Abstract

Introduction

Information and Communication Technologies (ICTs) evolved into an important tool for health care, contributing to the dissemination and updating of knowledge and assisting in the professionals’ clinical decision-making. These technologies use mobile devices (cell phones, tablets etc.) and support in a decisive way the transformation of the way of how patients face their conditions, in their relationship with health professionals and in self-care¹1 Burbank AJ, Lewis SD, Hewes M, Schellhase DE, Rettiganti M, Hall-Barrow J, et al. Mobile-based asthma action plans for adolescents. J Asthma. 2015; 52(6):583-586.,²2 Barra DCC, Paim SMS, Sasso GTMD, Colla GW. Métodos para desenvolvimento de aplicativos móveis em saúde: revisão integrativa da literatura. Texto Contexto Enferm. 2017; 26(4):e 2260017.. The World Health Organization (WHO) considers the issue so urgent that it has created a World eHealth Observatory to assist in the implementation of eHealth in countries³3 World Health Organization. Global Observatory for eHealth. MHealth: new horizons for health through mobile technologies [Internet]. Geneva: WHO; 2011 [citado 7 Maio 2020]. Disponível em: http://www.who.int/goe/publications/goe_mhealth_web.pdf
http://www.who.int/goe/publications/goe_... .

Data produced by the National Household Sample Survey (PNAD), conducted in Brazil in 2017, found that about 93% of households had mobile devices⁴4 Instituto Brasileiro de Geografia e Estatística - IBGE. Estatísticas sociais. PNAD Contínua TIC 2017: internet chega a três em cada quatro domicílios do país [Internet]. Rio de Janeiro: IBGE; 2017 [citado 28 Ago 2020]. Disponível em: https://agenciadenoticias.ibge.gov.br/agencia-sala-de-imprensa/2013-agencia-de-noticias/releases/23445-pnad-continua-tic-2017-internet-chega-a-tres-em-cada-quatro-domicilios-do-pais
https://agenciadenoticias.ibge.gov.br/ag... . In a survey conducted in Brazil, it was found that 86% of respondents search the internet for information about their health, a percentage this higher than to medical opinion or specialists that was 74%⁵5 Braz M, Barros Filho AA, Barros MBA. Saúde dos adolescentes: um estudo de base populacional em Campinas, São Paulo, Brasil. Cad Saude Publica. 2013; 29(9):1877-1888..

There is a significant and progressive increase in the use of the internet by people with chronic health conditions, and these are the ones who most use the internet for health information when compared to other patients⁶6 Stellefson M, Chaney B, Barry AE, Chavarria E, Tennant B, Walsh-Childers K, et al. Web 2.0 chronic disease self-management for older adults: a systematic review. J Med Internet Res. 2013; 15(2):e35.. Chronic conditions begin gradually, have an indeterminate and long prognosis, and their duration and clinical conditions vary over time and require continuous care with frequent interventions that can be articulated through the use of technologies⁵5 Braz M, Barros Filho AA, Barros MBA. Saúde dos adolescentes: um estudo de base populacional em Campinas, São Paulo, Brasil. Cad Saude Publica. 2013; 29(9):1877-1888.,⁷7 Brasil. Ministério da saúde. Secretaria de Atenção à Saúde. Departamento de Atenção Básica. Diretrizes para o cuidado das pessoas com doenças crônicas nas redes de atenção à saúde e nas linhas de cuidado prioritárias. Brasília: Ministério da saúde; 2013..

The idea that young people rarely get sick has limited the health care of children and adolescents and consequently the advancement of research in this area. In addition to heredity, the environment where people live, socioeconomic conditions, habits, and lifestyle are determining and conditioning factors of individual health. It has been observed that eating and physical activity habits among children and adolescents have caused early health problems, leading to an increase in chronic diseases and mental disorders⁵5 Braz M, Barros Filho AA, Barros MBA. Saúde dos adolescentes: um estudo de base populacional em Campinas, São Paulo, Brasil. Cad Saude Publica. 2013; 29(9):1877-1888.,⁸8 Gabbay M, Cesarini PR, Dib SA. Diabetes melito do tipo 2 na infância e adolescência: revisão da literatura. J Pediatr. 2003; 79(3):201-208.,⁹9 Organização Pan-Americana da Saúde. Doenças crônico-degenerativas e obesidade: estratégia mundial sobre alimentação saudável, atividade física e saúde [Internet]. Washington: OPAS; 2003 [citado 26 Ago 2020]. Disponível em: http://bases.bireme.br/cgi-bin/wxislind.exe/iah/online/?IsisScript=iah/iah.xis&src=google&base=LILACS&lang=p&nextAction=lnk&exprSearch=359059&indexSearch=ID
http://bases.bireme.br/cgi-bin/wxislind.... .

