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
Prof. Alexander Nast, MD & Dr. Corinna Dressler
Charité – Universitätsmedizin Berlin
Prof. Paul Galdas, RN. PhD
University of York
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.
Ghent Univ.: Prof. Jo Lambert (lead), Dr Lynda Grine
Charité Berlin: Prof. Alexander Nast, Dr Corinna Dressler
Toulouse Univ.: Prof. Carle Paul
University of York: Prof. Paul Galdas
SPIN: Marianne Charamon
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.
1. Systematic review:
Corinna Dressler, Jo Lambert, Lynda Grine, Paul Galdas, Carle Paul, Miriam Zidane, Alexander Nast
Journal der Deutschen Dermatologischen Gesellschaft (accepted).
Psoriasis is a chronic inflammatory skin condition. Patient education may be one option to improve adherence and coping. The aim of this systematic review is to identify studies evaluating educational interventions for psoriasis patients. The review was conducted following the methods recommended by Cochrane. We searched seven databases, one trial register and three grey literature repositories. Data screening and extraction was done by two t reviewers independently. The risk of bias 2.0, ROBINS-I, NIH-tool were used. Additionally, the APEASE criteria were applied. We evaluat ed 16 studies. Two RCTs evaluated patient-practitioner or patient-nurse one-to-one interventions, one RCT assessed a web-based intervention, three RCTs reported group interventions taking place frequently; one RCT reported one-off group sessions. The remaining RCT compared the health care professionals involved. The risk of bias rating ranged from ‘some concerns’ to ‘high’. Three RCTs found an effect. We included 4 CCTs - one had an effect. One of 4 included before-after-studies warrants further investigation. Despite similarities in delivery mode across the interventions, patients eligible and settings in which interventions were delivered differed. Interventions that included an individual (one-to-one) session appear successful. Two interventions seem suitable for adaptation using APEASE: the topical treatment program (1, 2) and motivational interviewing after climate therapy(3, 4).
The review is being kept updated in form of a living systematic review. We will be searching for new studies every six months starting January 2019.
Table 1: Living Review History
Mota (5) evaluated the effect of several oral education sessions (30 minutes) on awareness of cardiovascular comorbidities amongst psoriasis patients. They report an improvement in knowledge of these comorbidities after the session and after six months. The impact on psoriasis or quality of life was not assessed. Our critical appraisal of the study lead to poor due to suboptimal reporting.
Najafi-Ghezeljeh(6) recruited patients hospitalized with psoriasis to participate in a self-management education intervention comprised of three group session and three telephone calls during which the disease, treatment options, lifestyle and behaviour were discussed. After 3 months, no difference between the intervention and the routine care groups based on final DLQI (mean difference -1.23 [-3.70; 1.24], but a difference was seen based on the mean change in PASI (- 4.21 [-7.81; -0.61]). The risk of bias evaluations lead to moderate for the outcome PASI and serious for the outcome DLQI (ROBINS-I for non-randomized studies). Authors gave no feedback.
Table 2: APEASE(7) evaluation of additional studies
1. Reich K, Mrowietz U, Karakasili E, Zschocke I. Development of an adherence-enhancing intervention in topical treatment termed the topical treatment optimization program (TTOP). Arch Dermatol Res. 2014;306(7):667-76.
2. Reich K, Zschocke I, Bachelez H, de Jong EMGJ, Gisondi P, Puig L, et al. A Topical Treatment Optimisation Programme (TTOP) improves clinical outcome to calcipotriol/betamethasone gel in psoriasis: Results of the 64-week, multinational, randomized, phase IV study in 1790 patients (PSO-TOP). Br J Dermatol. 2017;177(1):197-205.
3. Larsen MH, Krogstad AL, Aas E, Moum T, Wahl AK. A telephone-based motivational interviewing intervention has positive effects on psoriasis severity and self-management: a randomized controlled trial. Br J Dermatol. 2014;171(6):1458-69.
4. Larsen MH, Wahl AK, Krogstad AL, Aas E. Cost-utility Analysis of Supported Self-management with Motivational Interviewing for Patients with Psoriasis. Acta Derm Venereol. 2017;96(5):664-8.
5. Mota F, Selores M, Torres T. Importance of educational sessions on cardiometabolic comorbidities. Awareness among psoriasis patients. Actas Dermo-Sifiliograficas. 2016;107(6):539-41.
6. NAJAFI GHEZELJEH T, SOLTANDEHGHAN K, HOSEINI F. The effect of self-management education on the quality of life and severity of the disease in patients with psoriasis: A clinical trial. Nursing Practice Today. 2018;5(1):243-55.
7. Michie S, Atkins L, West R. The behaviour change wheel : a guide to designing Interventions2014.
8. Bundy C, Kaur-Pinder B, Bucci S, Tarrier N, Griffiths CEM. Managing psychological morbidity in patients with psoriasis using a novel online treatment programme: the e-TIPs study. Br J Dermatol. 2011;165:54.
