St. George's University, 9900 Broadway Ext Suite 100, Oklahoma City, OK 73114, USA.
OKC Kids Urology, 9900 Broadway Ext Suite 100, Oklahoma City, OK 73114, USA.
J Pediatr Urol. 2023 Jun;19(3):325-334. doi: 10.1016/j.jpurol.2023.02.021. Epub 2023 Feb 28.
Despite the proliferation of over 45 000 smartphone mobile health applications (MHAs), as far as we know, there is no MHA for those living with rare diseases such as Bladder Exstrophy-Epispadias-Cloacal Exstrophy complex (BEEC). We hypothesized that an MHA could provide similar "on-demand" information and connectivity within health communities for patients with BEEC as they do for more common diseases. Thus, our primary goal was to create an MHA for patients and families affected by BEEC to provide them with important information about the condition and a format for them to connect with other affected patients and families. A secondary goal was to develop an adaptable MHA template for other rare diseases in the future.
We began our app development by examining existing common-disease MHAs for thematic structure. We conducted an extensive literature search of PubMed and Google scholar for MHA development and existing MHAs related to BEEC, utilizing these search terms: mobile health applications, rare diseases, bladder exstrophy, and online health communities. Our app development team began with our clinical multidisciplinary team of pediatric urologists; a child psychiatrist; a patient/family mental health therapist; and a certified nurse practitioner. We hired a website engineer and a production team. All clinical members have extensive experience caring for children and families affected by BEEC. Additionally, clinical team members compiled lists of themes deemed relevant from these reviews and themes gleaned from their clinical experience that appear with some frequency or urgency and from the myriad of themes discussed within the literature for MHAs.
We found no existing rare disease MHAs in the literature or our search of app stores online. However, we derived basic app categories from existing MHA formats and the thematic content of all sources reviewed. These categories aligned with the groupings of our lists of clinical themes. Thus, we could subsume diverse themes within a broad categorical format: for example, child development (as "Psychological Development" in the app) or various clinical care options (as "Treatment"). This app structure became nine sections, as shown in. This format allows diverse information to be retrieved efficiently from broader categories. This app is being offered to affected families, healthcare providers, and individuals unrelated to where care is offered.
"We the BE" is the first MHA developed for a rare disease, BEEC. It has been published in a downloadable format for the general public at no cost. Further research is required to determine its efficacy for the BEEC community members; preliminary, unsolicited feedback from multiple users has been positive.
尽管已有超过 45000 个智能手机移动健康应用程序（MHAs），但据我们所知，尚无针对膀胱外翻-尿道上裂-泄殖腔外翻复合畸形（BEEC）等罕见病患者的 MHA。我们假设，MHA 可以为 BEEC 患者在健康社区内提供类似的“按需”信息和连接，就像为更常见的疾病那样。因此，我们的主要目标是为受 BEEC 影响的患者和家庭创建一个 MHA，为他们提供有关该疾病的重要信息，并为他们提供与其他受影响患者和家庭联系的格式。次要目标是为将来的其他罕见疾病开发一个可适应的 MHA 模板。
我们首先通过检查现有常见疾病 MHA 的主题结构来开始我们的应用程序开发。我们在 PubMed 和 Google Scholar 上进行了广泛的 MHA 开发和与 BEEC 相关的现有 MHA 文献搜索，使用了以下搜索词：移动健康应用程序、罕见疾病、膀胱外翻和在线健康社区。我们的应用程序开发团队由我们的多学科儿科泌尿科临床团队、儿童精神病学家、患者/家庭心理健康治疗师和认证护士从业者组成。我们聘请了网站工程师和制作团队。所有临床成员都有照顾受 BEEC 影响的儿童和家庭的丰富经验。此外，临床团队成员还从这些评论和从他们的临床经验中经常或紧急出现的主题以及文献中为 MHAs 讨论的众多主题中编制了被认为相关的主题列表。
我们在文献或我们对在线应用商店的搜索中均未找到现有的罕见病 MHA。然而，我们从现有 MHA 格式和所有来源的主题内容中得出了基本的应用程序类别。这些类别与我们的临床主题列表的分组一致。因此，我们可以将各种主题归入广泛的类别格式中：例如，儿童发展（如应用程序中的“心理发展”）或各种临床护理选项（如“治疗”）。该应用程序结构分为九个部分，如图所示。这种格式允许从更广泛的类别中高效检索各种信息。该应用程序现提供给受影响的家庭、医疗保健提供者和与提供护理地点无关的个人。
“We the BE”是为罕见病 BEEC 开发的第一个 MHA。它已以可下载的格式发布，供公众免费使用。需要进一步研究来确定其对 BEEC 社区成员的疗效；多个用户的初步、非征求性反馈是积极的。
