Qualitative study of self-reported experiences of infertile women with polycystic ovary syndrome through on-line discussion forums.

OBJECTIVES: To highlight the self-reported experiences and disease perceptions of infertile women with polycystic ovary syndrome (PCOS). METHODS: A qualitative study using an inductive method was conducted on infertile women with PCOS who shared their self-reported experiences on French-speaking on-line forums. RESULTS: 785 comments by 211 women on 7 forums were analyzed. Women complained of late diagnosis and lack of information regarding PCOS. PCOS and infertility showed negative psychological impact on daily life. This impact appeared to be alleviated by the sharing of knowledge and experience enabled by these forums. CONCLUSION: The self-reported experience of infertile women with PCOS is interesting for health practitioners. The psychological impact of PCOS and perceptions of illness appear to be improved by sharing experiences between women with PCOS, suggesting a beneficial support role of online discussion forums.

Availability of COVID-19 Information from National and International Aesthetic Surgery Society Websites.

BACKGROUND: National and international aesthetic surgery society websites are an important source of information for patients and aesthetic surgeons. The current COVID-19 pandemic represents an unprecedented global health crisis. The aim of this study was to assess the information available on national and international aesthetic surgery society websites on the current pandemic of COVID-19. METHODS: National and international aesthetic surgery society websites were assessed with regard to COVID-19 information. RESULTS: Thirty-one per cent of nations had aesthetic surgery society websites. Twenty-two per cent of national society websites had a specific COVID-19 section. Seventeen per cent of these websites had COVID-19-specific guidelines available; of these websites with guidelines, 77% had a specific COVID-19 section advising to provide only urgent or emergent care and 46% provided their sovereign state's directives to provide only urgent or emergent care. Two international aesthetic surgery society websites had COVID-19-specific guidelines, and one of the two had significant educational resources. CONCLUSION: The availability of COVID-19 clinical guidelines and patient information sheets on national plastic surgery society websites is sparse. In contrast, one international society website carefully analysed national and international recommendations and guidelines and made general recommendations for its members with regularly updated resources. This study suggests that improvement and increase in COVID-19 information provided by many national aesthetic surgery society websites may be improved by links to the ISAPS website. LEVEL OF EVIDENCE IV: This journal requires that authors assign a level of evidence to each article. For a full description of these Evidence-Based Medicine ratings, please refer to the Table of Contents or the online Instructions to Authors www.springer.com/00266.

Human papillomavirus (HPV) vaccination: What can be found on the Web? Qualitative analysis of the Doctissimo.fr forum data.

BACKGROUND: Vaccine hesitancy is a major issue in general practice. Regarding human papillomavirus, less than 20% of young French girls are vaccinated. With widespread availability of health information, the Internet seems to be a place of choice to discuss this reluctance. The main objective of this study was to explore perceptions of human papillomavirus vaccination through an analysis of the Doctissimo.fr forum data. METHODS: Using Nvivo software, a qualitative study was carried out from October 2017 to May 2018 on the Doctissimo.fr discussion forum. Online discussion threads not having any message since 2010 were excluded. All threads were analyzed by two independent evaluators. RESULTS: Faced with the doubt that emanated from the discussions and the confusion about the role of the vaccine, Internet users used multiple references in order to develop a reliable discourse. The general practitioner remained a trusted person. While the vaccine was perceived as risky, the cervical smear was approved and encouraged. Although the vaccine remained a feminine concern, males also entered this debate. Through their shared experiences, Internet users tried to influence others about whether or not to get vaccinated. CONCLUSION: Changing the sexual image of the vaccine could help to establish a collective vaccination policy. Public health policies play an essential role by working with general practitioners and by increasing visibility on the web. The usefulness of the vaccine in 2019 seems to be questioned by Internet users as shown by their major approval of cervical smears. However, these two methods remain complementary in the fight against cervical cancer.

Where Can Patients Obtain Information on the Preapproval Access Pathway to Investigational Treatment in Japan? A Survey of Patient Advocacy Organizations' Websites.

