This was a cross-sectional, single-institution study. Participants completed a cross-sectional survey that was administered through REDCap (Research Electronic Data Capture; Vanderbilt University; a secure, web-based tool for research data capture used for collecting data and surveys) using tablet computers during packed red blood cell transfusion visits at a single institution. Eligibility criteria for patients included (1) having a hematologic diagnosis requiring chronic transfusions, (2) being on ICT, and (3) being aged 12 years or older to complete the survey. Parents were required to have a child aged 24 months or older who met these criteria. Potential study participants (parents of children receiving chronic transfusions and adolescents and young adults receiving chronic transfusions) were approached during transfusion appointments between August 2018 and June 2019. Data were collected on electronic tablets through REDCap supported by the Northwestern University Clinical and Translational Sciences Institute. This study aimed to accrue 50 to 100 patients based on feasibility and patient volume at our infusion center. By the end of the accrual period, a total of 60 participants were enrolled.

The institutional review board at the Ann and Robert H. Lurie Children’s Hospital of Chicago approved this study, and all procedures were conducted in accordance with the current version of the Declaration of Helsinki. Informed consent was obtained from all participants, and they were aware of their ability to opt out. Survey data were anonymous and did not contain identifying information. All participants were compensated with a US $25 gift card upon successful completion of the study survey.

Our study instrument included 63 items assessing technology access, mHealth preferences, and demographics. These items were based on current literature investigating technology-based interventions and medication adherence among patients with chronic conditions in adult and pediatric populations based on previous studies conducted at our institution [6,16,22-24].

The technology access portion of the survey included 7 questions about access to electronic devices, as well as 8 questions about SMS text message and call limits and home or school internet signal strength. The mHealth portion of the survey included 8 yes-or-no questions, 1 rank-order question, and 6 multiple-choice questions that evaluated interest in general mHealth features and notification preferences, which have been previously reported in studies conducted at our institution [16,23].

Descriptive statistics for categorical data were reported in frequencies and percentages. Chi-square tests were run to determine the significant associations among variables and different subgroups. All tests were 2-sided, and a P value of <.05 was considered statistically significant. Statistical analysis was conducted using Microsoft Excel.

A total of 60 participants were included, with 29 (48%) being parents and 31 (52%) being patients (Table 1). The median age of the participants was 31.5 (IQR 20-39) years, and 67% (n=40) were female. The most common diagnoses included thalassemia (n=31, 52%) and sickle cell disease (n=21, 35%). Reported ICT medications varied, with 65% (n=39) taking deferasirox in oral formulation, 27% (n=16) taking deferasirox in tablet form, 8% (n=5) taking deferiprone, and 5% (n=3) taking deferoxamine. All participants’ characteristics are summarized in Table 1.

All parents and patients owned an electronic tablet, a smartphone, or both. Most parents and patients owned cell phones (28/29, 97% and 28/31, 90%, respectively), but tablet ownership was less pervasive (19/29, 66% and 10/31, 32%, respectively). Most parents and patients had unlimited plans for SMS text messaging (27/29, 93% and 25/31, 81%, respectively) and data (21/29, 72% and 21/31, 68%, respectively), as well as a fast home internet connection (24/29, 83% and 23/31, 74%, respectively).

All 8 proposed mHealth features were endorsed by over 50% (30/60) of the participants, including parents (15/29, 52%) and patients (16/31, 52%; Table 2). The median number of features endorsed by both parents and patients was 7 (IQR 6-8). The most endorsed mHealth app features among parents and patients included laboratory test monitoring (55/60, 92%), reminders to take iron chelation medication (50/60, 83%), and education about ICT (49/60, 82%). In particular, parents’ most endorsed features included laboratory test monitoring (27/29, 93%) and education about ICT (25/29, 86%). Patients’ most endorsed features included laboratory test monitoring (28/31, 90%) and reminders to take iron chelation medication (28/31, 90%). There were no significant differences between parents and patients in their preferences (Table 2).

The cumulative ranking of the proposed smartphone app features among parents and adolescents and young adults is summarized in Figure 1. Medication reminders (8/29, 28%) were most frequently ranked as most important among parents, followed by the ability to review laboratory test results (7/29, 24%) and social media features (3/29, 10%). Patients also most prioritized medication reminders (12/31, 39%), followed by laboratory test results (6/31, 19%) and social media features (3/31, 10%).

Our study aims were to evaluate patients’ and parents’ access to technology-based (mHealth) interventions and assess interest in and preferences for an mHealth intervention to promote ICT adherence. These findings highlight that parents and adolescents and young adults had high rates of technology access and reported strong interest in multiple mHealth app features, including features that specifically focused on medication adherence, education, and connection with the community.

