Introduction: The counseling of patients with idiopathic normal pressure hydrocephalus (iNPH) is difficult; there is variability in the diagnostic criteria, and a definitive diagnosis can only be made postoperatively. A patient's clinical response to shunting is also difficult to predict. This study examines the subjective experience of patients treated for iNPH, in order to identify the challenges patients face and to improve patient outcomes and satisfaction.

Methods: We reviewed a consecutive series of patients diagnosed with iNPH who underwent ventriculoperitoneal shunt surgery between January 2012 and March 2016 at our institution. Semi-structured telephone interviews were conducted with 31 patients. Interviews were analyzed using the principles of grounded theory.

Results: Thirty-one patients who underwent shunt surgery for iNPH were interviewed to reach saturation of themes. Seven themes were identified: 1) long preoperative course causes morbidity; 2) the decision to have shunt surgery is easy to make; 3) patients primarily desire to gain independence; 4) patients display variable levels of anxiety; 5) comorbid conditions interfere with postoperative assessment; 6) patients stand by their decision to have shunt surgery; 7) outside information is utilized prior to surgery.

Conclusions: Patients often present to the neurosurgeon frustrated and desperate after a long preoperative course. It is important to acknowledge the uncertainty regarding diagnosis and response to shunting when counseling patients. Comorbid conditions interfere with the ability to assess progression of iNPH and the effectiveness of the shunt. Patient caregivers play a large role in decision-making and clinical course, and should be included when counseling patients.

Patient Care: By understanding the subjective experience of patients with iNPH who undergo VP shunt insertion, the challenges patients face can be identified to improve patient satisfaction.

Learning Objectives: To understand the subjective experience of patients with iNPH who undergo VP shunt insertion.

References: 1. Mori E et al. Guidelines for management of iNPH (2nd edition). Neurol Med Chir (Tokyo) 52:775-809;2012. 2. William MA et al. Diagnosis and management of iNPH. Neurol Clin Pract 3:375-85;2013.