Investigational treatments are those that have been approved for testing in humans but are not yet available as an approved treatment option. For many patients with a terminal illness who have no approved treatment option and are not eligible for a clinical trial, investigational treatments are the last resort. However, not much is known about the dissemination of information by patient advocacy organizations (PAOs). We evaluated the quantity and quality of information on preapproval access to investigational therapies provided by Japanese PAO websites between January 24 and March 29, 2019. A total of 49 PAOs were identified. Of these, 16 (33%) provided no relevant information. The most frequent information provided was the PAO's own clinical trial finder or list of clinical trials (n = 15, 31%); of the 10 cancer-related PAOs, 5 (50%) provided this information. Nine (18%) PAOs had developed patient registries or provided a link to relevant registries. Only 1 PAO (2%) provided a link about the Ministry of Health, Labour, and Welfare trials that described the process and regulations of clinical trials. Our results indicate that PAOs do not disseminate adequate information on preapproval pathways. We suggest that the government involve PAOs in disseminating this information to both patients and physicians.

How Informative are the Plastic Surgery Residency Websites to Prospective Applicants?

OBJECTIVE: To evaluate the comprehensiveness of plastic surgery program websites. DESIGN: American Medical Association interactive database was accessed for the list of integrated plastic surgery programs, in June 2015. Since then, 67 plastic surgery program websites were accessed and searched for the presence or absence of 31 criteria, which were further grouped into 5 categories: First, program contact information; second, training and research; third, program setup; fourth, benefits and facilities; and fifth, information for applicants. Programs were categorized based on US census bureau designated regions, and number of residency positions available. One-way ANOVA test was used for comparison. RESULTS: Only 25% (17) program website had information available on more than two-thirds (21 or more of 31) of the criteria. The 3 least factors commonly available by program websites were: operative log (10%), contract (10%), and information on night float (25%). The 3 most commonly available factors included: coordinator information (92%), number of residents (92%), and comprehensive faculty list (88%). Less than 50% of the programs provided information regarding fellowship opportunities, active and previous research projects, and operative logs. There was no difference in amount of information on program websites when analyzed for program size or program geographic location. CONCLUSION: Programs should consider revising their websites to include aforementioned 31 criteria. This would make applicants and potential resident physicians better informed of the programs before the interview process such that they would be more likely to apply to only those programs that match their specific aspirations.

Towards a HPV Vaccine Knowledgebase for Patient Education Content.

Human papillomavirus is a widespread sexually transmitted infection that can be prevented with vaccination. However, HPV vaccination rates in the United States are disappointingly low. This paper will introduce a patient oriented web ontology intended to provide an interactive way to educate patients about HPV and the HPV vaccine that will to empower patients to make the right vaccination decision. The information gathered for this initial draft of the ontology was primarily taken from the Centers for Disease Control and Prevention's Vaccine Information Statements. The ontology currently consists of 160 triples, 141 classes, 52 properties and 55 individuals. For future iterations, we aim to incorporate more information as well as obtain subject matter expert feedback to improve the overall quality of the ontology.

Assessing the Accuracy and Readability of Online Health Information for Patients With Pancreatic Cancer.

