Is ‘persistent postural perceptual dizziness’ a helpful diagnostic label? A qualitative exploratory study

Abstract

BACKGROUND:

Persistent Postural Perceptual Dizziness (PPPD) is a recently defined functional syndrome. In other functional disorders there has been concern that the label itself can have negative effects, but research on patient views of PPPD is lacking.

OBJECTIVE:

To understand patient views of the PPPD label

METHODS:

Semi-structured interviews were conducted with 13 people with PPPD and thematically analysed.

RESULTS:

Four themes were identified. Theme 1 reflects reassurance and validation received through a ‘label’. Theme 2 reflects re-evaluation of illness-beliefs, with the diagnosis giving greater perception of control but also perception of having serious consequences. Theme 3 reflects difficulty understanding terminology. Participants rarely understood “persistent”, “perceptual” and “postural”. They did not tend to use the term “PPPD” to others or themselves. Some interpreted “persistent” as meaning “poor prognosis”. Theme 4 reflects lack of psychological attribution, since participants normalised the experience of distress, but did not view this as part of PPPD.

CONCLUSIONS:

These data support the relevance of PPPD beyond simply classification. However patients found the components of the term itself confusing and did not tend to adopt it when relating their condition to others or themselves. Simplifying the nomenclature could facilitate shared understanding and management, even potentially influencing outcome.

Keywords

PPPD persistent postural-perceptual dizziness qualitative labelling medical label

1 Introduction

Persistent postural-perceptual dizziness (PPPD) is a newly defined diagnostic syndrome presenting with one or more symptoms of dizziness, unsteadiness, or non-spinning vertigo that are present on most days for three months or more and are exacerbated by upright posture, active or passive movement, and exposure to moving or complex visual stimuli [21]. It is considered within the spectrum of other ‘persistent physical symptoms’ or ‘functional’ neurological disorders, where symptoms represent a change in ‘functional’ rather than ‘structural’ abnormality of bodily systems [5, 23]. The exact pathophysiology of functional vestibular disorders such as PPPD is not yet clear. However, the processes are known to involve normal physiological and behavioural responses to an acute postural threat, which become inappropriately sustained after its remission [6 , 20]. The classification of vestibular disorders emphasises the need to make the diagnosis based on positive features of the patient history rather than by the absence of structural pathology and independent of any psychiatric conditions that may coexist [21].

The term ‘Persistent Postural Perceptual Dizziness’ unifies the key features of its various overlapping predecessors, such as chronic subjective dizziness, phobic postural vertigo, space-motion discomfort, and visual vertigo [21, 22]. It has been recognised by the Word Health Organisation [27] and recently established International Classification of Vestibular Disorders [21]. The new name was chosen by a group of clinicians and academics with the aim of providing an aetiologically neutral but positive diagnostic term that lacks causal inferences about whether the symptoms have arisen from a structural lesion or a purely ‘psychogenic’ process [18].

Once recognised, treatment starts with information counselling for the patient about the diagnosis, followed by recommending appropriate therapy tailored for their needs. Treatment options include vestibular physiotherapy, medication and cognitive-behavioural therapy, all of which are medium term interventions strongly dependent for success on patient engagement. Thus, the identification of patient beliefs, expectations and attitudes is an essential pre-requisite for shared decision-making and developing a plan of care.

The importance of diagnostic labels has long been acknowledged to go beyond the simple utility of classification and therapeutic algorithms. They carry meaning out of the clinic and into the real world, where expectations, explanations of illness experience and the reactions of others are pinned to them. In short, calling an illness by a name changes the illness experience and has been shown to influence outcome and potential for social support [10, 16]. The ways in which people with PPPD perceive themselves, label their symptoms and appraise stressors may potentially perpetuate or exacerbate their symptoms [14]. Labels can also lead to issues for healthcare professionals who fear giving an unwelcome diagnosis might lead to conflict. Also there is a theoretical concern that the use of terms such as ‘persistent’ could influence beliefs about possible outcomes. However, on the other hand, finding a label that is in harmony with the self-perception of the condition can provide meaning, emotional relief and recognition, as well as facilitation of therapeutic engagement.