Our participants’ high rate of technology access is comparable to that in reports of the general population and supports that mHealth interventions may be an accessible, useful tool to promote adherence [10,12]. Our study adds to the existing literature by demonstrating a strong interest in multiple mHealth app features by patients receiving chronic transfusions. Participants provided important insights into preferred app features for developing a technology-based behavioral intervention (mHealth app). These findings can help guide the development of an effective mHealth tool to promote ICT adherence for adolescents and young adults with thalassemia or other chronic transfusion–dependent conditions.

While there are some limited mHealth apps currently available, the strong interest from both patients and parents in mHealth features in our study suggests that there may be some features and tools that would be more beneficial and engaging to users than those that currently exist. This further highlights the importance of user-centered development in ensuring that these apps prioritize features that are of interest to the populations that are intended to use them. One international study in 2018 found that, although there are currently many mHealth apps available for use, they often do not match patients’ expectations due to lack of user-centered development [24]. Our study represents the starting point of user-centered design and assessment of interest in mHealth interventions and features among patients receiving ICT and their parents. User-centered design should continue throughout the phases of development, including creation, deployment, testing, implementation, and dissemination [21].

Of the app features highlighted in our study, there was particularly strong interest in laboratory test monitoring, medication reminders, and social media or virtual connections with other patients with transfusion-dependent illnesses. Of note, there was no statistically significant difference between the mHealth preferences of parents and patients surveyed, with a nonsignificant but slightly greater proportion of patients preferring positive feedback when taking medications compared to parents. Prior literature has often highlighted the ways in which barriers to adherence may vary from adolescence to adulthood and the ways in which adolescents may have unique preferences for mHealth interventions due to their relative use of technology compared to other age groups [25-27]. One possible explanation for the lack of discrepancy between the preferences of parents and patients is that most participants had interest in multiple mHealth features, with a median number of features endorsed of 7 out of 8. An mHealth tool with multiple features may be beneficial to both patients receiving ICT and parents.

This study builds on previous literature examining adherence interventions for patients receiving ICT [2-4,17]. In particular, a 2017 study highlighted a pilot intervention using a medication reminder app and demonstrated the feasibility and potential usefulness of mHealth in adolescents and young adults receiving chronic transfusions. Our study was focused more on the development stages of an mHealth intervention, particularly on obtaining user-centered feedback on which features might be preferred and promote adherence. Moreover, our study examined not only adolescents and young adults but also parents, who are also a potential user group for an mHealth intervention.

The results of this study are consistent with the literature on technology access and preferences among patients with other complex chronic conditions, including cystic fibrosis, diabetes, sickle cell disease, and acute lymphoblastic leukemia [16,23,28-30]. This further supports that an mHealth app with multiple features could be a promising tool to promote ICT adherence in patients receiving chronic transfusions.

Our study had several strengths. We were able to conduct a thorough evaluation of access to technology, assessing both access to multiple modes of technology and barriers to technology use, such as data plans and Wi-Fi access. Moreover, this study examined both patients’ and parents’ preferences for an ICT mHealth app, allowing us to effectively examine a group of all potential users of this mHealth intervention while also comparing preferences. Lastly, our patient population was diverse, both racially and ethnically and in terms of ICT medications used, as well as in insurance status.

There are several limitations worth noting in this study. First, this was a single-institution study with a relatively small sample size. While our survey items were not validated, they have been used in other published studies [16,22]. Additionally, as we adapted existing survey items, we did not provide an exhaustive list of potential mHealth interventions and app features. Finally, we did not survey our participants about prior experience with mHealth apps, which may have been helpful to note in participants’ perceptions of mHealth and preferences for mHealth features.

In conclusion, parents and patients reported high accessibility to mobile technology. Overall, there was a high level of interest in mHealth interventions, as well as in features specifically intended to promote medication adherence. These findings support an interest in and need for the development of a user-centered mHealth intervention as a tool to promote medication adherence among patients with thalassemia and other conditions requiring chronic transfusions, as well as among their parents. Parents and patients reported similar preferences for mHealth features centered on medication reminders, education, and connection with the broader community of individuals requiring chronic transfusions and their families. In the future, continuing to center user experiences and feedback will be important in maximizing engagement with and utility of an app as an intervention to improve adherence and health care outcomes among patients receiving ICT.

Next steps may include developing and designing an app for an mHealth intervention integrating participant preferences. Throughout development and implementation, centering user experience will continue to be important. Future studies could then use participant feedback to assess the effectiveness of these tools in promoting medication adherence and optimizing health outcomes while also modifying the mHealth tools to be more effective among patients and parents of individuals receiving chronic transfusions.