Special Interest Groups (SIGs)

SIG coordinators:
Sonja Ständer, Germany
Jacek C. Szepietowksi, Poland
Yozo Ishiuji, Japan
Gil Yosipovitch, USA

The dramatic growth in publications and clinical trials related to chronic pruritus is a reflection of developments in associated research and patient care. As our knowledge expands, it becomes more and more important for clinicians and researchers to have a platform for small focus groups to discuss highly specific issues in depth. To accomplish this, various special interest groups (SIGs) have been founded by the International Forum for the Study of Itch (IFSI).
The SIGs aim to provide participating members an opportunity to carry on intensive, in-depth discussions in certain areas of interest. Membership in SIGs is open to any member of the IFSI. IFSI members wishing to join a SIG should indicate their preference by sending an e-mail to the IFSI office directly or, alternatively, to a SIG chair.
Some papers released by the SIG below can be found below. For further SIG publications, please refer to the website of Acta Dermato-Venereologica:
https://www.medicaljournals.se/acta/.

Report of the
1st Global SIG Day of the International Forum for the Study of Itch (IFSI)
(10th World Congress on Itch, November 17, 2019, Sydney, Australia)

Current SIGs

1. Itch Terminology, Guidelines and Assessment
   Covers the topics:
   A. Terminology and guidelines, Scoring Itch in Clinical Trials
   B. Questionnaires for Itch
2. Itch in Systemic diseases
   Includes the previous SIGs Paraneoplastic Itch, Uremic Itch
3. Sensitive Skin
4. Psychological factors in itch

I SIG: Terminology, Guidelines and Assessment

SIG A: Terminology and guidelines; Scoring Itch in Clinical Trials

Chair: S. Ständer, J. Szepietowski, M. Augustin

Founded: 2007 / 2008

Language is dynamic and underlies adaptation and changes corresponding to the development of new techniques and lifestyles. Most of the terms currently used for different types of pruritus were created decades ago. In 2007, the IFSI created its first SIG (Definition of terms and classifications concerning chronic pruritus) and published a clinical classification of pruritus. Discussions on the definition of a first version of the IFSI’s clinical classification for pruritus had already shown that an in-depth discussion and formation of a Special Interest Group (SIG) was necessary. This SIG aims to generate continuous discussion about related terms and definitions. Results will be published on the homepage of the IFSI, as well as in journals (specific journals remain to be determined), after members have achieved a consensus.

Chronic pruritus poses a dilemma across the globe and there is an urgent need to test new anti-pruritic substances in high-quality clinical trials. It remains a multidimensional, subjective symptom for which there is no widely accepted, standardized and validated assessment method. Patients report on the individual pruritus intensity, quality, localization, duration, course, and scratching behavior, as well as provide interindividual variations regarding the impact on quality of life, sleep disturbances and psychosomatic factors results. This SIG was established to develop and validate scoring methods and questionnaires for use in clinical trials.


Meetings: During WCI
Contact: sonja.staender@uni-muenster.de

Current projects:

- Participation in IDEOM initiated new definition of itch

- Update of the guideline für chronic (nodular) prurigo

- Global harmonization of instruments for assessment of chronic (nodular) prurigo

- Validation of itch intensity instruments

Consensus among participants already achieved for:

1. Acute pruritus: up to 6 weeks
   Chronic pruritus: lasting 6 weeks or longer
2. Somatoform pruritus: pruritus of psychosomatic/psychiatric origin
3. Pruritus sine materia: should no longer be used
   Alternative: Pruritus of unknown/undetermined origin, pruritus on non-inflamed/normal skin
4. Chronic Pruritus of unknown origin (CPUO):
   - can be used interchangeably with “itch of undetermined pruritus (IUO)”
   - should be used for patients for which a) no diagnostics are performed and whose history does not suggest an origin for the pruritus; or b) in patients with pruritus of unknown origin post-diagnostics
5. Senile pruritus: should no longer be used
   Alternative: pruritus of advanced age, pruritus in the elderly

Publications:

Ständer S, Zeidler C, Pereira M, Szepietowski JC, McLeod L, Qin S, Williams N, Sciascia T, Augustin M. Worst itch numerical rating scale for prurigo nodularis: a psychometric evaluation. J Eur Acad Dermatol Venereol 2022;36(4):573-581

