A systematic review and evaluation of mobile health apps designed for parents who are preparing or caring for medically complex infants

Introduction

Background

More than 1 in 10 infants are born with medical complexity, with recent trends showing increasing rates of hospitalization with intensive care for infants born prematurely (1) or with congenital heart disease (2-4). Parents often learn about their child with medical complexity over the perinatal period through a process of information seeking. This process often involves parents’ efforts to understand the health condition, medical interventions, course of hospitalization, and transition to home, as well as to navigate their psychosocial experiences (5-9). During the transition from intensive care settings to home with their vulnerable infants, families rely heavily on healthcare resources as they take on complex care routines and face high risks for infant mortality and repeated readmission to the hospital (10). In addition to their healthcare providers, these parents look to sources of information through the internet, social media, and mobile health applications (mHealth apps) (5,7,11-13).

Nearly all adults of childbearing age in the United States—and a majority of adults worldwide—own a smartphone (14-17). There are over 300,000 mHealth apps in app stores worldwide (18). Many of these apps are designed to offer health and wellness information and can include tracking or management functionalities. Of the thousands of mHealth apps, nearly three-quarters (73%) are downloaded by users independently rather than upon recommendations from others, including their healthcare providers (19). Given that pregnant and birthing people represent an increasing consumer demographic of mHealth apps (20-23), numerous apps relevant to pregnancy and the care of infants encountering hospitalization are available. Most of the apps focused on pregnancy, however, lacked evidence-based information (24). While mHealth apps have the potential to provide broad access to key health-related resources, lower healthcare costs, and improve patient care (25,26), the quality of mHealth apps in general and for this population has been a concern (27-29).

The most recent app review and evaluation relevant to parents of hospitalized infants was published in 2019, with the evaluation conducted in 2017, and underscored substantial concerns for quality and credibility (29). The findings indicated that only 7 of 18 apps provided acceptable educational content, and most did not address parents’ top concerns. Change is to be expected in the dynamic mHealth app market, especially considering emerging efforts to create evidence-based mHealth apps to address this gap and meet the needs of parents over the perinatal time and transitioning from hospital to home (30-34). Thus, knowledge of the current availability and quality of mHealth apps designed for parents of infants with medical complexity is particularly important. This systematic review and evaluation will focus on the quality of publicly available mHealth apps that these parents might turn to, which is currently not known.

Objective

The objective of this systematic review was to identify and evaluate the quality of publicly available mHealth apps designed for parents who are preparing or caring for medically complex infants (e.g., prematurity, congenital anomalies, or who required hospitalization due to a perinatal event) to support their learning needs and caregiving capacities during the perinatal period. We present this article in accordance with the PRISMA reporting checklist, with some necessary modifications of methods mostly related to search strategy (available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-84/rc) (35).

Methods

Study design

This study was conducted with systematic search and evaluation methods focused on mHealth apps for parents. Resources such as e-tools (e.g., websites, web-based modules, courses, tutorials), parent support groups, or social media groups were not considered in this review. The search strategy, screening, data extraction, and evaluation process was completed independently, with outcomes discussed and any discrepancies resolved through consensus by reviewers.

Search strategy

The systematic search strategy was applied by five authors (A.C.M., N.M.S., K.M.E., T.I.W., A.T.) in November 2022 and replicated by three authors (A.C.M., N.M.S., T.I.W.) in August 2024 to capture any changes due to the evolving app market. This search strategy incorporated pragmatic search techniques used for mobile apps and digital app distribution platforms, as described in similar review studies (11,29,36,37). The search was conducted on iPhone and Android mobile operating systems using the Apple App Store on both an iPhone and a computer, the Google Play Store on an Android phone, and the LDPlayer application on a computer, applying a priori eligibility criteria. The initial screening of apps that appeared eligible was completed using the app store information. The following search terms were used consistently across operating systems at both time points: “birth defect”, “fetal anomaly”, “fetal medicine”, “fetal diagnosis”, “prenatal diagnosis”, “heart defect”, “heart disease”, “infant heart”, “infant heart disease”, “heart baby”, “neonatal care”, “NICU”, “premature”, and “preterm”.

Inclusion and exclusion criteria were applied as follows to determine the sample for this review. Inclusion criteria were apps targeting parents of infants with perinatal medical complexity (i.e., fetal/infant health conditions detected during the perinatal period that prompt medical intervention after birth), required hospitalization, were available in English, and were accessible to the general public with no cost (e.g., free). Exclusion criteria were apps accessible only to parents as patients within healthcare clinics/systems (i.e., not publicly available/accessible for review), content focused on healthy pregnancy, fetuses, or infants or those affected by chromosomal conditions (e.g., Trisomy 21), targeting parents of children beyond the first year of life, primarily designed for non-parental caregivers or healthcare professionals, primary function for tracking/monitoring (e.g., fetal movements, labor contractions timing, infant feeding/growth), or focused on unrelated activities or products (e.g., parent self-care or infant care products).

