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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.
We have developed an online health community for aSAH patients, and this pilot study was conducted to evaluate it from a patient’s perspective.
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.
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 (
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).
The incidence of aneurysmal subarachnoid hemorrhage (aSAH) is approximately nine cases per 100,000 [
We have developed an online health community for aSAH-patients, and this pilot study was conducted to evaluate it from a patient’s perspective.
We implemented an online, members-only health community (MijnSAB, translation: MySAH) as an addition to the usual aSAH care provided at Radboudumc. The tool has three main functionalities, which are in line with those described for other online communities [
The community tool has been used by Radboudumc to improve patient-centered care in a number of different medical specialties, with ParkinsonNet being an example [
In our MySAH community, patients logged in to the site using a personal digital identification code. Attention was drawn to new messages by pop-ups in a patient’s mailbox. Two physician assistants and a nurse practitioner were responsible for daily communication with the community. Weekly checks on the Web-blogs were made by two neurosurgeons. General questions without the need for the intervention of a neurosurgeon were answered by the physician assistants or nurse practitioner. If the answers to questions required more specialist knowledge, responses were provided by one of the two neurosurgeons.
We used a questionnaire, which was sent to consecutive aSAH patients, to evaluate the usability and utility of MySAH. If patients were unable to complete the questionnaire, their caregivers were asked to do it for them. Those who did not return a completed questionnaire within 3 weeks were contacted by telephone and asked why. An eventual telephone evaluation was conducted by a physician assistant who was not involved in the treatment of the patients.
All of the aSAH patients referred to Radboudumc between November 1, 2012, and September 30, 2013, were candidates for participation, and all survivors were invited to take part in the research. The demographics of all of the referred patients were registered, as were the modified Rankin scale (mRS) at discharge and the type of post-hospital care (home, rehabilitation, or nursing home). The mRS is frequently used in aSAH patients to score outcomes and is an ordinal scale varying from 0 to 6 (0=No symptoms; 1=No significant disability. Able to carry out all usual activities, despite some symptoms; 2=Slight disability. Able to look after own affairs without assistance but unable to carry out all previous activities; 3=Moderate disability. Requires some help but able to walk unassisted; 4=Moderately severe disability. Unable to attend to own bodily needs without assistance and unable to walk unassisted; 5=Severe disability. Requires constant nursing care and attention, bedridden, and incontinent; and 6=Dead). The mRS scores have been dichotomized as ≤3 and ≥4 because it was assumed that patients with a score of more than 3 would use the Internet less often. Approval for the study was obtained from the local medical ethics committee (CMO Arnhem-Nijmegen).
Poster of access page.
We developed a questionnaire that had two parts. The first of these contained general questions on perceived care, while the second asked questions on the usability and usefulness of the MySAH community. The questions were adapted from a previously published patient agreement questionnaire containing usability- related and usefulness-related statements and were expanded for use with MySAH [
In total, 66 patients with aneurysmal subarachnoid hemorrhage were informed about the online health community. Two patients died in the post-discharge period. Of the 64 remaining potential MySAH users, 38 did not log in, 4 could not be contacted in the post-operative period, 3 were willing to log in after a rehabilitation period, 2 did not log in because of their clinical condition, 5 had technical difficulties logging in, 5 did not have a computer, and 19 did not provide a reason for their non-participation. Finally, 26 patients did gain access to MySAH, 20 of whom were willing to participate in the study (
The participants who evaluated MySAH were not significantly different in terms of their gender or discharge location (
Patient characteristics.
Characteristics | Participant | Non-participant | Total |
|
|
Number of patients, n (%) | 20 (30) | 46 (70) | 66 (100) | Not applicable | |
Male/female, n/n | 6/14 | 17/29 | 23/43 | .78b | |
Age in years, median (SD) | 48.5 (11.7) | 56.0 (11.9) | 54.0 (12.2) | .03c | |
|
.03b | ||||
|
≤3 | 19 | 31 | 50 |
|
≥4 | 1 | 15 | 16 |
|
|
|
.33b | ||||
|
Home | 14 | 22 | 36 |
|
Rehabilitation | 5 | 18 | 23 |
|
|
Nursing home | 1 | 6 | 7 |
|
aValues are considered to be significant if
bFisher’s Exact test (2-sided).
cMann-Whitney U test (2-tailed).
Flow chart of patients included in study.
The MySAH community was used for a mean period of 7.2 months, mainly bi-monthly (9/20, 45%) or monthly (7/20, 35%). A minority used the tool weekly (3/20, 15%) or daily (1/20, 5%). In most cases (16/20, 80%), the patient was the main user of MySAH, while the other responders were proxies. No specific part of the MySAH community was used preferentially by either the patients (wiki: 4/20, 20%; forum: 10/20, 50%; blogs: 2/20, 10%; not answered: 2/20, 10%) or their proxies (wiki: 3/20, 15%; forum: 2/20, 10%; blogs: 2/20, 10%; and not answered: 12/20, 65%).
