Development of a patient-reported outcome measure for patients who have recovered from a subarachnoid hemorrhage: the "questionnaire for the screening of symptoms in aneurysmal subarachnoid hemorrhage" (SOS-SAH).

BACKGROUND: Patients who have been successfully treated for an aneurysmal subarachnoid hemorrhage (aSAH) often retain multiple health complaints, including mood disorders, cognitive complaints, fatigue, and problems with social participation. These problems are not always fully addressed during hospital visits or in current outcome measures, such as the modified Rankin score and the Glasgow Outcome Scale. Here, we present the development of the "Questionnaire for the Screening of Symptoms in aneurysmal Subarachnoid Hemorrhage" (SOS-SAH), which screens for the self-reported symptoms of patients with mild disabilities. METHODS: During the development of the SOS-SAH we adhered to the PROM-cycle framework for the selection and implementation of patient-reported outcome measures (PROMs). The SOS-SAH was developed in an iterative process informed by a literature study. Patients and healthcare professionals were involved in the development process through participating in a working group, interviews, and a cognitive validation study. RESULTS AND CONCLUSIONS: Relevant patient-reported outcomes (PROs) were identified for patients with aSAH. The SOS-SAH was developed primarily using domains and items from existing PROMs and, if necessary, by developing new items. The SOS-SAH consists of 40 items and covers 14 domains: cognitive abilities, hypersensitivity to stimuli, anxiety, depression, fatigue, social roles, personality change, language, vision, taste, smell, hearing, headache, and sexual function. It also includes a proxy measurement for use by family members to assess cognitive functioning and personality change.

[Awakening ptosis]. / Kortdurende ptosis bij het ontwaken.

BACKGROUND: A variable ptosis may point towards serious neurological disorders and is presented to general practitioners, ophthalmologists and neurologists. CASE DESCRIPTION: Two patients presented at the neurology outpatient clinic with a ptosis confined to awakening from sleep. There were no other neurological complaints and neurological examination was normal. The diagnosis 'awakening ptosis' was made. CONCLUSION: Awakening ptosis is a benign, but rare disorder. The exact pathophysiology remains unclear. In the case of a classic clinical picture of awakening ptosis, additional examinations are not indicated.

Patient-reported outcome measures in subarachnoid hemorrhage: A systematic review.

OBJECTIVE: Patient-reported outcomes (PROs) are aspects of a patient's health status and are considered important for stimulating patient-centered care. Current outcome measures in clinical care for patients with aneurysmal subarachnoid hemorrhage (aSAH) are insufficient to capture PROs. In this systematic review, we aimed to summarize the evidence regarding the quality of patient-reported outcome measures (PROMs) in aSAH patients. METHODS: We performed a systematic review of the literature published from inception until October 29, 2018, in PubMed, the Cochrane Central Register of Controlled Trials, and EMBASE. Eligible studies had to evaluate measurement properties and capture PROs in aSAH patients. The quality of the studies and measurement properties were assessed using the consensus-based standards for the selection of health status measurement instruments (COSMIN) checklist. The review protocol was registered with PROSPERO (CRD42018058566). RESULTS: We identified 9 articles that reported the assessment of 7 different disease-specific and generic PROMs used for aSAH patients, including 5 that focused on the Stroke-Specific Quality of Life Scale (SS-QoL). The methodologic quality of the validation processes used was generally doubtful. None of the PROMs complied with current standards for content validity. CONCLUSIONS: Due to the low quality of evidence for the measurement properties, the evidence base for selecting a suitable PROM for use with aSAH patients is insufficient. Given the specific long-term consequences of aSAH, we consider a disease-specific PROM the most appropriate, with SS-QoL the most suitable PROM currently available.