Background: Despite the well-organized follow up of Sickle Cell Disease patients in Northern countries, the knowledge of this chronic disease mostly relies on data collected during hospital stays or visits. There is scare patients reported data and little is known about the daily impact of the disease, assessed by the patient him or herself. Sickle-O-Scope is the first mobile phone application allowing patients with SCD and their families' caregivers to self-monitor the disease symptoms on a daily basis. The mobile app is able to save the daily records and to restitute results on Excel charts, ready to be sent. This qualitative survey presents how patients with sickle cell disease or caregivers perceive the benefits from the use of this first mobile app and their suggestions for improvement of this app
Method: 8 French speaking patients (n=7) and a caregiver (n=1), living in France had been enrolled in a qualitative survey to assess their satisfaction. They had been asked to use the mobile app, during 30 days. They had been submitted to a phone administrated questionnaire. The questionnaire comprises the Hospital Anxiety and Depression Scale, questions based on their expectations of symptoms following hospital stays or visits, their global satisfaction, their detailed satisfaction and the perceived benefit for their disease management.
Results: Results show that most of the participants have no sign of anxiety and depression. There is no significant before app/after app evolution of the anxiety and depression scores. Most of the participants are satisfied (75%) or very satisfied (25%) with this mobile app. All participants find the mobile app very easy to use and encounter no difficulty. The majority of participants (75%) find the mobile app useful for their follow up and think it could help them to have a better monitoring of their disease (62,5%). 75% of participants find it could facilitate the communication with their physician and 88% of them will be ready to use it on a daily basis if asked by the physician. All participants are ready to send data to their physicians and will recommend other patients or caregivers to use it. Only half of participants think that the monitoring of their symptoms could help them to avoid complications. Participants suggestions to improve the mobile app are: integrating a reminder of data collection, integrating an agenda of the hospital appointments, allowing a more precise pain localization, monitoring hemoglobin rate, indicating the name of used medicines.
Conclusion: This limited survey indicates that an app could be of interest for the patient follow-up and monitoring. Following these initial results, a second improved version was published. Further studies on a larger scale are ongoing to see what impact this type/sort of application can have on global health improvement.
Adjibi:ADDMEDICA: Consultancy. Meddeb:ADDMEDICA: Consultancy. Dauvergne:ADDMEDICA: Employment. Duguet:ADDMEDICA: Employment.
Asterisk with author names denotes non-ASH members.