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

Abstract

Introduction: 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. Methods: 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. Results: 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. Conclusion: 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.

Participation in pulmonary hypertension support group improves patient‐reported health quality outcomes: a patient and caregiver survey

“…A few examples include: improvement in healing from participating in a bereavement SG, 18 improved feelings of self-worth and self-value from a SG to prevent gender-based violence, 19 higher emotional, social, and physical functioning with a breast cancer SG involvement, and better understanding of medical condition from joining a hydrocephalus SG. 20 Nevertheless, the educational and emotional support value of any given SG is variable due to lack of a consistent curriculum and design and it is premature to draw conclusions of cause and effect without a uniformly structured SG and properly controlled studies. Comparisons to SG(–) for these secondary health-related QOL measures are unable to be performed as non-participators were not asked to answer how SG helped them.…”

“…Questions regarding (i) “feeling like a burden”, (ii) “PH controlling my life”, and (iii) “having confidence in public places” are the likely areas assessed by the emPHasis-10 survey that SG participation could have a positive influence on; as is intrinsic to the definition of a SG (Merriam-Webster dictionary): “a group of people with common experiences and concerns who provide emotional and moral support for one another” and as is evident in the outcomes of involvement in SGs for various other chronic conditions. 12 , 13 , 20 , 37 – 40 Other (7 of 10) domains in the emPHasis-10 may not directly reflect on the benefits brought on by SG participation and further studies with complex QOL tools like CAMPHOR 16 or PAH-SYMPACT 41 may be required to elucidate differences.…”