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PURPOSE OF REVIEW: At many institutions, the Covid-19 pandemic made it necessary to rapidly change the way services are provided to patients, including those with cystic fibrosis (CF). The purpose of this review is to explore the past, present and future of telehealth and virtual monitoring in CF and to highlight certain challenges/considerations in developing such services. RECENT FINDINGS: The Covid-19 pandemic has proven that telehealth and virtual monitoring are a feasible means for safely providing services to CF patients when traditional care is not possible. However, both telehealth and virtual monitoring can also provide further support in the future in a post-covid era through a hybrid-model incorporating traditional care, remote data collection and sophisticated platforms to manage and share data with CF teams. SUMMARY: We provide a detailed overview of telehealth and virtual monitoring including examples of how paediatric and adult CF services adapted to the need for rapid change. Such services have proven popular with people with CF meaning that co-design with stakeholders will likely improve systems further. In the future, telehealth and virtual monitoring will become more sophisticated by harnessing increasingly powerful technologies such as artificial intelligence, connected monitoring devices and wearables. In this review, we harmonise definitions and terminologies before highlighting considerations and limitations for the future of telehealth and virtual monitoring in CF.

Purpose Multimedia is considered a cost effective and practical learning medium. This study aimed to investigate the attitudes of medical and allied healthcare students towards the use of various multimedia learning aids and explored students’ attitudes towards these learning aids. Method An online questionnaire was used to collect data. Students were invited to partake in the study via email and data was collected over a six-month period. Results A total of 153 students responded to the survey. The data shows that students have had a positive experience using devices like smartphones (88.88%, n = 136) and laptops (89.19%, n = 132). Students are confident searching for multimedia resources (76.31%, n = 116), and have some familiarity or exposure to multimedia as part of their learning experience. Students preferred traditional teaching methods to learning with multimedia (58.59%, n = 75), but regarded multimedia as an effective and efficient tool for practical learning (73.02%, n = 111). The participants reported using e-learning tools and 2D animations more frequently than other multimedia tools and reported being least familiar with Augmented Reality and 3D websites. Finally, students expressed an interest in the development of 3D animations (66.66%, n = 80), interactive 3D teaching tools (65.45%, n = 72), and simulators (64.07%, n = 66) to complement their future studies. Conclusion The results of the study show that participants acknowledged the important role of multimedia as a practical learning tool that can greatly complement and enhance the traditional teaching methods but cannot replace them. Medical and healthcare students expressed a particular interest in the development of interactive tools including simulators to supplement their studies and enhance the learning process.

In this chapter, we will discuss the design and development of a patient passport mHealth application for Cystic Fibrosis adults from ideation to app-store release. By allowing the patients access to their own unique data, it is anticipated that it will be of benefit when travelling abroad and between CF centres. The design process followed a pipeline we developed that is informed by patient and healthcare professional input. The app structure resembles an Irish patient file and is divided into three categories: “My CF Info”, “My Medical History”, and “My Clinical Appointments”. My CF Info allows the patient to store personal information such genotype, medical team contact information, physiotherapy, allergies, and medications. My Medical History allows the user to record information such as CF renal disease, CF diabetes, and the insertion/removal of a portacath/gastrostomy tube. My Clinical Appointments allows the user to record the type of appointment (annual assessment, clinic, other) and all information that would ordinarily be inserted into a patient file such as weight, height, spirometry and other comments. Weight and lung function are also displayed in a plot graph. The app has undergone pilot testing with five CF adults before being rolled out onto the Google Play Store.

