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Validation of a Hearing-Related Quality-of-Life Questionnaire for Parents and Deaf or Hard-of-Hearing Infants and Toddlers.

Authors
  • Sola, Ana Marija1
  • Vukkadala, Neelaysh2
  • Giridhar, Sonya3
  • Stephans, Jihyun3
  • Allen, Isabel Elaine4
  • Chan, Dylan K3
  • 1 School of Medicine, University of California-San Francisco, San Francisco, California, USA.
  • 2 Department of Otolaryngology-Head and Neck Surgery, Stanford University, Stanford, California, USA.
  • 3 Division of Pediatric Otolaryngology, Department of Otolaryngology-Head and Neck Surgery, University of California-San Francisco, San Francisco, California, USA.
  • 4 Department of Epidemiology and Biostatistics, University of California-San Francisco, San Francisco, California, USA.
Type
Published Article
Journal
Otolaryngology
Publisher
SAGE Publications
Publication Date
Dec 15, 2020
Identifiers
DOI: 10.1177/0194599820976175
PMID: 33317400
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

To design and validate a hearing-related quality-of-life questionnaire targeted toward parents and deaf or hard-of-hearing infants and toddlers: the Hearing-Related Infant/Toddler and Parent Quality of Life (HIP-QL) questionnaire. Cross-sectional questionnaire and prospective instrument validation. Academic pediatric otolaryngology clinic. A 67-question questionnaire developed from constructs of a grounded theory analysis was administered to parents of 31 deaf or hard-of-hearing children and 14 typically hearing children. Questionnaire construct validity, reliability, and discriminant validity were tested. Based on exploratory factor analysis, a 32-item construct composed of developmentally appropriate questions was reduced to a 17-item construct with 4 domains addressing quality of life for both child (auditory/communication behavior, temperament) and parent (management, parent-directed factors). Internal consistency measures were appropriate (Cronbach's alpha = 0.65), and test-retest reliability was high (intraclass correlation coefficient = 0.73). Total HIP-QL scores correlated significantly with related total PedsQL scores (r = 0.57, P < .001). As predicted, parents of children who are deaf or hard of hearing reported significantly lower mean HIP-QL scores but not mean PedsQL scores. HIP-QL was more sensitive than PedsQL for predicting case versus control membership (86.7% vs 76.9%). Multivariable regression confirmed a negative relationship between severity of hearing loss and HIP-QL score after controlling for age, sex, income, and maternal education. This context-specific questionnaire is the first validated quality-of-life instrument for parents and deaf or hard-of-hearing infants and toddlers. Previously, parental stress and functional disability questionnaires were used as proxies; therefore, this questionnaire has the potential to serve as an important tool for patient- and caregiver-centered outcomes research.

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