Fifty patients (50% female, mean age 60 years (range 21–79 years)) with BV diagnosed at MUMC + were included in this study. In 58% of the included patients, a definite etiology could be determined, with ototoxicity as the most common etiology (38%). In 22%, the etiology was of probable cause, and in 20%, the etiology was idiopathic. A bilaterally reduced caloric response was found in 90% of the patients (sum of bithermal SPV < 6°/s in each ear), while 78% had a bilaterally reduced VOR gain measured with vHIT (< 0.6), and 60% had a reduced VOR gain on torsion swing test (< 0.1). Fifty-two percent of the patients met three of the vestibular inclusion criteria described above.
Themes of patients’ expectations
Analysis of all 50 transcripts revealed diverse, explicit, but also more nuanced expectations about vestibular implantation. Three key themes were identified: symptom reduction, functions and activities, and quality of life (Fig. 1). Each theme was related to an overarching domain: the physical domain (symptom reduction), the behavioral domain (functions and activities), and the emotional domain (quality of life).
The first theme clustered around symptom reduction. Patients expressed several expectations focused on symptom relief. Within this domain, reduction of oscillopsia was frequently mentioned:
‘It would be nice to be able to walk and look around at the same time.’ [P20]
‘I think I would be very happy if images would stand still. I find that the most disturbing.’ [P43]
followed by reduction of imbalance:
‘I would like to just get my stability back. I think my problem would almost be solved when I have my stability back.’ [P24]
No explicit expectations regarding the improvement of cognitive or emotional symptoms, such as problems with performing dual tasks or having anxiety, were mentioned. Symptom reduction is, therefore, mainly focused on the physical burden of BV (Fig. 1: Physical domain).
The second theme concentrated on gaining function and resuming activities. Patients expressed their expectations by means of resuming one or more activities. To resume walking (in a straight line) was commonly pointed out:
‘To no longer have those swings during walking, that I could just walk in a straight line. That would be nice, yes.’ [P13]
followed by other types of transportation, doing sports and cycling:
‘I would love to drive again. My wife drives really well, but I would prefer to drive myself.’ [P23]
‘We always liked to dance and that is no longer possible. I have lost my balance. So yes, now I just stand next to a table.’ [P28]
‘I would like to be able to cycle. I always liked that. I sat on that stupid thing with my eyes closed!’ [P34]
These activities were often related to social life, previous work, hobbies, or activities of daily living. This second theme, function and activities, was therefore clustered around the overarching domain behavior (Fig. 1):
‘Walking. I have always walked a lot. Twice a year, I went to the Ardennes [region in Belgium and France with extensive forests and rolling hills] with ten friends. We had an apartment there and it was very cosy and very nice. But now I can no longer walk in the woods. Not in the forest at all.’ [P16]
The third theme clustered around quality of life. Explicit but also more nuanced expectations focused on improvement of quality of life were expressed. Patients expected an improvement of their quality of life, by being able to live the life from before they developed BV:
‘Everything. I would like to live the life I used to live again. Being busy. Having people around me. I would like that again. But that is not possible now.’ [P53]
followed by gaining more freedom of movement:
‘I would like to regain my freedom in the evening. Get back your freedom of movement. Yes, that would be nice.’ [P12]
and by being more independent or self-reliant:
‘That you are independent of other people. Self-reliant.’ [P19]
Although nobody explicitly indicated an expectation in improving the emotional burden of BV, the expectations within the theme quality of life showed connections with emotions such as insecurity, worry, guilt, or frustration (Fig. 1: Emotional domain):
‘But just the fact that you are thinking about it that way, and then you enter the room and you don't know everyone right away. You need to look where they are. That's just annoying and you just don't want to. You would just prefer to simply walk or cycle over there and also walk in there without worrying that you might go to the left or to the right or you know. I just find that annoying.’ [P20]
A detailed overview of the three key themes and their underlying aspects discussed above can be found in table 1 in Online Resource 3.
