Idiopathic inflammatory myopathies: Narrative review of unmet needs in clinical practice guidelines

Alain Meyer, Carlo Alberto Scirè, Rosaria Talarico, Tobias Alexander, Zahir Amoura, Tadej Avcin, Simone Barsotti, Lorenzo Beretta, Jelena Blagojevic, Gerd Burmester, Ilaria Cavazzana, Patrick Cherrin, Laura Damian, Andrea Doria, João Eurico Fonseca, Federica Furini, Ilaria Galetti, Frederic Houssiau, Thomas Krieg, Larosa MaddalenaDavid Launay, Raquel Campanilho-Marques, Thierry Martin, Marco Matucci-Cerinic, Pia Moinzadeh, Carlomaurizio Montecucco, Maria Francisca Moraes-Fontes, Luc Mouthon, Rossella Neri, Sabrina Paolino, Yves Piette, Simona Rednic, Farah Tamirou, Angela Tincani, Natasa Toplak, Stefano Bombardieri, Eric Hachulla, Ulf Mueller-Ladner, Matthias Schneider, Vanessa Smith, Ana Vieira, Maurizio Cutolo, Marta Mosca, Lorenzo Cavagna

Research output: Contribution to journalReview article

Abstract

Idiopathic inflammatory myopathies (IIMs) encompass a heterogeneous group of rare autoimmune diseases characterised by muscle weakness and inflammation, but in antisynthetase syndrome arthritis and interstitial lung disease are more frequent and often inaugurate the disease. Clinical practice guidelines (CPGs) have been proposed for IIMs, but they are sparse and heterogeneous. This work aimed at identifying: i) current available CPGs for IIMs, ii) patients ' and clinicians' unmet needs not covered by CPGs. It has been performed in the framework of the European Reference Network on rare and complex connective tissue and musculoskeletal diseases (ReCONNET), a network of centre of expertise and patients funded by the European Union's Health Programme. Fourteen original CPGs were identified, notably recommending that: i) extra-muscular involvements should be assessed; ii) corticosteroids and methotrexate or azathioprine are first-line therapies of IIMs. ii) IVIG is a treatment of resistant-DM that may be also used in other resistant-IIMs; iii) physical therapy and sun protection (in DM patients) are part of the treatment; v) tumour screening for patients with DM include imaging of chest, abdomen, pelvis and breast (in woman) along with colonoscopy (in patients over 50 years); vi) disease activity and damages should be monitor using standardised and validated tools. Yet, only half of these CPGs were evidence-based. Crucial unmet needs were identified both by patients and clinicians. In particular, there was a lack of large multidisciplinary working group and of patients ' preferences. The following fields were not or inappropriately targeted: diagnosis; management of extra-muscular involvements other than skin; co-morbidities and severe manifestations.

Original languageEnglish
Article numbere000784
JournalRMD Open
Volume4
DOIs
Publication statusPublished - Feb 1 2019

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Myositis
Practice Guidelines
Musculoskeletal Diseases
Connective Tissue Diseases
Patient Preference
Intravenous Immunoglobulins
Interstitial Lung Diseases
Muscle Weakness
Azathioprine
Solar System
European Union
Colonoscopy
Therapeutics
Rare Diseases
Pelvis
Methotrexate
Abdomen
Autoimmune Diseases
Arthritis
Adrenal Cortex Hormones

