Studies have found that people with Multiple Sclerosis experience relatively high rates of anxiety and depression. Although methodologically robust, many of these studies had access to only modest sample sizes (N<200). The aims of this study were to use responses gained via the web portal of the UK MS Register (N>4000) to: describe the depression and anxiety profiles of people with MS; to determine if anxiety and depression are related to age or disease duration; and to assess whether the levels of anxiety and depression differ between genders and types of MS.
From its launch in May 2011 to the end of December 2011, 7786 adults with MS enrolled to take part in the UK MS Register via the web portal. The responses to the Hospital Anxiety and Depression Scale (HADS) were collated with basic demographic and descriptive MS data provided at registration and the resulting dataset was analysed in SPSS (v.16).
The mean HADS score among the 4178 respondents was 15.7 (SE 0.117, SD 7.55) with a median of 15.0 (IQR 11). Anxiety and depression rates were notably high, with over half (54.1%) scoring ≥8 for anxiety and 46.9% scoring ≥8 for depression. Women with relapsing-remitting MS were more anxious than men with this type (p<0.001), and than women with other types of MS (p = 0.017). Within each gender, men and women with secondary progressive MS were more depressed than men or women with other types of MS (p<0.001, p<0.001).
This largest known study of its kind has shown that anxiety and depression are highly prevalent in people with MS, indicating that their mental health needs could be better addressed. These findings support service planning and further research to provide the best care for people with MS to help alleviate these debilitating conditions.
The EQ-5D is a widely-used, standardised, quality of life measure producing health profiles, indices and states. The aims of this study were to assess the role of various factors in how people with Multiple Sclerosis rate their quality of life, based on responses to the EQ-5D received via the web portal of the UK MS Register.
The 4516 responses to the EQ-5D (between May 2011 and April 2012) were collated with basic demographic and descriptive MS data and the resulting dataset was analysed in SPSS (v.20).
The mean health state for people with MS was 59.73 (SD 22.4, median 61), compared to the UK population mean of 82.48 (which is approximately 1SD above the cohort mean). The characteristics of respondents with high health states (at or above +1SD) were: better health profiles (most predictive dimension: Usual Activities), higher health indices, younger age, shorter durations of MS, female gender, relapsing-remitting MS, higher educational attainment and being in paid employment (all p-values<0.001). Conversely, the characteristics of respondents with low health states (at or below -1SD) were: poorer health profiles (most predictive dimension: Mobility), lower health indices, older age, longer durations of MS, male gender, progressive MS, lower educational attainment and having an employment status of sick/disabled (p = 0.0014 for age, all other p-values<0.001). Particular living arrangements were not associated with either the high or low health status groups.
This large-scale study has enabled in-depth analyses on how people with MS rate their quality of life, and it provides new knowledge on the various factors that contribute to their self-assessed health status. These findings demonstrate the impact of MS on quality of life, and they can be used to inform care provision and further research, to work towards enhancing the quality of life of people with MS.
Plants are important as foods, pharmaceuticals, biorenewable chemicals, fuel resources, bioremediation tools and general tools for recombinant technology. The study of plant biological pathways is advanced by easy access to integrated data sources. Today, various plant data sources are scattered throughout the web, making it increasingly complicated to build comprehensive datasets.
MetNet Online is a web-based portal that provides access to a regulatory and metabolic plant pathway database. The database and portal integrate Arabidopsis, soybean (Glycine max) and grapevine (Vitis vinifera) data. Pathways are enriched with known or predicted information on sub cellular location. MetNet Online enables pathways, interactions and entities to be browsed or searched by multiple categories such as sub cellular compartment, pathway ontology, and GO term. In addition to this, the “My MetNet” feature allows registered users to bookmark content and track, import and export customized lists of entities. Users can also construct custom networks using existing pathways and/or interactions as building blocks.
The site can be reached at
http://www.metnetonline.org. Extensive video tutorials on how to use the site are available through
In April 2010, with an endorsement from the Ministry of Health of the People's Republic of China, the Chinese Society of Nephrology launched the first nationwide, web-based prospective renal data registration platform, the Chinese Renal Data System (CNRDS), to collect structured demographic, clinical, and laboratory data for dialysis cases, as well as to establish a kidney disease database for researchers and policy makers.