Cystic Fibrosis (CF) patients need to meet with their Multidisciplinary Team (MDT) approximately every four months. In-between these scheduled visits, patients may contact the Multidisciplinary Team (MDT) via phone to express any health-related concerns. This often requires a phone evaluation before organizing an unscheduled appointment. Due to the sporadic nature of these phone calls, resources and time are often heavily affected. With the predicted increase of the adult CF patient population, there is a need for better ways to manage and educate patients on their condition. The aim of this ICT intervention is to reduce this effect by creating an online virtual Dr, that can be accessed by the patient from their own home. This Virtual Doctor (Dr) will generate a report and an initial evaluation that will be sent to the MDT to action. The patient is also provided with a response outlining when the team will be in contact. The system includes a Dr avatar with facial animations and 3D scene. The voice of the avatar is generated using Node.js along with the Amazon Web Services Polly. The Web Speech API speech recognition is used to provide the ability to recognize voice context from an audio input; in this case the patient's computer microphone. This allows for the patient's interaction with the avatar and the documentation of the answers. These answers are scored and used as a comparison to the patient's baseline health status. The patient's answers and scores are stored within a database and sent via email to the MDT for evaluation. The score informs the Virtual Dr's response and MDT report. It is anticipated that this tool will be of benefit to both patients and medical staff. By creating such a system, patients can learn about their own condition and health status, while improving time and resource management. A prototype of the system has been created in preparation for pilot testing with adult CF patients.

Tooth morphology has a pivotal role in the dental curriculum and provides one of the important foundations of clinical practice. To supplement tooth morphology teaching a three-dimensional (3D) quiz application (app) was developed. The 3D resource enables students to study tooth morphology actively by selecting teeth from an interactive quiz, modify their viewpoint and level of zoom. Additionally, students are able to rotate the tooth to obtain a 3D spatial understanding of the different surfaces of the tooth. A cross-over study was designed to allow comparison of students' results after studying with the new application or traditionally with extracted/model teeth. Data show that the app provides an efficient learning tool and that students' scores improve with usage (18% increase over three weeks, P

Objective: Patients (F508del/F508del or F508del/MF) with severe CF (ppFEV1

Background: Medical professionals are aware that patients continue to use the internet as a medical information source. With the advent of government campaigns to increase awareness of data privacy and information sources, we investigate how the landscape of internet postings has changed for CF and how this could affect patients seeking online medical information. Methods: Key phrases relating to CF were identified by a CF multidisciplinary team and entered in Google Alerts with prospective tracking for 6 months in 2015. Alerts were also created for 3 non-orphan lung diseases (asthma, chronic obstructive pulmonary disease and lung fibrosis). These steps were repeated again in 2019 and the data compared. Results: In 2015, Asthma received the highest mean number of alerts per day (31.7), followed by CF (16.1), then COPD (14.6), and Lung Fibrosis (5.1). This changed in 2019 where CF was the highest with 19.5, followed by Asthma (11.5), COPD (10.3), and Lung Fibrosis (7.4). In both years, the USA generated (56%) the highest number of alerts for CF. There was an increased number of blocked articles in 2019 (540). In 2015, News (58%) was the most common category for CF alerts, but this changed to Financial/Marketing (35%) in 2019. In 2015 there was a small number of Social Media alerts recorded for all lung conditions;however, in 2019, there were none for the comparative lung conditions and only 3 for CF. Alert frequency for CF-related terms also increased in 2019. Conclusion: The landscape for internet postings for CF has changed. CF is now more commonly reported than other lung conditions and the ‘business of CF’ is now more frequently reported online while content from the general public has decreased (or is private). Medical professionals need to remain vigilant and increase awareness of information-dilution by monetary based media. A limitation of this study is that it predated the COVID-19 pandemic and it is suggested that future works revisit this at an appropriate time.

