Exploring the Patient Voice—in Two Words

The most frequently cited words in both groups were those relating to emotional experiences, with common words including fear, anxiety, and scary. Sadness, anger, and shock also appeared prominently. There were no noticeable differences in the frequency or other type of emotions expressed between participants who fully adhered to their treatment and those who showed some level of nonadherence. 

Words describing the physical impact of cancer were also frequently mentioned. Nonadherent participants used these terms three times more often than adherent participants. Commonly reported terms among the nonadherent group included pain, exhaustion, and fatigue.

Beyond the physical impact of cancer, participants also reported a significant impact on their quality of life. Nearly two-thirds of those describing a negative impact on their overall quality of life also reported some degree of nonadherence. Words such as life-changing, stress, and "sucks" were frequently cited. 

Overall, nonadherent participants were more likely to use language reflecting both the physical and overall negative impact of cancer on their quality of life compared to adherent patients. 

This may suggest a tendency towards a more negative perspective and / or a worse experience with symptoms and effects associated with cancer and its treatment. 

Nonadherent participants were also less likely to use words referring to the timeline or progression of cancer suggesting that they may be less well prepared to deal with the long timelines typically associated with cancer treatments. 

Side effects were the most frequently mentioned treatment-related words. Participants referred to them in both general terms (e.g., side effects, complications) and in more specific terms, with fatigue, pain, and hormonal side effects (e.g., hot flashes, menopause, sweating) being the most cited. 

Notably, nonadherent participants mentioned side effects nearly twice as often as adherent participants, suggesting that side effects are more top of mind for nonadherent patients. This could indicate that they experience these symptoms more frequently or are more vigilant about their potential occurrence. This finding aligns with an earlier published finding from this research that found that nonadherent patients perceive they are more sensitive to medicines than adherent patients. More information on this finding can be found here. 

Nonadherent participants made more frequent reference to the routine of taking treatment, using words such as constant, daily, and regularity. Nonadherent participants were also more likely than adherent participants to reference the burden of taking treatment, using words such as inconvenient, tedious, and effort. 

An additional interesting difference between adherent and nonadherent participants was the use of medically-focussed words. Nonadherent participants more frequently described treatment directly, in very tangible ways, using words such as treatment, medicine, and chemotherapy. Nonadherent participants were also more likely to describe the physical attributes of the treatment, such as its size (e.g., large, small), form (e.g., pill, tablet) and colour (e.g., white, brown). 

There was a trend among adherent participants to more frequently describe treatment with reference to the body, such as citing the location of the cancer (e.g., breast, thyroid), or the action of the treatment (e.g., hormone, inhibitor). This could indicate that adherent patients have a broader perspective on their treatment than nonadherent participants, seeing it as acting on the body and the cancer experience.