The number of children and adolescents with at least one chronic health condition has been increasing. In Brazil, the PNAD/2008, revealed that the rate of chronic diseases in children aged 0 to 5 years was 9.1%, in children aged 06 to 13 years it was 9.7% and in adolescents aged 14 to 19 years the rate reached 11%. In a population-based study conducted in São Paulo in 2013, the prevalence of chronic disease among adolescents was 19.17%. Asthma is the most prevalent chronic disease, while diabetes mellitus has the largest incidence⁵5 Braz M, Barros Filho AA, Barros MBA. Saúde dos adolescentes: um estudo de base populacional em Campinas, São Paulo, Brasil. Cad Saude Publica. 2013; 29(9):1877-1888.,¹⁰10 Instituto Brasileiro de Geografia e Estatística - IBGE. Um panorama da saúde no Brasil: acesso e utilização dos serviços, condições de saúde e fatores de risco e proteção à saúde: 2008. Rio de Janeiro: IBGE; 2010..

The multifunctionality and remote home support via mobile applications allows the improvement of knowledge and skills for the management of chronic disease, through reminders for the use of medications and therapeutic diaries¹¹11 Le Marne FA, Butler S, Beavis E, Gill D, Bye AME. EpApp: development and evaluation of a smartphone/tablet app for adolescents with epilepsy. J Clin Neurosci. 2018; 50:214-220.. In recent years, it has been possible to observe an increase in mobile applications directed to this purpose, which are collaborating to the creation of a new type of health care, especially in places with low resources, difficult access to health services and shortage of professionals, in which the health information of users becomes timely and ubiquitous, reducing risks and increasing health outcomes²2 Barra DCC, Paim SMS, Sasso GTMD, Colla GW. Métodos para desenvolvimento de aplicativos móveis em saúde: revisão integrativa da literatura. Texto Contexto Enferm. 2017; 26(4):e 2260017..

Contrasting the wide availability of applications, there is a lack of data on the methodology for developing these tools, especially those directed to children and adolescents with chronic diseases. This population presents its own characteristics related to its health condition that often imposes a routine of treatments, use of health technologies, successive readmissions, etc.

In view of these considerations, the objective of this work was to perform an integrative review of methods and models of development and implementation of applications for children and adolescents with chronic diseases.

Method

The present study is an integrative literature review of papers published in journals indexed in the following databases: MEDLINE/PubMed, Web of Science, SciELO, LILACS and EMBASE, from 2010 to 2020. The search strategy applied to the research question is described in Frame 1.

The integrative review aims to gather studies on a given topic, integrating opinions, concepts or ideas, thus allowing a synthesis of the scientific knowledge produced at a certain moment. This review method is broader when compared to systematic or narrative literature reviews, since it allows the inclusion of studies with a quantitative as well as qualitative approach in order to provide a broader view of the analyzed construct. For this work we adopted the steps recommended for the construction of an integrative review, which consider: 1) elaboration of the research guiding question; 2) definition of the studies inclusion criteria and database selection; 3) application of a previously produced research instrument for data collection; 4) critical analysis of the included studies; 5) interpretation and discussion of results; 6) presentation of the integrative review conclusion¹²12 Souza MT, Silva MD, Carvalho R. Revisão integrativa: o que é e como fazer. Einstein (São Paulo). 2010; 8(1):102-106.,¹³13 Ganong LH. Integrative reviews of nursing research. Res Nurs Health. 1987; 10(1):1-11..

Elaboration of the research-guiding question

In spite of the increasing development of mobile health applications, there is a paucity of information about the methodologies used for the development and implementation of these applications. Considering this background, the following guiding research question was formulated as: What are the methodologies used for the development and implementation of mobile applications specifically targeted to children and adolescents with chronic health condition?

Definition of inclusion/exclusion and selection criteria

The inclusion of papers was carried out considering the following criteria: original research, literature reviews (systematic, integrative or narrative) and experience reports, published in English, Portuguese or Spanish, available in full; and presenting the stages of development or implementation/evaluation of the mobile application aimed at the treatment of chronic diseases for children and adolescents. We also included those that, during the reading stage were related to the theme, even when they were not identified in the databases considered. From the initially identified set, we excluded duplicate papers, editorials, congress annals, case studies, and reflection papers.