IMPORTANCE: The degree to which patients are empowered by written educational materials depends on the text's readability level and the accuracy of the information provided. The association of a website's affiliation or focus on treatment modality with its readability and accuracy has yet to be thoroughly elucidated. OBJECTIVE: To compare the readability and accuracy of patient-oriented online resources for pancreatic cancer by treatment modality and website affiliation. DESIGN: An online search of 50 websites discussing 5 pancreatic cancer treatment modalities (alternative therapy, chemotherapy, clinical trials, radiation therapy, and surgery) was conducted. The website's affiliation was identified. Readability was measured by 9 standardized tests, and accuracy was assessed by an expert panel. MAIN OUTCOMES AND MEASURES: Nine standardized tests were used to compute the median readability level of each website. The median readability scores were compared among treatment modality and affiliation categories. Accuracy was determined by an expert panel consisting of 2 medical specialists and 2 surgical specialists. The 4 raters independently evaluated all websites belonging to the 5 treatment modalities (a score of 1 indicates that <25% of the information is accurate, a score of 2 indicates that 26%-50% of the information is accurate, a score of 3 indicates that 51%-75% of the information is accurate, a score of 4 indicates that 76%-99% of the information is accurate, and a score of 5 indicates that 100% of the information is accurate). RESULTS: The 50 evaluated websites differed in readability and accuracy based on the focus of the treatment modality and the website's affiliation. Websites discussing surgery (with a median readability level of 13.7 and an interquartile range [IQR] of 11.9-15.6) were easier to read than those discussing radiotherapy (median readability level, 15.2 [IQR, 13.0-17.0]) (P = .003) and clinical trials (median readability level, 15.2 [IQR, 12.8-17.0]) (P = .002). Websites of nonprofit organizations (median readability level, 12.9 [IQR, 11.2-15.0]) were easier to read than media (median readability level, 16.0 [IQR, 13.4-17.0]) (P < .001) and academic (median readability level, 14.8 [IQR, 12.9-17.0]) (P < .001) websites. Privately owned websites (median readability level, 14.0 [IQR, 12.1-16.1]) were easier to read than media websites (P = .001). Among treatment modalities, alternative therapy websites exhibited the lowest accuracy scores (median accuracy score, 2 [IQR, 1-4]) (P < .001). Nonprofit (median accuracy score, 4 [IQR, 4-5]), government (median accuracy score, 5 [IQR, 4-5]), and academic (median accuracy score, 4 [IQR, 3.5-5]) websites were more accurate than privately owned (median accuracy score, 3.5 [IQR, 1.5-4]) and media (median accuracy score, 4 [IQR, 2-4]) websites (P < .004). Websites with higher accuracy were more difficult to read than websites with lower accuracy. CONCLUSIONS AND RELEVANCE: Online information on pancreatic cancer overestimates the reading ability of the overall population and lacks accurate information about alternative therapy. In the absence of quality control on the Internet, physicians should provide guidance to patients in the selection of online resources with readable and accurate information.

MEDXVIEWER: PROVIDING A WEB-ENABLED WORKSTATION ENVIRONMENT FOR COLLABORATIVE AND REMOTE MEDICAL IMAGING VIEWING, PERCEPTION STUDIES AND READER TRAINING.

MedXViewer (Medical eXtensible Viewer) has been developed to address the need for workstation-independent, picture archiving and communication system (PACS)-less viewing and interaction with anonymised medical images. The aim of this paper is to describe the design and features of MedXViewer as well as to introduce the new features available in the latest release (version 1.2). MedXViewer currently supports digital mammography and tomosynthesis. The flexible software design used to develop MedXViewer allows it to be easily extended to support other imaging modalities. Regions of interest can be drawn by a user, and any associated information about a mark, an image or a study can be added. The questions and settings can be easily configured depending on the need of the research allowing both ROC and FROC studies to be performed. Complex tree-like questions can be asked where a given answer presents the user to new questions. The hanging protocol can be specified for each study. Panning, windowing, zooming and moving through slices are all available while modality-specific features can be easily enabled, e.g. quadrant zooming in digital mammography and tomosynthesis studies. MedXViewer can integrate with a web-based image database OPTIMAM Medical Image Database allowing results and images to be stored centrally. The software can, alternatively, run without a network connection where the images and results can be encrypted and stored locally on a machine or external drive. MedXViewer has been used for running remote paper-less observer studies and is capable of providing a training infrastructure and coordinating remote collaborative viewing sessions.

Implementing a Real-Time Electronic Data Capture System to Improve Clinical Documentation in Radiation Oncology.

PURPOSE: Electronic health records (EHRs) often store information as unstructured text, whereas electronic data capture (EDC) using structured fields is common in clinical trials. We implemented a web-based EDC system for routine clinical care, and describe our experience piloting this system for breast cancer patients receiving radiation therapy. METHODS: Our institution uses dictation for clinical documentation in a centralized EHR; a separate radiation therapy-specific record-and-verify system contains prescriptions, schedules, and treatment documentation. The implemented EDC system collects patient, tumor, and treatment characteristics using structured data fields and merges it with data from the radiation therapy system to generate template-based notes in the EHR. Mean times to create notes using dictation versus EDC were compared. Users were surveyed about their experience. Acute toxicities were captured using the EDC system, and reported. RESULTS: The EDC system has been used by 25 providers for 1,296 patients. In the most recent month, 978 clinical notes were generated. The average clinician documentation time over a typical course of radiation was reduced from 22.4 minutes per patient with dictation, to 7.1 minutes with EDC. The user survey response rate was 100%, with 92% of respondents being either satisfied or very satisfied with their experience. The worst acute toxicities were mostly grade 1 (51%) or grade 2 (43%), with rare grade 3 (3%) events. CONCLUSIONS: We implemented an EDC system for routine clinical use in the breast radiation therapy service that resulted in significant time-savings for clinical documentation and prospective population of a database to facilitate outcomes reporting.