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Immunology

Cite this

Idiopathic inflammatory myopathies : Narrative review of unmet needs in clinical practice guidelines. / Meyer, Alain; Scirè, Carlo Alberto; Talarico, Rosaria; Alexander, Tobias; Amoura, Zahir; Avcin, Tadej; Barsotti, Simone; Beretta, Lorenzo; Blagojevic, Jelena; Burmester, Gerd; Cavazzana, Ilaria; Cherrin, Patrick; Damian, Laura; Doria, Andrea; Fonseca, João Eurico; Furini, Federica; Galetti, Ilaria; Houssiau, Frederic; Krieg, Thomas; Maddalena, Larosa; Launay, David; Campanilho-Marques, Raquel; Martin, Thierry; Matucci-Cerinic, Marco; Moinzadeh, Pia; Montecucco, Carlomaurizio; Moraes-Fontes, Maria Francisca; Mouthon, Luc; Neri, Rossella; Paolino, Sabrina; Piette, Yves; Rednic, Simona; Tamirou, Farah; Tincani, Angela; Toplak, Natasa; Bombardieri, Stefano; Hachulla, Eric; Mueller-Ladner, Ulf; Schneider, Matthias; Smith, Vanessa; Vieira, Ana; Cutolo, Maurizio; Mosca, Marta; Cavagna, Lorenzo.

In: RMD Open, Vol. 4, e000784, 01.02.2019.

Research output: Contribution to journalReview article

Meyer, A, Scirè, CA, Talarico, R, Alexander, T, Amoura, Z, Avcin, T, Barsotti, S, Beretta, L, Blagojevic, J, Burmester, G, Cavazzana, I, Cherrin, P, Damian, L, Doria, A, Fonseca, JE, Furini, F, Galetti, I, Houssiau, F, Krieg, T, Maddalena, L, Launay, D, Campanilho-Marques, R, Martin, T, Matucci-Cerinic, M, Moinzadeh, P, Montecucco, C, Moraes-Fontes, MF, Mouthon, L, Neri, R, Paolino, S, Piette, Y, Rednic, S, Tamirou, F, Tincani, A, Toplak, N, Bombardieri, S, Hachulla, E, Mueller-Ladner, U, Schneider, M, Smith, V, Vieira, A, Cutolo, M, Mosca, M & Cavagna, L 2019, 'Idiopathic inflammatory myopathies: Narrative review of unmet needs in clinical practice guidelines', RMD Open, vol. 4, e000784. https://doi.org/10.1136/rmdopen-2018-000784
Meyer, Alain ; Scirè, Carlo Alberto ; Talarico, Rosaria ; Alexander, Tobias ; Amoura, Zahir ; Avcin, Tadej ; Barsotti, Simone ; Beretta, Lorenzo ; Blagojevic, Jelena ; Burmester, Gerd ; Cavazzana, Ilaria ; Cherrin, Patrick ; Damian, Laura ; Doria, Andrea ; Fonseca, João Eurico ; Furini, Federica ; Galetti, Ilaria ; Houssiau, Frederic ; Krieg, Thomas ; Maddalena, Larosa ; Launay, David ; Campanilho-Marques, Raquel ; Martin, Thierry ; Matucci-Cerinic, Marco ; Moinzadeh, Pia ; Montecucco, Carlomaurizio ; Moraes-Fontes, Maria Francisca ; Mouthon, Luc ; Neri, Rossella ; Paolino, Sabrina ; Piette, Yves ; Rednic, Simona ; Tamirou, Farah ; Tincani, Angela ; Toplak, Natasa ; Bombardieri, Stefano ; Hachulla, Eric ; Mueller-Ladner, Ulf ; Schneider, Matthias ; Smith, Vanessa ; Vieira, Ana ; Cutolo, Maurizio ; Mosca, Marta ; Cavagna, Lorenzo. / Idiopathic inflammatory myopathies : Narrative review of unmet needs in clinical practice guidelines. In: RMD Open. 2019 ; Vol. 4.
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abstract = "Idiopathic inflammatory myopathies (IIMs) encompass a heterogeneous group of rare autoimmune diseases characterised by muscle weakness and inflammation, but in antisynthetase syndrome arthritis and interstitial lung disease are more frequent and often inaugurate the disease. Clinical practice guidelines (CPGs) have been proposed for IIMs, but they are sparse and heterogeneous. This work aimed at identifying: i) current available CPGs for IIMs, ii) patients ' and clinicians' unmet needs not covered by CPGs. It has been performed in the framework of the European Reference Network on rare and complex connective tissue and musculoskeletal diseases (ReCONNET), a network of centre of expertise and patients funded by the European Union's Health Programme. Fourteen original CPGs were identified, notably recommending that: i) extra-muscular involvements should be assessed; ii) corticosteroids and methotrexate or azathioprine are first-line therapies of IIMs. ii) IVIG is a treatment of resistant-DM that may be also used in other resistant-IIMs; iii) physical therapy and sun protection (in DM patients) are part of the treatment; v) tumour screening for patients with DM include imaging of chest, abdomen, pelvis and breast (in woman) along with colonoscopy (in patients over 50 years); vi) disease activity and damages should be monitor using standardised and validated tools. Yet, only half of these CPGs were evidence-based. Crucial unmet needs were identified both by patients and clinicians. In particular, there was a lack of large multidisciplinary working group and of patients ' preferences. The following fields were not or inappropriately targeted: diagnosis; management of extra-muscular involvements other than skin; co-morbidities and severe manifestations.",
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AU - Meyer, Alain