For each search term, both operating systems were used to screen up to 100 app suggestions provided by a dynamic algorithm, which adapted to populate app lists in order of decreasing relevance to the search term. Second, apps that appeared to meet eligibility criteria were downloaded to a device and further screened for eligibility. Lastly, our search strategy included snowball searching, which involved reviewing a minimum of ten additional apps recommended based on the search algorithm to ensure eligible apps were captured.

Four authors (A.C.M., K.M.E., R.J., S.P.) identified relevant, key data for apps considered for inclusion. Data were extracted from app store descriptions and the downloaded apps and entered into an analytic matrix generated for this study. Data extracted included information about the developer, last update, features, and aim/purpose of the app. Extracted data were reviewed and updated as needed in August-September 2024. All app data were reviewed by the first author (A.C.M.) and verified as needed with other authors for accuracy. Following the systematic review process, which included applying the inclusion and exclusion criteria to each app in the context of the extracted data, the research team then determined the final sample for this evaluation.

Measure—app evaluation tool

Eligible apps were evaluated for quality using the Mobile Application Rating Scale (MARS; available free online at https://mhealth.jmir.org/article/downloadSuppFile/3422/14733). The MARS was developed by healthcare providers, academics, and technology professionals to reliably evaluate health-related mobile apps (38). MARS was the most appropriate tool for this evaluation because it provides a multi-dimensional evaluation with healthcare considerations (e.g., clinical accuracy), and has previously demonstrated validity and reliability (39). The MARS includes four quality dimensions, operationalized by a total of 19 items across corresponding subscales of Engagement, Functionality, Aesthetics, and Information quality to rate mHealth app quality. Engagement (5 items) captures how interesting, adaptable, and interactive an app is for a particular user. Functionality (4 items) focuses on performance in terms of usability, navigation, and intuitive gesture-based interactions. Aesthetics (3 items) considers visual appeal, layout, and graphics. Information (7 items) represents source credibility, as well as clarity, accuracy, and comprehensiveness of the information presented within the app. Ratings for each item relied on a 5-point scale (1= inadequate to 5= excellent), or could be marked as not applicable. For each app, mean subscale ratings were calculated, and the mean rating for all subscales represented an overall app quality rating, using the same quality scale applied to items. Two optional subscales on subjective quality and perceived impact include items such as whether the reviewer would recommend the app, how often the app might be used, and how much the app might impact the parent user. These subscales can increase bias and variability, and thus, were not included in this evaluation.

Congruent with the expectations for informed evaluations within our content area, our research team includes nurses with research and practice areas focused on infants with medical complexity, including fetal/infant structural anomalies and prematurity. To prepare for the app review, all authors viewed the MARS training video and engaged in the study-specific evaluation process. Before applying the MARS tool to the app sample reported on in this paper, all authors independently completed a practice evaluation of an app with content adjacent to our study interests, followed by a research team discussion.

Data analysis

From November 2022 to February 2023, all authors were involved in the independent evaluation process with final ratings discussed and any differences greater than 1 point resolved through consensus. Following these same methods, three authors (A.C.M., N.M.S., T.I.W.) independently evaluated updated apps and additional apps that met inclusion criteria from August to September 2024, and final mean ratings were determined for the sample. Throughout this process, additional data were extracted and notes were recorded in the analytic matrix on features, key content, and functionality for each app in the sample.

Results

Screening process

Our systematic search of both the Apple App Store and Google Play Store resulted in screening a total of 1,917 apps. Following the initial screening process conducted in 2022 and replicated in 2024, 32 apps were downloaded for further eligibility screening. Among those downloaded apps, 6 were no longer found or functional, 3 showed substantial updates, and 1 additional app was identified for screening. The final sample of 15 unique mHealth apps were included for independently conducted evaluations. All 15 apps were available on the Apple App Store, and 6 were available on both Apple and Google Play mobile operating systems. Figure 1 shows a PRISMA flow diagram of this screening process (35).

Figure 1 Flow diagram of the app identification and selection process.