Insuficiência renal crônica em crianças - Informação disponível na internet: estudo para uma abordagem digital para o cuidado em saúde a pais e crianças / Chronic renal failure in children - information available on the Internet: study for a digital approach to health care to parents and children

A utilização da Internet pode trazer benefícios ao cuidado em saúde quando utilizada como fonte de informação em saúde geral e bucal e suporte social promovendo o empoderamento dos indivíduos, o que pode ser especialmente importante e benéfico para pais de crianças com doença renal crônica. A DRC inclui todas as condições que são capazes de provocar a perda progressiva da função renal podendo levar à diálise e, como última consequência à necessidade de transplante. Em crianças, a doença é devastadora e apresenta taxas de mortalidade elevadas, sobretudo em pacientes pediátricos em diálise, quando comparadas à de crianças normais. Por sua vez, esses pacientes apresentam diversas manifestações bucais que podem agravar sua saúde já comprometida. A complexidade dessas patologias e a necessidade de cuidados contínuos e intensivos demandam habilidades de pais, que raramente têm experiência e conhecimento prévios para o cuidado. A Internet pode não ser uma fonte primária no auxílio para a tomada de decisão em saúde, mas inúmeras pesquisas têm mostrado que ela se tornou uma fonte de informação em saúde importante para pais de crianças acometidas com alguma doença, a fim de complementar, mas não substituir, as informações fornecidas por médicos e profissionais de saúde, além de dirimir dúvidas e trocar experiências com pessoas

em circunstâncias semelhantes. Assim, diante da gravidade da DRC e das inúmeras manifestações bucais, nós investigamos em um estudo transversal, a utilização da Internet para a busca de informações em saúde por pais de crianças acometidas. O estudo compreendeu 111 pais e cuidadores de crianças com doença renal crônica sob tratamento, em um centro de nefrologia pediátrica brasileiro. Os resultados obtidos, por meio de um formulário, demonstraram que dos pais que buscavam informações de saúde na Internet, 90% (80/89) buscavam por informações sobre o problema de saúde dos seus filhos. Por outro lado, somente 20% (18/89) disseram procurar por informações sobre saúde bucal. A maioria dos pais que buscavam informação sobre a doença usam a Internet diariamente (66%)(53/80). Eles buscaram sobretudo obter mais informações sobre a doença (94%). Além disso, 93% consideraram útil a informação encontrada, sendo que 78% alegaram que entenderam melhor o problema. No entanto, mais da metade (52%) preferiram não comentar com o médico. O estudo traça um perfil de pais e cuidadores de crianças com DRC quanto ao uso da Internet como fonte de informação em saúde. Podemos concluir que há bastante interesse por informações sobre o problema de saúde da criança, mas pouco interesse por informações de saúde bucal. Os resultados obtidos serão úteis para posterior elaboração de conteúdos educacionais e informativos que utilizem a tecnologia de informação e comunicação para o cuidado e educação em saúde e o empoderamento de pais e pacientes com doença renal crônica.

The use of Internet can bring benefits to health care when used as a source of information for oral, general health and also as a social support to promote individual´s empowerment. This fact can be very important for parents of children with chronic kidney disease (CKD). CKD includes all conditions that lead to progressive loss of renal function, placing the individual in a dialysis condition and as a last consequence leading him/her to renal transplant. In children, the disease may cause several impairments, presenting high mortality rates compared to healthy children, mainly for individuals who are undergoing dialysis. These patients display several oral manifestations that can affect their systemic conditions in a more severe aspect. The severity of these pathologies and the needs for continuous care demand skills and abilities that are rarely previously delivered to parents/caretakers. The Internet may not be the primary health information source, though several studies have shown that Internet has become an important source of health information for impaired children and their parents.

