Characterising the patient experience of diagnostic lumbar puncture in idiopathic intracranial hypertension: a cross-sectional online survey

Abstract

Objectives: Patients with idiopathic intracranial hypertension (IIH) usually require multiple lumbar punctures (LPs) during the course of their disease, and often report significant morbidity associated with the procedure. The aim of this study was to assess the patient's experience of diagnostic LP in IIH.

Design, methods and participants: A cross-sectional study of patients with IIH was conducted using an anonymous online survey, with the questions designed in collaboration with IIH UK (the UK IIH charity). Responses were collated over a 2-month period from April to May 2015. Patients were asked to quantify responses using a Verbal Rating Score (VRS) 0-10 with 0 being the minimum and 10 the maximum score.

Results: 502 patients responded to the survey, of which 463 were analysed for this study. 40% of patients described severe pain during the LP (VRS ≥8), and the median pain score during the LP was 7 (VRS, IQR 5-7). The majority of patients felt they received insufficient pain relief (85%). Levels of anxiety about future LPs were high (median VRS 7, IQR 4-10), with 47% being extremely anxious (VRS ≥8). LPs performed as an emergency were associated with significantly greater pain scores compared with elective procedures (median 7, IQR 5-7 vs 6, IQR 4-8, p=0.012). 10.7% went on to have an X-ray-guided procedure due to failure of the initial LP, and the body mass index was significantly higher in this group (mean kg/m²40.3 vs 35.5, p=0.001). Higher LP pain scores (VRS) were significantly associated with poorly informed patients (Spearman's correlation, r=-0.32, p<0.001). Patients felt more informed when the LP was performed by a specialist registrar compared with a junior doctor (median 7 vs 5, p=0.001) or a consultant compared with a junior doctor (median 8 vs 5, p<0.001).

Conclusions: This study was commissioned by the IIH patient group and is the first to document the patient experience of diagnostic LPs in IIH. It shows that the majority of these patients are experiencing significant morbidity from pain and anxiety. Patient experience of LP may be improved through changing clinical practice to include universal detailed preprocedural information, and where possible, avoiding emergency LPs in favour of LPs booked on an elective day-case unit.

Keywords: adult neurology; neuro-ophthalmology; neuropathology; ophthalmology.

Figure 1

Baseline characteristics of eligible responders.

Figure 2

Patients’ expectations and experience of LP. (A) Median VRS (0–10, IQR) for how scared patient was before LP, how painful the LP was and how anxious they were about future LPs. (B) Number of patients who were mildly (0–3), moderately or very scared before having an LP. (C) Number of patients who experienced mild (VRS 0–3), moderate (VRS 4–7) or severe (VRS 8–10) pain during the LP. (D) Number of patients who were mildly (VRS 0–3), moderately (VRS 4–7) or very anxious (VRS 8–10) about future LPs. (VRS 0=minimum and 10 maximal score). LP, lumbar puncture; VRS, Verbal Rating Score.

Figure 3

X-ray-guided LPs, and relationship of preprocedural information and grade of doctor performing LP to patient experience. (A) For all patients surveyed, association between how well-informed patient was before LP, and how painful LP was (median VRS, IQR, minimum–maximum). (B) BMI (median, IQR) and association with whether patient had X-ray-guided LP. (C) Grade of doctor performing LP and duration of post-LP headache (days, median, IQR). (D) Grade of doctor performing LP and severity of post-LP headache. ns not significant, p>0.05, *p≤0.05, **p≤0.01, ***p≤0.001, ****p ≤ 0.0001 (VRS 0=minimum and 10=maximal score). BMI, body mass index; LP, lumbar puncture; VRS, Verbal Rating Score.