The search for the articles in the databases and the verification of whether they met the inclusion and exclusion criteria was carried out by two independent researchers, following the reading order: (1) titles of all identified studies; (2) abstracts of the studies selected in the previous phase; (3) complete reading of the selected texts. Disagreements were evaluated in a consensus meeting.

The selection of studies (figure 1) was conducted according to the PRISMA methodology (Preferred Reporting Items for Systematic Reviews and Meta-Analyses)¹⁴14 Moher D, Shamseer L, Clarke M, Ghersi D, Liberati A, Petticrew M, et al. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Syst Rev. 2015; 4(1):1..

Application for the data collection process of a previously built research instrument

After selecting the articles, the study recorded the following data: year and place of publication, title, name of the journal, language, authors, type of study, objective, target population, methodology of creation of the development and/or implementation of the application, guidance on the use of medication, results, conclusions, and limitations. Two independent researchers performed the discussion and presentation of the main research findings. Disagreements were discussed in a consensus meeting.

Critical analysis of included studies

After identification of the set of articles and data collection, the RATS method proposed by Taquette and Minayo¹⁵15 Taquette SR, Minayo MC. Análise de estudos qualitativos conduzidos por médicos publicados em periódicos científicos brasileiros entre 2004 e 2013. Physis. 2016; 26(2):417-434. was applied to evaluate the consistency of these works (frame 2). The method scale is composed of 15 items distributed by the domains: justified relevance of the study question (3 items), adequacy of the qualitative methodology (3 items), transparency of the procedures (4 items) and soundness of the interpretive approach (5 items). The scale provides a score ranging from 0 to 15 points which classifies the articles into: A - consistent, when they sufficiently score in 12 to 15 items; B - not very consistent, when they are only descriptive or without methodological transparency or with insufficient interpretations, scoring in 8 to 11 items; and C - inconsistent, when they score in seven or fewer items.

Results

The databases consulted returned a total of 87 articles meeting the inclusion and exclusion criteria. After reading the contents, four more studies were identified, but they were included because of their importance and relevance to the theme and because their results contributed to the elucidation of the guiding question. From the reading of the abstracts, content and application of the quality criteria, 8 articles were selected to compose the integrative review, which are described in table 3.

The articles analyzed were published between 2014 and 2020 and originated from the USA (3), Australia (2), Canada (1) United Kingdom (1) and South Africa (1). The development focus of these apps considered issues related to self-care for children and adolescents with: chronic pain, asthma, epilepsy, chronic kidney disease, sickle cell anemia, ß-thalassemia major, and tuberculosis. The qualitative methodology was identified in 6 articles and the data that contributed to the development of the applications were collected through focus groups, workshops, conversation roundtables, individual interviews and application of questionnaires.

Evaluation of the quality of the studies

The score provided by the RATS method classified five articles as consistent (Stinson et al.¹⁶16 Stinson JN, Lalloo C, Harris L, Isaac L, Campbell F, Brown S, et al. iCanCope with PainTM: user-centred design of a web- and mobile-based self-management program for youth with chronic pain based on identified health care needs. Pain Res Manag. 2014; 19(5):257-265.; Le Marne et al.¹¹11 Le Marne FA, Butler S, Beavis E, Gill D, Bye AME. EpApp: development and evaluation of a smartphone/tablet app for adolescents with epilepsy. J Clin Neurosci. 2018; 50:214-220.; Nightingale et al.¹⁸18 Nightingale R, Hall A, Gelder C, Friedl S, Brennan E, Swallow V. Desirable components for a customized, home-based, digital care-management app for children and young people with long-term, chronic conditions: a qualitative exploration. J Med Internet Res. 2017; 19(7):e235.; Peters et al.¹⁹19 Peters D, Davis S, Calvo RA, Sawyer SM, Smith L, Foster JM. Young people’s preferences for an asthma self-management app highlight psychological needs: a participatory study. J Med Internet Res. 2017; 19(4):e113.; Burbank et al.¹1 Burbank AJ, Lewis SD, Hewes M, Schellhase DE, Rettiganti M, Hall-Barrow J, et al. Mobile-based asthma action plans for adolescents. J Asthma. 2015; 52(6):583-586.) while other three (Leonard et al.²⁰20 Leonard S, Anderson LM, Jonassaint J, Jonassaint C, Shah N. Utilizing a novel mobile health “selfie” application to improve compliance to iron chelation in pediatric patients receiving chronic transfusions. J Pediatr Hematol Oncol. 2017; 39(3):223-229.; Farooqui et al.¹⁷17 Farooqui N, Phillips G, Barrett C, Stukus D. Acceptability of an interactive asthma management mobile health application for children and adolescents. Ann Allergy Asthma Immunol. 2015; 114(6):527-529. and Morse et al.²¹21 Morse RM, Myburgh H, Reubi D, Archey AE, Busakwe L, Garcia-Prats AJ, et al. Opportunities for mobile app–based adherence support for children with tuberculosis in South Africa. JMIR MHealth UHealth. 2020; 8(11):e19154.) were rated as poorly consistent. Only the article by Stinson et al.¹⁶16 Stinson JN, Lalloo C, Harris L, Isaac L, Campbell F, Brown S, et al. iCanCope with PainTM: user-centred design of a web- and mobile-based self-management program for youth with chronic pain based on identified health care needs. Pain Res Manag. 2014; 19(5):257-265. received the maximum score. In general, the lack of justification of the chosen method, historical, spatial and social contextualization, and ethical aspects, especially regarding the role of the researcher, contributed to the failure in reaching 15 points of the other articles classified as consistent. The articles classified as not very consistent presented weaknesses for not clearly explaining the inclusion criteria and for not dialoguing with the updated literature, besides the items cited above.