Terms used to describe similar phenomena in the past, such as ‘medically unexplained symptoms’, that were quickly adopted without first examining patient preferences, have in some cases garnered negative reactions [15, 17], led to further stigma and hampered relationships with patient groups. This outcome should clearly be avoided where possible.

Since PPPD is a new diagnostic label, little is known about how it is perceived by patients. The published paper proposing the term does not describe any direct patient involvement in the process of devising the nomenclature. It is therefore not clear if the label is disabling or enabling, or what the label implies from the patient perspective. The present study was therefore designed to develop further the work of the classification committee by exploring patient perceptions of this term.

2 Methods

This was a qualitative study. All participants provided written informed consent. The study was approved by the National Heath Research Authority Service (19/LO/1482). The study ran from October 2019 to January 2020 and is registered at clinicaltrial.gov (NCT04260568).

2.1 Eligibility screening

Participants were eligible if they were 18 years or older and had a diagnosis of Persistent Postural Perceptual Dizziness (PPPD) according to the diagnostic classification of the Barany Society [21].

Participants were excluded if they did not speak English adequately for the study purposes or could not complete the interview for other reasons. Participants were also excluded if they had acute severe psychiatric disorder (e.g. psychosis), or cognitive impairment (mini Mental State Examination <24) since this would limit their capacity to complete the interview.

2.2 Recruitment

Consecutive patients were recruited through the tertiary vestibular clinic at Guy’s & St Thomas’ NHS Foundation Trust by the Consultant Audiovestibular Physician (LM) who had made the diagnosis. Sampling became more purposive during the study period to recruit men and women, and people from a range of racial/ethnic backgrounds. We aimed to interview a minimum of twelve participants and review the need for further recruitment until all authors agreed the interviews did not yield meaningfully novel information (data saturation).

2.3 Diagnosis

Participants fulfilled all Barany Society criteria for PPPD. The diagnosis was made by the Audiovestibular Physician (LM) only following extensive history, physical examination, and when necessary vestibular function testing and diagnostic imaging with other investigations as required to assess the presence or absence of conditions in the differential diagnosis according to best practice guidelines.

All participants had at some point been given the diagnostic name and it was explained to them as a new term for this clinical presentation which has evolved from recent research. It was explained as a problem with function of the balance system, considering initiating and perpetuating factors and framed at the interface of the psychological and physical.

Patients were given treatment options including physiotherapy. Medication and psychological therapy were also discussed and offered if appropriate. At the end of the consultation patients were given a freely available information leaflet [24] and invited to reflect on how the diagnosis did or did not fit with their experience before the next review.

2.4 Semi-structured interviews

Semi-structured interviews were conducted by one of two medical students, following a topic guide (see Appendix). The medical students were fully trained and supervised by the qualified research staff to ensure that interviews were conducted appropriately; however the treating physician was not present at the interview itself so as not to inhibit participants from being potentially critical about the diagnosis if they wished. Participants were aware of the background of the interviewers and that the interview was separate from their care and would not affect it in any way.

The topic guide explored key topics: (1) the patient’s narrative; (2) the illness experience; (3) receiving the diagnosis; (4) their understanding of the PPPD label and beliefs; (5) expectations of recovery and treatment; (6) psychological and emotional factors; and (7) free comments. The interviews were audio recorded and transcribed verbatim. The interview schedule allowed for flexible probing of themes as they arose.

2.5 Data analysis

Thematic analysis was conducted using NVivo (QSR International, London, United Kingdom) following the recommendations of Braun and Clark [2]. An inductive approach to coding was used, and therefore, codes were added as they were identified in the data. After familiarisation with the data, first level descriptive codes were recorded line by line. Initial codes were refined to develop a coding framework by consensus agreement amongst the authors and transcripts were coded again according to the coding framework. The coded data was analysed to identify themes and subthemes. Themes were checked against each other and back to the original data set and uncoded text examined for disconfirming evidence. Quotations were extracted to illustrate subthemes.

The analysis group included all authors, consisting of a vestibular physiotherapist (DH), two medical students (AE & HD) and an Audiovestibular Physician (LM). AE & HD generated the initial codes and all authors independently reviewed the transcripts and met during the data collection and analysis period to discuss, compare and refine coding and final themes. Data analysis was approached with critical reflexivity in order to reduce the risk of bias. The team worked to ensure the analysis was grounded in the data and were encouraged to challenge each other’s assumptions and interpretations.

