Abstract
BackgroundPatients 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.MethodsDuring 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 conclusionsRelevant 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.
Highlights
Patients who have been successfully treated for an aneurysmal subarachnoid hemorrhage often retain multiple health complaints, including mood disorders, cognitive complaints, fatigue, and problems with social participation
- The Symptoms in aneurysmal Subarachnoid Hemorrhage” (SOS-SAH) consists of 40 items covering 14 domains, and an additional section for a proxy measurement
A patient-reported outcome measures (PROMs) might help them to identify and bring up the topics they want to discuss during a consultation, as well as providing insight into which of their complaints might be caused by the aneurysmal subarachnoid hemorrhage (aSAH)
Summary
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. Half of patients with a successfully treated aSAH experience problems with memory, mood, or neuropsychological function, and a third have problems in societal participation [8,9,10] This highlights the need to measure these problems from a patient’s point of view using patient-reported outcomes (PROs). PROMs can be used across multiple patients for a quality assessment of treatment and for public reporting to promote external transparency [11, 12]
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