The CNRDS program uses information technology to facilitate healthcare professionals to create a blood purification registry and to deliver an evidence-based care and education protocol tailored to chronic kidney disease, as well as online forum for communication between nephrologists. The online portal https://www.cnrds.net is implemented as a Java web application using an Apache Tomcat web server and a MySQL database. All data are stored in a central databank to establish a Chinese renal database for research and publication purposes.
Currently, over 270,000 clinical cases, including general patient information, diagnostics, therapies, medications, and laboratory tests, have been registered in CNRDS by 3,669 healthcare institutions qualified for hemodialysis therapy. At the 2011 annual blood purification forum of the Chinese Society of Nephrology, the CNRDS 2010 annual report was reviewed and accepted by the society members and government representatives.
CNRDS is the first national, web-based application for collecting and managing electronic medical records of patients with dialysis in China. It provides both an easily accessible platform for nephrologists to store and organize their patient data and acts as a communication platform among participating doctors. Moreover, it is the largest database for treatment and patient care of end-stage renal disease (ESRD) patients in China, which will be beneficial for scientific research and epidemiological investigations aimed at improving the quality of life of such patients. Furthermore, it is a model nationwide disease registry, which could potentially be used for other diseases.
The MSIS-29 was developed to assess the physical and psychological impact of MS. The aims of this study were to use the responses to the MSIS-29 via the web portal of the UK MS Register to: examine the internal properties of the scale delivered via the internet, profile the cohort, and assess how well the scale measures impact of disability on the potential workforce.
Between May 2011 and April 2012, 4558 people with MS completed the MSIS-29(v.1). The responses were collated with basic demographic and descriptive MS data and the resulting dataset was analysed in SPSS(v.20).
Internal consistency was high (Cronbach's alpha 0.97 MSIS-29-PHYS, 0.92 MSIS-29-PSYCH). The mean MSIS-29-PHYS score was 60.5 (50.6%) with a median of 62 and the mean MSIS-29-PSYCH score was 24.8 (43.8%) with a median of 24. Physical scores increased with age and disease duration (p<0.001, p<0.001), but there was a weak negative relationship between psychological scores and age (p<0.001). The odds of people having an employment status of sick/disabled were 7.2 (CI 5.5, 9.4, p<0.001) for people with a moderate physical score, and 22.3 (CI 17.0, 29.3, p<0.001) for people with a high physical score (relative to having a low physical score).
This largest known study of its kind has demonstrated how the MSIS-29 can be administered via the internet to characterise a cohort, and to predict the likely impact of disability on taking an active part in the workforce, as a reasonable proxy for the effects of MS on general activities. The findings examining MSIS-29-PHYS and MSIS-29-PSYCH scores against age support the use of two sub-scales, not a combined score. These results underline the importance of using a scale such as this to monitor disability levels regularly in guiding MS care to enable people to be as active as possible.
Disabled and elderly populations are the fastest growing segment of Internet
usage. However, these people face an “Inverse Information
law”- access to appropriate information is particularly difficult
to those who need it the most. Our tertiary care Multiple Sclerosis (MS) center
received funding to develop a MS specific patient portal
linked to web messaging system so as to empower patients to become
more active participants in their health care. In order to design an effective
portal, we conducted a qualitative study using focus groups and
direct observation techniques. The study explores the perceptions, expectations
and interactions of MS patients with the portal and underscores
the many challenges MS patients face in getting quality health
information on the Internet. Many of the patient barriers were due to
inappropriate font sizes, low contrast, cluttering of web page and use
of dynamic and flashing objects. Some of these issues are not addressed
by Section 508 accessibility guidelines. We believe that any future
patient portal or health information web site needs to address these
issues and educate the patients about accessibility options to enhance
utilization and user satisfaction.
In this paper, we present the design and implementation of a novel web portal for the cancer phase I clinical trial design method Escalation with Overdose Control (EWOC). The web portal has two major components: a web-based dose finding calculator; and a standalone and downloadable dose finding software which can be installed on Windows operating systems. The web-based dose finding calculator uses industry standards and is a database-driven and distributed computing platform for designing and conducting dose finding in cancer phase I clinical trials utilizing EWOC methodology. The web portal is developed using open source software: PHP, JQuery, R and OpenBUGS. It supports any standard browsers with internet connection. The web portal can be accessed at: http://biostatistics.csmc.edu.
EWOC; Bayesian method; cancer phase I clinical trial; maximum tolerated dose; open source.
