|By PR Newswire||
|November 8, 2012 03:01 AM EST||
NORTHAMPTON, England, November 8, 2012 /PRNewswire/ --
New results from a recent survey by The Psoriasis Association reveal that despite progress in the number of patients having their psoriasis severity level assessed, there is still a high level of patient dissatisfaction with treatment, suggesting that these assessments may not be translated into therapy changes where appropriate. Despite an increase in awareness of psoriasis severity measurement, this latest survey also showed that more than half of patients were very dissatisfied with the treatment they were receiving, and over two thirds stated that their doctor or nurse had not discussed any treatment to help improve their quality of life (QoL).
The 'Know your PASI' follow-up survey, which was supported by Janssen, has revealed that patient awareness of Psoriasis Area and Severity Index (PASI) assessments has increased since the first survey in 2011. In fact, the percentage of patients aware of the PASI measurement has nearly trebled to 59%. It is surprising, however, that only 32% of patients have had this important disease severity measurement taken by their doctor. In addition, 63% of patients could not recall their psoriasis severity being measured by any other means, suggesting that they may not be managed effectively as a result.
Helen McAteer, Chief Executive of The Psoriasis Association, says "The survey findings are astonishing and highlight that there has become a need for patients to be proactive in order to drive a change in therapy where they feel they are not receiving the best treatment. We strongly support the need for this change because we see that psoriasis severity assessments are not consistently used or translated into changes in treatment where appropriate."
These findings show a significant disparity between the recommendations being made in the latest National Institute for Health and Clinical Excellence (NICE) guidelines - that all patients should have their disease severity regularly assessed through PASI measurements, and their QoL assessed through the Dermatology Life Quality Index (DLQI), to ensure that they receive the care and treatment they require.Further new findings from the 'Know your PASI' follow-up survey revealed that patients are not being assessed for other key factors such as their cardiovascular risk, which worryingly may mean other conditions and adverse effects of treatment are not being identified.
The government has recognised in a recent framework of care that enhancing QoL for people with long-term conditions is of great importance when considering patient management. The British Association of Dermatologists (BAD) recommends that everyone with psoriasis should have the severity of their disease assessed - taking into consideration where on the body it appears, how widespread it is and the thickness and redness of the plaques. The PASI assessment helps patients and doctors understand the physical severity of the psoriasis and provides a benchmark which, with on-going checks, shows what improvements treatment is making, or crucially, if the treatment is not having the required effect.
Helen McAteer concludes "Based on the new survey findings, The Psoriasis Association is calling for improved awareness of the importance of disease severity, and consequently increased measurement of this in psoriasis patients. We also recommend that to facilitate improved QoL, patients need to proactively request information on different treatments they may eligible for, as soon as their psoriasis severity is deemed great enough for a change in therapy. Patients should feel comfortable speaking up when they are unhappy with their current treatment."
Every person who is passionate about the care provided for patients with psoriasis in the UK is encouraged to sign the Psoriasis Mandate, an online petition calling for improved standards of care in the diagnosis and management of psoriasis. The Psoriasis Association invites signatures to this Mandate, which can be accessed via http://www.psoriasis360.com/psoriasis-mandate to call for support for five key rights of people with psoriasis:
- Early and accurate diagnosis
- Access to a specialist for regular treatment review
- Access to effective treatment options
- Involvement and choice in a treatment plan with defined goals
- Understanding and support from society to live a normal life
Estimated to affect up to 1.8 million people in the UK, psoriasis is a painful and debilitating condition characterised by red, raised and inflamed patches on the skin and is classified as being mild, moderate or severe. As well as being physically debilitating, psoriasis can have a deep psychological impact.
Notes to Editors
This press release was funded by Janssen.
About the Psoriasis Area and Severity Index (PASI)
The PASI is a free and simple, painless assessment which takes into account how bad a patient's psoriasis plaques are (how thick, red or sore they are) and how much of the body is affected, to come up with a score. The score is given as a number from 0 (not affected at all) to 72 (very severely affected). If the PASI score is more than 10, the disease is classified as moderate to severe.
