National Survey on the Use of Mobile Applications in Patients with Hemophilia and Other Coagulopathies

Background

Several apps for hemophilia care allow for sharing clinical data between patients and healthcare professionals. This study analyzed the use of apps in patients with coagulopaties in Spain.

Methods

A national survey based on Google® forms included 25 questions: 3 open and 22 closed (5 dichotomous, 12 multiple choices with a single response, 4 multiple responses and 1 Likert scale). Eleven questions were already analyzed in two previous surveys (2017 and 2019). This survey was supported by several Spanish hemophilia associations (ASHECOVA, FEDHEMO, ASANHEMO, etc.) and was sent to patients with hemophilia and other coagulopathies from Spain. Responses were recorded after 2 weeks during 2021.

Results

The survey was distributed to 116 patients, 76 (65.52%) of which recorded an answer: 65.8% patients and 34.2% caregivers. The median age of the patients was 32.50 years (range 1-63) and 96.1% were male. The diagnosis were: 81.6% hemophilia A, 11.9% hemophilia B and 6.5% other coagulopathies.

In 2021, 90.8% of patients periodically registered administration of factors, 73.7% by using mobile apps (2017: 15.8%; 2019: 70%). Regarding their preferences, 85.5% preferred apps for registration (2017: 73.7%; 2019: 88.5%) compared to the manual method (9.2%). The most used apps were (27.6% used 2 apps): Haemoassist (69.7%), florio HAEMO (21.1%), myPKfit app (5.3%), Microhealth (3.9%), and myWAPPS (3.9%). A 22.4% of patient's did not use any app. In patients who used different apps, florio HAEMO was preferred vs Haemoassist in all cases.

The most useful functionalities offered by the apps were: administration of factor and bleeding registry (81.7%; 2019: 77.5%), reminders for inyections (45%) and photographic bleeding records (26.7%). The most requested functionalities included: direct communication with the doctor/pharmacist (61.7%), reminder of medical visits (60%) and estimation of the factor level (30%; function not included in Haemoassist and Microhealth). Improvement in treatment adherence was reported in 85% of patients.

Patient registries were performed just after the infusion in 56.7% of patients, taking < 3 minutes (73.3%) and were considered easy for 75%. A 53.3% of patients never had problems with the app. The most common problems were: batch number record (26.1%) and app reinstallation (26.1%). Most patients requested a contact person (91.1%) and 94.6% trusted in app confidentiality.

Unfortunately, 71.7% of patients stopped the app use for a period >3 months. The most common causes of abandonment were: problems with the mobile phone/app (57.1%), lack of time (21.4%), therapy changes (14.3%), lack of knowledge (7.1%). The overall satisfaction of the patients with the apps was 8.4 over 10.

Conclusions

Apps provided complete and objective clinical data, reported directly by the patient in real time. This survey showed that apps were the preferred registration method, were simple, provide reliable and useful records and could promote greater adherence. Florio HAEMO was the preferred app by patients due to its estimation of real time factor levels and a more attractive and intuitive design. A high rate of abandonment was reported, probably influenced by telemedicine and technical problems. It is essential to educate in the use of apps and establish a contact person to strengthen their employment.

Sanz:Takeda Pharmaceuticals Ltd: Other: Advisor or review panel participant; Helsinn: Honoraria, Other: Advisor or review panel participant; Abbvie Pharmaceuticals: Other: Advisor or review panel participant; La Hoffman Roche Ltd.: Other: Advisor or review panel participant; Novartis Oncology: Consultancy; Celgene Corporation: Consultancy; Janssen Pharmaceuticals, Inc.: Other: Teaching and Speaking; takeda: Honoraria.