Premium
Mobile health intervention for youth with sickle cell disease: Impact on adherence, disease knowledge, and quality of life
Author(s) -
Anderson Lindsay M.,
Leonard Sarah,
Jonassaint Jude,
Lunyera Joseph,
Bonner Melanie,
Shah Nirmish
Publication year - 2018
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.27081
Subject(s) - medicine , psychosocial , disease , quality of life (healthcare) , intervention (counseling) , young adult , physical therapy , mhealth , health care , pharmacy , family medicine , psychiatry , psychological intervention , nursing , economics , economic growth
Background Adherence to illness self‐management among youth with sickle cell disease (SCD) positively impacts health outcomes and decreases overall healthcare costs. Despite this, children with SCD face several barriers to adherence, with adherence rates that remain moderate to low. The current feasibility study examined the Intensive Training Program (ITP), a mobile health (mHealth) intervention for youth with SCD designed to promote disease knowledge, adherence, and patient‐provider communication. Procedure Youth with SCD prescribed hydroxyurea between ages 7–18 completed baseline disease knowledge and psychosocial assessments and then were provided with the ITP app. Youth participated in the 90‐day ITP, during which they completed three education modules, tracked adherence through daily self‐recorded videos on the app, and received video messages from providers. Participants completed poststudy knowledge, psychosocial, and feasibility questionnaires. Medication possession ratio (MPR) was obtained via pharmacy‐refill rates. Results Thirty‐two youths (mean age = 13.0 years) participated, with an average adherence tracking rate of 0.6 (standard deviation = 0.34). All participants demonstrated increased MPR (0.57–0.74, P < 0.001, d = 0.75) and disease knowledge (59.6–88.6%, P < 0.001). There was variable engagement in the ITP; completers demonstrated significantly better SCD‐related functioning ( P < 0.05), higher parent‐reported treatment functioning ( P < 0.05), and lower pain impact than noncompleters of the ITP ( P < 0.05). Conclusions Results support the ITP can feasibly be implemented to promote adherence among youth with SCD. All participants demonstrated increased adherence and disease knowledge. However, there was variable engagement and only intervention completers showed improvements in psychosocial outcomes. Further research is needed to evaluate long‐term outcomes and ways to promote engagement in mHealth interventions among the youth.