The Joint Asia Diabetes Evaluation (JADE) Program is a web-based program incorporating a comprehensive risk engine, care protocols, and clinical decision support to improve ambulatory diabetes care.
The JADE Program uses information technology to facilitate healthcare professionals to create a diabetes registry and to deliver an evidence-based care and education protocol tailored to patients' risk profiles. With written informed consent from participating patients and care providers, all data are anonymized and stored in a databank to establish an Asian Diabetes Database for research and publication purpose.
The JADE electronic portal (e-portal: http://www.jade-adf.org) is implemented as a Java application using the Apache web server, the mySQL database and the Cocoon framework. The JADE e-portal comprises a risk engine which predicts 5-year probability of major clinical events based on parameters collected during an annual comprehensive assessment. Based on this risk stratification, the JADE e-portal recommends a care protocol tailored to these risk levels with decision support triggered by various risk factors. Apart from establishing a registry for quality assurance and data tracking, the JADE e-portal also displays trends of risk factor control at each visit to promote doctor-patient dialogues and to empower both parties to make informed decisions.
The JADE Program is a prototype using information technology to facilitate implementation of a comprehensive care model, as recommended by the International Diabetes Federation. It also enables health care teams to record, manage, track and analyze the clinical course and outcomes of people with diabetes.
The MEDICOM (Medical Products Electronic Commerce) Portal provides the electronic means for medical-equipment manufacturers to communicate online with their customers while supporting the Purchasing Process and Post Market Surveillance. The Portal offers a powerful Internet-based search tool for finding medical products and manufacturers. Its main advantage is the fast, reliable and up-to-date retrieval of information while eliminating all unrelated content that a general-purpose search engine would retrieve. The Universal Medical Device Nomenclature System (UMDNS) registers all products. The Portal accepts end-user requests and generates a list of results containing text descriptions of devices, UMDNS attribute values, and links to manufacturer Web pages and online catalogues for access to more-detailed information. Device short descriptions are provided by the corresponding manufacturer. The Portal offers technical support for integration of the manufacturers' Web sites with itself. The network of the Portal and the connected manufacturers' sites is called the MEDICOM system.
To establish an environment hosting all the interactions of consumers (health care organizations and professionals) and providers (manufacturers, distributors, and resellers of medical devices).
A representative group of users evaluated the system. The aim of the evaluation was validation of the usability of all of MEDICOM's functionality. The evaluation procedure was based on ISO/IEC 9126 Information technology - Software product evaluation - Quality characteristics and guidelines for their use.
The overall user evaluation of the MEDICOM system was very positive. The MEDICOM system was characterized as an innovative concept that brings significant added value to medical-equipment commerce.
The eventual benefits of the MEDICOM system are (a) establishment of a worldwide-accessible marketplace between manufacturers and health care professionals that provides up-to-date and high-quality product information in an easy and friendly way and (b) enhancement of the efficiency of marketing procedures and after-sales support.
Electronic commerce, medical devices, equipment and supplies, Internet, CORBA, XML, RDBMS
OBJECTIVES—To determine the prevalence of multiple
sclerosis in the Leeds Health District.
METHODS—Multiple sources of case ascertainment
were used—namely, neurology departments, hospital episode statistics,
general practitioners, the Leeds branch of the Multiple Sclerosis
Society, the West Yorkshire Multiple Sclerosis Therapy Centre,
community physiotherapists and occupational therapists, the Leeds
Wheelchair Centre, and the Young Disabled Unit. Data collection was
from retrospective analysis of hospital and primary care case records.
A population based incidence register was established by prospectively
registering all new patients with diagnoses of multiple sclerosis.
RESULTS—On prevalence day, 30 April 1996, 712 people with multiple sclerosis were identified living in Leeds
(population 732 061), giving a prevalence of 97/105. The
prevalence for definite and probable multiple sclerosis was
84/105, and for suspected multiple sclerosis it was
13/105. The sex ratio of prevalent people with multiple
sclerosis was 2.79 to 1 women to men. The mean age of prevalent cases
was 51years, the mean age at symptom onset was 34 years, and the mean duration of disease was 16 years. Forty cases were prospectively reported as incident cases from 1 November 1995 to 1 February 1996.
CONCLUSIONS—The prevalence of multiple sclerosis
in Leeds was found to be similar to that in the south of the United
Kingdom but lower than that in Scotland. There is no evidence of a
latitudinal gradient of increasing prevalence of multiple sclerosis
from the south to the north of England.