Descriptive characteristics of apps

All evaluated apps appeared to originate from reputable sources, and none solicited in-app purchases. See Table 1 for descriptive characteristics of each app. Most apps focused on prematurity (n=6), followed by apps on the neonatal intensive care experience (n=4), congenital heart disease (n=4), and hypoxic-ischemic encephalopathy (n=1). The app developers represented non-profit organizations (n=5), hospitals/clinics (n=4), private developers (n=4), and universities (n=2). The majority of the apps (n=11) were developed in the United States, with other countries including New Zealand (n=1), Italy (n=1), and the United Kingdom (n=2). In addition to English, some apps were also offered in Spanish (n=3), French (n=2), and other languages. Of the 15 apps evaluated, only 47% (7/15) were updated on at least one operating system since 2022. One app did not provide information on the last update year. One app (Babble NZ) had been trialed and tested (31).

As shown in Table 2, the apps in our sample offered a wide range of features. All but two apps provided condition-specific content, which included text, articles, or other resources for the unique needs and challenges faced by parents of infants in the NICU. This content often addressed topics such as explanations of the health condition, definitions of medical jargon, and promotion of parental involvement in hospital care routines. Several apps (n=7) included videos, with three apps (Congenital HeARts, Heartpedia, Surgical Animate!) offering sophisticated video/3D visualizations of the heart anatomy, physiology, and surgical repairs. There were apps (n=7) that offered parent-parent support through external links to Facebook communities, mental health screeners, events, and podcasts. Some, including Hand to Hold and PretermConnect, offered in-app community forums for psychosocial support to address parent stress related to infant hospitalization. Trackers (n=5) relevant to infant feeding, weight, diaper changes, and notification settings (n=4) for reminders and new information/events were available. Parents could also write journal entries, take notes, and store photos in some apps (n=6). Only three apps allowed parents to communicate with healthcare providers or specialists through links to healthcare system websites with contact information, or request forms for limited, free mental health services.

Quality assessment using MARS

Using the MARS quality subscales, the overall mean ratings for the 15 apps ranged from 2.65–4.68, with a total mean of 3.61 and a median of 3.58. Approximately two-thirds, 67% (10/15) received an overall quality rating of ‘acceptable’ (range, 3.29–3.85), and 20% (3/15) received a rating of ‘good’ (range, 4.08–4.68). None of the apps received a score of ‘excellent’. The Engagement subscale showed the widest range, yet the overall lowest subscale ratings (range, 1.50–5.0; mean =2.70). Aesthetics ratings (range, 2.17–4.83; mean =3.43) and Information ratings (range, 3.40–4.75; mean =3.98) were moderate. Functionality earned the highest ratings (range, 2.25–4.88; mean =4.01), and was evaluated as having good quality. The top three apps with overall mean ratings of good quality (i.e., PretermConnect, My Prem Baby, MyPreemie) were among the most robust in Functionality and Information. See Table 3 for a summary of results from the MARS ratings.

Discussion

Increasingly, parents who are preparing or caring for infants with medical complexity are looking to mHealth apps among many resources to address their informational and psychosocial needs over the perinatal period (12,40). Only one previous review and evaluation of mHealth apps focused on this population was found, which was conducted over 5 years ago (29). Employing the MARS tool, our findings showed that the majority of mHealth apps in our sample were found to be of acceptable (n=10; range, 3.29–3.85) or good (n=3; range, 4.08–4.68) quality. We also recognized the mHealth app market as a dynamic one, with updates lagging and changes in app availability.

The MARS quality dimensions allow for the evaluation of currently available apps, as well as for comparing app quality across studies. The Functionality and Information dimensions were rated as being of good quality for more than half of the apps in this sample. The lowest ratings were observed in the Engagement dimension, with an overall mean indicating poor quality, suggesting that more than half of these apps failed to effectively target users. This poor engagement quality was typically due to a lack of content or features that could elicit parents’ interest, be tailored to their needs, or offer interactive functions (e.g., setting notifications, enabling sharing). Poor engagement can negatively impact user retention, reducing the potential benefits of the apps (41). Low engagement could be particularly detrimental, diminishing mHealth access to mental health assessments and services for these parents who are known to encounter high levels of distress when expecting or caring for their vulnerable infants (42-44). Our findings showed slightly increased overall quality, yet similarly low engagement ratings when compared to a review of apps designed for parents of hospitalized infants by Richardson et al. (2019) (29). These findings could be important to consider in the context of parents’ generally high use of mHealth apps over the perinatal period, yet with uptake lowest among less resourced and culturally diverse groups (45). The apps in our sample tended to be text-heavy and appeared to exceed recommended readability levels (46), which might limit usefulness or perceived value for many adult learners. Thus, improvements in app engagement using multiple means of information delivery, including visual displays, videos, animations, or gamification, could be key for equitably reaching parents.