Methods used for the development and implementation/evaluation of the application

Of the 8 articles selected, only Nightingale et al.¹⁸18 Nightingale R, Hall A, Gelder C, Friedl S, Brennan E, Swallow V. Desirable components for a customized, home-based, digital care-management app for children and young people with long-term, chronic conditions: a qualitative exploration. J Med Internet Res. 2017; 19(7):e235. and Stinson et al.¹⁶16 Stinson JN, Lalloo C, Harris L, Isaac L, Campbell F, Brown S, et al. iCanCope with PainTM: user-centred design of a web- and mobile-based self-management program for youth with chronic pain based on identified health care needs. Pain Res Manag. 2014; 19(5):257-265. included the children or adolescents with chronic illness in the app creation, the other authors reported that the apps were developed directly by healthcare professionals specializing in the chronic illness they wished to study or by a technology professional specializing in app development. Le Marne et al.¹¹11 Le Marne FA, Butler S, Beavis E, Gill D, Bye AME. EpApp: development and evaluation of a smartphone/tablet app for adolescents with epilepsy. J Clin Neurosci. 2018; 50:214-220., Peters et al.¹⁹19 Peters D, Davis S, Calvo RA, Sawyer SM, Smith L, Foster JM. Young people’s preferences for an asthma self-management app highlight psychological needs: a participatory study. J Med Internet Res. 2017; 19(4):e113., Burbank et al.¹1 Burbank AJ, Lewis SD, Hewes M, Schellhase DE, Rettiganti M, Hall-Barrow J, et al. Mobile-based asthma action plans for adolescents. J Asthma. 2015; 52(6):583-586., Leonard et al.²⁰20 Leonard S, Anderson LM, Jonassaint J, Jonassaint C, Shah N. Utilizing a novel mobile health “selfie” application to improve compliance to iron chelation in pediatric patients receiving chronic transfusions. J Pediatr Hematol Oncol. 2017; 39(3):223-229., Farooqui et al.¹⁷17 Farooqui N, Phillips G, Barrett C, Stukus D. Acceptability of an interactive asthma management mobile health application for children and adolescents. Ann Allergy Asthma Immunol. 2015; 114(6):527-529., and Stinson et al.¹⁶16 Stinson JN, Lalloo C, Harris L, Isaac L, Campbell F, Brown S, et al. iCanCope with PainTM: user-centred design of a web- and mobile-based self-management program for youth with chronic pain based on identified health care needs. Pain Res Manag. 2014; 19(5):257-265. conducted studies with children and adolescents evaluating the prototypes of the developed apps in order to verify their usability and make necessary adjustments.

Contributions of the apps

The application developed by Stinson et al.¹⁶16 Stinson JN, Lalloo C, Harris L, Isaac L, Campbell F, Brown S, et al. iCanCope with PainTM: user-centred design of a web- and mobile-based self-management program for youth with chronic pain based on identified health care needs. Pain Res Manag. 2014; 19(5):257-265. was well evaluated by the users and met the need of education about chronic pain and symptom control, through resources such as: forums, reminders, use of animations and videos. Nightingale et al.¹⁸18 Nightingale R, Hall A, Gelder C, Friedl S, Brennan E, Swallow V. Desirable components for a customized, home-based, digital care-management app for children and young people with long-term, chronic conditions: a qualitative exploration. J Med Internet Res. 2017; 19(7):e235. verified that the key issues for the development of an application involve: easy handling, use of humor, simple language, relevant content, attractive visuals, and use of gamification. It also found that involving children in the development of the app tends to maximize its use. Peters et al.¹⁹19 Peters D, Davis S, Calvo RA, Sawyer SM, Smith L, Foster JM. Young people’s preferences for an asthma self-management app highlight psychological needs: a participatory study. J Med Internet Res. 2017; 19(4):e113. pointed out the needs and obstacles of what it is like to live with asthma, verifying the interest for psychological support by users. Their prototype was well evaluated by young people.

The application developed by Burbank et al.¹1 Burbank AJ, Lewis SD, Hewes M, Schellhase DE, Rettiganti M, Hall-Barrow J, et al. Mobile-based asthma action plans for adolescents. J Asthma. 2015; 52(6):583-586. was able to increase the effectiveness of asthma prevention and was well evaluated by users and gained approval to assist in an asthma action plan for adolescents. Farooqui et al.¹⁷17 Farooqui N, Phillips G, Barrett C, Stukus D. Acceptability of an interactive asthma management mobile health application for children and adolescents. Ann Allergy Asthma Immunol. 2015; 114(6):527-529. had the app approved and its use improved knowledge, asthma prevention, and treatment adherence. Leonard et al.²⁰20 Leonard S, Anderson LM, Jonassaint J, Jonassaint C, Shah N. Utilizing a novel mobile health “selfie” application to improve compliance to iron chelation in pediatric patients receiving chronic transfusions. J Pediatr Hematol Oncol. 2017; 39(3):223-229. created an app that assisted in taking medications, adherence to treatment, retention of knowledge about the disease and treatment. After 6 months of using the app, a decrease in serum ferritin was observed. Le Marne et al.¹¹11 Le Marne FA, Butler S, Beavis E, Gill D, Bye AME. EpApp: development and evaluation of a smartphone/tablet app for adolescents with epilepsy. J Clin Neurosci. 2018; 50:214-220. observed the increased knowledge about the disease and better management of epilepsy treatment. Morse et al.²¹21 Morse RM, Myburgh H, Reubi D, Archey AE, Busakwe L, Garcia-Prats AJ, et al. Opportunities for mobile app–based adherence support for children with tuberculosis in South Africa. JMIR MHealth UHealth. 2020; 8(11):e19154. reported that the use of technological resources such as the production of an avatar (digital person or character) and a program of goals and rewards might encourage adherence to tuberculosis treatment.

All the apps found in the survey had health education as one of their key focuses, and those that performed the usability evaluation, found increased knowledge about the disease and its treatment.

Discussion

This integrative review had the aim to verify which methodologies are used to create mobile apps for children and adolescents living with chronic diseases, due to the fact that we have observed an increasing use of apps without a correspondence at the same speed of studies that report the experience of creation and validation of these tools. The focus on children and adolescents living with chronic diseases was due to the fact that this population presents characteristics and demands specific to their health conditions, and the development of applications for this specific audience must consider these aspects.

Overall, it can be said that the analyzed apps had objectives focused on health promotion and surveillance, especially incentivizing self-care, motivation for healthy behaviors and psychological support. As a strategy for self-care, treatment adherence and health status monitoring, the selected studies used: sending messages to cell phones as medication and appointment reminders, recording health information (signs and symptoms) by users, recording videos and self-portraits to check whether users’ behaviors were in accordance with the recommendations provided by health professionals, and the creation of avatars that have their growth related to treatment adherence.

Mobile applications are widely accepted as innovative digital technologies, by offering convenience and benefits for users and managers through access to health knowledge, through either visual, tactile or auditory stimuli²²22 Galindo Neto NM, Sá GG M, Barbosa LU, Pereira JCN, Henriques AHB, Barros LM, et al. COVID-19 e tecnologia digital: aplicativos móveis disponíveis para download em smartphones. Texto Contexto Enferm. 2020; 29:e20200150.. The use of smartphones has facilitated people in various daily activities, whether in security, education and health, where it has the potential to minimize problems arising from the lack of professionals and geographical barriers that hinder access to health services.