Psoriasis is much more than a physical disease and can be considered severe if it has a profound psychological effect on a person's quality of life. The DLQI is recommended to assess the impact of psoriasis on quality of life.
An interactive PASI calculator (available as an iPhone/iPad app or PC tool) for calculating a PASI score can be downloaded at: http://www.psoriasis360.com/about-psoriasis/types.
About The Psoriasis Association
The Psoriasis Association is the leading national membership organisation for people affected by psoriasis - patients, families, carers and health professionals. Founded in 1968 by Dr Dick Coles, a Consultant Dermatologist in Northampton, the Association has three main aims:
1. To support people who have psoriasis
2. To raise awareness about psoriasis
3. To fund research into the causes, treatments and care of psoriasis
About the Survey
The Know Your PASI Survey is part of a joint collaboration between The Psoriasis Association and Janssen to help educate patients and doctors about how the medical severity of psoriasis is assessed. The survey was conducted by medeConnect Healthcare Insight, part of the Doctors.net.uk group.
- Fieldwork for the study was conducted from 4-26 April 2012 with a 5 minute online quantitative survey with 200 psoriasis patients that had participated in the original survey, which took place during 13 July-26 September 2011 and involved 667 respondents, 603 of whom live in the UK, who answered a 5 minute online quantitative survey
- Recruitment occurred via Psoriasis 360 website and The Psoriasis Association
At Janssen, we are dedicated to addressing and solving some of the most important unmet medical needs of our time in oncology, immunology, neuroscience, infectious diseases and vaccines and metabolic diseases. Driven by our commitment to patients, we bring innovative products, services and solutions to people throughout the world. The legal entity of Janssen in the UK and Ireland is Janssen-Cilag Limited. Please visit http://www.janssen.co.uk for more information.
- The Know Your PASI Follow-Up Survey. Data on file. October 2012
- The Know Your PASI Survey. Data on file. October 2011
- National Institute for Clinical Excellence. Psoriasis. Assessment and management of psoriasis. Clinical Guideline: methods, evidence and recommendations. October 2012
- The NHS Outcomes Framework 2012/13. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_131723.pdf . Last accessed October 2012
- The Psoriasis Association. Available at: http://www.psoriasis-association.org.uk. Accessed 22 October 2012
- Dubertret L et al. European patient perspectives on the impact of psoriasis: The EUROPSO patient membership survey. British Journal of Dermatology 2006:155:729-36
- Mrowietz U et al. Definition of treatment goals for moderate to severe psoriasis: A European consensus. Archives of Dermatological Research 2011;303:1-10
- US National Psoriasis Foundation. Available at http://www.psoriasis.org/about-psoriasis/treatments/severity. Accessed on 22 October 2012.
Today air travel is a minefield of delays, hassles and customer disappointment. Airlines struggle to revitalize the experience. GE and M2Mi will demonstrate practical examples of how IoT solutions are helping airlines bring back personalization, reduce trip time and improve reliability. In their session at @ThingsExpo, Shyam Varan Nath, Principal Architect with GE, and Dr. Sarah Cooper, M2Mi's VP Business Development and Engineering, will explore the IoT cloud-based platform technologies driving this change including privacy controls, data transparency and integration of real time context w...
Oct. 9, 2015 08:45 PM EDT Reads: 127
The buzz continues for cloud, data analytics and the Internet of Things (IoT) and their collective impact across all industries. But a new conversation is emerging - how do companies use industry disruption and technology enablers to lead in markets undergoing change, uncertainty and ambiguity? Organizations of all sizes need to evolve and transform, often under massive pressure, as industry lines blur and merge and traditional business models are assaulted and turned upside down. In this new data-driven world, marketplaces reign supreme while interoperability, APIs and applications deliver un...
Oct. 9, 2015 08:00 PM EDT Reads: 312
Too often with compelling new technologies market participants become overly enamored with that attractiveness of the technology and neglect underlying business drivers. This tendency, what some call the “newest shiny object syndrome,” is understandable given that virtually all of us are heavily engaged in technology. But it is also mistaken. Without concrete business cases driving its deployment, IoT, like many other technologies before it, will fade into obscurity.
