
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.affiliation: Department of Oncology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, Ohio, USA.
authors.forename: Denise
authors.initials: D
authors.lastname: Adams
authors.affiliation: Department of Dermatology, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.
authors.forename: Beth
authors.initials: B
authors.lastname: Drolet
authors.affiliation: Department of Dermatology, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain.
authors.forename: Eulalia
authors.initials: E
authors.lastname: Baselga
authors.affiliation: Departments of Dermatology and Pediatrics, University of California San Francisco, San Francisco, California, USA.
authors.forename: Ilona J
authors.initials: IJ
authors.lastname: Frieden
authors.affiliation: Departments of Dermatology and Pediatrics, Columbia University, New York, New York, USA.
authors.forename: Maria
authors.initials: M
authors.lastname: Garzon
authors.affiliation: Department of Dermatology, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.
authors.forename: Kristin
authors.initials: K
authors.lastname: Holland
authors.affiliation: Division of Dermatology, Children's Mercy Hospital, Kansas City, Missouri, USA.
authors.forename: Kimberly A
authors.initials: KA
authors.lastname: Horii
authors.affiliation: Divisions of Dermatology and General and Community Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
authors.forename: Anne W
authors.initials: AW
authors.lastname: Lucky
authors.affiliation: Division of Dermatology (Pediatrics), CHU Sainte-Justine, University of Montreal, Montreal, Canada.
authors.forename: Catherine
authors.initials: C
authors.lastname: McCuaig
authors.affiliation: Department of Dermatology, Baylor College of Medicine, Houston, Texas, USA.
authors.forename: Denise
authors.initials: D
authors.lastname: Metry
authors.affiliation: Departments of Dermatology and Pediatrics, Columbia University, New York, New York, USA.
authors.forename: Kimberly D
authors.initials: KD
authors.lastname: Morel
authors.affiliation: Division of Dermatology, Children's Mercy Hospital, Kansas City, Missouri, USA.
authors.forename: Brandon D
authors.initials: BD
authors.lastname: Newell
authors.affiliation: Division of Dermatology, Children's Mercy Hospital, Kansas City, Missouri, USA.
authors.forename: Amy J
authors.initials: AJ
authors.lastname: Nopper
authors.affiliation: Division of Dermatology (Pediatrics), CHU Sainte-Justine, University of Montreal, Montreal, Canada.
authors.forename: Julie
authors.initials: J
authors.lastname: Powell
authors.affiliation: Department of Dermatology, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.
authors.forename: Dawn
authors.initials: D
authors.lastname: Siegel
authors.affiliation: Department of Dermatology and Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana, USA. Electronic address: ahaggstr@iu.edu.
authors.forename: Anita N
authors.initials: AN
authors.lastname: Haggstrom
mesh_terms: D000465:Algorithms; D017028:Caregivers; D003880:Dermatology / Q000379:methods; D005260:Female; D006391:Hemangioma / Q000175:diagnosis*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D015233:Models, Statistical; D010290:Parents; D011446:Prospective Studies; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires