Mobile health intervention for youth with sickle cell disease: Impact on adherence, disease knowledge, and quality of life

Anderson, Lindsay; Leonard, Sarah; Jonassaint, Jude; Lunyera, Joseph; Bonner, Melanie J.; Shah, Nirmish

doi:10.1002/pbc.27081

Cited by 40 publications

(60 citation statements)

References 46 publications

(37 reference statements)

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“…However, the content of the app is limited to primary stroke prevention and does not include risk factors related to secondary prevention. Several studies reported that improvements of health-related knowledge were significantly associated with use of mobile healthcare apps [13–16]. Nevertheless, none of these apps focused on health-education for risk factors related to the secondary stroke prevention.…”

Section: Introductionmentioning

confidence: 99%

Does a Mobile app improve patients’ knowledge of stroke risk factors and health-related quality of life in patients with stroke? A randomized controlled trial

Kang

Shen

Lin

et al. 2019

BMC Med Inform Decis Mak

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BackgroundDeveloping a stroke health-education mobile app (SHEMA) and examining its effectiveness on improvement of knowledge of stroke risk factors and health-related quality of life (HRQOL) in patients with stroke.MethodsWe recruited 76 stroke patients and randomly assigned them to either the SHEMA intervention (n = 38) or usual care where a stroke health-education booklet was provided (n = 38). Knowledge of stroke risk factors and HRQOL were assessed using the stroke-knowledge questionnaire and European Quality of Life–Five Dimensions (EQ-5D) questionnaire, respectively.ResultsSixty-three patients completed a post-test survey (the SHEMA intervention, n = 30; traditional stroke health-education, n = 33). Our trial found that patients’ mean knowledge score of stroke risk factors was improved after the SHEMA intervention (Mean difference = 2.83; t = 3.44; p = .002), and patients’ knowledge was also improved in the after traditional stroke health-education (Mean difference = 2.79; t = 3.68; p = .001). However, patients after the SHEMA intervention did not have significantly higher changes of the stroke knowledge or HRQOL than those after traditional stroke health-education.ConclusionsBoth the SHEMA intervention and traditional stroke health-education can improve patients’ knowledge of stroke risk factors, but the SHEMA was not superior to traditional stroke health-education.Trial registrationNCT02591511 Verification Date 2015-10-01.

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Section: Introductionmentioning

confidence: 99%

Does a Mobile app improve patients’ knowledge of stroke risk factors and health-related quality of life in patients with stroke? A randomized controlled trial

Kang

Shen

Lin

et al. 2019

BMC Med Inform Decis Mak

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“…Adherence data for iron chelation therapy was estimated by calculation of medication possession ratio (MPR) as follows: amount of drug dispensed (days)/interval between dispensations (days). The MPR was considered adequate at ≥80%, as previously reported [14,15,16,17]. History of splenectomy was also collected.…”

Section: Methodsmentioning

confidence: 99%

GSTM1 and Liver Iron Content in Children with Sickle Cell Anemia and Iron Overload

Puri

Flanagan

Kang

et al. 2019

JCM

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Chronic blood transfusions in patients with sickle cell anemia (SCA) cause iron overload, which occurs with a degree of interpatient variability in serum ferritin and liver iron content (LIC). Reasons for this variability are unclear and may be influenced by genes that regulate iron metabolism. We evaluated the association of the copy number of the glutathione S-transferase M1 (GSTM1) gene and degree of iron overload among patients with SCA. We compared LIC in 38 children with SCA and ≥12 lifetime erythrocyte transfusions stratified by GSTM1 genotype. Baseline LIC was measured using magnetic resonance imaging (MRI), R2*MRI within 3 months prior to, and again after, starting iron unloading therapy. After controlling for weight-corrected transfusion burden (mL/kg) and splenectomy, mean pre-chelation LIC (mg/g dry liver dry weight) was similar in all groups: GSTM1 wild-type (WT) (11.45, SD±6.8), heterozygous (8.2, SD±4.52), and homozygous GSTM1 deletion (GSTM1-null; 7.8, SD±6.9, p = 0.09). However, after >12 months of chelation, GSTM1-null genotype subjects had the least decrease in LIC compared to non-null genotype subjects (mean LIC change for GSTM1-null = 0.1 (SD±3.3); versus −0.3 (SD±3.0) and −1.9 (SD±4.9) mg/g liver dry weight for heterozygous and WT, respectively, p = 0.047). GSTM1 homozygous deletion may prevent effective chelation in children with SCA and iron overload.

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“…mHealth interventions have been developed for medication adherence in children and AYAs with other medical conditions (eg, sickle cell disease, asthma, type 1 diabetes, migraine). However, these interventions have primarily relied on daily dose reminders [ 9 - 11 ], which show short-term effects on adherence and have barriers to long-term practicality (eg, repeated reminders could be viewed as intrusive instead of helpful) [ 12 , 13 ], or involve self-tracking daily adherence (eg, self-reported logs or video recordings of taking medicine), which have low engagement and completion rates [ 14 , 15 ]. Other limitations to existing interventions include no evidence for their efficacy on objective adherence behavior [ 10 , 16 ], no theoretical basis to an a priori outline of the intervention’s mechanisms of behavior change [ 17 ], relying on components with barriers to long-term sustainability (eg, monetary incentives for taking medicine) [ 15 ], or not actively involving stakeholders in intervention development and refinement, which is essential for AYA engagement and intervention uptake [ 18 ].…”

Section: Introductionmentioning

confidence: 99%

Text Messaging Adherence Intervention for Adolescents and Young Adults with Chronic Kidney Disease: Pilot Randomized Controlled Trial and Stakeholder Interviews

Eaton¹,

Comer²,

Pruette³

et al. 2020

J Med Internet Res

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Background Up to one-third of adolescents and young adults (11-21 years old) with chronic kidney disease exhibit suboptimal rates of adherence to renal-protective antihypertensive medications. Mobile health interventions may promote higher adherence to these medicines in these individuals, but empirical research is needed to inform best practices for applying these modalities. Objective In this multiphase investigation, we developed and tested a theoretically informed text messaging intervention based on the COM-B model, a well-established health intervention framework stating that capability, opportunity, and motivation interactively modify health behaviors, to improve participants’ antihypertensive medication adherence in a pilot randomized controlled trial. Qualitative data on user experiences were obtained. Methods In phase 1, intervention messages (Reminder+COM-B Message) were developed via stakeholder engagement of participants and pediatric nephrologists. In phase 2, the Reminder+COM-B Message intervention was tested against a Reminder-only Message active control condition in an 8-week pilot randomized controlled trial. The primary outcome was daily electronically monitored antihypertensive medication adherence and secondary outcomes included pre-post participant surveys of adherence self-efficacy, adherence barriers, outcome expectancies for taking medicine, and motivation for and importance of taking medicine. In phase 3, qualitative interviews related to user experiences were conducted with participants in the Reminder+COM-B Message intervention group. Results Following phase 1, 34 participants (mean age 16.59 years, 41% female, 38% African American/Black, 35% hypertension diagnosis) completed the phase 2 pilot randomized controlled trial (n=18 in the Reminder+COM-B Message intervention group, n=16 in the Reminder-only Message active control group). All participants in the Reminder+COM-B Message intervention group completed a phase 3 qualitative interview. Overall, study procedures were feasible and the Reminder+COM-B Message intervention was acceptable to the participants (eg, 15/18 participants reported reading the majority of messages sent to them, 0/18 reported that the messages reduced their desire to take medicine). Prerandomization, there were no significant group differences in the rate of change in daily adherence over time. However, postrandomization, there was a significant group by time interaction (B=.01, P=.04) in which daily adherence decreased significantly over time in the Reminder-only Message active control group but remained stable in the Reminder+COM-B Message intervention group. There were no significant differences between groups in pre-post changes in survey responses. Qualitative interviews revealed participants’ perceptions of how the Reminder+COM-B Message intervention changed adherence behavior and highlighted several areas for improving the intervention (eg, adapt messaging timing, intensity, and content to match daily adherence, send praise when medicine is taken). Conclusions The Reminder+COM-B Message intervention was feasible and acceptable to adolescents/young adults and demonstrated potential to promote participants’ daily medication adherence beyond simple reminders. Further research is needed to determine the Reminder+COM-B Message intervention’s mechanisms of adherence behavior change and to incorporate qualitative participant feedback into a modified version of this intervention to enhance its acceptability. Trial Registration ClinicalTrials.gov NCT03651596; https://clinicaltrials.gov/ct2/show/NCT03651596

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Mobile health intervention for youth with sickle cell disease: Impact on adherence, disease knowledge, and quality of life

Cited by 40 publications

References 46 publications

Does a Mobile app improve patients’ knowledge of stroke risk factors and health-related quality of life in patients with stroke? A randomized controlled trial

Does a Mobile app improve patients’ knowledge of stroke risk factors and health-related quality of life in patients with stroke? A randomized controlled trial

GSTM1 and Liver Iron Content in Children with Sickle Cell Anemia and Iron Overload

Text Messaging Adherence Intervention for Adolescents and Young Adults with Chronic Kidney Disease: Pilot Randomized Controlled Trial and Stakeholder Interviews

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