Our replicated search also revealed that the selection of apps for these parents had not been recently updated, and several were no longer functioning or available. Nearly half of the apps (n=7) had not been updated for 2–7 years, which is known to compromise functionality (47,48). We also identified six apps in our searches that were not accessible due to functionality issues or were no longer available on the app stores. Although our review (n=15 apps) and the review by Richardson et al. (2019) (n=18 apps) used slightly different inclusion criteria, seven apps appeared in both samples, and an additional six from their sample that met our inclusion criteria were no longer available (29). Thus, publicly available apps for this parent population have declined over the past 5 years. It is possible that sustaining app quality could be more feasible for non-profit organizations, which accounted for most developers within our sample, and more challenging for individual developers or freelancers.

Six apps identified in our searches were designed for patients of healthcare systems, requiring a secure log-in. As healthcare systems increasingly integrate digital health technologies (e.g., mHealth apps, websites, telehealth, patient engagement platforms) into patient care (49), there is a need to test these technologies for user acceptance and effectiveness on health outcomes. Recent literature suggests that developing and testing mHealth apps with these goals could be on the rise, with examples including the Heart Observation app (HOBS) (50), Preparing Heart and Mind (PHM) (33,34), and NICU2Home (51). There is promise in generating evidence for mHealth apps that are high quality and sustainably designed to meet the needs of parents who may otherwise lack access to such beneficial resources during a high risk and difficult time. Although most mHealth apps are currently limited in facilitating parent-healthcare provider communication, improving engagement could be achieved through secure use of in-app chats and video call channels, as well as AI integration into digital health products (52). High-quality mHealth apps offering evidence-based information and support, and that are both used and valued by parents, are particularly needed to extend care for those preparing or caring for infants with medical complexity.

Strengths and limitations

Limitations of this study include applying a systematic search strategy to dynamic and algorithmically-directed app store platforms, the inclusion of apps publicly available only in the United States, and conducting the search and evaluation in English only. To conduct a systematic search, we relied on PRISMA guidelines with necessary modifications that were demonstrated in similar app reviews. Recognizing that the mobile phones, operating system versions, and algorithms serving the results differed by research team member, we documented our search findings and resolved any unusual or divergent results through discussion and consensus. These factors limit the replicability of the search, and this review should be interpreted with reasonable caution. This review and evaluation included mHealth apps that were publicly available in the United States app stores due to required access for evaluation and because our research team did not include individuals residing in any other countries. Finally, although our research team members brought fluency in different languages, it was only possible to complete independent evaluations in English by at least two reviewers.

Conclusions

The objective of this systematic review was to identify and evaluate the quality of publicly available mHealth apps designed for parents who are preparing or caring for medically complex infants. The current review appears to be timely, given an ever-changing app market, and only one older study relevant to this parent population was found. MARS ratings showed that the majority of mHealth apps in our sample were of acceptable or good quality overall, with higher ratings predominantly in the Functionality and Information dimensions. Over half of the apps demonstrated poor quality in the Engagement dimension. Low engagement quality indicated that many apps lacked customizable content and interactive features needed by parents. Lack of engagement could hinder the digital reach to parents encountering high levels of distress and perpetuate inequities in providing health information to parents with diverse learning styles and literacy levels. Our findings also revealed that nearly half of the apps evaluated had not been updated for 2–7 years, and several apps became non-functional or unavailable over the past 5 years. While publicly available apps for this parent population are declining, it appears that healthcare systems are increasingly integrating mHealth apps, among other digital health technologies, into patient care. Our findings provide valuable insights to improve future development of mHealth apps designed for the perinatal period. More research is needed, however, to establish evidence-based, high-quality mHealth apps as an engaging approach that is needed to expand the reach of information and support to parents of vulnerable infants.

Acknowledgments

We wish to thank Tiffany Pollock for her contributions to this project.

Footnote

Reporting Checklist: The authors have completed the PRISMA reporting checklist. Available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-84/rc

Peer Review File: Available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-84/prf

Funding: This work was supported through the University of Minnesota School of Nursing Foundation Research Professorship of A.C.M., and by the National Institutes of Health’s National Center for Advancing Translational Sciences (Nos. K12TR004373 and 1UM1TR004405-01A1 to K.M.E.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health’s National Center for Advancing Translational Sciences.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-84/coif). A.C.M. holds the University of Minnesota, School of Nursing Foundation Research Professorship, which provides funding for research. K.M.E. reports funding from the National Institutes of Health’s National Center for Advancing Translational Sciences (Nos. K12TR004373 and 1UM1TR004405-01A1), and payment as a speaker on human milk for infants with congenital heart disease for Medela America educational webinar in June 2023. A.T. reports the employment with Cranial Technologies, Inc., which is unrelated to this study or the writing of this manuscript. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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