Special Interest Groups (SIGs)

SIG coordinators:
Sonja Ständer, Germany
Jacek C. Szepietowksi, Poland
Toshi Ebata, 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
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:

Blome C, Augustin M, Siepmann D, et al. Measuring patient-relevant benefits in pruritus treatment: development and validation of a specific outcomes tool. Br J Dermatol 2009; 161:1143-1148.

European Guideline on Chronic Pruritus
In cooperation with the European Dermatology Forum (EDF) and the European Academy of Dermatology and Venereology (EADV). Please click here to open the .pdf version of this paper.

Fritz F, Blome C, Augustin M, et al. Differences in patient and physician assessment of a dynamic patient reported outcome tool for chronic pruritus. J Eur Acad Dermatol Venereol. 2016; 30:962-5

Furue M, Ebata T, Ikoma A, et al. Verbalizing extremes of the visual analogue scale for pruritus: a consensus statement. Acta Derm Venereol. 2013; 93:214-5. Please click here to open the pdf version of this paper.

Gernart M, Tsianakas A, Zeidler C, et al. ItchApp©: An App-based eDiary for Assessment of Chronic Pruritus in Clinical Trials. Acta Derm Venereol. 2016 in press

Pereira MP, Ständer S. Assessment of severity and burden of pruritus. Allergol Int. 2017; 66: 3-7.

Phan NQ, Blome C, Fritz F, et al. Assessment of pruritus intensity: prospective study on validity and reliability of the visual analogue scale, numerical rating scale and verbal rating scale in 471 patients with chronic pruritus. Acta Derm Venereol. 2012; 92:502-7.

Reich A, Heisig M, Phan NQ, et al. Visual analogue scale: evaluation of the instrument for the assessment of pruritus. Acta Derm Venereol. 2012; 92:497-501

Reich A, Riepe C, Anastasiadou Z, et al. Itch Assessment with Visual Analogue Scale and Numerical Rating Scale: Determination of Minimal Clinically Important Difference in Chronic Itch. Acta Derm Venereol. 2016; 96:978-980.

Reich A, Chatzigeorkidis E, Zeidler C, Osada N, Furue M, Takamori K, Ebata T, Augustin M, Szepietowski JC, Ständer S. Tailoring the cut-off values of the visual analogue scale (VAS) and numeric rating scale (NRS) in itch assessment. Acta Derm Venereol 2017; 97:759-760

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 Oct 3. doi: 10.2340/00015555-3332. [Epub ahead of print].

Schnitzler C, Rosen J, Szepietowski JC, Reich A, Yosipovitch G, Reszke R, Nattkemper LA, Osada N, Pihan D, Ständer S, Zeidler C. Validation of “ItchApp©” in Poland and in the USA: Multicenter validation study of an electronical Diary for the Assessment of pruritus. J Eur Acad Dermatol Venereol 2019; 33: 398-404

Soto-Rey I, Rehr M, Bruland P, Zeidler C, Riepe C, Steinke S, Ständer S, Dugas M, Storck M. Electronic Collection of Multilingual Patient Reported Outcomes Across Europe. Methods Inf Med. 2018; 57(S 02):e107-e114

Soto-Rey I, Hardt T, Hollenberg L, Bruland P, Ständer S, Dugas M, Storck M. Electronic Image Documentation of Patient Reported Outcomes Using Mobile Technologies. Stud Health Technol Inform. 2019; 264:1779-1780. doi: 10.3233/SHTI190644.

Schoch D, Sommer R, Augustin M, Ständer S, Blome C. Patient-reported outcome measures in pruritus: A systematic review of measurement properties. J Invest Dermatol 2017; 137: 2069-2077

Ständer S, Augustin M, Reich A, Blome C, Ebata T, Phan NQ, Szepietowski JC; International Forum for the Study of Itch Special Interest Group Scoring Itch in Clinical Trials.. Pruritus assessment in clinical trials: consensus recommendations from the International Forum for the Study of Itch (IFSI) Special Interest Group Scoring Itch in Clinical Trials. Acta Derm Venereol. 2013; 93: 509-14

Ständer S, Blome C, Anastasiadou Z, et al. Dynamic pruritus score: evaluation of the validity and reliability of a new instrument to assess pruritus course. Acta Dermato Venereol 2016, in press doi: 10.2340/00015555-2494. [Epub ahead of print]

Ständer S, Blome C, Breil B, et al. [Assessment of pruritus - current standards and implications for clinical practice : consensus paper of the Action Group Pruritus Parameter of the International Working Group on Pruritus Research (AGP)]. Hautarzt. 2012; 63: 521-2, 524-31.

Ständer S, Weisshaar E, Mettang T, et al. Clinical classification of itch: A position paper of the International Forum for the Study of Itch. Acta Dermatol Venerol 2007, 87: 291-294. here to open the .pdf version of this paper.

Steinke S, Bruland P, Blome C, et al. Chronic pruritus: evaluation of patient needs and treatment goals with a special regard to differences according to pruritus classification and sex. Br J Dermatol. 2016. doi: 10.1111/bjd.14910. [Epub ahead of print]

Storck M, Zeidler Z, Rehr M, Riepe C, Dugas M, Ständer S, Soto-Rey I. Validation of pruritus measures gathered with the electronic patient-reported outcome system MoPat. Acta Derm Venereol. 2018; 98: 38-43

Stumpf A, Pfleiderer B, Fritz F, Osada N, Chen SC, Ständer S. Assessment of Quality of Life in Chronic pruritus: Relationship between the ItchyQoL and DLQI in 1150 patients. Acta Derm Venereol 2018; 98: 142-143

Suilmann T, Zeidler C, Osada N, Riepe C, Ständer S. Usability of Validated Sleep-assessment Questionnaires in Patients with Chronic Pruritus: An Interview-based Study. Acta Derm Venereol 2018; 98: 722-727

Verweyen E, Ständer S, 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 Dermatol Venereol 2019, doi: 10.2340/00015555-3158

Zeidler C, Steinke S, Riepe C, Bruland P, Soto-Rey I, Storck M, Garcovich S, Blome C, Bobko S, Legat FJ, Lvov A, Misery L, Weger W, Reich A, Şavk E, Streit M, Serra-Baldrich E, Szepietowski JC, Yosipovitch G, Chen SC, Dugas M, Ständer S. Cross- European validation of the ItchyQoL in pruritic dermatoses. J Eur Acad Dermatol Venereol 2019; 33:391-397

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:

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

Publications:

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

Evers, A.W.M., Peerdeman, K.J., & Van Laarhoven, A.I.M. (2019). What is new in the psychology of chronic itch? Experimental Dermatology 2019; 28: 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 2018; Sep 18. doi: 10.2340/00015555-3040

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