For those diagnosed with a chronic condition at an early age, such as Cystic Fibrosis, transition from a paediatric care facility to an adult orientated facility is often inevitable. Patients can feel anxious and nervous as they are unfamiliar with their new surroundings and healthcare team. Research has shown that these symptoms would be reduced if patients were given the opportunity to meet their new healthcare team and become familiar with the new process and surroundings prior to transitioning. This research explores the possibility of using Virtual Reality as a means of complementing the transition process. By allowing patients to explore and learn of their new surroundings and meet their healthcare team virtually prior to transitioning, it is anticipated that their will be an improvement on patient education and experience. A 3D model of the Adult CF Day Unit, Specialist Inpatient Unit, and other common testing labs is created for exploration in the Unreal Engine 4. This 3D environment is then prepared for use in a HTC Vive. The environment also includes interest points, audio, and welcome video introducing the adult CF healthcare team. Throughout the development process this system is tested with five technical researchers. The feedback received from these evaluators primarily focused on the use of a UI and other features such as a bread-crumb trail and audio to assist in the educational content at interest points. This feedback has now been implemented in preparation for patient testing. It is anticipated that this will enhance the patients experience and educate them on the transition process.

Background: Patients often contact the cystic fibrosis (CF) multidisciplinary team (MDT) via phone to express health-related concerns in between the standard quarterly review. This often requires a phone evaluation before organising an unscheduled appointment. These sporadic interactions heavily affect available resources. This strain on resources will be further impacted when considering that data from the European CF registry predicts that there will be a 75% increase in the adult CF population by 2025. Furthering this, CF services are increasingly more strained now during the global Covid-19 pandemic. Objective: This research first sets about to design and develop a Virtual Doctor system based on the expertise of a MDT through multiple consultations. Next, pilot data pertaining to user acceptance and experience with using this novel technology is gathered. We therefore aim to investigate if the use of such technology can be beneficial in a specific clinical setting. Method: The final collaborative-design of the Virtual Doctor comprises several technical features and is primarily a voice synthesis system allowing the patient to interact with natural language. The virtual doctor asks the patient questions regarding their health concerns and can collect real-time clinical metrics such as FEV1, oxygen saturation, temperature. The patients’ responses and metrics are then compared to baseline values calculating a score which stratifies a response time from the CF team. This information is then collated in a report and sent to the CF team for action. Future works: Initial stress testing of the technical performance is now complete. Supportive visual media to improve coaching of using clinical devices have now been implemented in preparation for patient pilot testing which is currently ongoing. It is anticipated that a virtual system such as the Virtual Doctor will become more accessible and acceptable to patients, especially during the Covid-19 pandemic.

Background: Patient education is an integral part of management and care. For adults with Cystic Fibrosis, new procedures and devices may arise. Studies have shown that patients forget between 40%-80% provided during a consultation, hence other accessible platforms for disseminating this knowledge is required. Aim: This paper aims to outline the design, creation and evaluation of three patient e-learning tools. These tools are available online so that they can be accessed by patients via bedside tablets in a hospital ward and personal devices. This research will then investigate usage data from those users accessing the tools in a hospital and non-hospital context. Methodologies: Three education tools were developed which focus on Portacaths, Gastrostomy Tubes, and Bronchoscopies. All educational multimedia was developed and validated by the Cork CF Multidisciplinary team. The information is presented to the user in a FAQ (Frequently Asked Questions) format, where users can navigate through content via buttons with a series of commonly asked questions. These questions are identified by CF nurse specialists with over 25 years’ experience in educating CF adults on these devices and procedures. The web tools are developed using HTML, CSS, AJAX, PHP and JavaScript. Once the user visits an e-learning tool, a unique identifier is generated and stored in the browser's local storage as well as a text file on the server. Each button click and respective time stamp is then stored in the text file. This data is then analysed to determine the most frequently viewed content as well as time spent viewing content and visiting the e-learning tool. Results: Overall, all three e-learning tools were accessed more frequently by personal devices. Generally, users tended to spend less time using the e-learning tools via the bedside tablet. There was also a tendency for users to visit more general information on the bedside tablets, whereas users who access the e-learning tools from personal devices tended to spend more time exploring the web tools and focused more on care information. Conclusion: Patient education is an integral part of care. From the pilot study conducted by this research, it would appear that patients exhibit different motivations when visiting e-learning material in a hospital and non-hospital setting. As such it is advised that e-learning content is made available to patients in each context.