AU - Scirè, Carlo Alberto

AU - Talarico, Rosaria

AU - Alexander, Tobias

AU - Amoura, Zahir

AU - Avcin, Tadej

AU - Barsotti, Simone

AU - Beretta, Lorenzo

AU - Blagojevic, Jelena

AU - Burmester, Gerd

AU - Cavazzana, Ilaria

AU - Cherrin, Patrick

AU - Damian, Laura

AU - Doria, Andrea

AU - Fonseca, João Eurico

AU - Furini, Federica

AU - Galetti, Ilaria

AU - Houssiau, Frederic

AU - Krieg, Thomas

AU - Maddalena, Larosa

AU - Launay, David

AU - Campanilho-Marques, Raquel

AU - Martin, Thierry

AU - Matucci-Cerinic, Marco

AU - Moinzadeh, Pia

AU - Montecucco, Carlomaurizio

AU - Moraes-Fontes, Maria Francisca

AU - Mouthon, Luc

AU - Neri, Rossella

AU - Paolino, Sabrina

AU - Piette, Yves

AU - Rednic, Simona

AU - Tamirou, Farah

AU - Tincani, Angela

AU - Toplak, Natasa

AU - Bombardieri, Stefano

AU - Hachulla, Eric

AU - Mueller-Ladner, Ulf

AU - Schneider, Matthias

AU - Smith, Vanessa

AU - Vieira, Ana

AU - Cutolo, Maurizio

AU - Mosca, Marta

AU - Cavagna, Lorenzo

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N2 - Idiopathic inflammatory myopathies (IIMs) encompass a heterogeneous group of rare autoimmune diseases characterised by muscle weakness and inflammation, but in antisynthetase syndrome arthritis and interstitial lung disease are more frequent and often inaugurate the disease. Clinical practice guidelines (CPGs) have been proposed for IIMs, but they are sparse and heterogeneous. This work aimed at identifying: i) current available CPGs for IIMs, ii) patients ' and clinicians' unmet needs not covered by CPGs. It has been performed in the framework of the European Reference Network on rare and complex connective tissue and musculoskeletal diseases (ReCONNET), a network of centre of expertise and patients funded by the European Union's Health Programme. Fourteen original CPGs were identified, notably recommending that: i) extra-muscular involvements should be assessed; ii) corticosteroids and methotrexate or azathioprine are first-line therapies of IIMs. ii) IVIG is a treatment of resistant-DM that may be also used in other resistant-IIMs; iii) physical therapy and sun protection (in DM patients) are part of the treatment; v) tumour screening for patients with DM include imaging of chest, abdomen, pelvis and breast (in woman) along with colonoscopy (in patients over 50 years); vi) disease activity and damages should be monitor using standardised and validated tools. Yet, only half of these CPGs were evidence-based. Crucial unmet needs were identified both by patients and clinicians. In particular, there was a lack of large multidisciplinary working group and of patients ' preferences. The following fields were not or inappropriately targeted: diagnosis; management of extra-muscular involvements other than skin; co-morbidities and severe manifestations.

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