Ständer S, Augustin M, Berger T, Elmariah S, Korman NJ, Weisshaar E, Yosipovitch G. Prevalence of prurigo nodularis in the United States of America: A retrospective database analysis. JAAD Int 2020;2:28-30

Topp J, Apfelbacher C, Ständer S, Augustin M, Blome C. Measurement Properties of Patient-Reported Outcome Measures for Pruritus: An Updated Systematic Review. J Invest Dermatol 2022;142(2):343-354

Augustin M, Garbe C, Hagenström K, Petersen J, Pereira MP, Ständer S. Prevalence, incidence and presence of comorbidities in patients with prurigo and pruritus in Germany: A population-based claims data analysis. J Eur Acad Dermatol Venereol 2021;35(11):2270-2276

Storck M, Sandmann S, Bruland P, Pereira MP, Steinke S, Riepe C, Soto-Rey I, Garcovich S, Augustin M, Blome C, Bobko S, Legat FJ, Potekaev N, Lvov A, Misery L, Weger W, Reich A, Şavk E, Streit M, Serra-Baldrich E, Szepietowski JC, Dugas M, Ständer S, Zeidler C. Pruritus Intensity Scales across Europe: a prospective validation study. J Eur Acad Dermatol Venereol 2021;35(5):1176-1185

Pereira MP, Zeidler C, Wallengren J, Halvorsen JA, Weisshaar E, Garcovich S, Misery L, Brenaut E, Şavk E, Potekaev N, Lvov A, Bobko S, Szepietowski JC, Reich A, Bozek A, Legat FJ, Metz M, Streit M, Serra-Baldrich E, Gonçalo M, Storck M, Nau T, Hoffmann V, Steinke S, Greiwe I, Dugas M, Augustin M, Ständer S. Chronic Nodular Prurigo: A European Cross-sectional Study of Patient Perspectives on Therapeutic Goals and Satisfaction. Acta Derm Venereol 2021;101(2):adv00403

Zeidler C, Pereira MP, Augustin M, Spellman M, Ständer S. Investigator's Global Assessment of Chronic Prurigo: A New Instrument for Use in Clinical Trials. Acta Derm Venereol 2021;101(2):adv00401

Riepe C, Osada N, Reich A, Augustin M, Zeidler C, Ständer S. Minimal Clinically Important Difference in Chronic Pruritus Appears to be Dependent on Baseline Itch Severity. Acta Derm Venereol 2019;99(13):1288-1290

Verweyen E, Ständer S, Kreitz K, Höben I, Osada N, Gernart M, Riepe C, Pereira M, Blome C, Augustin M, Zeidler C. Validation of a Comprehensive Set of Pruritus Assessment Instruments: The Chronic Pruritus Tools Questionnaire PRURITOOLS. Acta Derm Venereol 2019;99(7):657-663

SIG B: Questionnaires for Itch

Chair: Elke Weisshaar, Uwe Gieler, Gil Yosipovitch
Founded: 2011

The assessment of itch and its associated effects is a significant component of clinical practice in itch management. Despite itch being a common complaint, there are few studies describing the use of structured questionnaires for the evaluation and measurement of itch and its sensory and affective dimensions. This SIG was initiated to evaluate the various psychometric properties of itch questionnaires and to achieve consensus on an individual questionnaire to be used globally.

Meetings: During WCI

Contact: Elke.Weisshaar@med.uni-heidelberg.de

Publications:

Dominick F, van Laarhoven AIM, Evers AWM, Weisshaar E. A systematic review of questionnaires on itch by the Special Interest Group "Questionnaires" of the International Forum for the Study of Itch (IFSI). ITCH 2019:4:e26

Weisshaar E, Gieler U, Kupfer J, et al. International Forum on the Study of Itch.. Questionnaires to assess chronic itch: a consensus paper of the special interest group of the International Forum on the Study of Itch. Acta Derm Venereol. 2012; 92:493-6
This first consensus paper addresses which domains and structure of itch questionnaires need to be implemented to better assess chronic itch and guideline-recommended therapies. Please click here to open the .pdf version of this paper.

