Hydroflex: Use of Patient Reported Outcomes in a Clinical Setting Among Patients with Hydrocephalus.

OBJECTIVE/BACKGROUND: A patient-reported outcome (PRO) measure is defined as "any report of the status of a patient's health condition that comes directly from the patient without interpretation of the patient's response by a clinician or anyone else". PRO data are increasingly being used in health care to facilitate monitoring of symptoms, facilitate communication between patients and clinicians, facilitate early identification of problems, and reduce unnecessary outpatient appointments for stable patients. METHODS: We have designed a PRO system specifically for hydrocephalus, a program named Hydroflex. The aim of Hydroflex is to use PRO measures to decide the need for clinical attention and let the patients report their need regarding a physical consultation. Patients receive questionnaires at home instead of having prescheduled appointments at the outpatient clinic. Based on an automated algorithm, the patients' PRO measures are ranked to help clinical decision-making. RESULTS: In this paper, we describe the implementation and early experience of Hydroflex at our institution. CONCLUSIONS: It is our belief that Hydroflex provides more continuity in the treatment of patients with hydrocephalus. Also, it provides for a more standardized follow-up scheme, and we postulate this will lead to improved patient satisfaction and involvement and fewer outpatient appointments. Also, Hydroflex is useful for quality control and prospective research.

Characteristics and outcomes in patients with primary intraspinal tumours.

INTRODUCTION: We report a retrospective cohort study aimed at presenting data on incidence, patient char-ac-teristics, tumour type, level of pathology, clinical status before and after surgery and complications in patients with surgically treated primary intraspinal tumours (PIST) in Western Denmark. METHODS: Population-based data were retrieved from hospital files from 1 January 2010 to 31 December 2015. RESULTS: In total, 78 males and 88 females with PIST were included in the study. Incidence per 100,000 persons per year in the population-based cohort was 2.18. The incidence of malignant PIST was 0.14 and the incidence of non-malignant PIST was 2.03. We found 25 extradural tumours, 100 intradural extramedullary tumours and 41 intramedullary tumours. Eleven were malignant and 155 were benign tumours. Schwannoma, meningioma and ependymoma were more common in adults, whereas haemangioblastoma, neurofibroma and epidermoid cysts were seen in 14 paediatric cases. Motor function disturbances were found in 38% of cases. Sensory disturbances were found in 54% of cases, and worsening of sensory functions was the most frequent post-operative sequela. Ataxia and neurogenic bowel/bladder dysfunction seem to constitute the highest risk in cases of intramedullary tumours. Pain was found in 75% of cases and was the most common symptom among all patients with PITS with a 58% improvement after surgery. Complications were recorded in 12% of cases. CONCLUSIONS: The incidence of PIST seems to be higher in Western Denmark than in other European studies. PIST are rare in children. FUNDING: none. TRIAL REGISTRATION: not relevant.