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Therapeutic Patient Education Toolbox

You are probably visiting us here because you have been diagnosed with psoriasis, a common skin condition that is usually lifelong and can improve or worsen over time but can be controlled with treatment. What is the best way for you to deal with this? As a patient, it can often be challenging to find the right information on how to manage your disease.

Luckily, a large number of excellent resources have been developed by researchers, charities and health care professionals, often in collaboration with patients themselves, to help you gain the confidence, skills and knowledge to manage your psoriasis better.

On this website, an international group of health professionals has gathered the most important of these resources for you.

If you are a patient or a member of their families, please click on "Patients" above

If you are a health care professional or a researcher, please click on "Professionals" above

To learn more about the creation of the project, please click on "Project Creation" above

To discover our projects aims, please click on "project aims" above

To learn more about the Toolbox itself, please click on "Toolbox" above

To learn more about our TPE team, please click on "About us" above

This website and the project "Development of toolbox to aid therapeutic patient education in psoriasis" is funded by the European Academy of Dermatology and Venereology (EADV), a non-profit organization, 2016-2018.

This project was conducted by multi-disciplinary team of health care professionals and researchers.

Prof. Jo Lambert, MD & Dr. Lynda Grine
University Ghent
[link to website: PLEASE ADD]

Prof. Alexander Nast, MD & Dr. Corinna Dressler
Charité – Universitätsmedizin Berlin
[link to website: https://debm.charite.de/ ]

Prof. Paul Galdas, RN. PhD
University of York
[link to website: https://www.york.ac.uk/healthsciences/our-staff/paul-galdas/ ]

In 2015, the SPIN Scientific Committee decided to conduct a worldwide study on Therapeutic Patient Education (TPE) in Psoriasis, led by Prof. Jo Lambert of Ghent University. A first survey was sent through SPIN in the last quarter of 2015 with the aim to obtain a rough outline about the use of TPE amongst healthcare providers (HCP) during psoriasis management across the world.

It was completed by 247 unique respondents (34,1% response rate) from 71 different countries. 38% of respondents report to use therapeutic patient education and 26% claim these methods are evidence-based. Here are the main conclusions of this survey:

Following these results, the SPIN Committee decided to advance with a project to develop in a toolbox to aid with therapeutic patient education in psoriasis. The project started in January 2017, with an initial funding from the EADV - European Academy of Dermatology and Venereology for 2017-2018. This project is also being developed in close collaboration with the EADV Psoriasis Task Force.

Project team:
Ghent Univ.: Prof. Jo Lambert (lead), Lynda Grine
Charité Berlin: Prof. Alexander Nast, Corinna Dressler
Toulouse Univ.: Prof. Carle Paul
University of York: Paul Galdas
SPIN: Cheila Ramalho

You can also follow the project on ResearchGate!

Project timeline 2017-2020

Aim 1. Identify TPE and self-management methods used in practice by ‘experts’ in the field of psoriasis: who are the “experts” and how do they perform TPE in detail?

Aim 2. Identify the barriers that keep healthcare providers from using TPE: why is TPE underused?

Aim 3. Identify the patient’s needs: what are the most urgent needs amongst patients that TPE can address?

Aim 4. Systematic review of self-management and TPE interventions for chronic skinconditions: which educational interventions are effective (evidence-based) and address which patient needs?

Aim 5. Adapt and refine definition of TPE for Psoriasis: is the concept of TPE clear to everyone?

Aim 6. Developing the toolbox: can we offer the most effective educational interventions in a toolbox to healthcare providers?

Aim 7. Rollout period for toolbox: how do we offer this toolbox to healthcare providers? 

Our findings will be published in peer reviewed journals and presented at public health conferences.

Possible publications:
Publication 1: Systematic review
Publication 2: Roundtable discussion
Publication 3: TPE refined for Psoriasis: a modified Delphi process
Publication 4: TPE toolbox: content development, algorithms etc.

Possible congresses:
EADV congress and other international congresses

1. Systematic review:

[ Work in progress]

(Summary table coming soon)

2. Expert survey & Interviews:

[ Work in progress]

How to set up your own programme

Key things to consider:

Organisational level:
Financial and human resources to develop and implement a new initiative
Training and payment of staff when the initiative is in place
Infrastructure (such as rooms; access to the internet)
Reimbursement options for patients
Clinical pathways (referral and follow-up structures within your institution and with others)

Resources:
A practical guide to self-management support. Key components for successful implementation (2015) https://www.health.org.uk/publication/practical-guide-self-management-support
……
Living Well with a Chronic Condition: Framework for Self-management Support National Framework and Implementation Plan for Self-management Support for Chronic Conditions: COPD, Asthma, Diabetes and Cardiovascular disease (2017, https://www.lenus.ie/handle/10147/622639 - an example from Ireland)

Programme Level:
Before developing your own content and structure for a new initiative:
Look for systematic reviews & other key literature evaluating similar programmes – are there any initiatives that have been deemed effective and could these be adapted to your context
Consider working in a multi-disciplinary team including nurses, physicians, psychologist and/or health researchers and patients

Resources:
[add our systematic review & the page on our SR here]
The Behaviour Chance wheel https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096582/ http://www.behaviourchangewheel.com/
De Silva D (2011) Evidence: helping people help themselves A review of the evidence considering whether it is worthwhile to support self-management. London: The Health Foundation. https://www.health.org.uk/publication/evidence-helping-people-help-themselves

Monitoring and Evaluation:
Assess if your programme is effective – this is crucial not only for you and your patients but for commissioners.

Resources:
Medical Research Council Framework: Developing and evaluating complex interventions (updated version forthcoming 2019) www.mrc.ac.uk/complexinterventionsguidance
Ten priorities for commissioners: Transforming our health care system summary (2015) Example specific to the UK https://www.kingsfund.org.uk/publications/articles/transforming-our-health-care-system-ten-priorities-commissioners/summary

The main goal is to help you to better cope with psoriasis. You can lean skills that help you have more control over your life while taking care of your psoriasis.

You can learn about psoriasis and why it may worsen at times.

Ask your physician to refer you to a program near you to develop such a program at his/her facility.

If you want to contact the workforce, please send an email to dermatologie@uzgent.be or xxx@xxx.de.

List of places with programmes [work in progress].

Directory of Psoriasis
Medical Resources

SPIN Presentation



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