A survey exploring the use of symptom diary mobile apps for endometriosis

Background: Symptom tracking for endometriosis has been validated with clinical benefits, however, there is limited evidence around the use of mobile apps for endometriosis symptom tracking. Method: We performed a survey of people with suspected or confirmed endometriosis in Aotearoa New Zealand to assess mobile app use for symptom tracking including which app is being used, how frequently symptoms are tracked, which features are most important and which features would be desired. We also explored willingness to share symptom data with clinicians and/or researchers. Results: A total of 188 survey responses were included. Mobile apps were used for symptom tracking by 83/188 (44.1%), with only 13 of 188 (6.9%) reporting they would not consider use of an app. Of current app users, 51.5% reported logging symptoms at least weekly. The most frequently desired features included tracking of specific symptoms (such as periods, pain, bowel symptoms, mental health symptoms), other tracking (such as medications and diet) and general app usability. Of those who use or would consider using an app 77.7% reported they would be comfortable sharing data with clinicians, and 76.1% reported they would be comfortable sharing anonymous data with researchers. Discussion: Almost half of participants reported using an app to track symptoms, and almost all reported they would consider use. Around three in four patients would be willing to share this data with clinicians and researchers, and therefore further focus on the utility of these apps may benefit patients directly, their relationship with healthcare providers and be utilised for further endometriosis research.