Rare liver disease patients’ and healthcare providers’ view on mobile app requirements and functionality: a single center survey for the European Reference Network on Hepatological diseases (ERN RARE-LIVER‬)‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬

Abstract Background The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) was launched in 2017 and involves, to date, 35 highly specialised multidisciplinary expert centres (from the 30 full Healthcare Provider members) coming from 11 countries and more than 70 patient organizations from 16 countries. The eHealth Working Group (WG) of VASCERN was set up to develop practical, patient-centred solutions and strategies for effective use of eHealth tools to answer the needs of patients with multisystemic vascular rare diseases. The eHealth WG Following the identified patients’ needs and following the guiding principles of collaboration and patient-centredness, the eHealth WG was created with the following aims: to develop a mobile app to help patients find expert centres and patient organizations, and to develop resources (Pills of Knowledge, PoK) for training and education via digital platforms (eLearning). The mobile app includes, to date, functionalities that allow users to find expert centres and patient organizations across Europe in the area of rare multisystemic vascular diseases. Discussed app developments include personalized digital patient passports, educational material, emergency management guidelines and remote consultations. Regarding training and education, a variety of PoK have been developed. The PoK cover several topics, target several user groups, and are delivered in various formats so that they are easy-to-use, easy-to-understand, informative, and viable for delivery and sharing through digital platforms (eLearning) including, e.g., the VASCERN YouTube™ channel. Conclusion Overall, the work carried out by the eHealth WG of VASCERN can be seen as a pilot experience that may serve as a basis to for collaborative development of patient-centred eHealth tools that answer the needs of patients with various rare diseases, not limited to rare multisystemic vascular diseases. By expanding the multidisciplinary approach here described, clinical and research networks can take advantage of eHealth services and use them as strategic assets in achieving the ultimate goal of ensuring equity of access to prevention programs, timely and accurate diagnosis and specialized care for patients with rare diseases throughout Europe.

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The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-020-01619-x ◽

2020 ◽

Vol 15 (1) ◽

Author(s):

C. Lampe ◽

◽

C. Dionisi-Vici ◽

C. M. Bellettato ◽

L. Paneghetti ◽

...

Keyword(s):

Metabolic Diseases ◽

Healthcare Providers ◽

Relevant Information ◽

European Population ◽

Reference Network ◽

Long Term Effects ◽

European Reference Network ◽

Hereditary Metabolic Diseases ◽

Hospital To Home ◽

The Impact

AbstractThe ongoing coronavirus disease 2019 (COVID-19) pandemic has caused disruption in all aspects of daily life, including the management and treatment of rare inherited metabolic disorders (IMDs). To perform a preliminary assessment of the incidence of COVID-19 in IMD patients and the impact of the coronavirus emergency on the rare metabolic community between March and April 2020, the European Reference Network for Hereditary Metabolic Diseases (MetabERN) has performed two surveys: one directed to patients’ organizations (PO) and one directed to healthcare providers (HCPs). The COVID-19 incidence in the population of rare metabolic patients was lower than that of the general European population (72.9 × 100,000 vs. 117 × 100,000). However, patients experienced extensive disruption of care, with the majority of appointments and treatments cancelled, reduced, or postponed. Almost all HCPs (90%) were able to substitute face-to-face visits with telemedicine, about half of patients facing treatment changes switched from hospital to home therapy, and a quarter reported difficulties in getting their medicines. During the first weeks of emergency, when patients and families lacked relevant information, most HCPs contacted their patients to provide them with support and information. Since IMD patients require constant follow-up and treatment adjustments to control their disease and avoid degradation of their condition, the results of our surveys are relevant for national health systems in order to ensure appropriate care for IMD patients. They highlight strong links in an interconnected community of HCPs and PO, who are able to work quickly and effectively together to support and protect fragile persons during crisis. However, additional studies are needed to better appreciate the actual impact of COVID-19 on IMD patients’ health and the mid- and long-term effects of the pandemic on their wellbeing.

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Challenges in Transition From Childhood to Adulthood Care in Rare Metabolic Diseases: Results From the First Multi-Center European Survey

Frontiers in Medicine ◽

10.3389/fmed.2021.652358 ◽

2021 ◽

Vol 8 ◽

Author(s):

Karolina M. Stepien ◽

Beata Kieć-Wilk ◽

Christina Lampe ◽

Trine Tangeraas ◽

Graziella Cefalo ◽

...

Keyword(s):

