Aplicación de los ítems de aspectos cualitativos del estándar III

This section begins with a general consideration of participants’ experience of hearing change, and then gives specific attention to the sensation of tinnitus among those who had this additional symptom.

6.3.1.1 Hearing change

The majority of participants who had a measurable deterioration in hearing noticed a difference in their hearing after treatment, whether it was a sudden change: “It was immediately…after I had day 1 and 29 of Cisplatin” (P51, F, Y, G3, N), or a less dramatic change: “Just a decline in the hearing; just that I couldn’t hear” (P17, M, Y, G3, N). Whereas some participants felt a non-specific decline in hearing, others were more specific: “I lost all the high-pitched hearing” (P11, M, Y, G3, N), indicating that these participants were acutely aware of which part of their hearing range had been affected by treatment. However, there appeared to be no difference in the perception of hearing change between men and women, those who were young or old, or those who had a hearing loss or had normal hearing before treatment. Whereas all participants who had Grade 3 hearing deterioration were aware of a change in their hearing, not all those with Grade 1 change felt much difference: “Bearing in mind I’m old, I’m 76, I don’t feel it is much worse than it was before” (P42, F, O, G1, HL), or had a change that suggested a minor difference: “I did feel that there were things that I was able to hear before, that I do not hear now. I cannot be specific about what that is” (P12, M, O, G1, HL). Therefore, it seemed that participants who had a major measured deterioration in hearing following treatment either had a sudden or less dramatic change in hearing, whereas those who had a minor measured deterioration either had a vague perception of hearing change, or noticed no change at all.

Sudden changes in hearing appeared to occur during treatment, whereas more gradual change was experienced after the completion of treatment: “I think it was when the radiotherapy had finished, probably a few days after” (P11, M, Y, G3, N). These findings showed that hearing change manifested at different times for participants in relation to when they received their treatment. Thus, it was not possible to predict when hearing deterioration was to be experienced; also, there was no pattern in relation to different participant

characteristics. However, those who were aware of a hearing change or tinnitus during treatment may have been offered an alternative treatment to complete their therapy.

In addition to experiencing general deafness and/ or reduced pitched hearing, some participants felt a sensation in the ear such as fluid, pressure, a popping or a blocked sensation: “My left ear filled with fluid or it felt like that, and it felt pressurized...” [my ear] just blocked itself… it is almost like something is stuck, there is something in my ear to stop hearing at all, so the high pitch goes at the same time as the pressure is there as well” (P11, M, Y, G3, N), or “I noticed my ear was like being on a plane, so I could feel it popping” (P7, M, Y, G3, N). This sensation of pressure change, or of fluid, is most probably due to middle ear effusion that sometimes follows RT treatment for HNC. It was interesting to note that participants felt that this pressure made them ‘stop hearing at all’, which suggests that this experience had a significant negative impact. Participants with only Grade 3 deterioration in hearing mentioned fluid sensation, possibly indicating that those who had minor deterioration may have had a resolution of fluid by the time of their interview.

6.3.1.2 Tinnitus

Although this study was primarily focused on hearing change, the majority of participants who experienced hearing deterioration had also acquired tinnitus. Some participants experienced tinnitus at the same time as their hearing deterioration yet, as will be reported below, in this study tinnitus was often the more distressing symptom.

A common finding was that participants experienced tinnitus in different ways, and one participant at the beginning of his treatment experienced hyperacusis (the intolerance to every day sounds) with his tinnitus. Each participant experienced a different type of sound, for example: “It is literally just like a mmmmmm, but very very faint and very high pitched” (P11, M, Y, G3, N). They also experienced tinnitus in different locations: in the head, in the ear or over the ears, for example “It sort of hovers [participant gesticulating with his hand moving over his head]” (P12, M, O, G1, HL). These findings suggested that the sensation of tinnitus following hearing deterioration manifested itself in various different ways. Also, there appeared to be no pattern as to whether participants experienced hearing deterioration and tinnitus concurrently, or at different times. However, the distress with tinnitus was evident in some participants: “In the left ear I’ve got terrible ringing for quite some time” (P53, M, O, G3, HL), and was particularly evident in the one participant who had hyperacusis: “The noise…combined with external stimulus, I guess that caused the ears to hurt” (P7, M, Y, G3, N). This distress led to a change in treatment for this participant. It was noted that more severe tinnitus was experienced by those participants with Grade 3 deterioration in hearing.

