Researchers interviewed 24 cancer survivors to discuss the psychosocial aspects of hearing loss and why patients must advocate for themselves with this long-term condition sooner.
Adult survivors of pediatric cancer must advocate for themselves as hearing loss is a prevalent effect that has delayed them to seek care, according to study results published in Cancer.
“Unfortunately, the social consequences of hearing loss can be profound. In older adults, hearing loss has been associated with depression, cognitive impairment and social isolation,” the researchers wrote. “Among children, even mild levels of hearing loss have been associated with language and learning difficulties, increased stress and lower self-esteem. Hearing loss in survivors of childhood cancer has been associated with higher unemployment rates and a reduced likelihood of marriage or living independently, even after controlling for other disability-related factors.”
Despite these significant long-term consequences, recognition of hearing loss is often delayed. Therefore, to determine the how and why hearing loss occurs, the researchers aimed to describe the experience of an individual in survivorship living with this late effect.
Twenty-four survivors, who had a clinical visit at the Adult Long-Term Follow-Up Program at Memorial Sloan Kettering Cancer Center between September 2005 and January 2019, participated in telephone interviews.
“Three primary themes emerged from the interviews. First, hearing loss related to cancer treatment may be associated with isolation and exclusion in social, professional, and academic settings for the adult survivor of childhood cancer,” the researchers wrote. “Second, survivors demonstrate a knowledge gap regarding hearing loss and possible interventions such as hearing aids. Finally, hearing loss for survivors often is deprioritized or neglected because it is a reminder of the cancer history and interpreted within the context of other treatment-related late effects.”
They added that social exclusion is often common among cancer survivors, whether they feel deliberately excluded or if certain environments with high activity provide challenges for those with hearing loss. In turn, these experiences can lead to anxiety. One survivor who was interviewed explained that they hate speaking in front of people or tended to avoid conversations altogether.
“Social exclusion is not an infrequent experience among survivors with hearing loss, and these experiences of exclusion can lead to feelings of social isolation, defined as the distancing of an individual from his or her network of relationships,” researchers explained. “This feeling of isolation may be related not only to exclusionary experiences but also to the challenges of disclosing the hearing loss.”
In addition to social isolation, long-term hearing loss was also found to be a challenge in that survivors had to acknowledge the condition. “The burden of contending with late effects after the intense experience of a cancer diagnosis and treatment can be overwhelming,” the researchers wrote.
Patients in the study also reported that they wished doctors discussed the potential of this long-term outcome occurring after their cancer treatment. Moreover, they reported that follow-up with an audiologist improved their understanding of hearing loss.
“I guess I would have liked to know that this was a possibility at treatment. But I didn’t know hearing loss would be an issue. [The audiologist] definitely made it clearer as to what the initial problem was. Because between previous audiology tests, they never were really able to give me a clear cut of why I had a ringing in my ears. So, then this audiologist actually defined the problem for me,” one survivor said in their interview.
With this, one survivor highlighted how important it is for others to advocate for themselves, especially when it comes to long-term care. “The best thing is to be vocal about it and advocate for yourself.”
“The medical community has an opportunity to support survivors in this advocacy by raising awareness as well as by initiating and continuing the discussion of the impact of late effects of cancer treatment,” the researchers added.