This application is a hybrid architecture that embeds a previous hospital booking procedure and allows to book visits and diagnostic examinations by remote people, general practitioners, clinical centers via an Internet connection. A PowerBuilder-based Web server has been developed to interface the procedure, in such a way as at any client request, the DDL functions are used through the web server, and at any reply of the Oracle database, a HTML string is generated that goes back to the client. To realize this project many tools have been used:
Internet Information Server - it is a set of applications using dynamic link libraries much faster than the standard CGI ones.
ASP (Active Server Pages) - this is a new Internet technology that allows to create fine Web pages, platform independent and usable by any browser.
The VBScript - this is an event-based language, useful to link code to a user interaction or to a system reply.
HTML - this language describes the structure of a document and defines a set of fixed stiles for the Web pages, and can be read by any editor.
PowerBuilder Enterprise- it is an object-oriented environment for the development of high-performance client/server and Internet applications on many different OSs.
SQL*Net - it is an Oracle product that optimizes the network management ensuring interoperability between different computers, OSs, and networks.
Oracle ODBC32 - it is a standard protocol to access information in SQL databases (Microsoft, Paradox, Oracle, etc.)
The developed software fully manages the hospital booking procedure and is included into the hospital network. In this way the Unique Booking Center can work both inside the hospital and from all over the country by means of a simple Internet connection.
Telemedicine; Radiology; Intranet; Internet; Images
The role of fish consumption and omega 3 supplementation in multiple sclerosis (MS) is controversial, although there is some evidence to support a beneficial effect. We surveyed a large cohort of people with MS recruited via Web 2.0 platforms, requesting information on type of MS, relapse rates, disability, health-related quality of life, frequency of fish consumption and omega 3 supplementation, including type and dose, using validated tools where possible. We aimed to determine whether there was an association between fish consumption and omega 3 supplementation and quality of life, disability and disease activity for people with MS. Univariate and multivariate analyses were undertaken. Of 2469 respondents, 1493 (60.5%) had relapsing–remitting MS. Those consuming fish more frequently and those taking omega 3 supplements had significantly better quality of life, in all domains, and less disability. For fish consumption, there was a clear dose–response relationship for these associations. There were also trends towards lower relapse rates and reduced disease activity; flaxseed oil supplementation was associated with over 60% lower relapse rate over the previous 12 months. Further dietary studies and randomised controlled trials of omega 3 supplementation for people with MS are required, preferably using flaxseed oil.
multiple sclerosis; MS; risk factors; prevention
The use of Web Services to enable programmatic access to on-line bioinformatics is becoming increasingly important in the Life Sciences. However, their number, distribution and the variable quality of their documentation can make their discovery and subsequent use difficult. A Web Services registry with information on available services will help to bring together service providers and their users. The BioCatalogue (http://www.biocatalogue.org/) provides a common interface for registering, browsing and annotating Web Services to the Life Science community. Services in the BioCatalogue can be described and searched in multiple ways based upon their technical types, bioinformatics categories, user tags, service providers or data inputs and outputs. They are also subject to constant monitoring, allowing the identification of service problems and changes and the filtering-out of unavailable or unreliable resources. The system is accessible via a human-readable ‘Web 2.0’-style interface and a programmatic Web Service interface. The BioCatalogue follows a community approach in which all services can be registered, browsed and incrementally documented with annotations by any member of the scientific community.
An increasing number of people search for health information online. During the last 10 years various researchers have determined the requirements for an ideal consumer health information system. The aim of this study was to figure out, whether medical laymen can find a more accurate diagnosis for a given anamnesis via the developed prototype health information system than via ordinary internet search.
In a randomized controlled trial, the prototype information system was evaluated by the assessment of two sample cases. Participants had to determine the diagnosis of a patient with a headache via information found searching the web. A patient’s history sheet and a computer with internet access were provided to the participants and they were guided through the study by an especially designed study website. The intervention group used the prototype information system; the control group used common search engines and portals. The numbers of correct diagnoses in each group were compared.
A total of 140 (60/80) participants took part in two study sections. In the first case, which determined a common diagnosis, both groups did equally well. In the second section, which determined a less common and more complex case, the intervention group did significantly better (P=0.031) due to the tailored information supply.
Using medical expert systems in combination with a portal searching meta-search engine represents a feasible strategy to provide reliable patient-tailored information and can ultimately contribute to patient safety with respect to information found via the internet.