9. Bundy C, Pinder B, Bucci S, Reeves D, Griffiths CEM, Tarrier N. A novel, web-based, psychological intervention for people with psoriasis: the electronic Targeted Intervention for Psoriasis (eTIPs) study. Br J Dermatol. 2013;169(2):329-36.
10. Bostoen J, Bracke S, De Keyser S, Lambert J. An educational programme for patients with psoriasis and atopic dermatitis: a prospective randomized controlled trial. Br J Dermatol. 2012;167(5):1025-31.
11. Bostoen J, Geusens B, Lambert J, Bracke S, Dekeyser S. An educational program for patients with psoriasis and atopic dermatitis: A prospective randomized, controlled trial. J Am Acad Dermatol. 2012;1):AB84.
12. Rothman AI, Byrne N, Schachter RK, Rosenberg L, Mitchell D. An educational program for psoriatics: an evaluation. Eval Health Prof. 1980;3(2):191-203.
13. Thongkaow S, Kongsin S, Jiamton S, Chunhasewee C, Pratchayapruit W. The Effectiveness of Participation in Self-Help Group on Self-Care Ability and Disease Severity Among Patients with Psoriasis [Master Thesis]. Bangkok: Mahidol University; 2016.
14. Ersser SJ, Cowdell FC, Nicholls PG, Latter SM, Healy E. A pilot randomized controlled trial to examine the feasibility and efficacy of an educational nursing intervention to improve self-management practices in patients with mild-moderate psoriasis. J Eur Acad Dermatol Venereol. 2012;26(6):738-45.
15. Lora V, Gisondi P, Calza A, Zanoni M, Girolomoni G. Efficacy of a single educative intervention in patients with chronic plaque psoriasis. Dermatology. 2009;219(4):316-21.
16. Bremer Schulte M, Cormane RH, van Dijk E, Wuite J. Group therapy of psoriasis. Duo formula group treatment (DFGT) as an example. J Am Acad Dermatol. 1985;12(1 Pt 1):61-6.
17. Fortune DG, Richards HL, Griffiths CE, Main CJ. Targeting cognitive-behaviour therapy to patients’ implicit model of psoriasis: Results from a patient preference controlled trial. Br J Clin Psychol. 2004;43(1):65-82.
18. Fortune DG, Richards HL, Kirby B, Bowcock S, Main CJ, Griffiths CEM. A cognitive-behavioural symptom management programme as an adjunct in psoriasis therapy. Br J Dermatol. 2002;146(3):458-65.
19. Pagliarello C, Calza A, Armani E, Di Pietro C, Tabolli S. Effectiveness of an empowerment-based intervention for psoriasis among patients attending a medical spa. Eur J Dermatol. 2011;21(1):62-6.
20. Renzi C, Di Pietro C, Gisondi P, Chinni LM, Fazio M, Ianni A, et al. Insufficient knowledge among psoriasis patients can represent a barrier to participation in decision-making. Acta Derm Venereol. 2006;86(6):528-34.
21. Burnett CJ, Gordon K, Kundu RV. Psoriasis and cardiometabolic disease: An educational and teaching intervention on cardiometabolic risks. J Am Acad Dermatol. 2015;1):AB101.
22. Burnett CJ, West DP, Rademaker AW, Kundu RV. Psoriasis and Cardiometabolic Disease: A Brief, Focused, Educational Intervention on Cardiometabolic Risks. Journal Of Drugs In Dermatology. 2016;15(10):1176-80.
23. de Korte J, Van Onselen J, Kownacki S, Sprangers MAG, Bos JD. Quality of care in patients with psoriasis: an initial clinical study of an international disease management programme. J Eur Acad Dermatol Venereol. 2005;19(1):35-41.
24. Tucker R, Stewart D. Assessing the impact of community pharmacist led educational advice on knowledge, disease severity and quality of life in patients with mild to moderate psoriasis. Int J Pharm Pract. 2016;24:22.
25. Wahl AK, Moum T, Robinson HS, Langeland E, Larsen MH, Krogstad AL. Psoriasis Patients’ Knowledge about the Disease and Treatments. Dermatol Res Pract. 2013;2013:921737-.
2. Expert survey & Interviews:
[Work in progress]
How to set up your own programme
Key things to consider:
- 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)
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)
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
- 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.
- 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
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.
The main goal is to help you to better cope with psoriasis. You can learn 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 email@example.com or firstname.lastname@example.org
List of places with programmes [work in progress].
- 2019/04/18 Focus on...SPIN Congress 2019 in Paris coming soon
- 2019/04/17 Focus on...Do not miss Spin Congress 2019 highlights
- 2018/07/16 Focus on...SPIN Sister Society Meeting at the EADV - 12 September 2018
- 2018/07/09 Focus on...SPIN 2019 Congress Website is Open !