3 Results

The sample included 10 women (77%) and 3 men (23%), with a median age of 51 years (IQR 39 – 54; range 18–82). Participants had a mean duration of symptoms of 7 years (SD 4.5; range 6 months – 14 years). Seven (54%) participants were white British and two (15.4%) were of Other White background, others were from other ethnicities including Black British, Asian British, Black Caribbean and mixed backgrounds. Table 1 summarises scores on self-report questionnaires completed by ten of the participants during their consultation that indicated that the sample was, on average, experiencing moderate levels of dizziness interference. Three participants reported recent or longstanding severe disability indicating an inability to work, and six participants scored above the threshold for probable anxiety.

Table 1
Self report measures for dizziness, anxiety and mood (n = 10)

Variable Mean (SD) or n (%)

Dizziness interference (DHI) 56.2 (28.3; range 24–100)

Mild (0–30) 3 (30%)

Moderate (31–60) 2 (20%)

Severe (61–100) 5 (50%)

Dizziness related disability (DRS) 2.9 (1.5)

No disability (0-1) 3 (30%)

Mild disability (2) 0 (0%)

Moderate disability (3) 4 (40%)

Recent severe disability (4) 1 (10%)

Long term severe disability (5) 2 (20%)

Anxiety symptoms (GAD7) 8.3 (7.7)

None or mild anxiety (0–9) 4 (40%)

Probable anxiety (≥10) 6 (60%)

Variable	Mean (SD) or n (%)
Dizziness interference (DHI)	56.2 (28.3; range 24–100)
Mild (0–30)	3 (30%)
Moderate (31–60)	2 (20%)
Severe (61–100)	5 (50%)
Dizziness related disability (DRS)	2.9 (1.5)
No disability (0-1)	3 (30%)
Mild disability (2)	0 (0%)
Moderate disability (3)	4 (40%)
Recent severe disability (4)	1 (10%)
Long term severe disability (5)	2 (20%)
Anxiety symptoms (GAD7)	8.3 (7.7)
None or mild anxiety (0–9)	4 (40%)
Probable anxiety (≥10)	6 (60%)

DHI = Dizziness Handicap Inventory; DRS = Disability Rating Scale; GAD7 = Generalised Anxiety Disorders –7.

We identified 4 themes and 11 subthemes, illustrated in Fig. 1. Although we present the themes and subthemes separately, they are, by nature, strongly inter-related.

Fig. 1

Four themes were identified, shown in this figure with associated subthemes listed under each theme.

3.1 Theme 1: Illness validation

This theme reflects relief, reassurance and validation received through acquiring a label.

3.1.1 Illness validation subtheme: Relief

Many participants described a difficult diagnostic journey seeing many different health professionals and all described diagnostic confusion and uncertainty. Some participants had acquired several different labels whilst others had previously had no clear explanation. Participants expressed relief to be able to match symptoms to the condition.

‘ … it kind of felt like a weight lifted off my shoulders, because I know people don’t think that a diagnosis is important because it’s about managing the symptoms, but it just felt like a weight lifted because I was, I just knew that, everything that the consultant said to me, the symptoms all matched up to how I was feeling’ (P6)

For some participants the relief centred around the experience of attending a specialist centre as a final opportunity to acquire a diagnosis and explanation for their symptoms.

‘It was nice to actually put a name to it, because it seemed like no one knew what was going on. It was like everyone was going to give up … I spent a long time trying to chase up a lot of symptoms and for about a decade people weren’t taking me seriously … ’ (P12)

For most participants, they were confident in the diagnosis as they were able to match their symptoms and experience to the diagnosis resulting in reassurance around the exclusion of other possible conditions.

‘It was just really reassuring having someone acknowledge the symptoms that I was experiencing … because I was convinced that I had some form of, unresponsive form of BPPV, and I just couldn’t work out why I was feeling like this’ (P4)

‘..all the years I’ve not known what it was, and it was just really worrying me to the point that my health anxiety was so bad … there was something going on which no one was picking up on … ’ (P6)

3.1.2 Illness validation subtheme: Validation

In addition to being relieved to be able to match symptoms to a label, participants also felt a sense of validation that the symptoms were not ‘imaginary’ or fraudulent and that they have a condition recognised by relevant organisations.