The questionnaires were mainly completed by the patients and in a minority of cases by their caregivers. Patient satisfaction with treatment, post-treatment care, and communication with caregivers was generally rated positively (see
The information was easy to use (4.0) and find (4.0) and was also clear (5.0). However, it was not beneficial for managing health, making important decisions regarding health (2.5), or making contact with caregivers (3.0). Patients were positive about MySAH’s contribution to the quality of their care, but not to their quality of life. No specific component (blog, forum, or wiki) was preferentially rated, nor did the patients discard one aspect in particular. Most patients (18/20, 90%) would recommend the community to others in their position.
Patient satisfaction and usability (results of the questionnaire are depicted as a set of diverging stacked bar charts. Each stacked bar is 100% wide and partitioned by the percent of that group who have selected the agreement level indicated in the legend below the body of the plot. The legend is ordered by the values of the labels. Asterisk=answer by number of patients/caregivers).
In total, 16 patients made 21 suggestions for future improvements to the community (
Items for improvementa.
Item | Suggestions |
Blogs | More blogs (1), in combination with a rehabilitation specialist (2). |
Forum | More patient contact (1), also positive experiences (1). |
Wiki / information | More information on aftercare (2), psychological consequences at home (3), pregnancy after aSAH (1), current news (2), and general information (3). |
Technical | Login (1), navigation (1), layout (3). |
aNumbers in parentheses = number of patients who suggested this improvement.
The conceptual framework of the online community, MySAH, is to improve patient care and obtain better clinical outcomes through optimizing engagement of the patient with the treatment. This is accomplished by an exchange of information between patient and caregiver and vice versa. Such a concept is comparable with sociological studies in other fields [
This online health community has promising features. Although the number of responses to the questionnaire was not high (30% responders), the majority graded the items concerning usability as good. The response rate is probably related to the clinical outcome after aSAH; the patients using the community were generally in better health, which means that it may not be valuable for those in a worse condition. The users of the community were also younger, which is generally the case with health-related Internet use [
At our center, the treatment of aSAH patients is carried out by a subspecialist team working in a multidisciplinary setting. This team consists of neurologists, neurosurgeons, neuroradiologists, neurorehabiliation specialists, neurointensivists, and a dedicated nursing team using a protocolized aftercare program. This probably contributes to patient satisfaction with treatment, post-treatment care, and communication with caregivers. As important decisions are already taken within this framework, it is likely that no additional benefit of the online health community was identified with respect to managing health, making decisions regarding health, or making contact with caregivers. Moreover, a recent study investigating the use of an online forum identified a participant’s motivation to seek out information as one of the factors related to participation in an online community [
However, the patients were positive about MySAH’s contribution to their quality of care. Indeed, with the increasing centralization of subspecialized care, this online health community can provide additional, easy access (after-) care at a distance without the need to travel [
As indicated in other publications, household Internet access in the Netherlands is about 92% and should therefore be a minor limitation with respect to access to an online health tool [
Health-related quality of life is significantly reduced in patients with aneurysmal subarachnoid hemorrhage [
This research has several limitations. First, the number of patients evaluated was only 20, as some of those approached were unwilling or unable to use the MySAH tool. However, within this pilot study, this outcome highlighted the limitations of the community in this patient category. Moreover, for evaluation purposes, having 20 participants is considered to be adequate [
Future studies should assess the value of this online health community when fully integrated in, and as an adjunct to, face-to-face interactions. This could tailor aftercare to the wishes of the patient, enabling more patient-centered care. In our view, it should be emphasized that face-to-face contact continues to be essential in order to precisely determine outcomes and identify possible neurological deficits. Moreover, we envisage a broader use for the MySAH community in other centers involved in aSAH care in the Netherlands. Certainly, the general sections of the site could productively be used by patients from other centers, and the experiences of other caregivers would probably also be beneficial. Furthermore, a larger group of active members may possibly facilitate community sustainability [
In this pilot study, the online health community MySAH contributed to the aftercare of patients suffering from aSAH. There was easy access to information that was relevant for patients and families, which could be obtained from peers or caregivers. The MySAH community will, however, mainly be useful for a select group of patients because of differences in clinical outcomes.
English translation of frequently asked questions in category “Can I…?” (In Dutch; Mag ik…?).
aneurysmal subarachnoid hemorrhage
modified Rankin Scale
HD Boogaarts received a grant from FondsNuts Ohra (FNO 1204-069) for this research. We would like to thank MV Amerongen, MD, for help with the preparation of
None declared.