Metabolic Diseases ◽

Healthcare Providers ◽

Transition Process ◽

Pediatric Care ◽

Reference Network ◽

Emergency Plan ◽

Process Data ◽

Successful Transition ◽

European Reference Network ◽

Key Aspects

Inherited Metabolic Diseases (IMDs) are rare diseases caused by genetic defects in biochemical pathways. Earlier diagnosis and advances in treatment have improved the life expectancy of IMD patients over the last decades, with the majority of patients now surviving beyond the age of 20. This has created a new challenge: as they grow up, the care of IMD patients' needs to be transferred from metabolic pediatricians to metabolic physicians specialized in treating adults, through a process called “transition.” The purpose of this study was to assess how this transition is managed in Europe: a survey was sent to all 77 centers of the European Reference Network for Hereditary Metabolic Disorders (MetabERN) to collect information and to identify unmet needs regarding the transition process. Data was collected from 63/77 (81%) healthcare providers (HCPs) from 20 EU countries. Responders were mostly metabolic pediatricians; of these, only ~40% have received appropriate training in health issues of adolescent metabolic patients. In most centers (~67%) there is no designated transition coordinator. About 50% of centers provide a written individualized transition protocol, which is standardized in just ~20% of cases. In 77% of centers, pediatricians share a medical summary, transition letter and emergency plan with the adult team and the patient. According to our responders, 11% of patients remain under pediatric care throughout their life. The main challenges identified by HCPs in managing transition are lack of time and shortage of adult metabolic physician positions, while the implementations that are most required for a successful transition include: medical staff dedicated to transition, a transition coordinator, and specific metabolic training for adult physicians. Our study shows that the transition process of IMD patients in Europe is far from standardized and in most cases is inadequate or non-existent. A transition coordinator to facilitate collaboration between the pediatric and adult healthcare teams should be central to any transition program. Standardized operating procedures, together with adequate financial resources and specific training for adult physicians focused on IMDs are the key aspects that must be improved in the rare metabolic field to establish successful transition processes in Europe.

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Liver transplantation for patients with hepatitis B-related liver disease: a single center experience

Zeitschrift für Gastroenterologie ◽

10.1055/s-2005-869624 ◽

2005 ◽

Vol 43 (05) ◽

Author(s):

L Hinterhuber ◽

IW Graziadei ◽

R Margreiter ◽

H Bonatti ◽

W Vogel

Keyword(s):

Liver Transplantation ◽

Liver Disease ◽

Hepatitis B ◽

Single Center ◽

Single Center Experience ◽

Related Liver Disease

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Educational aspects of rare and orphan lung diseases

Respiratory Research ◽

10.1186/s12931-021-01676-1 ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Tiago M. Alfaro ◽

Marlies S. Wijsenbeek ◽

Pippa Powell ◽

Daiana Stolz ◽

John R. Hurst ◽

...

Keyword(s):

Lung Diseases ◽

Healthcare Professionals ◽

Treatment Options ◽

Delayed Diagnosis ◽

Reference Network ◽

Delay In Diagnosis ◽

Positive Effects ◽

European Reference Network ◽

Patient Representatives ◽

Rare Lung Diseases

AbstractPeople with rare lung diseases often suffer the burden of delayed diagnosis, limited treatment options, and difficulties in finding expert physicians. One of the reasons for the delay in diagnosis is the limited training for healthcare practitioners on rare diseases. This review explores the main concerns and needs for education on rare lung diseases from the perspectives of both patients and professionals. Despite the increasing interest in rare lung disorders and some recent breakthrough developments on the management of several diseases, healthcare professionals, including general practitioners and hospital workers, receive little education on this topic. Nonetheless, many healthcare professionals show much interest in receiving further training, especially on diagnosis. Patients and families want easier access to high-quality education materials to help them manage their own disease. Well-educated patients are better equipped to deal with chronic diseases, but patient education can be challenging as patients’ individual health issues, and diverse backgrounds can create significant barriers. Raising more awareness for rare lung diseases and further development of patient-centred international expert networks like the European Reference Network on Rare Lung Diseases (ERN-LUNG), which includes both experts and patient representatives, are essential for improving care and education on rare lung diseases. Initiatives such as the Rare Disease Day, have been successful in increasing awareness for rare conditions. The development of online tools for accessing information has had positive effects and should be further supported and extended in the future.

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A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies

Epilepsia Open ◽

10.1002/epi4.12459 ◽

2020 ◽

Author(s):

Tobias Baumgartner ◽

Mar Carreño ◽

Rodrigo Rocamora ◽

Francesca Bisulli ◽

Antonella Boni ◽

...

Keyword(s):

Clinical Practice ◽

Reference Network ◽

European Reference Network

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Perioperative and oncologic outcomes of right anterior sectionectomy for liver disease: A single‐center experience with 415 patients

ANZ Journal of Surgery ◽

10.1111/ans.17098 ◽

2021 ◽

Author(s):

Jaewoo Kwon ◽

Jae Hoon Lee ◽

Seo Young Park ◽

Woohyung Lee ◽

Ki Byung Song ◽

...

Keyword(s):

Liver Disease ◽

Oncologic Outcomes ◽

Single Center ◽

Single Center Experience

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Initiating Collaboration among Organ Transplant Professionals through Web Portals and Mobile Applications

OJIN: The Online Journal of Issues in Nursing ◽

10.3912/ojin.vol18no02ppt03 ◽

2013 ◽

Vol 18 (2) ◽

Author(s):

Susan Alexander ◽

Haley Hoy ◽

Manil Maskey ◽

Helen Conover ◽

John Gamble ◽

...

Keyword(s):

Mobile Applications ◽

Healthcare Providers ◽

Organ Transplant ◽

Pilot Project ◽

Mobile App ◽

Lessons Learned ◽

Ease Of Use ◽

Future Directions ◽

Efficient Access ◽

Health Related

The knowledge base for healthcare providers working in the field of organ transplantation has grown exponentially. However, the field has no centralized ‘space’ dedicated to efficient access and sharing of information.The ease of use and portability of mobile applications (apps) make them ideal for subspecialists working in complex healthcare environments. In this article, the authors review the literature related to healthcare technology; describe the development of health-related technology; present their mobile app pilot project assessing the effects of a collaborative, mobile app based on a freely available content manage framework; and report their findings. They conclude by sharing both lessons learned while completing this project and future directions.

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