title: An online health community for aneurysmal subarachnoid hemorrhage patients: a pilot study.
abstract: BACKGROUND
  Aneurysmal subarachnoid hemorrhage (aSAH) is a condition affecting relatively young patients and has high rates of morbidity and mortality. Online health communities have emerged to fill the void for patient advocacy and information, allowing individuals with shared experiences and chronic disorders to connect.
  
  
  OBJECTIVE
  We have developed an online health community for aSAH patients, and this pilot study was conducted to evaluate it from a patient's perspective.
  
  
  METHODS
  We implemented an online, members-only, health community (MijnSAB, translation: MySAH) in addition to the usual aSAH care at Radboudumc, Nijmegen, the Netherlands. A questionnaire that was sent to consecutive aSAH patients was used to evaluate the usability and utility of MySAH. Answers were provided using a 5-point Likert scale. There was also one open-ended question asking about what was missing from the MySAH tool.
  
  
  RESULTS
  In total, 66 consecutive patients with aneurysmal subarachnoid hemorrhage were informed about the online health community. Of 64 potential MySAH users, 26 patients gained access to MySAH, 20 of whom were willing to participate in the evaluation. Those who used the community were younger (P=.03) and in a better condition at discharge (P=.03). The patients were positive about MySAH's contribution to the quality of their care, but not to their quality of life. Most patients (18/20, 90%) reported that they would recommend the community to others in their position. Open suggestions on how to improve the tool included more frequent blogs, including by a rehabilitation specialist.
  
  
  CONCLUSIONS
  This pilot study showed that the online health community, MySAH, has a beneficial effect on the aftercare of patients suffering from aSAH because it gives easy access to relevant information provided by peers or caregivers. Due to the variable clinical outcomes after aSAH, the tool will mainly be useful for a select group of patients (with a better clinical outcome).
authors.affiliation: Neurovascular Institute, Department of Neurosurgery, Radboudumc, Nijmegen, Netherlands. Jeroen.Boogaarts@Radboudumc.nl.
authors.forename: Hieronymus
authors.identifier: http://orcid.org/0000-0001-5855-2447
authors.initials: H
authors.lastname: Boogaarts
authors.forename: Willemijn
authors.identifier: http://orcid.org/0000-0003-1763-2533
authors.initials: W
authors.lastname: van Nuenen-Platvoet
authors.forename: Leonie
authors.identifier: http://orcid.org/0000-0002-9383-5466
authors.initials: L
authors.lastname: van den Abbeele
authors.forename: Harriette
authors.identifier: http://orcid.org/0000-0001-6598-2066
authors.initials: H
authors.lastname: Petersen
authors.forename: Irena
authors.identifier: http://orcid.org/0000-0002-1677-5543
authors.initials: I
authors.lastname: Draskovic
authors.forename: Joost
authors.identifier: http://orcid.org/0000-0002-3587-2103
authors.initials: J
authors.lastname: de Vries
authors.forename: Gert
authors.identifier: http://orcid.org/0000-0003-3744-8207
authors.initials: G
authors.lastname: Westert
authors.forename: J Andre
authors.identifier: http://orcid.org/0000-0002-1157-2675
authors.initials: JA
authors.lastname: Grotenhuis
authors.forename: Ronald
authors.identifier: http://orcid.org/0000-0002-8638-4660
authors.initials: R
authors.lastname: Bartels
keywords: online community; quality of care; subarachnoid hemorrhage