- 2018/07/16SPIN Symposium at the Spring continental meeting - Tehran, 25-27 April 2018
News from the web office
- 2017/06/05PIN becomes SPIN - Skin Inflammation & Psoriasis International Network
- 2016/10/29PSO 2016 Congress - Webcasts Available!
- 2016/05/26PIN Survey on Phototherapy
- 2016/02/20PIN Study on Therapeutic Patient Education
- 2016/02/19World Directory of Psoriasis Medical Resources - February 2016 Update
- 2019/04/18 Focus on...SPIN Congress 2019 in Paris coming soon
- 2018/07/16SPIN Symposium at the Spring continental meeting - Tehran, 25-27 April 2018
- 2018/02/222nd National Meeting of the Egyptian Society for Psoriasis
- 2018/02/211st Psoriasis Symposium - Sarajevo 2017
- 2017/06/2815th São Paulo Meeting of Psoriasis and Vitiligo
News from medical groups
- 2018/04/183rd Turkish National Psoriasis Symposium
- 2017/06/21Brazilian Center for Psoriasis Studies joins SPIN!
- 2017/06/21Costa Rica Psoriasis Group - Meet them!
- 2017/02/02Works of the 1st Senegalese Psoriasis Day published!
- 2016/07/29Swiss S1 Guidelines for Systemic treatment of psoriasis vulgaris
News from patients associations
- 2017/02/08France Psoriasis - 2016 World Psoriasis Day
- 2016/05/26Senegal Patients Association joins PIN!
- 2015/08/04Epidermia Greece: a new partner association of PIN
- 2015/08/01Canadian Association of Psoriasis Patients joins PIN!
- 2015/04/09AEPSO Argentina launches digital map to find people with psoriasis in the country
Recent publications on Psoriasis and Atopic Dermatitis
Moderate-to-severe psoriasis and pregnancy: impact on fertility, pregnancy outcome and treatment perspectives.
G Ital Dermatol Venereol. 2019 Jun , 154, (3):305-314.
Psoriasis affects 2-4% of the world's population, with no difference between men and women and 70% of patients experiencing disease onset before the age of 40, which coincides with the reproductive years. Few data are available from literature on impact of psoriasis on fertility, course and outcome of pregnancy and risk associated with treatments. Recent studies on other immune-mediated inflammatory diseases, among which psoriasis is also included, indicate that rheumatoid arthritis and (...)see on pubmed
Squamous cell carcinoma-related antigen 2 level is a reliable indicator of severe psoriasis involving the face.
G Ital Dermatol Venereol. 2019 Jun , 154, (3):374-375.
Dimethyl fumarate: Regulatory effects on the immune system in the treatment of multiple sclerosis.
J. Cell. Physiol.. 2019 Jul , 234, (7):9943-9955.
Dimethyl fumarate (DMF) is an important oral treatment option for various autoimmune diseases, such as multiple sclerosis (MS) and psoriasis. DMF and its dynamic metabolite, monomethyl fumarate (MMF) are the major compounds that exert therapeutic effects on several pathologic conditions in part, through downregulation of immune responses. The exact mechanism of DMF is yet to be fully understood even though its beneficial effects on the immune system are extensively studied. It has been (...)see on pubmed
Leukocyte Telomere Length Reflects Prenatal Stress Exposure, But Does Not Predict Atopic Dermatitis Development at 1 Year.
Allergy Asthma Immunol Res. 2019 May , 11, (3):357-366.
Prenatal maternal stress affects offspring's atopic dermatitis (AD) development, which is thought to be mediated by the oxidative stress. We aimed to evaluate the difference in leukocyte telomere length (LTL), a marker for exposure to oxidative stress, according to the prenatal stress exposure and the later AD development.see on pubmed
Silver nanoparticles assessment in moisturizing creams by ultrasound assisted extraction followed by sp-ICP-MS.
Talanta. 2019 May 15, 197:530-538.
Advances on nanometrology require reliable sample pre-treatment methods for extracting/isolating nanomaterials from complex samples. The current development deals with a discontinuous ultrasonication (60% amplitude, 15 cycles of ultrasound treatment for 59 s plus relaxing stage for 59 s, 20 mL of methanol) method for a fast and quantitative extraction of silver nanoparticles (Ag NPs) from moisturizing creams. Possibilities offered by modern inductively coupled plasma mass spectrometry (ICP-MS) (...)see on pubmed
Effect of cinnamamides on atopic dermatitis through regulation of IL-4 in CD4 cells.
J Enzyme Inhib Med Chem. 2019 Dec , 34, (1):613-619.
This study aimed to evaluate the effects of cinnamamides on atopic dermatitis (AD) and the mechanisms underlying these effects. To this end, the actions of two cinnamamides, (E)-3-(4-hydroxyphenyl)-N-phenylethyl acrylamide (NCT) and N-trans-coumaroyltyramine (NCPA), were determined on AD by orally administering them to mice. Oral administration of the cinnamamides ameliorated the increase in epidermal and dermal thickness as well as mast cell infiltration. Cinnamamides suppressed serum (...)see on pubmed