‘It really was a relief to think yes there are other people like me and you know there are, there is research that’s been going into it and it actually has a name. So I can actually say to people who ask that it is a condition recognised by the world health authority. It isn’t me that’s, you know, making it up … Because I mean, you know most people that have got this condition probably look very well and so it is nice to say well actually I do have something, yeah, I’m not a fraud.’ (P1)

Participants reported that acquiring a valid label supported social interactions due to the social stigma of having unexplained symptoms.

‘ … being able to put a name to it and saying to people, this is what I have its very helpful because it makes people more accepting I suppose … ’ (P9)

‘Yeah I think I quite like having a label, it means it’s not in my imagination as it were … it takes the stress off describing it at work, it’s not just that I’m going to dinner early I’ve actually got a condition.’ (P10)

3.2 Theme 2: Re-evaluating illness beliefs

The second theme reflects participants re-evaluating their illness perceptions following the diagnosis.

3.2.1 Re-evaluating illness beliefs subtheme:Greater perception of treatment control

Most participants expressed a greater perception of treatment control after the diagnosis. They perceived that rehabilitation would be more tailored around their needs and thus more effective. Even participants with negative experiences of vestibular rehabilitation became more hopeful:

‘I mean obviously I’ve got poor experience of having had the stabilisation exercises, but I realise that this is a new condition, and the rehabilitation will be tailored exactly to the condition, so I’m positive about it.’ (P1)

Most participants did not view treatment as curative, but rather a means to control symptoms and allow them better quality of life:

‘I’m doing physio at the moment; I’m just waiting for somebody to give me medication. And hopefully that can help. It’s not about, it’s not about curing it, I don’t think there is a cure for it, it’s about controlling it. Instead of it controlling me, me controlling it.’ (P2)

3.2.2 Re-evaluating illness beliefs subtheme: Greater perception of personal control

Participants acknowledged greater perception of personal control, particularly the need to take an active role participating in vestibular rehabilitation and expose themselves to potentially fearful or symptom provoking activities.

‘I think it’s up to me, yeah. I think it’s definitely up to me to say, look, I know you’re really dizzy and it’s going to get worse, but you’ve got to try to do this to get better.’ (P1)

However, in other areas of their life participants expressed a lack of agency over the symptoms.

‘It stops me from having a social life, stops me going to work, stops me from doing anything. It controls me, I don’t control it, it controls me.’ (P2)

3.2.3 Re-evaluating illness beliefs subtheme: Chronic timeline

However, most participants anticipated a chronic timeline and that a full recovery was probably not realistic. They usually based this on their own lived experience of persistent symptoms, and/or a reflection of the symptoms being present constantly, although some also thought that the nomenclature ‘persistent’ would mean that the symptoms would persist indefinitely. One participant expressed their reservation of getting their hopes up based on previous experience:

‘Until I start seeing progress, I’m not going to think about that now because I just put my hopes up and get shattered again so it’s pointless. Because I did that when they gave me the vestibular migraine diagnosis, and it didn’t work. So until I start seeing progress … then I’ll start thinking I finally got somewhere.’ (P2)

3.2.4 Re-evaluating illness beliefs subtheme: Serious consequences

Participants also perceived PPPD as a condition that resulted in serious consequences. The consequences usually revolved around impact on quality of life, social interactions and safety.

‘In the sense that it is debilitating but although it’s not life threatening it’s not necessarily curable … I don’t work anymore so that’s been a massive consequence. You can’t plan much as you feel different every day, I can’t exercise or be social, it causes huge anxiety and you lose your confidence.’ (P13)

3.3 Theme 3: Terminology

Theme 3 reflects the difficulty understanding the terminology, including how this can be a barrier to social support and acceptance

3.3.1 Terminology subtheme: Poor understanding of specific terminology

Participants rarely fully understood the meaning of all of the words ‘persistent’, ‘perceptual’ and ‘postural’. Participants almost unanimously defined ‘persistent’ as symptoms that were present all the time, rather than symptoms that had been present for a specific period. Some also thought that ‘persistent” indicated a low likelihood of symptoms improving. ‘Perceptual’ was the least well understood term with most participants failing to give an answer when asked to explain the term. Some participants also thought ‘postural’ related to the posture of their spines.