This information can supplement, but not replace the ones supplied by physicians and other health professionals. Though, by means of this tool, people can also sort out their doubts and exchange information with others who are in similar contexts. Hence, the aim of this cross-sectional study was to investigate how the Internet has been used by parents of CKD children, to look for health information. The results were obtained by means of a filled form, and showed that 90% (80/89) of parents/caretakers who use Internet looked for health information about their children´s health problems. On the other hand, only 20% (18/89) of parents/caretakers had looked for information about oral health. More than half (66%)(53/80) of these parents/caretakers use the Internet daily. The most common reason (94%) for using the Internet was to find more information about of the child's condition. Ninety-three percent found the Internet useful. Seventy-eight percent found that the Internet provided further understanding into their child's condition. However, more than half (52%) prefers not to talk to the physician. Based on that, this study aimed to design the profile of parents/caretakers of children with CKD, concerning the use of Internet as a source of health information. It could be concluded that there is a large interest about children´s health problems general, but not too much about oral health information. The results obtained may support to the development of further educational and informative contents that use information and communication technology to support parents/caretakers of CKD children.

Development and promotion of a national website to improve dissemination of information related to the prevention of mother-to-child HIV transmission (PMTCT) in Tanzania.

BACKGROUND: Websites that address national public health issues provide an important mechanism to improve health education and services in resource limited countries. This article describes the development, promotion and initial evaluation of a national website to increase access to information and resources about prevention of mother-to-child transmission of HIV (PMTCT) among healthcare workers and PMTCT stakeholders in Tanzania. METHODS: A participatory approach, involving the Tanzania Ministry of Health and Social Welfare (MOHSW) and key PMTCT stakeholders, was used to develop and manage the online PMTCT National Resource Center (NRC), http://pmtct.or.tz/ . The website was created with a content management system software system that does not require advanced computer skills and facilitates content updates and site management. The PMTCT NRC hosts related regularly updated PMTCT-related news, resources and publications. Website implementation, access and performance were evaluated over two years using Google Analytics data about visits, page views, downloads, bounce rates and location of visitors, supplemented by anecdotal feedback. RESULTS: Following its launch in July 2013, the PMTCT NRC website received a total of 28,400 visits, with 66,463 page views, over 2 years; 30 % of visits were from returning visitors. During year 1, visits increased by 80 % from the first to second 6 month period and then declined slightly (9-11 %) but remained stable in Year 2. Monthly visits spiked by about 70 % during October 2013 and January 2014 in response to the release and promotion of revised national PMTCT guidelines and training manuals. The majority of visitors came from primarily urban areas in Tanzania (50 %) and from other African countries (16 %). By year 2, over one-third of visitors used mobile devices to access the site. CONCLUSIONS: The successfully implemented PMTCT NRC website provides centralized, easily accessed information designed to address the needs of clinicians, educators and program partners in Tanzania. Ongoing involvement of the MOHSW and key stakeholders are essential ensure the website's growth, effectiveness and sustainability. Additional efforts are needed to expand use of the PMTCT NRC throughout the country. Future evaluations should examine the role of the website in supporting implementation of national PMTCT guidelines and services in Tanzania.

On the Development of a Hospital-Patient Web-Based Communication Tool: A Case Study From Norway.

Surgery cancellations are undesirable in hospital settings as they increase costs, reduce productivity and efficiency, and directly affect the patient. The problem of elective surgery cancellations in a North Norwegian University Hospital is addressed. Based on a three-step methodology conducted at the hospital, the preoperative planning process was modeled taking into consideration the narratives from different health professions. From the analysis of the generated process models, it is concluded that in order to develop a useful patient centered web-based communication tool, it is necessary to fully understand how hospitals plan and organize surgeries today. Moreover, process reengineering is required to generate a standard process that can serve as a tool for health ICT designers to define the requirements for a robust and useful system.

TCGA4U: A Web-Based Genomic Analysis Platform To Explore And Mine TCGA Genomic Data For Translational Research.

Large-scale human cancer genomics projects, such as TCGA, generated large genomics data for further study. Exploring and mining these data to obtain meaningful analysis results can help researchers find potential genomics alterations that intervene the development and metastasis of tumors. We developed a web-based gene analysis platform, named TCGA4U, which used statistics methods and models to help translational investigators explore, mine and visualize human cancer genomic characteristic information from the TCGA datasets. Furthermore, through Gene Ontology (GO) annotation and clinical data integration, the genomic data were transformed into biological process, molecular function, cellular component and survival curves to help researchers identify potential driver genes. Clinical researchers without expertise in data analysis will benefit from such a user-friendly genomic analysis platform.

