Experiences of Patients With Auditory Processing Disorder in Getting Support in Health, Education, and Work Settings: Findings From an Online Survey

Deepashri Agrawal; Giorgos Dritsakis; Merle Mahon; Alyson Mountjoy; Doris E Bamiou

doi:10.3389/fneur.2021.607907

Experiences of Patients With Auditory Processing Disorder in Getting Support in Health, Education, and Work Settings: Findings From an Online Survey

Front Neurol. 2021 Feb 18:12:607907. doi: 10.3389/fneur.2021.607907. eCollection 2021.

Authors

Deepashri Agrawal¹, Giorgos Dritsakis¹, Merle Mahon², Alyson Mountjoy³, Doris E Bamiou^{1

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Affiliations

¹ University College London Ear Institute, London, United Kingdom.
² Psychology and Language Sciences, University College London, London, United Kingdom.
³ APD Support, London, United Kingdom.
⁴ University College London Hospitals NHS Foundation Trust National Hospital for Neurology and Neurosurgery, Neuro-Otology, London, United Kingdom.
⁵ National Institute of Health Research (NIHR) University College London Hospitals Biomedical Research Centre, London, United Kingdom.
⁶ Audiological Medicine Department, Great Ormond Street Hospital, London, United Kingdom.

Abstract

Objective: To explore the views and experiences of individuals with Auditory Processing Disorder (APD) and/or their families in getting support from services and to receive their suggestions for improvement. Design: Cross-sectional random sample survey with descriptive analysis. Settings: Online survey. Participants: One hundred and fifty six individuals with APD and/or their family members from the APD Support UK patient support organization and four associated APD Facebook groups. Main Outcome Measure: A 16-item questionnaire on negative and positive experiences in getting a referral for diagnosis, funding for the FM system, and overall support for APD. Results: The key findings that emerged included reports of difficulty in getting a referral for diagnosis (54%), obtaining funding for an FM system (45%), getting support for APD (61%), and poor recognition and awareness of APD (63%) in Education, Health or Work settings. The positive experiences reported were ease in getting a referral for diagnosis (46%), in obtaining an FM system (20%), and with diagnosis leading to help at school or to a better understanding of the condition and the required adjustments. The recommended improvement areas were raising awareness of APD and related management in Education (30%), the Health sector (25%), and the public (18%). Conclusions: Individuals and families of individuals with APD overwhelmingly report a lack of awareness of APD across health, education, and work sectors, and difficulties in getting access to diagnosis and support. This information may provide an initial understanding of the patients' needs for clinical services for APD, identify research priorities, and influence longer-term public health decisions toward improved care.

Keywords: auditory processing disorder; patient experience; patient survey; qualitative; questionnaire.