Cystic Fibrosis is the most common life limiting genetic disease affecting Caucasians. The life expectancy of this cohort has increased and is predicted to reach retirement age. As most CF patients are diagnosed from birth, they undergo educational and management programs throughout their lives. However numerous studies have identified various knowledge gaps. This paper presents a scoping literature review of the available educational interventions for adult CF patients. This review follows the framework as outlined by Arksey et al. [9]. A search string is entered into four databases and the resulting literature is downloaded into the academic reference manager software, Mendeley version 1.16.1. The manuscripts are then subjected to title, abstract, and introduction refinement. The remaining manuscripts are then reviewed under the following headings: 1) Aims/Objective, 2) Patient Demographic, 3) Educational Focus, 4) Research Type Conducted, 5) Methodologies, 6) Results, and 7) Author Noted Limitations. Of the 3649 manuscripts, only eight remained after the refinement stages. A significant amount of the papers that were excluded focused on CF pediatric patients only. Of the remaining papers, four manuscripts focused solely on CF adults. Seven of the papers identified a range of issues with CF education, including anxiety, knowledge gaps, and a lack of educational teams. Five papers introduced an educational intervention, only one was for CF adults only. Two of the interventions were ICT based. Of the manuscripts, one intervention that targeted both children and adults was reported as being implemented into the hospital services long term. From the final papers reviewed, it is apparent that there appears to be an issue with adult CF education and knowledge gaps. With CF survival rates rising and a new aging CF population emerging, there is a need for educational programs and interventions to meet the changing needs of the CF adult population.

This article, presents a smartphone game app for Android devices where the user must blow into the microphone to control the sprite's movements as opposed to tapping. The game also encompasses a questionnaire and web based data tracking system, that is targeted at adult Cystic Fibrosis patients. App data is stored on an external database and saved under a user's profile. The data is then analysed for the attention of the health care team and depending on specified alert criteria, an alert text message (SMS) is sent to the patient. The complete system was presented to the CF medical multi-disciplinary team for review and feedback. Usability testing on the mobile application and web tool was also conducted with 10 participants who specialise in usability design. It is anticipated, that this framework will have a positive effect to the health care experience of adult CF patients after passing the clinical testing.

The use of smartphones technologies and apps in health has become increasing popular in recent years and as such has led to the development of the mobile health (mHealth) sector. However, mobile health applications (apps) are often rejected in app stores or not utilised by the intended audience. This has led to much discussion about the review processes, certification, and considerations required to develop a mHealth app for successful deployment. In this paper, we describe a general design pipeline to be used for the creation of mHealth apps. The pipeline considers and makes recommendations for the design of the following in a mHealth app: Preparation, Back-End Development, Front-End Development and Deployment.

Despite the growth of e-learning, its methods have yet to be incorporated into all educational modules within the discipline of medicine. As such, its integration into some educational methods for the study of complex diseases may benefit both students and trainees. In particular, the strategies demonstrated in blended, multimedia and web-based interactive platforms may enhance its overall communication. Cystic Fibrosis is a complex genetic disease which affects various parts of the body. These effects prove difficult to communicate through the written form alone and visual media elements are often incorporated to encourage a better understanding. However this foundational understanding of the disease has the potential to be enhanced further through the utilisation of e-learning techniques. In this paper, current content and resources in the field of e-learning for the disease Cystic Fibrosis and other complex lung diseases are compared and interrogated for possible areas of improvement and expansion. It was found that there was a lack of e-learning visualisers and simulators that demonstrated the mucus effects caused by Cystic Fibrosis within the lungs. As such, a Cystic Fibrosis visualiser and simulator was created using both 3D and web technologies and presented to medical students for evaluation. It was found that the visualiser aided in initial primary understanding of the mucus effects on the lungs, however, it was also found that it could not be used for further advanced teaching without improvements. In this way, it was established that the visualiser, in its simplicity, could be used to educate patients and families about Cystic Fibrosis mucus effects on the lungs.