mHealth App Improves Sickle Cell Disease Symptoms

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The app improved pain, fatigue, and quality of life in children with the disease.

A mobile health (mHealth) app may help children manage pain and symptoms related to sickle cell disease, according to findings presented at the 62nd Annual American Society of Hematology (ASH) Meeting and Exposition.

Shannon Phillips, PhD, RN, College of Nursing, Medical University of South Carolina, and a team of investigators developed a mHealth self-management intervention for patients with pain related to their sickle cell disease. They included 60 dyads of children with sickle cell disease up to 18 years old and the parent/caregiver.

Data collected came from app use, child and parent/caregiver surveys at baseline, mid-intervention, end of the intervention, and post-intervention. PROMIS SF was used to measure anxiety, fatigue, depressive symptoms, pain interference, pain intensity, and sleep disturbance, while PedsQL and Sickle Cell Disease Module were used to measure health-related quality of life.

The intervention, Voice Crisis Alert V2, was developed with an end-user-based approach and guided by the Pediatric Self-Management model. Components of the digital health app included “Crisis Care,” “I’m in Pain,” “Pain History,” “Messaging,” and “Sickle Cell Information.” Users could document their health history, record pain, and speak securely with a provider through the app. The team tested the feasibility of the digital health tool on symptoms and quality of life.

Children ages 8-17 years old experienced the most substantial pre- to post-intervention differences in symptoms and quality of life scores. The scores represented an improvement for all symptom outcomes except anxiety, with clinically significant improvements in depressive symptoms, fatigue, and pain interference. The team noted improvements in total scores and all subscale scores on the PedsQL and Sickle Cell Disease Module instruments.

Frequency and length of app use were not correlated with the degree of outcome improvements.

On the Crisis Care component of the app, negative correlations were observed between the number of times it was used and the treatment score (rs = -46, 95% CI [-.75 to -.00]), the number of minutes it was used and the treatment score (rs = -.54, 95% CI [-.80 to -.11]), and the number of minutes the Crisis Care component was used and the total Sickle Cell Disease Module score (rs = -.48, 95% CI [-.77 to -.03]). Such correlations suggested more frequent and longer use of the Crisis Care component was associated with less substantial improvement in Sickle Cell Disease Module total score and treatment score.

Based on the results, the app could be best suited for children ages 8-17 years old compared to children less than 8 years old with sickle cell disease. Specifically, the use of the app may lead to an improvement in fatigue, pain interference, health-related quality of life, physical functioning, pain and hurt, pain impact, pain management, and treatments.

The study, “Assessment of Impact of a mHealth Self-Management Intervention for Children with Sickle Cell Disease,” was presented at ASH 2020.