‘Well I suppose my posture, although I’m quite good at sitting properly and walking properly’ (P3)

“I’m dizzy 100% of the time so it’s definitely persistent.” (P1)

“I feel like I’ve been given this diagnosis and it’s not going to go away.” (P3)

One participant reflected the lack of understanding towards individual terms, instead choosing to identify with the acronym.

‘None of them, none of them [make sense]. But when the lady told me what I had wrong with me, I said to her, is there a shorter version of it, because I don’t understand. She said yeah, ‘3PD’, so to me 3PD means more to me that what the whole things mean.’ (P2)

3.3.2 Termnology subtheme: Relating to the symptom profile

Participants still identified with the diagnosis since they were able to attribute their bodily sensations to the symptom profile, even if they were not able to understand the terminology present in the diagnostic label. Based on this the majority were accepting of the diagnosis and felt it made sense to them.

‘I had to go away with the fact sheet and see whether I thought the diagnosis fit with me and to be honest I did identify with the fact sheet and I guess I thought yeah this is it … ’ (P13)

‘I guess a lot of the symptoms do resonate with me and I think that I have got that, probably triggered by an acute BPPV event of something … yeah I guess it’s a functional problem.’ (P4)

Although some participants still felt ‘puzzled by it’ (P7), illness coherence was evidenced by others through the use of metaphors, such as problems with ‘software’, maladapted recovery from an acute event, and parallels with the experience of other persistent physical symptoms.

‘I guess it was a software problem rather than a hardware problem, kind of there’s nothing physically wrong but I’m not properly integrating signals to maintain my balance, they’re working but I’m not properly integrating them in my brain.’ (P9)

3.3.3 Termnology subtheme: Choosing not to use the terminology

Because of the confusing verbiage, participants did not tend to use the ‘PPPD’ terms to explain the illness to others or when thinking about the condition themselves. Part of the problem explaining the condition to others was based on difficulty explaining an understandably complex problem, although many participants made clear that the label itself made it more difficult and potentially stigmatising.

‘I felt the diagnosis sounds silly and it is embarrassing saying it out loud and no one really knows what it is, it’s a mouthful and it’s a description of symptoms right? It doesn’t sound like an illness and people raise their eyebrows when I say it so it’s not a label that I love having, people question it whereas they didn’t question vestibular migraines.’ (P13)

‘For big words like that … I don’t associate myself with things like that.’ (P2)

“I tell people I’ve got vertigo.”(P9)

3.4 Theme 4: Lack of psychological attribution

The final theme reflected the significant psychosocial impact of the condition as a secondary consequence, rather than direct cause.

3.4.1 Lack of psychological attribution subtheme: Anxiety and depression

It was common for participants to report feelings of anxiety and depression. Anxiety centred around feeling vulnerable and mood was affected by the thought of managing the symptoms long term and the restrictions placed on their daily life.

‘The low mood, I get like that because I’ve got so [many] things wrong with me, and I’m on the tablets … sometimes I feel really really really low. I will just sit down and cry.’ (P8)

3.4.2 Lack of psychological attribution subtheme: Frustration

Participants expressed frustration; some targeted towards their own body and the perceived injustice, whilst others reserved frustration towards healthcare professionals due to the diagnostic uncertainty or, as in the following example, ongoing lack of awareness and understanding towards the condition.

‘It makes me very frustrated, because a lot of time, when I went to see someone … I’ve had to spend probably the majority of the treatment time explaining what PPPD is, when I’m not there for that reason.’ (P1)

3.4.3 Lack of psychological attribution subtheme: Normalising the experience of illness distress

A few participants could see value in the link between PPPD and anxiety. This occurred when there was a clear stressor or temporal link between their symptoms and emotions.

‘It feels intuitive that it might do, to me, and it has coincided with particularly stressful periods at work … and my boss started picking on me. So yeah I can see why [stress] might be one of the factors at work here.’ (P10)

However, many participants did not acknowledge the link between anxiety, stress and their physical symptoms. They used examples of the lack of temporal link between their symptoms and emotions, or instead viewed their anxiety as the result of dizziness, preferring instead to view illness distress as a natural consequence of managing objectively challenging symptoms.