II SIG: Itch in Systemic Disease

Chair: Thomas Mettang, Andreas Kremer
Founded: 2019
Includes the former SIG paraneoplastic itch (founded 2011) and uremic itch (founded 2013)

Chronic pruritus is a common symptom in various systemic diseases among which are chronic-kidney disease (uremic itch), hepatobiliary disorders (hepatic itch), lymphoproliferative diseases as well as malignancies (paraneoplastic itch). The term ‘paraneoplastic itch’ is used to describe itch in patients with hematological malignancies or solid tumor. While paraneoplastic itch due to hematological malignancies such as lymphoma is relatively frequent, it is extremely rare in solid tumors. Uremic itch is a frequent and very excruciating symptom in patients with advanced or end-stage renal failure. Hepatic itch is seen in various hepatobiliary diseases with very variable frequency from the defining symptom in intrahepatic cholestasis of pregnancy and certain genetic disorders to low frequencies in chronic viral hepatitis infections. Itch in systemic disease has a strong negative impact on the quality of life. Typically itch occurs in these patients on primarily uneffaced skin, albeit secondary skin changes may occur due to intensive scratching. The pathophysiology of most underlying diseases is only incomplete understood.
This SIG was merged from the SIG uremic pruritus and the SIG paraneoplastic pruritus at the IFSI meeting in Sydney in 2019. The new SIG was developed to adequately represent all systemic disorders associated with chronic itch, to raise the awareness of systemic itch and to create a platform for continuous exchange.

Meetings: During WCI

Contact: andreas.kremer@usz.ch

Publications:

Kremer AE. What are new treatment concepts in systemic itch? Exp Dermatol 2019 Aug 27. doi: 10.1111/exd.14024

Kremer AE, Mettang T. Pruritus in systemic diseases: Common and rare etiologies. Internist (Berl). 2019; 60: 814-820.

Mettang T. Uremic Itch Management. Curr Probl Dermatol. 2016; 50: 133-41.

Weisshaar E, Weiss M, Mettang T, et al. Special Interest Group of the International Forum on the Study of Itch.. Paraneoplastic itch: an expert position statement from the Special Interest Group (SIG) of the International Forum on the Study of Itch (IFSI). Acta Derm Venereol. 2015 Mar;95(3):261-5.

Mettang T, Kremer AE. Uremic pruritus. Kidney Int. 2015; 87: 685-91.

III SIG: Sensitive Skin

Chair: Laurent Misery
Founded: 2015

Sensitive skin is a frequent complaint in the general population and among patients with itch. The International Forum for the Study of Itch (IFSI) decided to initiate a special interest group (SIG) for sensitive skin. Using the Delphi method, sensitive skin was defined as "a syndrome defined by the occurrence of unpleasant sensations (stinging, burning, pain, pruritus and tingling sensations) in response to stimuli that normally should not provoke such sensations. These unpleasant sensations cannot be explained by lesions attributable to any skin disease. The skin can appear normal or be accompanied by erythema. Sensitive skin can affect all body locations, especially the face". This paper summarizes the background and unresolved aspects of sensitive skin, as well as the process involved in the development of this definition. More recently, the SIG performed a long work on the pathophysiology and management of sensitive skin and published it.

Meetings: During WCI and other congresses

Contact: laurent.misery@chu-brest.fr

Publications:

Misery L, Weisshaar E, Brenaut E, Evers AWM, Huet F, Ständer S, Reich A, Berardesca E, Serra-Baldrich E, Wallengren J, Linder D, Fluhr JW, Szepietowski JC, Maibach H. Pathophysiology and management of sensitive skin: position paper from the special interest group on sensitive skin of the International Forum for the Study of Itch (IFSI). J Eur Acad Dermatol Venereol 2019 Oct 28 doi: 10.1111/jdv.16000. [Epub ahead of print]

Misery L, Ständer S, Szepietowski JC, Reich A, Wallengren J, Evers AW, Takamori K, Brneaut E, Le Gall-Ianotto C, Flhur J, Berardesca E, Weisshaar E. Definition of Sensitive Skin: An Expert Position Paper from the Special Interest Group on Sensitive Skin of the International Forum for the Study of Itch. Acta Derm Venereol. 2017; 96: 4-6

