Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale
BackgroundMobile apps are becoming increasingly popular, with 5.70 million apps available in early 2021. Smartphones can provide portable and convenient access to health apps. Here, we consider apps for people with one of the estimated 7000 rare conditions, which are defined...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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JMIR Publications
2022-07-01
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| Series: | Journal of Medical Internet Research |
| Online Access: | https://www.jmir.org/2022/7/e36691 |
| _version_ | 1797734869002878976 |
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| author | Sarah Hatem Janet C Long Stephanie Best Zoe Fehlberg Bróna Nic Giolla Easpaig Jeffrey Braithwaite |
| author_facet | Sarah Hatem Janet C Long Stephanie Best Zoe Fehlberg Bróna Nic Giolla Easpaig Jeffrey Braithwaite |
| author_sort | Sarah Hatem |
| collection | DOAJ |
| description |
BackgroundMobile apps are becoming increasingly popular, with 5.70 million apps available in early 2021. Smartphones can provide portable and convenient access to health apps. Here, we consider apps for people with one of the estimated 7000 rare conditions, which are defined as having an incidence of <1 in 2000. The needs of people with rare conditions are known to be different from those of people with more common conditions. The former may be socially isolated (not knowing anyone else who has the condition) and may not be able to find reliable information about the disorder.
ObjectiveThe aim of this review is to search for apps developed specifically for people diagnosed with a rare disease and to assess them for quality using the Mobile App Rating Scale (MARS). We examine features that address 6 identified needs of people with a rare disorder and make recommendations for future developers.
MethodsGoogle Play Store (Android) and Apple App Store (iOS) were searched for relevant health-related apps specifically for rare diseases. The search included the names of 10 rare disease groups. App quality was determined using MARS, assessing app engagement, functionality, aesthetics, and information.
ResultsWe found 29 relevant apps (from a total of 2272) addressing 14 rare diseases or disease groups. The most common rare conditions addressed were cystic fibrosis (n=6), hemophilia (n=5), and thalassemia (n=5). The most common app features were web-based information and symptom trackers. The mean MARS score was 3.44 (SD 0.84). Lowest scores were for engagement.
ConclusionsMost apps provided factual and visual information, providing tools for self-monitoring and resources to help improve interactions during health consultations. App origin and quality varied greatly. Developers are recommended to consider ways to make appropriate apps more easily identifiable to consumers, to always include high-quality information, improve engagement, provide qualitative evaluations of the app, and include consumers and clinicians in the design. |
| first_indexed | 2024-03-12T12:50:46Z |
| format | Article |
| id | doaj.art-a57550db88ce4badad8ec1f64804e00e |
| institution | Directory Open Access Journal |
| issn | 1438-8871 |
| language | English |
| last_indexed | 2024-03-12T12:50:46Z |
| publishDate | 2022-07-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | Journal of Medical Internet Research |
| spelling | doaj.art-a57550db88ce4badad8ec1f64804e00e2023-08-28T22:45:02ZengJMIR PublicationsJournal of Medical Internet Research1438-88712022-07-01247e3669110.2196/36691Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating ScaleSarah Hatemhttps://orcid.org/0000-0002-3542-6138Janet C Longhttps://orcid.org/0000-0002-0553-682XStephanie Besthttps://orcid.org/0000-0002-1107-8976Zoe Fehlberghttps://orcid.org/0000-0002-8449-206XBróna Nic Giolla Easpaighttps://orcid.org/0000-0001-6787-056XJeffrey Braithwaitehttps://orcid.org/0000-0003-0296-4957 BackgroundMobile apps are becoming increasingly popular, with 5.70 million apps available in early 2021. Smartphones can provide portable and convenient access to health apps. Here, we consider apps for people with one of the estimated 7000 rare conditions, which are defined as having an incidence of <1 in 2000. The needs of people with rare conditions are known to be different from those of people with more common conditions. The former may be socially isolated (not knowing anyone else who has the condition) and may not be able to find reliable information about the disorder. ObjectiveThe aim of this review is to search for apps developed specifically for people diagnosed with a rare disease and to assess them for quality using the Mobile App Rating Scale (MARS). We examine features that address 6 identified needs of people with a rare disorder and make recommendations for future developers. MethodsGoogle Play Store (Android) and Apple App Store (iOS) were searched for relevant health-related apps specifically for rare diseases. The search included the names of 10 rare disease groups. App quality was determined using MARS, assessing app engagement, functionality, aesthetics, and information. ResultsWe found 29 relevant apps (from a total of 2272) addressing 14 rare diseases or disease groups. The most common rare conditions addressed were cystic fibrosis (n=6), hemophilia (n=5), and thalassemia (n=5). The most common app features were web-based information and symptom trackers. The mean MARS score was 3.44 (SD 0.84). Lowest scores were for engagement. ConclusionsMost apps provided factual and visual information, providing tools for self-monitoring and resources to help improve interactions during health consultations. App origin and quality varied greatly. Developers are recommended to consider ways to make appropriate apps more easily identifiable to consumers, to always include high-quality information, improve engagement, provide qualitative evaluations of the app, and include consumers and clinicians in the design.https://www.jmir.org/2022/7/e36691 |
| spellingShingle | Sarah Hatem Janet C Long Stephanie Best Zoe Fehlberg Bróna Nic Giolla Easpaig Jeffrey Braithwaite Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale Journal of Medical Internet Research |
| title | Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale |
| title_full | Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale |
| title_fullStr | Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale |
| title_full_unstemmed | Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale |
| title_short | Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale |
| title_sort | mobile apps for people with rare diseases review and quality assessment using mobile app rating scale |
| url | https://www.jmir.org/2022/7/e36691 |
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