‘There doesn’t seem to be any link between my mental health and my dizziness, because it comes … when I’m on my own when I’m relaxing … Often it’s the dizziness that will trigger my anxiety.’ (P12)

‘A lot of this seems to be centred around anxiety and I don’t actually feel that anxious, as in, I don’t feel the anxiety triggering it. But obviously, feeling a bit uneasy and unstable does make you feel a bit anxious.’ (P3)

4 Discussion

This is the first study to explore the perceptions of the diagnostic label ‘Persistent Postural Perceptual Dizziness’ in people with this condition. Four themes were identified reflecting the complex nature of reassurance and illness validation, the ways in which patients re-evaluate beliefs about their condition and appraise their emotions, and struggle to understand terminology. These data can inform holistic approaches for clinicians treating patients with PPPD and scientists with interest in taxonomy of vestibular disorders.

The identified (sub)themes were strongly inter-related. For example, the perceived beneficial ‘illness validation’ of receiving a diagnosis (theme 1) was offset by the effects of obscure terminology lacking legitimacy (theme 3), which exacerbated distress and frustration (theme 4). Clinicians may fear diagnosis might lead to worse outcomes through self-fulfilling prophecies of non-recovery, validating sickness roles and providing a psychosomatic illness label. Thus, understanding the ways persons with PPPD perceive themselves, label their symptoms and appraise stressors is crucial to make sense of how people experience and manage their condition.

Participants in this study frequently attributed their symptoms to PPPD and a diagnosis was perceived as helpful since it brought an end to the burden of uncertainty and signalled a course of action to follow. The ‘common sense model of self-regulation in response to health threats’ provides a framework in which to interpret these findings [13, 14]. It is normal, when experiencing symptoms or bodily sensation, to want to find a label or diagnosis to be able to understand these symptoms. Likewise receipt of an illness label or diagnosis can motivate individuals to find symptoms or bodily sensations in line with that label [3, 12]. The ‘common sense model’ proposes that lay interpretations of information and personal experiences directly influence coping strategies, which in turn influence outcomes.

After the diagnosis, participants had a greater perception that the condition could be kept under control, although usually not cured, and had a greater understanding of their role in achieving this. However, participants had negative beliefs about the expected time-course and consequences of PPPD. These representations were usually a result of their own experience over time and how the condition had already impacted them physically and socially. Some of the participants also related the term ‘persistent’ to a negative future outcome. Nevertheless, there were signs of participants willingness to re-evaluate these beliefs as time progresses. A previous qualitative study focused on the impact of PPPD on personal, social and work life and also highlighted the need to consider the contextual factors to facilitate a person-centred approach [19].

The qualitative study by Sezier et al. [19] also showed that participants with PPPD struggle to find the vocabulary that encapsulates their experience which is perceived as embarrassing and frustrating. The current results extend this by showing how the label itself was perceived as illegitimate and that participants rarely understood the meaning of the individual constituent word elements. This threatens the social validation of the diagnosis evidenced by participants’ unwillingness to use ‘Persistent Postural Perceptual Dizziness’ to explain the illness to others or when thinking about the condition themselves. This is something that could potentially change as the condition becomes more widely recognised in broader society.

Comparisons could be drawn with the diagnostic label Benign Paroxysmal Positional Vertigo (BPPV). Not only could the acronyms be easily mixed up, but BPPV is an equally complicated term, with constituent words which in our experience are rarely fully understood or used by patients. We are not aware of any studies with data on patient perceptions of the term BPPV, but anecdotally as clinicians we frequently encounter patients describing BPPV as ‘crystals in my ears’ or some such substitute rather than using the precise technical term because of its unwieldiness. Future work could examine patients’ perceptions of the term BPPV by way of comparison. However, we would hypothesise that health beliefs are a less important influence on outcomes in BPPV than in PPPD, since psychosomatic mechanisms are not thought to play a role in BPPV in most cases.

