Establishment and Benefits of a Normal Pressure Hydrocephalus Support Group on Patient Education and Experience

Normal pressure hydrocephalus (NPH) is a debilitating, neurological condition that can lead to mental deterioration. With the diagnosis and treatment of NPH constantly evolving and its symptoms worsening with age, education for patients and their families is crucial. In this study, we aim to explore the potential educational benefits of a physician-led NPH support group.

Between December 2015 and November 2018, six semiannual NPH support group meetings were held for patients and their families. Attendees, ages 20-90, completed a Likert scale-based survey designed to assess the support group's educational benefits using the following primary outcome variables: (1) subjective knowledge, (2) perceived utility/efficacy, and (3) patient satisfaction.

Our survey data suggests that patients and their family members agree on the efficacy of the support group in learning about NPH. They felt that the support group served its purpose and improved their comfort/knowledge regarding NPH. There was consensus about sustaining and maintaining the support group for the future. Of 65 survey responses, the composite average score of questions pertaining to subjective knowledge, perceived utility/efficacy, and patient satisfaction was 4.5 out of 5.0.

We demonstrated that support groups are effective in educating the adult NPH population and their family/friends about NPH onset and treatment. Enhanced educational awareness for patients and families can help patients cope with their neurological condition and improve patient adherence to follow-up and physician recommendations.