IV SIG: Psychological factors in itch

Chairs: Andrea W.M. Evers and Jörg Kupfer
Founded 2019

Itch is regarded as unpleasant or bothersome and is accompanied by symptoms of distress and impairments in daily life. Biopsychosocial models describe how psychological factors can contribute to the improvement or exacerbation of itch and related scratching behavior. The SIG Psychological factors in itch focuses on 3 main themes: 1) Psychological determinants of itch and its measurements (e.g. itch cognitions), 2) Psychological treatments of itch (e.g. cognitive behavior therapy focusing on itch), and 3) Psychoneurobiological mechanisms of itch (e.g. brain-skin axis mediators).

Meetings: During WCI

Contact: a.evers@fsw.leidenuniv.nl

The current three main topics are:

     - Experts’ opinions about psychological assessment, treatments and referral of patients with chronic itch (first draft)
     - How effective are psychological interventions in the treatment of chronic itch? A systematic review and meta-analysis
     - Psychoneuroimmunological aspect of itch. A systematic review (in preparation)

Publications:

The following publications are examples of relevant reviews or collaboration papers in this area:

Blythe, J. S., Peerdeman, K. J., Veldhuijzen, D. S., van Schothorst, M. M., Thomaïdou, M. A., van Laarhoven, A. I., & Evers, A. W. Nocebo Effects on Cowhage-evoked Itch: A Randomized Controlled Trial of Classical Conditioning and Observational Learning. Acta Derm Venereol 2021; 101(1):adv00370

Thomaidou, M.A., Blythe, J.S., Peerdeman, K.J., van Laarhoven, A.I.M., Van Schothorst, M.M.E., Veldhuijzen, D.S., Evers, A.W.M. Learned nocebo effects on cutaneous sensations of pain and itch: A systematic review and meta-analysis of experimental behavioral studies on healthy humans. Psychosom Med 2023; 85(4):308-321

Lüßmann K, Montgomery K, Thompson A, Gieler U, Zick C, Kupfer J, Schut C. Mindfullnes as Predictor of Itch Catastrophizing in Patients With Atopic Dermatitis: Results of a Cross-Sectional Questionnaire Study. Front Med 2021; 8:627611

Kiupel S, Kupfer J, Kottlors S, Gieler U, Yosipovitch G, Schut C. Is stress related to itch in German students? Results of an online survey. Front Med 2023; 10:1104110

Evers, A.W.M., Peerdeman, K.J., & Van Laarhoven, A.I.M. What is new in the psychology of chronic itch? Exp Dermatol 2019; 28(12): 1442-1447

Schut C, Dalgard FJ, Halvorsen JA, Gieler U, Lien L, Tomas Aragones L, Poot F, Jemec GB, Misery L, Kemény L, Sampogna F, van Middendorp H, Balieva F, Linder D, Szepietowski JC, Lvov A, Marron SE, Altunay IK, Finlay AY, Salek S, Kupfer J. Occurrence, Chronicity and Intensity of Itch in a Clinical Consecutive Sample of Patients with Skin Diseases: a Multi-centre Study in 13 European Countries. Acta Derm Venereol 2019;99(2):146-151

Dalgard FJ, Svensson A, Halvorsen JA, Gieler U, Schut C, Tomas-Aragones L, Lien L, Poot F, Jemec GBE, Misery L, Szabo C, Linder D, Sampogna F, Spillekom-van Koulil S, Balieba F, Szepietowski J, Lvov A, Marron SE, Altunay IK, Finlay AY, Salek SS, Kupfer J. Itch and Mental Health in Dermatological Patients Across Europe: A CrossSectional Study in 13 Countries. J Invest Dermatol 2020; 140(3): 568-573

Evers AWM, Schut C, Gieler U, Spillekom-van Koulil S, van Beugen S. Itch Management: Psychotherapeutic Approach. In Szepietowski JC, Weisshaar E (eds): Itch – Management in Clinical Practice. Curr Probl Dermatol. 2016 (50): 64-70. Basel, Karger