|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.
The explosion of new web/cloud/IoT-based applications and the data they generate are transforming our world right before our eyes. In this rush to adopt these new technologies, organizations are often ignoring fundamental questions concerning who owns the data and failing to ask for permission to conduct invasive surveillance of their customers. Organizations that are not transparent about how their systems gather data telemetry without offering shared data ownership risk product rejection, regu...
Oct. 27, 2016 02:17 PM EDT
Data is the fuel that drives the machine learning algorithmic engines and ultimately provides the business value. In his session at Cloud Expo, Ed Featherston, a director and senior enterprise architect at Collaborative Consulting, will discuss the key considerations around quality, volume, timeliness, and pedigree that must be dealt with in order to properly fuel that engine.
Oct. 27, 2016 01:45 PM EDT Reads: 3,992
SYS-CON Events announced today that MathFreeOn will exhibit at the 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. MathFreeOn is Software as a Service (SaaS) used in Engineering and Math education. Write scripts and solve math problems online. MathFreeOn provides online courses for beginners or amateurs who have difficulties in writing scripts. In accordance with various mathematical topics, there are more tha...
Oct. 27, 2016 01:45 PM EDT Reads: 1,136
Successful digital transformation requires new organizational competencies and capabilities. Research tells us that the biggest impediment to successful transformation is human; consequently, the biggest enabler is a properly skilled and empowered workforce. In the digital age, new individual and collective competencies are required. In his session at 19th Cloud Expo, Bob Newhouse, CEO and founder of Agilitiv, will draw together recent research and lessons learned from emerging and established ...
Oct. 27, 2016 01:45 PM EDT Reads: 1,586
In his general session at 19th Cloud Expo, Manish Dixit, VP of Product and Engineering at Dice, will discuss how Dice leverages data insights and tools to help both tech professionals and recruiters better understand how skills relate to each other and which skills are in high demand using interactive visualizations and salary indicator tools to maximize earning potential. Manish Dixit is VP of Product and Engineering at Dice. As the leader of the Product, Engineering and Data Sciences team a...
Oct. 27, 2016 01:15 PM EDT Reads: 819
Virgil consists of an open-source encryption library, which implements Cryptographic Message Syntax (CMS) and Elliptic Curve Integrated Encryption Scheme (ECIES) (including RSA schema), a Key Management API, and a cloud-based Key Management Service (Virgil Keys). The Virgil Keys Service consists of a public key service and a private key escrow service.
Oct. 27, 2016 01:15 PM EDT Reads: 1,196
The best way to leverage your Cloud Expo presence as a sponsor and exhibitor is to plan your news announcements around our events. The press covering Cloud Expo and @ThingsExpo will have access to these releases and will amplify your news announcements. More than two dozen Cloud companies either set deals at our shows or have announced their mergers and acquisitions at Cloud Expo. Product announcements during our show provide your company with the most reach through our targeted audiences.
Oct. 27, 2016 01:15 PM EDT Reads: 5,076
@ThingsExpo has been named the Top 5 Most Influential Internet of Things Brand by Onalytica in the ‘The Internet of Things Landscape 2015: Top 100 Individuals and Brands.' Onalytica analyzed Twitter conversations around the #IoT debate to uncover the most influential brands and individuals driving the conversation. Onalytica captured data from 56,224 users. The PageRank based methodology they use to extract influencers on a particular topic (tweets mentioning #InternetofThings or #IoT in this ...
Oct. 27, 2016 01:00 PM EDT Reads: 8,614
Intelligent machines are here. Robots, self-driving cars, drones, bots and many IoT devices are becoming smarter with Machine Learning. In her session at @ThingsExpo, Sudha Jamthe, CEO of IoTDisruptions.com, will discuss the next wave of business disruption at the junction of IoT and AI, impacting many industries and set to change our lives, work and world as we know it.
Oct. 27, 2016 01:00 PM EDT Reads: 340
More and more brands have jumped on the IoT bandwagon. We have an excess of wearables – activity trackers, smartwatches, smart glasses and sneakers, and more that track seemingly endless datapoints. However, most consumers have no idea what “IoT” means. Creating more wearables that track data shouldn't be the aim of brands; delivering meaningful, tangible relevance to their users should be. We're in a period in which the IoT pendulum is still swinging. Initially, it swung toward "smart for smar...
