This study was conducted in the Netherlands from May 2018 to April 2020. We adhered to the “PROM-cycle”, a framework with eight steps necessary for the selection and implementation of PROMs in healthcare [14]. The first four steps that focus on the development of a PROM are described: (1) goal setting for the PROM, (2) selection of important PROs, (3) identification of PROMs that cover the selected PROs, and (4) the development and testing of a PROM. Throughout the development process, collaboration with patients and healthcare professionals was assured through iterative interactions. The involvement of the different parties and processes in each step of the PROM-cycle is presented schematically in Fig. 1.

Flowchart of the steps of the PROM-cycle [14] and involved parties and processes in the development of the SOS-SAH. PROs: patient-reported outcomes; PROMs: patient-reported outcome measures

The goal of the PROM is to screen individual patients with mild disabilities who have been successfully treated for aSAH, since they are prone to undetected symptoms during their follow-up care. “Mild disabilities” was defined as an outcome on the modified Rankin Scale (mRS) of 0, 1, or 2. The mRS is a global disability scale that has an ordinal scale ranging from no residual symptoms (score of 0) to severely disabled (score of 5) [15]. The intention was to construct the PROM using (the domains of) existing PROMs and, if necessary, newly developed items.

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