Through the use of mobile applications it is possible to help improve the delivery of health services, raise awareness and empower patients to become more involved in their treatments therefore expanding autonomy, assisting in promoting healthy habits, providing reminders for medication use, facilitating sending medical data at distance, mediating communication between patients and health professionals, among others, in a personalized way for a large number of users¹¹11 Le Marne FA, Butler S, Beavis E, Gill D, Bye AME. EpApp: development and evaluation of a smartphone/tablet app for adolescents with epilepsy. J Clin Neurosci. 2018; 50:214-220.,²³23 Abaza H, Marschollek M. mHealth application areas and technology combinations. Methods Inf Med. 2017; 56(7):e105-122..

An increase in self-care was observed in several studies selected for the integrative review with asthma patients. Burbank et al.¹1 Burbank AJ, Lewis SD, Hewes M, Schellhase DE, Rettiganti M, Hall-Barrow J, et al. Mobile-based asthma action plans for adolescents. J Asthma. 2015; 52(6):583-586. observed a decrease in asthma attacks; Farooqui et al.¹⁷17 Farooqui N, Phillips G, Barrett C, Stukus D. Acceptability of an interactive asthma management mobile health application for children and adolescents. Ann Allergy Asthma Immunol. 2015; 114(6):527-529. obtained better adherence to treatment and observed an increase in knowledge about the disease; Peters et al.¹⁹19 Peters D, Davis S, Calvo RA, Sawyer SM, Smith L, Foster JM. Young people’s preferences for an asthma self-management app highlight psychological needs: a participatory study. J Med Internet Res. 2017; 19(4):e113. verified that to stimulate self-care, it is necessary to support the users’ mental health to manage anxiety, which can even lead to breathing difficulties. In Brazil, asthma is the most prevalent chronic disease among adolescents⁵5 Braz M, Barros Filho AA, Barros MBA. Saúde dos adolescentes: um estudo de base populacional em Campinas, São Paulo, Brasil. Cad Saude Publica. 2013; 29(9):1877-1888. and applications such as this can help reduce cases of disease exacerbation.

A chronic disease forces changes in children and adolescents’ lives, requiring adaptations and strategies for coping with their health condition. This process depends on the complexity and severity of the disease and the available structures to meet their needs and regain balance²⁴24 Vieira MA, Lima RAG. Crianças e adolescentes com doença crônica: convivendo com mudanças. Rev Lat Am Enfermagem. 2002; 10(4):552-560.. Regarding those structures available to provide social support, the application developed by Stinson et al.¹⁶16 Stinson JN, Lalloo C, Harris L, Isaac L, Campbell F, Brown S, et al. iCanCope with PainTM: user-centred design of a web- and mobile-based self-management program for youth with chronic pain based on identified health care needs. Pain Res Manag. 2014; 19(5):257-265. includes holding forums that provide an opportunity for adolescents to interact and share coping strategies with other youth. Peters et al.¹⁹19 Peters D, Davis S, Calvo RA, Sawyer SM, Smith L, Foster JM. Young people’s preferences for an asthma self-management app highlight psychological needs: a participatory study. J Med Internet Res. 2017; 19(4):e113. propose that an app aimed at young people with asthma should include psychological support to assist in coping with anxiety, lack of autonomy, and social disconnection.

It is noteworthy that the positive acceptance of an application by users is not a guarantee that there will be an improvement in self-care or a change in attitude towards their own health condition. The application developed by Le Marne et al.¹¹11 Le Marne FA, Butler S, Beavis E, Gill D, Bye AME. EpApp: development and evaluation of a smartphone/tablet app for adolescents with epilepsy. J Clin Neurosci. 2018; 50:214-220. in order to inform and assist in the management of epilepsy in children and adolescents showed good acceptance and better medication management, but showed no improvement in psychosocial outcomes (self-care or proactivity toward the disease). Isolated educational interventions to stimulate treatment adherence may be insufficient to improve self-care. The insertion of behavioral elements such as monitoring, goal setting, rewards, and linking treatment to routines may improve outcomes²⁵25 Santer M, Ring N, Yardley L, Geraghty AWA, Wyke S. Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers’ views. BMC Pediatr. 2014; 14:63..