Information supply; internet; expert system; meta-search; tailoring; headaches.
Work-related stress is a significant problem for both people and organizations. It may lead to mental illnesses such as anxiety and depression, resulting in increased work absences and disabilities. Scalable interventions to prevent and manage harmful stress can be delivered with the help of technology tools to support self-observations and skills training.
The aim of this study was to assess the feasibility of the P4Well intervention in treatment of stress-related psychological problems. P4Well is a novel intervention which combines modern psychotherapy (the cognitive behavioral therapy and the acceptance and commitment therapy) with personal health technologies to deliver the intervention via multiple channels, includinggroup meetings, Internet/Web portal, mobile phone applications, and personal monitoring devices.
This pilot study design was a small-scale randomized controlled trial that compared the P4Well intervention with a waiting list control group. In addition to personal health technologies for self-assessment, the intervention consisted of 3 psychologist-assisted group meetings. Self-assessed psychological measures through questionnaires were collected offline pre- and post-intervention, and 6 months after the intervention for the intervention group. Acceptance and usage of technology tools were measured with user experience questionnaires and usage logs.
A total of 24 subjects were randomized: 11 participants were followed up in the intervention group (1 was lost to follow-up) and 12 participants did not receive any intervention (control group). Depressive and psychological symptoms decreased and self-rated health and working ability increased. All participants reported they had benefited from the intervention. All technology tools had active users and 10/11 participants used at least 1 tool actively. Physiological measurements with personal feedback were considered the most useful intervention component.
Our results confirm the feasibility of the intervention and suggest that it had positive effects on psychological symptoms, self-rated health, and self-rated working ability. The intervention seemed to have a positive impact on certain aspects of burnout and job strain, such as cynicism and over-commitment. Future studies need to investigate the effectiveness, benefits, and possible problems of psychological interventions which incorporate new technologies.
The Finnish Funding Agency for Technology and Innovation (TEKES), Project number 40011/08
stress; technology-supported mini-intervention; personal health technologies; cognitive behaviour therapy; acceptance and commitment therapy; mhealth; mobile health; smartphone; Internet
Patient Internet portals have created new opportunities for assessment and management of chronic conditions.
To conduct an online screening survey for a study recruitment using a secure patient Internet portal to identify primary care patients with untreated depression, chronic pain, or mobility difficulty before nonurgent office visits.
Internet-based screening survey for a randomized trial.
Patients who were registered portal users who had scheduled primary care appointments.
Electronic study invitations via the portal were sent to 4,047 patients with scheduled visits to 34 primary care physicians participating in the study. After clicking on a link in the study invitation, patients were consecutively shown the study description, consent form, and lastly, the screening survey to determine final eligibility for study participation.
Of the 2,113 (52%) patients who opened the study invitation, 1,001 consented online to join the study and 981 (98%) of these completed the screening survey. Of the respondents, 319 (33%) screened positive for 1 or more of the 3 conditions.
The online screening survey conducted through the patient portal was effective in identifying patients with chronic conditions in advance of scheduled primary care visits for participation in an intervention study.
internet; ambulatory care; pain; screening; mobility
Biomedical ontologies provide essential domain knowledge to drive data integration, information retrieval, data annotation, natural-language processing and decision support. BioPortal (http://bioportal.bioontology.org) is an open repository of biomedical ontologies that provides access via Web services and Web browsers to ontologies developed in OWL, RDF, OBO format and Protégé frames. BioPortal functionality includes the ability to browse, search and visualize ontologies. The Web interface also facilitates community-based participation in the evaluation and evolution of ontology content by providing features to add notes to ontology terms, mappings between terms and ontology reviews based on criteria such as usability, domain coverage, quality of content, and documentation and support. BioPortal also enables integrated search of biomedical data resources such as the Gene Expression Omnibus (GEO), ClinicalTrials.gov, and ArrayExpress, through the annotation and indexing of these resources with ontologies in BioPortal. Thus, BioPortal not only provides investigators, clinicians, and developers ‘one-stop shopping’ to programmatically access biomedical ontologies, but also provides support to integrate data from a variety of biomedical resources.
Health education over resources, that use English, German and French language, is a rapidly growing area of medicine within the World Wide Web. Multiple gateways and portal servers have been set up to guide people within the diversity of materials available. For smaller language groups the situation is quite different: there is a lack of information in even the basic medical education topics. The question is: how to fill the missing gaps. Principally two different ways are possible:
Translating materials from English, German, French and other "big" language groups.