Oct. 9, 2015 07:45 PM EDT Reads: 161
Electric power utilities face relentless pressure on their financial performance, and reducing distribution grid losses is one of the last untapped opportunities to meet their business goals. Combining IoT-enabled sensors and cloud-based data analytics, utilities now are able to find, quantify and reduce losses faster – and with a smaller IT footprint. Solutions exist using Internet-enabled sensors deployed temporarily at strategic locations within the distribution grid to measure actual line loads.
Oct. 9, 2015 06:30 PM EDT Reads: 116
The Internet of Everything is re-shaping technology trends–moving away from “request/response” architecture to an “always-on” Streaming Web where data is in constant motion and secure, reliable communication is an absolute necessity. As more and more THINGS go online, the challenges that developers will need to address will only increase exponentially. In his session at @ThingsExpo, Todd Greene, Founder & CEO of PubNub, will explore the current state of IoT connectivity and review key trends and technology requirements that will drive the Internet of Things from hype to reality.
Oct. 9, 2015 05:30 PM EDT Reads: 111
The Internet of Things (IoT) is growing rapidly by extending current technologies, products and networks. By 2020, Cisco estimates there will be 50 billion connected devices. Gartner has forecast revenues of over $300 billion, just to IoT suppliers. Now is the time to figure out how you’ll make money – not just create innovative products. With hundreds of new products and companies jumping into the IoT fray every month, there’s no shortage of innovation. Despite this, McKinsey/VisionMobile data shows "less than 10 percent of IoT developers are making enough to support a reasonably sized team....
Oct. 9, 2015 04:00 PM EDT Reads: 245
You have your devices and your data, but what about the rest of your Internet of Things story? Two popular classes of technologies that nicely handle the Big Data analytics for Internet of Things are Apache Hadoop and NoSQL. Hadoop is designed for parallelizing analytical work across many servers and is ideal for the massive data volumes you create with IoT devices. NoSQL databases such as Apache HBase are ideal for storing and retrieving IoT data as “time series data.”
Oct. 9, 2015 03:45 PM EDT Reads: 510
The IoT market is on track to hit $7.1 trillion in 2020. The reality is that only a handful of companies are ready for this massive demand. There are a lot of barriers, paint points, traps, and hidden roadblocks. How can we deal with these issues and challenges? The paradigm has changed. Old-style ad-hoc trial-and-error ways will certainly lead you to the dead end. What is mandatory is an overarching and adaptive approach to effectively handle the rapid changes and exponential growth.
Oct. 9, 2015 03:00 PM EDT Reads: 212
Today’s connected world is moving from devices towards things, what this means is that by using increasingly low cost sensors embedded in devices we can create many new use cases. These span across use cases in cities, vehicles, home, offices, factories, retail environments, worksites, health, logistics, and health. These use cases rely on ubiquitous connectivity and generate massive amounts of data at scale. These technologies enable new business opportunities, ways to optimize and automate, along with new ways to engage with users.
Oct. 9, 2015 02:00 PM EDT Reads: 191
The IoT is upon us, but today’s databases, built on 30-year-old math, require multiple platforms to create a single solution. Data demands of the IoT require Big Data systems that can handle ingest, transactions and analytics concurrently adapting to varied situations as they occur, with speed at scale. In his session at @ThingsExpo, Chad Jones, chief strategy officer at Deep Information Sciences, will look differently at IoT data so enterprises can fully leverage their IoT potential. He’ll share tips on how to speed up business initiatives, harness Big Data and remain one step ahead by apply...
Oct. 9, 2015 01:45 PM EDT Reads: 565
There will be 20 billion IoT devices connected to the Internet soon. What if we could control these devices with our voice, mind, or gestures? What if we could teach these devices how to talk to each other? What if these devices could learn how to interact with us (and each other) to make our lives better? What if Jarvis was real? How can I gain these super powers? In his session at 17th Cloud Expo, Chris Matthieu, co-founder and CTO of Octoblu, will show you!
