Abstract
Background
Idiopathic normal pressure hydrocephalus (iNPH) is a potentially reversible disease. Surgical results have been well described in the literature, but only a few studies investigated the subjective outcome. This study aimed to investigate the patient’s expectations about surgery, the perceived improvement after treatment, and its impact on the quality of life (QoL).
Methods
A new dedicated survey was created to investigate subjectively different aspects of the treatment pathway of iNPH (diagnosis, symptoms, expectations from surgery, surgical operation, surgical results, and postoperative QoL), together with the SF-12 and EQ-5D as validated, standardized tools.
Results
Forty-five patients were included. Forty-three percent of cases received the diagnosis after at least 1 year, with symptoms worsening in 73%, and frustration in 93%. Reaching a diagnosis was important for 100% of patients, with high expectations from surgery; 86% of them hoped to return to a normal life. Seventy-two percent of patients reported a significant postoperative improvement (walking 68%, mood 57%). Memory and incontinence did not improve in 64% of cases. Subjectively, QoL improved in 72% of cases. The SF-12 score is comparable to controls >75 years, but lower than the 65–75 years group. The EQ-5D index was 0.66 (lower than those of the 65–75 years group = 0.823, and >75 years group = 0.724). Pain and discomfort, instead, were lower compared to the healthy population (43% vs 56%). The idea of having an implanted device and of long-term follow-up is not worrying for 80% of patients; approximately two-thirds of them reported a regained control of their lives.
Conclusions
The importance of early diagnosis and patients’ perspective, alongside clinical evaluation, is highlighted. The self-reported evaluations on symptoms and QoL, along with the balance between postoperative worries and benefits, should be discussed preoperatively with patients and relatives, and included postoperatively to comprehensively assess the surgical outcome.
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Supplementary Fig. 1
Bar charts showing the Likert score results of patients reaching the diagnosis before and after 6 months from the reported clinical onset. A, postoperative QoL improvement (Contingency coefficient (CC)=0.28, p=0.44); B, postoperative symptoms improvement (CC=0.12, p=0.96); C, postoperative gait improvement (CC=0.28, p=0.54); D, postoperative memory improvement (CC=0.06, p=0.99); E, postoperative mood improvement (CC=0.27, p=0.6); F, postoperative urinary incontinence improvement (CC=0.42, p=0.16); G, postoperative willingness of still undergo the operation, if patients could go back before surgery (CC=0.21, p=0.72); H, postoperative perceived regained control of life (CC=0.15, p=0.91). (PNG 311 kb)
Supplementary Fig. 2
Bar charts showing the Likert score results of patients reaching the diagnosis before and after 1 year from the reported clinical onset. A, postoperative QoL improvement (Contingency coefficient (CC)=0.32, p=0.3); B, postoperative symptoms improvement (CC=0.29, p=0.42); C, postoperative gait improvement (CC=0.36, p=0.22); D, postoperative memory improvement (CC=0.34, p=0.31); E, postoperative mood improvement (CC=0.32, p=0.42); F, postoperative urinary incontinence improvement (CC=0.38, p=0.27); G, postoperative willingness of still undergo the operation, if patients could go back before surgery (CC=0.13, p=0.94); H, postoperative perceived regained control of life (CC=0.17, p=0.85). (PNG 322 kb)
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Belotti, F., Pertichetti, M., Muratori, A. et al. Idiopathic normal pressure hydrocephalus: postoperative patient perspective and quality of life. Acta Neurochir 164, 2855–2866 (2022). https://doi.org/10.1007/s00701-022-05275-x
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DOI: https://doi.org/10.1007/s00701-022-05275-x