Generating original Internet-based texts for "smaller" language group
When using the first, possibility of problems related to copyright and proper translating occur. When using the second approach, the quality of materials could suffer. As an example, the homepage for health education www.doctus.ee is discussed in detail. This homepage includes materials about the health care system, basic health topics, main diseases and also a questionnaire for consulting one's health problems with a doctor. A year's experience running this health education Web site in Estonian has brought to following conclusions:
For translations a link for originals should be included.
With original Estonian texts copyright questions are frequent.
Guidance is frequently needed for translated texts.
Health consultations over Internet should be legally regulated
Health Education; Health Promotion
Introduction: Globally about 8% to 10% of newborns require neonatal intensive care (NICU) care. Families face emotional and financial difficulties when their sick newborns are hospitalized for prolonged periods in a NICU.
Methods: We conducted a study to assess the feasibility and acceptance of an Internet-based telemedicine program in an intensive care setting and to evaluate its impact on newborns' length of stay (LOS) in hospitals. We identified eligible newborns and obtained their parents' written consent before installing a Web camera by the babies' beds. Using child-specific, confidential passwords, families viewed real-time video images of their newborns through a secure portal via an Internet browser or 3G (third-generation) cell phone. Parents of study subjects completed a survey that detailed the performance of the system. Frequency of parental visits and LOS of babies were tracked and compared with the same data for similar high-risk newborns matched for gestation and birth weight.
Results: Parents responded favorably to the stability of the system and clarity of the image. Eighty percent requested a larger image frame. Frequencies of hospital visits made by parents of newborns in the study group and of those made by parents in the control group were not statistically different. LOS and postmenstrual age on discharge of study infants were not statistically different compared with infants in the control group.
Conclusion: Virtual visitation is well accepted by families with sick newborns requiring prolonged hospitalization. Inclusion of information technology to optimize NICU visitation resulted in no significant decrease in duration of hospitalization; however, its role in improving post-discharge transition care must be evaluated further.
In response to growing recognition of the value of prospective registration of systematic review protocols, we planned to develop a web-based open access international register. In order for the register to fulfil its aims of reducing unplanned duplication, reducing publication bias, and providing greater transparency, it was important to ensure the appropriate data were collected. We therefore undertook a consultation process with experts in the field to identify a minimum dataset for registration.
Methods and Findings
A two-round electronic modified Delphi survey design was used. The international panel surveyed included experts from areas relevant to systematic review including commissioners, clinical and academic researchers, methodologists, statisticians, information specialists, journal editors and users of systematic reviews. Direct invitations to participate were sent out to 315 people in the first round and 322 in the second round. Responses to an open invitation to participate were collected separately. There were 194 (143 invited and 51 open) respondents with a 100% completion rate in the first round and 209 (169 invited and 40 open) respondents with a 91% completion rate in the second round. In the second round, 113 (54%) of the participants reported having previously taken part in the first round. Participants were asked to indicate whether a series of potential items should be designated as optional or required registration items, or should not be included in the register. After the second round, a 70% or greater agreement was reached on the designation of 30 of 36 items.
The results of the Delphi exercise have established a dataset of 22 required items for the prospective registration of systematic reviews, and 18 optional items. The dataset captures the key attributes of review design as well as the administrative details necessary for registration.
The increasing volume of information available on the Internet today is a problem for health care professionals who want to access rapidly data of high quality. Usual search engines and directories are not sufficient to satisfy their needs. Moreover, the information published by Web sites is not always guaranteed. Some institutions around the word deal with the definition of a set of criteria for the evaluation of medical Web sites. We base our current work on the technologies we developed previously in order to integrate sources of information of various kinds using the "Unified Medical Language System" knowledge bases. This paper focuses on quality criteria and access characteristics Web sites should satisfy to be registered in a "Health Internet Directory". The design of such a system is proposed and discussed.
To organize tailored healthcare for people with multiple sclerosis (MS), knowledge about patterns in the use of healthcare among subgroups, such as those with depressive symptoms, is essential. Thus, the purpose of this study was to explore and compare the use of health services in people with MS and depressive symptoms, and without depressive symptoms over a period of 30 months.
