'I'm back': journeys to diagnosis, symptoms, and change with treatment in normal pressure hydrocephalus.

Normal pressure hydrocephalus (NPH) is a potentially treatable neurological condition that may be underdiagnosed. We conducted a qualitative study with aims to (1) explore the breadth and impact of symptoms from onset and (2) identify barriers and facilitators to obtaining care. We conducted semi-structured interviews with people who had been diagnosed and treated for NPH and their family members and analysed these using reflexive thematic analysis, with input from people with lived experience. From 14 interviews, we identified four symptomatic themes: (1) loss and return of self with treatment, (2) changes in mood, motivation, behaviour, and sleep, (3) functional impact, and (4) reduced awareness of symptoms. After shunting, several participants perceived marked and sustained improvement of daily functioning, social interaction, or personal interests, often expressed as being 'back.' Barriers and facilitators to care included waiting lists, misattribution of symptoms, self-advocacy, and comprehensive clinical assessment. Our findings highlight that people with NPH experience changes in identity, mood, motivation and social functioning as well as gait, cognition and continence. Care of NPH could be improved by incorporating outcomes that matter to people with NPH in clinical practice, such as restoration of self and former emotional engagement, alongside assessment of gait.