Adherence was analyzed by Leonard et al.²⁰20 Leonard S, Anderson LM, Jonassaint J, Jonassaint C, Shah N. Utilizing a novel mobile health “selfie” application to improve compliance to iron chelation in pediatric patients receiving chronic transfusions. J Pediatr Hematol Oncol. 2017; 39(3):223-229. following the administration of an iron chelating agent by sending daily videos and through guidance on sickle cell anemia and ß-thalassemia major, allowing greater retention of knowledge and adherence to treatment in addition to a decrease in serum ferritin at 6 months of follow-up.

Patients with sickle-cell anemia and ß-thalassemia major need frequent transfusions of red blood cells and, thus, there is usually an iron overload; the excess of this substance in the body is harmful, since iron is deposited in several organs, such as the liver, spleen, and myocardium, causing cell lesions and functional failure, which is the leading cause of death (2/3 of the cases) in patients with ß-thalassemia major²⁶26 Cançado RD. Sobrecarga e quelação de ferro na anemia falciforme. Rev Bras Hematol Hemoter. 2007; 29(3):316-326.. Iron overload can be verified by quantifying serum ferritin and after 6 months of using the application developed by Leonard et al.²⁰20 Leonard S, Anderson LM, Jonassaint J, Jonassaint C, Shah N. Utilizing a novel mobile health “selfie” application to improve compliance to iron chelation in pediatric patients receiving chronic transfusions. J Pediatr Hematol Oncol. 2017; 39(3):223-229. observing a drop in serum ferritin; this result is an indication that the use of chelating medication (helps iron excretion) was more efficient after using the application.

It was possible to observe that most authors performed steps such as: conception, development, implementation and evaluation to create a functional application. In addition, all of them considered importance of the participation of the user in the app development process.

The apps developed with the priority participation of children and teenagers tended to privilege issues such as attractive design, use of a simpler and humorous language, and gamification as some of the items that facilitate and stimulate their use. Using a dynamic system, with challenges, points, rewards and rankings, with mechanics similar to games (gamification) increases participation and can generate engagement and commitment from users²⁷27 King D, Greaves F, Exeter C, Darzi A. ‘Gamification’: Influencing health behaviours with games. J R Soc Med. 2013; 106(3):76-78..

Gamification lends activities to be more enjoyable, while providing people’s engagement with tasks that seem demotivating, and is commonly used in fitness apps and to encourage health behaviors for the treatment of chronic diseases²⁸28 Cheng VWS, Davenport T, Johnson D, Vella K, Hickie IB. Gamification in apps and technologies for improving mental health and well-being: systematic review. JMIR Ment Health. 2019; 6(6):e13717.,²⁹29 Sardi L, Idri A, Fernández-Alemán JL. A systematic review of gamification in e-Health. J Biomed Inform. 2017; 71:31-48.. The use of gamification in apps can imply positive social relationships as it can develop a sense of competition to reach the highest status on the leaderboard, resulting in various emotional skills such as self-satisfaction, self-esteem, and pride, in addition, gamification can help in cognitive development as it stimulates the brain and promotes knowledge acquisition²⁹29 Sardi L, Idri A, Fernández-Alemán JL. A systematic review of gamification in e-Health. J Biomed Inform. 2017; 71:31-48..

The applications that focused on health professionals tended to emphasize issues related to security and privacy, largely due to the professionals’ concern with the possible sharing of cell phones and exposure of issues related to the disease and, consequently, possible embarrassment.

Anyway, regardless of the target audience, the analyzed studies indicate that technical and complex terms should be avoided, and aspects such as ease of use, familiarity with the technology, design, security and privacy, and interaction should be considered. In addition, the participation of multiprofessional teams should be encouraged for the development of applications so that the knowledge can complement each other, including the information that will be generated from the use of applications can help in clinical decision making, enabling more accurate diagnoses and more qualified therapeutic approaches.

A strong point of the study by Nightingale et al.¹⁸18 Nightingale R, Hall A, Gelder C, Friedl S, Brennan E, Swallow V. Desirable components for a customized, home-based, digital care-management app for children and young people with long-term, chronic conditions: a qualitative exploration. J Med Internet Res. 2017; 19(7):e235. was the participatory approach and the use of drawings and existing applications to provide a visual and interactive experience during the interviews, always verbally guided by a researcher. Peters et al.¹⁹19 Peters D, Davis S, Calvo RA, Sawyer SM, Smith L, Foster JM. Young people’s preferences for an asthma self-management app highlight psychological needs: a participatory study. J Med Internet Res. 2017; 19(4):e113. also listened to users’ opinions about what they liked most and what they did not approve of in other health apps. By flagging the strengths and weaknesses of other apps, users may guide the development of new ones.