Oct. 9, 2015 01:15 PM EDT
SYS-CON Events announced today that ProfitBricks, the provider of painless cloud infrastructure, will exhibit at SYS-CON's 17th International Cloud Expo®, which will take place on November 3–5, 2015, at the Santa Clara Convention Center in Santa Clara, CA. ProfitBricks is the IaaS provider that offers a painless cloud experience for all IT users, with no learning curve. ProfitBricks boasts flexible cloud servers and networking, an integrated Data Center Designer tool for visual control over the cloud and the best price/performance value available. ProfitBricks was named one of the coolest Clo...
Oct. 9, 2015 01:00 PM EDT Reads: 803
As a company adopts a DevOps approach to software development, what are key things that both the Dev and Ops side of the business must keep in mind to ensure effective continuous delivery? In his session at DevOps Summit, Mark Hydar, Head of DevOps, Ericsson TV Platforms, will share best practices and provide helpful tips for Ops teams to adopt an open line of communication with the development side of the house to ensure success between the two sides.
Oct. 9, 2015 01:00 PM EDT Reads: 616
SYS-CON Events announced today that IBM Cloud Data Services has been named “Bronze Sponsor” of SYS-CON's 17th Cloud Expo, which will take place on November 3–5, 2015, at the Santa Clara Convention Center in Santa Clara, CA. IBM Cloud Data Services offers a portfolio of integrated, best-of-breed cloud data services for developers focused on mobile computing and analytics use cases.
Oct. 9, 2015 12:00 PM EDT Reads: 740
SYS-CON Events announced today that Sandy Carter, IBM General Manager Cloud Ecosystem and Developers, and a Social Business Evangelist, will keynote at the 17th International Cloud Expo®, which will take place on November 3–5, 2015, at the Santa Clara Convention Center in Santa Clara, CA.
Oct. 9, 2015 11:15 AM EDT
Developing software for the Internet of Things (IoT) comes with its own set of challenges. Security, privacy, and unified standards are a few key issues. In addition, each IoT product is comprised of at least three separate application components: the software embedded in the device, the backend big-data service, and the mobile application for the end user's controls. Each component is developed by a different team, using different technologies and practices, and deployed to a different stack/target - this makes the integration of these separate pipelines and the coordination of software upd...
Oct. 9, 2015 09:00 AM EDT Reads: 298
Mobile messaging has been a popular communication channel for more than 20 years. Finnish engineer Matti Makkonen invented the idea for SMS (Short Message Service) in 1984, making his vision a reality on December 3, 1992 by sending the first message ("Happy Christmas") from a PC to a cell phone. Since then, the technology has evolved immensely, from both a technology standpoint, and in our everyday uses for it. Originally used for person-to-person (P2P) communication, i.e., Sally sends a text message to Betty – mobile messaging now offers tremendous value to businesses for customer and empl...
Oct. 9, 2015 08:30 AM EDT Reads: 312
"Matrix is an ambitious open standard and implementation that's set up to break down the fragmentation problems that exist in IP messaging and VoIP communication," explained John Woolf, Technical Evangelist at Matrix, in this SYS-CON.tv interview at @ThingsExpo, held Nov 4–6, 2014, at the Santa Clara Convention Center in Santa Clara, CA.
Oct. 9, 2015 07:00 AM EDT Reads: 5,892
WebRTC converts the entire network into a ubiquitous communications cloud thereby connecting anytime, anywhere through any point. In his session at WebRTC Summit,, Mark Castleman, EIR at Bell Labs and Head of Future X Labs, will discuss how the transformational nature of communications is achieved through the democratizing force of WebRTC. WebRTC is doing for voice what HTML did for web content.
Oct. 9, 2015 06:00 AM EDT Reads: 1,419
Nowadays, a large number of sensors and devices are connected to the network. Leading-edge IoT technologies integrate various types of sensor data to create a new value for several business decision scenarios. The transparent cloud is a model of a new IoT emergence service platform. Many service providers store and access various types of sensor data in order to create and find out new business values by integrating such data.
Oct. 9, 2015 04:00 AM EDT Reads: 578