ObjectiveIdiopathic intracranial hypertension (IIH) is under-researched and the aim was to determine the top 10 research priorities for this disease.DesignA modified nominal group technique was used to engage participants who had experience of IIH.SettingThis James Lind Alliance Priority Setting Partnership was commissioned by IIH UK, a charity.ParticipantsPeople with IIH, carers, family and friends, and healthcare professionals participated in two rounds of surveys to identify unique research questions unanswered by current evidence. The most popular 26 uncertainties were presented to stakeholders who then agreed the top 10 topics.ResultsThe top 10 research priorities for IIH included aetiology of IIH, the pathological mechanisms of headache in IIH, new treatments in IIH, the difference between acute and gradual visual loss, the best ways to monitor visual function, biomarkers of the disease, hormonal causes of IIH, drug therapies for the treatment of headache, weight loss and its role in IIH and finally, the best intervention to treat IIH and when should surgery be performed.ConclusionsThis priority setting encouraged people with direct experience of IIH to collectively identify critical gaps in the existing evidence. The overarching research aspiration was to understand the aetiology and management of IIH.

ObjectivesPatients 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 participantsA 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.Results502 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).ConclusionsThis 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.

Individuals with schizophrenia are often medically undertreated and experience symptoms that interfere with communication and the capacity to make medical decisions. These issues complicate quality end-of-life care for this population and are of particular concern for hospice and palliative care nurses and health care providers. This article presents a case study of a terminally ill patient with schizophrenia. It is divided into a series of vignettes; each vignette presents a common clinical issue encountered by the palliative care team. Interventions suggested in the literature and those used by team members when working with the patient are discussed.

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Individuals with borderline personality disorder (BPD) exhibit persistent patterns of instability in mood, impulse control, self-image, and interpersonal relationships. These issues complicate quality end-of-life care for this population and are of particular concern for hospice and palliative care nurses and health care providers. This article presents case studies of terminally ill individuals with BPD as a series of vignettes that present common clinical issues encountered by the palliative care team. Interventions suggested in the literature as well as approaches used by team members when working with terminally ill individuals with BPD are discussed. [ Journal of Psychosocial Nursing and Mental Health Services, 57 (9), 24–31.]