Accepted for/Published in: JMIR Cancer
Date Submitted: Jun 1, 2018
Open Peer Review Period: Jun 3, 2018 - Jul 29, 2018
Date Accepted: Nov 25, 2018
(closed for review but you can still tweet)
Exploring the experiences of cancer patients with chemotherapy induced ototoxicity: a qualitative study using online health forums.
ABSTRACT
Background:
Many cancer patients and survivors experience permanent and life-debilitating effects, such as ototoxicity, from treatment. Ototoxicity manifests as high frequency hearing loss and tinnitus which can have a detrimental effect on the quality of life of those affected. Currently, there is little information and support offered to these patients who experience ototoxicity, potentially leading to many being undiagnosed and untreated.
Objective:
To explore the extent of ototoxic side effects, such as hearing loss and tinnitus and their impact on cancer patients following chemotherapy treatment. Secondary objectives included detecting the time periods of onset and duration of the ototoxicity and identifying what support was available to this population.
Methods:
Posts from publically available online forums were thematically analysed using the guidelines from Braun and Clarke. A coding manual was iteratively developed to create a framework for the analysis of the ototoxicity experience amongst the cancer population.
Results:
A total of nine relevant online forums were identified, consisting of 86 threads and 570 posts from 377 members. Following the bottom-up thematic analysis, six major themes were identified: Nature of Ototoxicity, Time of Experienced Ototoxicity, Information on Ototoxicity, Quality of Life, Therapies and Online Social Support.
Conclusions:
There was a significant number of reports expressing concerns about the lack of information on the risk of ototoxicity. More support for those suffering is needed, for example, improved inter-departmental communication between oncology and audiology services could optimise patient care. Patients should also be encouraged to communicate with their healthcare professionals about their ototoxicity and relay how their quality of life is impacted in order to access appropriate or specialist support. Tinnitus was the most common concern and was associated with distress. Hearing loss was less common and was associated with fear and employment issues. Those who reported pre-existing conditions were fearful about worsening their condition as their quality of life was already impacted.
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Copyright
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