PPPD - the problem with the label
Reviewed by Victor Osei-Lah

The recently described diagnostic entity of persistent postural perceptual dizziness (PPPD) has its merits regarding guiding intervention and treatment, but the label itself can be problematic for patients. This study was designed to determine the views of patients of the PPPD label. Thirteen adults (10 female and three male) were recruited and subjected to a semi-structured interview exploring seven 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.” All participants completed the dizziness handicap inventory (DHI), dizziness related disability (DRS) and anxiety symptoms questionnaire (GAD-7). Four main themes (each with sub-themes) emerged from the interviews: illness validation (relief of receiving a diagnosis), re-evaluating illness beliefs following diagnosis, terminology, and lack of psychological attribution. The first two themes were viewed in a positive light by most patients, namely finally receiving a diagnosis (a label), often after a tortuous and prolonged illness journey. This provided validation of the notion that they are not imagining their symptoms and empowered them to engage with intervention. On the contrary, most patients found the last two themes confusing. For instance, they found the term PPPD nebulous and so chose not to use it. There were frustrations about having to explain PPPD to people including health professionals, and lack of acceptance of the link between PPPD and anxiety, stress and depression. Of note, some interpreted ‘persistent’ as meaning ‘poor prognosis’ while others found the label stigmatising. While the authors acknowledged the hard work of the Barany Society to classify and standardise vestibular disorders, one conclusion drawn from this study is the need for simpler terminology and the consideration of patient-public representation in future revisions of this disorder (and for that matter, others as well). This, the authors argue, will empower patients to manage their condition effectively. I could not agree more. In the meantime, it is the responsibility of all practitioners to explain PPPD to the understanding of the patients.

Is ‘persistent postural perceptual dizziness’ a helpful diagnostic label? A qualitative exploratory study.
Herdman D, Evetovits A, Everton HD, Murdin L.
J VESTIB RES
2021;31(1):11-21.