Idiopathic Normal Pressure Hydrocephalus and Caregiver Burden: A Scoping Review
James Kelbert1, Ashley Kern1, Ganesh Murthy2
1University of Arizona College of Medicine- Phoenix, 2Banner University Medical Center- Phoenix
Objective:
To determine the extent of caregiver burden for patients with idiopathic normal pressure hydrocephalus.
Background:
Idiopathic normal pressure hydrocephalus (NPH) is a condition with variable presentation but is classically recognized by the triad of gait disturbance, cognitive dysfunction, and urinary incontinence. While emerging research has focused on clinical and radiological outcomes of treatment, few studies have focused on the effect of treatment on caregiver burden. This aims to review the current state of the literature regarding caregiver perspectives and extent of burden.
Design/Methods:
A search was conducted on September 24, 2023 of the databases PubMed, CINAHL, EMBASE, PsychINFO, Cochrane, and Web of Science. The search terms were the following: (“Normal pressure hydrocephalus” OR “NPH” OR Hakim-Adams triad OR Hakim Adams triad) AND (caregiver burden OR “Caregivers” OR “Spouses” OR caregiver* OR “caring intervention” OR “care giver*” OR “caregiving” OR “care giving” OR spouse* OR “significant other*” OR “family caring” OR “family caregiver*” OR “family partner*”). Searches were uploaded to the software Rayyan where all articles were screened by two reviewers and conflicts were resolved by consensus.
Results:
Out of eighty-nine non-duplicate articles, four met the inclusion criteria: two used the Zarit caregiver burden, one used the caregiver burden survey and the last utilized the caregiver burden section of the neuropsychiatric inventory questionnaire. One Zarit caregiver burden study showed a significant decrease in total caregiver burden from 28.5 to 3.8 three months after shunting while the other showed a significant decrease from 26 to 24 one year after surgery. The NPIQ survey showed a significant change from baseline mean total score of 11.57 ± 6.75 to 1.86 ± 2.96 six months after surgery while the CBS study showed no significant difference. 
Conclusions:
 Studies reported mixed results of shunt surgery improving caregiver burden measured with heterogeneous objective scales, demonstrating more homogeneous research is needed.
10.1212/WNL.0000000000205386