Data on the use of health services by 71 people with MS and depressive symptoms, and 102 with no depressive symptoms were collected from a computerised register and by interview, then categorized with regard to disease severity (Expanded Disability Status Scale).
People with EDSS mild and depressive symptoms used more outpatient and inpatient care compared to those with no depressive symptoms. Furthermore, they received more unsalaried informal care as well as intense rehabilitation periods.
The issues underlying the differences in the use of healthcare need to be explored further, as well as the plausible implications for the organization of healthcare services for people with MS and depressive symptoms. Furthermore, the life situations of caregivers of people with MS and depressive symptoms should be considered, and appropriate interventions supplied in order to diminish caregiver burden.
Multiple sclerosis; Depressive symptoms; Longitudinal studies; Prospective studies; Health services; Observational
Study objective: Studies have shown that living in more deprived neighbourhoods is related to higher mortality rates, independent of individual socioeconomic characteristics. One approach that contributes to understanding the processes underlying this association is to examine whether the relation is modified by the country context. In this study, the size of the association between neighbourhood unemployment rates and all cause mortality was compared across samples from six countries (United States, Netherlands, England, Finland, Italy, and Spain).
Design: Data from three prospective cohort studies (ARIC (US), GLOBE (Netherlands), and Whitehall II (England)) and three population based register studies (Helsinki, Turin, Madrid) were analysed. In each study, neighbourhood unemployment rates were derived from census, register based data. Cox proportional hazard models, taking into account the possible correlation of outcomes among people of the same neighbourhood, were used to assess the associations between neighbourhood unemployment and all cause mortality, adjusted for education and occupation at the individual level.
Results: In men, after adjustment for age, education, and occupation, living in the quartile of neighbourhoods with the highest compared with the lowest unemployment rates was associated with increased hazards of mortality (14%–46%), although for the Whitehall II study associations were not statistically significant. Similar patterns were found in women, but associations were not statistically significant in two of the five studies that included women.
Conclusions: Living in more deprived neighbourhoods is associated with increased all cause mortality in the US and five European countries, independent of individual socioeconomic characteristics. There is no evidence that country substantially modified this association.
It is unclear if podiatric foot care for people with rheumatoid arthritis (RA) in New South Wales (NSW) meets current clinical recommendations. The objective of this study was to survey podiatrists’ perceptions of the nature of podiatric foot care provision for people who have RA in NSW.
An anonymous, cross-sectional survey with a web-based questionnaire was conducted. The survey questionnaire was developed according to clinical experience and current foot care recommendations. State registered podiatrists practising in the state of NSW were invited to participate. The survey link was distributed initially via email to members of the Australian Podiatry Association (NSW), and distributed further through snowballing techniques using professional networks. Data was analysed to assess significant associations between adherence to clinical practice guidelines, and private/public podiatry practices.
86 podiatrists participated in the survey (78% from private practice, 22% from public practice). Respondents largely did not adhere to formal guidelines to manage their patients (88%). Only one respondent offered a dedicated service for patients with RA. Respondents indicated that the primary mode of accessing podiatry was by self-referral (68%). Significant variation was observed regarding access to disease and foot specific assessments and treatment strategies. Assessment methods such as administration of patient reported outcome measures, vascular and neurological assessments were not conducted by all respondents. Similarly, routine foot care strategies such as prescription of foot orthoses, foot health advice and footwear were not employed by all respondents.
The results identified issues in foot care provision which should be explored through further research. Foot care provision in NSW does not appear to meet the current recommended standards for the management of foot problems in people who have RA. Improvements to foot care could be undertaken in terms of providing better access to examination techniques and treatment strategies that are recommended by evidence based treatment paradigms.
Rheumatoid arthritis; Foot health; Podiatry; Footwear; Care access; Web survey
Current UK legislation is impacting upon the feasibility and cost-effectiveness of medical record-based research aimed at benefiting the NHS and the public heath. Whereas previous commentators have focused on the Data Protection Act 1998, the Health and Social Care Act 2001 is the key legislation for public health researchers wishing to access medical records without written consent. The Act requires researchers to apply to the Patient Information Advisory Group (PIAG) for permission to access medical records without written permission. We present a case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research, and in our case £560 000 of public and charitable money was spent on research staff while a large part of their work was prohibited until the third year of a three year grant. We conclude by arguing that many of the current problems could be avoided by returning PIAG’s responsibilities to research ethics committees, and by allowing “opt-out” consent for many public health research projects.