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Open Access 01-12-2021 | Subarachnoid Hemorrhage | Research article

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)

Authors: Edith Nobels-Janssen, Inger L. Abma, Wim I. M. Verhagen, Ronald H. M. A. Bartels, Philip J. van der Wees, Jeroen D. Boogaarts

Published in: BMC Neurology | Issue 1/2021

Abstract

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.

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Title: 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)
Authors: Edith Nobels-Janssen
Inger L. Abma
Wim I. M. Verhagen
Ronald H. M. A. Bartels
Philip J. van der Wees
Jeroen D. Boogaarts
Publication date: 01-12-2021
Publisher: BioMed Central
Keywords: Subarachnoid Hemorrhage
Subarachnoid Hemorrhage
Published in: BMC Neurology / Issue 1/2021
Electronic ISSN: 1471-2377
DOI: https://doi.org/10.1186/s12883-021-02184-x

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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)

Abstract

Background

Methods

Results and conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results and conclusions

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