Connections were also established between the different themes: patients often discussed how improvements of an aspect underlying one theme would affect aspects underlying another theme. For example, connections were made between balance or oscillopsia (symptom reduction) and resuming activities like walking or cycling. Another illustration was the connection between being able to travel or drive a car again (resuming activities) and therefore being more independent or self-reliant (improvement of overall quality of life):
‘Being able to travel by public transport. Being able to board the train by myself, so that I can go to my daughter independently. Just whenever I want.’ [P19]
The analysis showed overlap of respondent-driven topics that were regularly discussed in different interviews. These respondent-driven topics were related to the perceived personal value of the vestibular implant, the desired level of overall improvement after receiving a vestibular implant, the expected or acceptable number of post-operative care consultations, and acceptable or unacceptable surgical risks.
Modest expectations versus high value
The desired level of overall improvement after receiving a vestibular implant was discussed by 15 patients, of which some patients indicated that they desired 100% improvement. However, other cases showed more variation in the level of desired improvement, ranging from 70% to very little improvement:
‘Every small improvement would be a bonus.’ [P02]
‘If I look at how I am feeling now, then a little improvement would also be of help. If it improves with 50%, then it would be a lot better. Then you have more quality of life again. Then you can do more things. Especially the images I see, suppose it would be possible that the images I see stabilize a bit better, not entirely, then it is already much better. Say from 50% to only 5%. Yes, then I say; you can learn to live with that, that is manageable. Now it is still too much actually. I think all the small improvements are going to help.’ [P44]
Whether the patient would consider a vestibular implant at the moment of the interview was discussed by 19 patients, of which most patients mentioned they would definitely consider a vestibular implant at that moment. However, some patients would not consider a vestibular implant at the moment of the interview. Some of these patients indicated that they could still manage in daily life and one patient was insecure about potential complications related to the surgery.
Patients also expressed an opinion regarding the personal value of the vestibular implant. Patients stated that a treatment like a vestibular implant would be priceless or would be worth paying a high price for (in proportion to the economic status), with or without the support of health insurance:
‘I would do anything to get better. I cannot put a number on it. But it is worth everything to me.’ [P16]
‘One hundred, two hundred, three hundred thousand euros. Quite a lot for our standard [of living] anyway.’ [P19]
However, some patients explicitly indicated that they would like to have the vestibular implant reimbursed via health insurance and one patient mentioned clearly that a vestibular implant is not worth everything.
A detailed overview of the desired level of overall improvement, the proportion of patients who would consider a vestibular implant, and the estimated personal value discussed above can be found in Table 2, 3 and 4 in Online Resource 3.
Acceptable post-operative care
Expectations about the organization or number of post-operative care consultations were mentioned by 18 patients. Patients reported differences in the expected post-operative control consultations, ranging from a weekly to a half-yearly interval:
‘If I would qualify for an implant, I am prepared to do a lot. If I have to stand on the hospital’s doorstep every week, then of course, I will do that.’ [P22]
A detailed overview regarding the number of post-operative care consultations discussed above can be found in Table 5 in Online Resource 3.
(Un)acceptable risk factors
Some acceptable risk factors, such as post-operative infections or single-sided deafness, were mentioned during the interviews:
‘It would be a desirable thing to me. If you can get your balance back in exchange for deafness in one ear, then that will be a relief.’ [P35]
However, patients were more explicit about unacceptable risk factors, of which deafness (not specified as uni- or bilateral deafness) was frequently mentioned:
‘But for the implant treatment I have to know for sure that I would not lose my hearing. I don't want to try to solve one thing by damaging another.’ [P17]
Some patients did specify the laterality of hearing loss: they strictly indicated bilateral and/or unilateral deafness as an unacceptable risk factor. Other unacceptable risk factors pointed out were other (unspecified) organ damage, blindness, paralysis, amnesia, or infections. A detailed overview regarding the (un)acceptable risk factors can be found in Table 6 in Online Resource 3.