Participants reported broad ranging impacts of dizziness on their mood and functioning, consistent with the wider literature [7 , 11]. The descriptions of anxiety, fear of falling and reduced activity are consistent with pathophysiological [21] and cognitive-behavioural [26] models of PPPD. Despite this, participants did not always acknowledge bidirectional relationships between dizziness and psychological state. More than half of participants in this study scored above the categorical threshold for clinically significant anxiety and it is important to reduce the stigma around mental health. Nevertheless many participants viewed this as pathologizing the experience of negative emotions which occur in response to challenging and disruptive symptoms. These findings are unlikely to be unique to PPPD, since Coventry et al. [4] also found a preference amongst both patients and practitioners to normalise the experience of distress in long term conditions. Considering the severity of illness distress, its duration, and consequential impact on function is therefore important to identify individuals who would benefit from clinical intervention [9]. Incorporating education about adaptive acute anxiety responses and integrated models into the explanation can also aid the therapeutic encounter.

The Barany Society has worked hard to standardise nomenclature for vestibular disorders and oversee development of the International Classification of Vestibular Disorders [1]. The adoption of the term has no doubt stimulated research into this common clinical presentation and the patients in this study recognised and appreciated the importance of this research. Developing formal diagnostic criteria has been useful in both the clinical and research settings. The name was chosen by a committee of clinicians and academics with varied perspectives but there was no mention of any direct patient involvement in the process of devising the nomenclature [21]. The current data suggests consideration of simpler terminology in future iterations of this condition’s classification. Although the term ‘perceptual’, for example, fulfils the requirement of neutrality, it lacks specificity since symptoms are by their nature ‘perceptual’ and is not well understood by patients. It also could be understood to imply that there is no pathophysiological basis for the experience, although our patients did not report this concern. Experiences of stigma in the participants were also present due to widespread unfamiliarity with the condition. It could therefore be beneficial to bring terminology in line with other areas which are starting to generate greater awareness, such as ‘functional’ neurological disorders.

When considering nomenclature it may not be realistic to find a term everyone is happy with. Rather the question could be what term is associated with the smallest ‘number needed to offend’, which was the method described by J. Stone et al. [25] for functional neurological disorder. Stone’s concept of ‘offence’ was determined by whether the different terms implied the patient was ‘putting on’ or ‘imagining’ their symptoms or that they were ‘mad’. The current data expands this concept since participants expressed the desire for a label to garner social support. S. Noble et al. [16] found that university students were more likely to respond sympathetically and supportively to hypothetical scenarios about a close friend when a label of chronic fatigue syndrome was used compared to no-label. Future quantitative research could therefore consider not only what label gets the best outcome, but what ‘outcome’ is considered important for patients.

A strength of the study was that the interviewers were medical students rather than healthcare professionals allowing the participants to open up about their true feelings and not to be influenced by the interviewer’s professional background or concern that critical comments about the diagnosis might offend or upset the staff responsible for their care. The sample size was small and slightly biased towards females, but comprised participants with varied racial/ethnic backgrounds, wide range of ages, illness duration, disability and anxiety levels. The purposive sampling does have the potential to bias participation. The study was also conducted in one NHS hospital in London and non-English speakers were excluded thus limiting representation of an even more diverse group. It is also important to acknowledge that this study explored perceptions of a specific patient group who had been assessed at a specialist centre and that this cannot be assumed to be representative of the experience of other patients with PPPD in other settings. Further research should explore in-depth cultural differences in the representations of and metaphors used to describe PPPD and how this influences dizziness management, and the perceptions of patients with PPPD in other healthcare settings. Our participants had had the label for less than two years, since the label itself is not much older than this.

Some of the issues identified by our study participants may evolve and lessen as the term “beds down” and is in greater use in different communities.

In conclusion, these data support the relevance of PPPD beyond the simple utility of classification. Having a diagnosis and label for functional vestibular symptoms is helpful to individuals since it provides relief and validation and a label that fits the symptoms of this population. Participants also support the need for research into the condition that the label has facilitated. However there can be unintended negative consequences to labels. Also, ideally, a label will be one that empowers individual sufferers to understand and manage their condition and explain it to those around them when necessary. Clinicians should work collaboratively with patients to explore their illness beliefs, clarify their understanding and the acceptability of the label and what it implies for them. Scientific committees for the classification of vestibular disorders should also consider patient-public representation in future when making decisions about terms used to diagnose and classify illnesses.

Footnotes

Appendix:

Acknowledgments

The authors would like to thank the participants in this study for their time and input.

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