Oct. 27, 2016 11:45 AM EDT Reads: 1,254
Web Real-Time Communication APIs have quickly revolutionized what browsers are capable of. In addition to video and audio streams, we can now bi-directionally send arbitrary data over WebRTC's PeerConnection Data Channels. With the advent of Progressive Web Apps and new hardware APIs such as WebBluetooh and WebUSB, we can finally enable users to stitch together the Internet of Things directly from their browsers while communicating privately and securely in a decentralized way.
Oct. 27, 2016 11:30 AM EDT Reads: 1,912
In past @ThingsExpo presentations, Joseph di Paolantonio has explored how various Internet of Things (IoT) and data management and analytics (DMA) solution spaces will come together as sensor analytics ecosystems. This year, in his session at @ThingsExpo, Joseph di Paolantonio from DataArchon, will be adding the numerous Transportation areas, from autonomous vehicles to “Uber for containers.” While IoT data in any one area of Transportation will have a huge impact in that area, combining sensor...
Oct. 27, 2016 11:00 AM EDT Reads: 1,158
With an estimated 50 billion devices connected to the Internet by 2020, several industries will begin to expand their capabilities for retaining end point data at the edge to better utilize the range of data types and sheer volume of M2M data generated by the Internet of Things. In his session at @ThingsExpo, Don DeLoach, CEO and President of Infobright, discussed the infrastructures businesses will need to implement to handle this explosion of data by providing specific use cases for filterin...
Oct. 27, 2016 11:00 AM EDT Reads: 3,062
What happens when the different parts of a vehicle become smarter than the vehicle itself? As we move toward the era of smart everything, hundreds of entities in a vehicle that communicate with each other, the vehicle and external systems create a need for identity orchestration so that all entities work as a conglomerate. Much like an orchestra without a conductor, without the ability to secure, control, and connect the link between a vehicle’s head unit, devices, and systems and to manage the ...
Oct. 27, 2016 10:15 AM EDT Reads: 1,428
Ask someone to architect an Internet of Things (IoT) solution and you are guaranteed to see a reference to the cloud. This would lead you to believe that IoT requires the cloud to exist. However, there are many IoT use cases where the cloud is not feasible or desirable. In his session at @ThingsExpo, Dave McCarthy, Director of Products at Bsquare Corporation, will discuss the strategies that exist to extend intelligence directly to IoT devices and sensors, freeing them from the constraints of ...
Oct. 27, 2016 10:15 AM EDT Reads: 3,238
DevOps is being widely accepted (if not fully adopted) as essential in enterprise IT. But as Enterprise DevOps gains maturity, expands scope, and increases velocity, the need for data-driven decisions across teams becomes more acute. DevOps teams in any modern business must wrangle the ‘digital exhaust’ from the delivery toolchain, "pervasive" and "cognitive" computing, APIs and services, mobile devices and applications, the Internet of Things, and now even blockchain. In this power panel at @...
Oct. 27, 2016 09:15 AM EDT Reads: 2,167
@ThingsExpo has been named the Top 5 Most Influential M2M Brand by Onalytica in the ‘Machine to Machine: Top 100 Influencers and Brands.' Onalytica analyzed the online debate on M2M by looking at over 85,000 tweets to provide the most influential individuals and brands that drive the discussion. According to Onalytica the "analysis showed a very engaged community with a lot of interactive tweets. The M2M discussion seems to be more fragmented and driven by some of the major brands present in the...
Oct. 27, 2016 08:45 AM EDT Reads: 11,596
19th Cloud Expo, taking place November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA, will feature technical sessions from a rock star conference faculty and the leading industry players in the world. Cloud computing is now being embraced by a majority of enterprises of all sizes. Yesterday's debate about public vs. private has transformed into the reality of hybrid cloud: a recent survey shows that 74% of enterprises have a hybrid cloud strategy. Meanwhile, 94% of enterpri...
Oct. 27, 2016 07:00 AM EDT Reads: 5,057
Amazon has gradually rolled out parts of its IoT offerings, but these are just the tip of the iceberg. In addition to optimizing their backend AWS offerings, Amazon is laying the ground work to be a major force in IoT - especially in the connected home and office. In his session at @ThingsExpo, Chris Kocher, founder and managing director of Grey Heron, explained how Amazon is extending its reach to become a major force in IoT by building on its dominant cloud IoT platform, its Dash Button strat...
Oct. 27, 2016 07:00 AM EDT Reads: 4,945
SYS-CON Events announced today that Streamlyzer will exhibit at the 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. Streamlyzer is a powerful analytics for video streaming service that enables video streaming providers to monitor and analyze QoE (Quality-of-Experience) from end-user devices in real time.
Oct. 27, 2016 06:45 AM EDT Reads: 1,100