OntoMama: An Ontology Applied to Breast Cancer.

This article describes the process of building an ontology to assist medical students and professionals specialized in Oncology. The ontology allows the user to obtain knowledge more quickly and thus assist professionals in their decision-making.

The HealthierU Portal for Supporting Behaviour Change and Diet Programs.

The use of online technologies for supporting participants of behaviour change and diet program is a timely and important research direction. We present HealthierU, adaptive online portal offering a suite of interactive support tools. The portal was evaluated in a 24-week study, which shows that regular reminders trigger increased interaction with the portal. We also analyse interaction patters conducive to weight loss and discuss possible factors of the attrition rates observed in the study.

[Development and Process Evaluation of the e-Mental Health Portal www.psychenet.de for the Hamburg Network for Mental Health]. / Entwicklung und Evaluation des Webportals www.psychenet.de für das Hamburger Netz psychische Gesundheit.

OBJECTIVE: The purpose of this project was to develop a user-centered web-portal for empowerment in mental disorders. METHODS: The development of the portal included mixed-methods techniques for needs assessment to identify user-relevant content. Exposure and use of the portal was investigated as part of a process evaluation. RESULTS: psychenet.de informs about mental disorders and treatment option. Results of the process evaluation showed a highly accessed website, the portal was assessed as "good" or "very good" by 73 % of the respondents. DISCUSSION: Using psychenet.de attempts to raise awareness, to inform about mental disorders, and to engage patients in the course of their treatment.

[psychenet - The Hamburg Network for Mental Health]. / psychenet - das Hamburger Netz psychische Gesundheit.

With the research and development project psychenet: the Hamburg Network for Mental Health (2011 - 2015), the Federal Ministry of Education and Research contributes to strengthening healthcare regions in Germany by establishing new transsectoral cooperations and implementing evaluated innovations. More than 300 partners from research, health care, health industry and government in the Free and Hanseatic City of Hamburg are promoting innovative measures to improve the detection, diagnosis, and treatment for mental disorders. The main objective is to implement integrated healthcare networks based on evidence for effective treatment methods, deriving from high-quality research throughout five indications such as psychosis, depression, somatoform and functional syndromes, anorexia and bulimia and addiction illnesses in adolescence. Those networks are accompanied by additional measures, for example, for improving awareness, information and education for mental health, addressing occupational health or strengthening the participation of patients and their families suffering from mental illness.

[psychenet - The Hamburg Network for Mental Health: Evaluation of the Health Network Depression from the Perspective of Participating General Practitioners, Psychotherapists and Psychiatrists]. / psychenet - Hamburger Netz psychische Gesundheit: Evaluation des Gesundheitsnetzes Depression aus Sicht der teilnehmenden Hausärzte, Psychotherapeuten und Psychiater.

OBJECTIVE: Evaluation of satisfaction and acceptance of a stepped care model in the Health Network Depression from the perspective of general practitioners, psychotherapists and psychiatrists. METHODS: Cross-sectional questionnaire study with n = 61 care providers. RESULTS: All elements of the stepped care model, e. g. screening, diagnostic, and monitoring checklists, guidelines, low-intensity treatment options and IT-tools were utilized by over 75 % of partners and obtained largely positive ratings. CONCLUSION: This positive evaluation provides a basis for further participative development and transfer into health care.

[Improving Health Care for Patients with Somatoform and Functional Disorders: A Collaborative Stepped Care Network (Sofu-Net)]. / Verbesserte Versorgung von Patienten mit somatoformen und funktionellen Störungen: Ein koordiniertes gestuftes Netzwerk (Sofu-Net).

The management of somatoform disorders in primary care is often limited due to low diagnostic accuracy, delayed referral to psychotherapy and overuse of health care. To address these difficulties, this study aimed to establish a collaborative stepped health care network (Sofu-Net). Sofu-Net was established among 41 primary care physicians, 35 psychotherapists and 8 mental health clinics. Baseline assessment in primary care showed elevated psychopathology and deficits in health care among patients with somatoform symptoms. Network partners provided positive evaluations of Sofu-Net.