6.3.1.3 Progression of aural change

Participants experienced different progression in their symptoms of hearing deterioration during and after treatment. Some participants experienced temporary hearing loss during their treatment that indicated first, the presence, and then secondly, the resolution, of middle ear effusion: “When I had the first [dose of cisplatin], day two I woke up and it was like I was under water. My hearing was very like I had got water in my ears, and I sort of was not shouting at people, but could not hear myself talk. Well after about a week that improved, it went, and my hearing went back to normal” (P51, F, Y, G3, N). After the completion of treatment up to the time of interview, some participants felt that their hearing deterioration fluctuated in intensity: “[my] hearing could be a bit all over the place at times” (P7, M, Y, G3, N). Others mentioned that their hearing difficulty was maintained in severity: ‘It feels like I am

underwater with my left ear so everything is really muffled and then it just stayed like that” (P11, M, Y, G3, N), whereas others, following the initial deterioration, subsequently

perceived an improvement: “I mean [the hearing] is improving slowly” (P53, M, O, G3, HL). An improvement in hearing indicated that participants could have had confirmed psycho- acoustical (measurable) change if hearing testing was performed at the time of interview. Although maintained severity, or decreased severity, in hearing loss following treatment was apparent, further deterioration in hearing was not clearly stated by participants. However, some participants were uncertain when asked if there had been a change in their hearing: “I really could not say. I mean after a while you just get on with things so you do not really pay too much attention [to your hearing]” (P12, M, O, G1, HL). These findings indicated that the sensation of hearing deterioration was most prominent during or within a few months

following treatment, as it was in this period that the majority of participants experienced their hearing problems most acutely, although others had maintained difficulty with hearing by the time of their interview one year after receiving either RT or CRT for their cancer.

There was also variation in the progression of tinnitus. Some participants experienced continuous tinnitus: “It is like a very high-pitched whistle in my head, constantly [present]” (P51, Y, F, G3, N), fluctuating tinnitus: “[The tinnitus] seems to come and go I think, because sometimes I’m not aware of it, and then I think oh I’ve got that noise in my ear” (P29, F, O, G3, N), or a lessening in the severity in tinnitus from when first experienced with treatment “With the treatment there was the tinnitus…it is very mild now” (P12, M, O, G1, HL). Some participants experienced a change in how they perceived their tinnitus: “The high-pitched whistling that I had went… and was replaced by... a white noise… it is just kind of a shhhhh noise these days” (P7, M, Y, G3, HL). It was clear that participants not only experienced hearing deterioration and tinnitus at different times and in different ways during or after treatment, but also experienced the progression of their symptoms differently. Arguably, this may make it difficult to advise patients when or how they would experience these symptoms after treatment, and how their symptoms would progress.

Therefore, all partipants with a major measured hearing deterioration were aware of a change in hearing, whereas only some of those with a minor deterioration experienced a loss. Some participants noticed their hearing change first during treatment, whereas others perceived their change following the completion of their RT or CRT, with some participants with Grade 3 deterioration experiencing the sensation of fluid build-up, as well as hearing loss, with their treatment. In addition, most participants who suffered a loss in hearing also experienced tinnitus, and that those with major deterioration expressed more distress with their tinnitus than those with Grade 1 change. There was no pattern to the progression of either hearing loss or tinnitus, so that it was not possible to predict symptom progression. Apart from the observations made above on the different sensations perceived by

participants who had Grade 1 or Grade 3 deterioration, there were no patterns apparent based on other patient characteristics. This first theme described how participants perceived their aural symptoms. The next theme presents how these symptoms affected daily living of participants interviewed.