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. 2025 Dec;69(12):1413-1424.
doi: 10.1111/jir.70036. Epub 2025 Sep 18.

Evaluating the Hearing-Related Quality of Life in People With Intellectual Disabilities

Susanna Zielonkowski  1 , Philipp Mathmann  1   2   3 , Awa Naghipour  1 , Susanne Wasmuth  1 , Lukas Prein  1 , Ross Parfitt  1 , Werner Brannath  4 , Martin Scharpenberg  4 , Vincent Jankovic  4 , Anja Neumann  5 , Katharina Schwarze  5 , Karolin Schäfer  6 , Christian Speckemeier  7 , Corinna Gietmann  1 , Katrin Neumann  1
Affiliations

Evaluating the Hearing-Related Quality of Life in People With Intellectual Disabilities

Susanna Zielonkowski et al. J Intellect Disabil Res. 2025 Dec.

Abstract

Background: People with intellectual disabilities are more likely to have hearing loss than the general population, but in most cases, it remains unrecognised and unmanaged. The aims of this study were to determine whether the hearing status of people with intellectual disabilities can be correctly evaluated by themselves and/or their caregivers, and whether hearing loss compromises the hearing-related quality of life of people with intellectual disabilities.

Method: In the prospective cohort study, HörGeist, 1053 individuals with intellectual disabilities received hearing screening and, where necessary, diagnostic assessment and intervention within their living environment. A self-developed multipart questionnaire, including items regarding hearing-related quality of life, was answered by caregivers of the participants and was cross-checked with the results of the hearing tests. A multivariable regression was performed to verify an association between the hearing-related quality of life score and the degree of hearing loss.

Results: Hearing loss was diagnosed in 463 (44.0%) participants; thereof, only 120 (25.9%) cases were known beforehand. In 404 participants (59.0%) and 580 caregivers (61.5%), hearing status was rated correctly; it was overestimated in 34.6% and 33.4%, respectively (sensitivity: 0.223/0.271, respectively). The mean hearing-related quality of life score was 3.0 of 4 possible points. The multivariable regression revealed a small but significant association between the degree of hearing loss and hearing-related quality of life (β = -0.069; p < 0.001; adjusted R2 = 0.081).

Conclusions: Regular audiometric tests are recommended for improving the hearing-related quality of life in people with intellectual disabilities.

Keywords: assessment; hearing loss; intellectual disability; quality of life.

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Conflict of interest statement

The authors declare no conflicts of interest.

Figures

FIGURE 1
FIGURE 1
Flow chart of the three‐step HörGeist screening, diagnostic and intervention program (modified according to Schwarze et al. 2023). aScreening staff; bPhysician; cHearing aid acoustician; *In case of failed screening, reference PTA is the diagnostic PTA. ABR, auditory brainstem response; ASSR, auditory steady state response; CT, computed tomography; DPOAE, distortion product otoacoustic emissions; PTA, pure‐tone audiometry; TEOAE, transitory evoked otoacoustic emissions.
FIGURE 2
FIGURE 2
Age distribution of the study population.
FIGURE 3
FIGURE 3
Hearing‐related quality of life score according to the degree of hearing loss.
See this image and copyright information in PMC

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