Goal: We will develop and test hearing-loss specific quality-of-life (QoL) modules designed to be sensitive to environmental and psychosocial effects of hearing loss with the goal of developing a novel, multidimensional tool for use in evaluating interventions.
Aims : 1. identify key QoL issues and develop QoL items specific to children and youth with hearing loss by conducting in-depth interviews and focus groups with youth ages 11-18 years and with parents of children ages 5-10 years ; 2. validate the cross-sectional measurement properties of hearing-loss specific QoL modules using classical and item-response theory methods; 3. explore association of degree of D/HH with QoL and known or expected correlates, using a clustered sample design and 4. revise the draft youth- and parent-report D/HH Modules using validation results and to disseminate the new D/HH Modules Significance: Hearing loss in early life carries broadly recognized implications for the development of speech, language, and communication skills. Consequently, interpersonal relationships and social development are affected, influencing a child's sense of well-being. Measures that reflect this fundamental construct are needed for use in needs assessment, research, program design and program evaluation. Innovation: We intend to build a theoretically-driven QoL measure using a needs-based approach that actively involves parents and youth who represent a range of hearing losses and cultural backgrounds. Methods and Analysis: Study 1: In-depth interviews to the point of redundancy with a minimum of 30 deaf youth ages 11-18 years and a minimum of 30 parents of children ages 5-10 years with range of hearing loss and ethnicity. Focus groups with parents and young adults will augment in-depth interviews. Cognitive debriefing, adaptation of items into video form, and readability analyses will be conducted to produce test modules. Study 2: Validation sample of 500 youth who are in D/HH programs in day schools and their parents guardians, 90 youth and their parent guardians who are in D/HH residential schools will be recruited to complete test instrument(s) and other questionnaires taking a maximum of 45 minutes. Classical and item-response theory methods will be used for scale development. Instrument reliability and construct validity will be tested. Initial dissemination will occur in school districts and treatment facilities participating in the project in Washington, Colorado, and Arizona. Instruments will be available on DVD at minimum cost. Investigators: An interdisciplinary team of experienced instrument developers, clinicians familiar with options for management of hearing loss, and investigators actively involved in programs to enrich community resources for those with hearing loss will collaborate to recruit, study, present and publish results and disseminate resulting instruments. ? ? ?
| Meyer, Abby; Sie, Kathleen; Skalicky, Anne et al. (2013) Quality of life in youth with severe to profound sensorineural hearing loss. JAMA Otolaryngol Head Neck Surg 139:294-300 |
| Patrick, Donald L; Edwards, Todd C; Skalicky, Anne M et al. (2011) Validation of a quality-of-life measure for deaf or hard of hearing youth. Otolaryngol Head Neck Surg 145:137-45 |
| Kushalnagar, P; Topolski, T D; Schick, B et al. (2011) Mode of communication, perceived level of understanding, and perceived quality of life in youth who are deaf or hard of hearing. J Deaf Stud Deaf Educ 16:512-23 |
