Abstract
BACKGROUND: Individuals with intellectual disabilities are at higher risk of undiagnosed or inadequately treated hearing loss. This situation requires easily accessible hearing screening, diagnostics and intervention programmes in the living environment, i.e., in nurseries, schools, workplaces and homes. However, a full audiometric assessment is not always possible in nonclinical settings. The multicentre cohort study HörGeist investigated the effectiveness, feasibility and costs of an outreach programme of repeated hearing screening, diagnostics, intervention and monitoring of children, adolescents and adults with intellectual disabilities in their living environment in comparison with an invitation-only programme comprising a control cohort in a clinical setting and with standard care. This paper reports on the HörGeist substudy of the outreach cohort, focusing on participants referred for 'external' diagnostics in clinical settings after failing on-site screening, and evaluating both referral uptake and outcomes. METHODS: Because none of the 141 individuals in the control cohort provided informed consent to attend the programme in a clinical setting, our results pertain solely to the outcomes and feasibility within the outreach cohort. All of the 1053 participants in the outreach cohort who failed the hearing screening tests underwent full on-site audiometric assessment. Where on-site screening and/or diagnostics were not feasible, referrals to external medical institutions were provided. Participants who were referred to external diagnostics were tracked via telephone interviews using a questionnaire and asked about their utilisation and the outcome of diagnostics. In cases where referrals were not pursued, reasons for non-compliance were recorded. RESULTS: A referral for external diagnostics was received by 262 of the 1053 participants of the outreach cohort. Of these, 19 dropped out of the study. Of the 248 referrals received by the remaining 243 participants, 93 (37.5%) were attended and 155 (62.5%) were not. The main reasons for non-attendance were 'no attempt to arrange an appointment' (32.9%), 'refusal by caregivers' (23.2%) and 'refusal by participants' (18.1%). Approximately 4% did not receive an appointment for external diagnostics. Referral uptake declined with age, with uptake rates of 50.8% in young children, 41.3% in school-aged participants and 24.7% in adults. Telephone tracking of a subsample of 48 participants who primarily did not attend for external assessment led to further clinical diagnostics in eight cases (16.7%). CONCLUSIONS: In order to achieve an improvement in the hearing situation of people with intellectual disabilities, a screening, diagnostic and intervention programme in their living environment seems both feasible and beneficial. However, reliable assessment of the hearing status of the participants of such a programme requires education of participants, caregivers and medical professionals regarding its necessity and fostering of close collaboration with healthcare providers in outpatient and clinical settings. TRIAL REGISTRATION: German Clinical Trials Register (DRKS-ID: DRKS00024804).