The Subjective Experience of Patients Undergoing Shunt Surgery for Idiopathic Normal Pressure Hydrocephalus

Objective: The counseling of patients with idiopathic normal pressure hydrocephalus (iNPH) is difficult; there is variability in the diagnostic criteria, and a definitive diagnosis can be made only postoperatively. A patient's clinical response to shunting is also difficult to predict. This study examines the subjective experience of patients treated for iNPH, 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. Semistructured 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 show variable levels of anxiety; 5) comorbid conditions interfere with postoperative assessment; 6) patients stand by their decision to have shunt surgery; and 7) outside information is used before 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.