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

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.