The qualitative approach allowed a more detailed exploration of subjective questions such as what kind of information related to their disease they would like to find and what would make them spend more or less time using the app. From these sets of responses, it was found that while users preferred a simpler language, they would like to find information related to various aspects of their own health condition going beyond the basic information that is easily located on any website. The existence of this type of information would make the app more attractive to them.

It is observed that the use of mobile devices sums an additional resource to health care actions, especially directed to children, in which the interaction with virtual and multimedia resources, including interactive games, can motivate and encourage proactive involvement in learning content specific to their own disease³⁰30 Matsunaga RM, Moraes RLO, Borges MAF, Matta MAP, Ozelo MC. Development of a serious game for children with hemophilia. J Health Inform. 2014; 6(esp):114-119.,³¹31 Santana CCAP, Naghettini AV, Barreto GO, Mazaro-Costa R, Freitas ATVS. Aplicativos como estratégia de ensino na doença renal crônica infantil: uma revisão da literatura. In: Anais do 15o Congresso Brasileiro de Informática em Saúde; 2016; Goiânia, GO. Goiânia: UFG; 2016. p. 287-297..

The adolescence phase is a period of increased exposure to factors such as: alcohol intake, smoking, sedentary lifestyle, stress and obesity; and many of the habits acquired in this phase of life are carried into adulthood along with their health consequences⁵5 Braz M, Barros Filho AA, Barros MBA. Saúde dos adolescentes: um estudo de base populacional em Campinas, São Paulo, Brasil. Cad Saude Publica. 2013; 29(9):1877-1888.. If health care applications are introduced during adolescence, it may be easier for users to develop healthy habits and improve care related to their chronic health condition when they reach adulthood.

Difficulties reported by the authors in the development of applications

The evaluated articles pointed out difficulties such as, for example, the short period of time to conduct the study and the small sample size, the latter can be considered a characteristic of qualitative research, focusing mostly in an in-depth analysis of the issue studied and not in a quantitative way, the concern with generalizing the results for example, is not the target of qualitative research.

Peters et al.¹⁹19 Peters D, Davis S, Calvo RA, Sawyer SM, Smith L, Foster JM. Young people’s preferences for an asthma self-management app highlight psychological needs: a participatory study. J Med Internet Res. 2017; 19(4):e113. and Morse et al.²¹21 Morse RM, Myburgh H, Reubi D, Archey AE, Busakwe L, Garcia-Prats AJ, et al. Opportunities for mobile app–based adherence support for children with tuberculosis in South Africa. JMIR MHealth UHealth. 2020; 8(11):e19154. also reported social disadvantages as difficulties, since this aspect, according to the authors, limits access to digital technologies that require mobile equipment compatible with the applications developed and high-speed internet.

Conclusion

It was observed that most of the applications positively influenced the treatment of the chronic diseases studied, there was an increase in adherence and in the improvement of knowledge about the disease, as well as having favored self-care, leading to the prevention of acute conditions and worsening of symptoms. This factor showed that mobile applications aimed at health are important allies in the care of children and adolescents with chronic diseases.

The development of an application for children and adolescents with chronic diseases must consider users within the creative process as well as count on multiprofessional teams. Another relevant point in this process is to provide information that goes beyond that available on search engines, to present relevant issues, with simple language, that is visually attractive and easy to use.

Many obstacles between the population and health services may be overcome with the use of mobile devices, sharing information aimed at health education, prevention, and disease treatment. Most chronic diseases when are promptly detected and treated have a better prognosis. In addition, eating and lifestyle habits are mostly acquired during adolescence, so it is important to include early technologies that promote skills and knowledge necessary for patients to play a more active role in managing their health and living conditions.

The integrative literature review allowed us to verify that there is still a scarcity of reports on the development of apps aimed exclusively at children and adolescents with chronic disease in order to produce strong evidence regarding this topic. Strategies for the inclusion of digital technology should consider not only the development of applications, but also encompass the access to compatible mobile devices, training, and high-speed internet to ensure equitable access among the different population profiles that can benefit from this resource. It is important to recognize the needs of children and adolescents with chronic diseases, in order to plan and implement new technologies in a way that is coherent and appropriate to the reality and needs of each one of them to contribute to a safe and effective treatment, additionally improving the quality of life.

References

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