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Abstract Number: 1662

Developing Guideline For Polymyalgia Rheumatica: Prioritisation Of Outcome Measures – Perspective Of Patients, General Practitioners and Rheumatologists

Yogesh Singh1, Christian Dejaco2,3, Sarah Mackie4, Daniel Ching5, Artur Bachta6, Ajesh Maharaj7, Alexandre Wagner8, Manuela Lima9, David Jayne10, Kevin Barraclough11, Christian D Mallen12, Stephen P. Merry13, Jane Hollywood14, Madeline Whitlock15, Kate Gilbert16, Pamela Hildreth16, Jennifer Nott16, Hannah Padbury16, Jean Miller16, Lorna Neill16, David Tronnier17, Pablo Perel18, Andrew Hutchings19, Dario Camellino20, Steven E. Carsons21, William Docken22, Christina Duftner23, Andy Abril24, Robert F. Spiera25, Colin T. Pease26, Andreas P. Diamantopoulos27, Frank Buttgereit28, Peter V. Balint29, Elisabeth Nordborg30, Lina Bianconi31, Billy Fashanu15, Shunsuke Mori32, Víctor M. Martínez-Taboada33, Maria C. Cid34, Wolfgang A. Schmidt35, Marco A. Cimmino36, Michael Schirmer37, Carlo Salvarani38, Eric L. Matteson39 and Bhaskar Dasgupta40, 1Rheumatology, Southend university hospital, Westcliff-on-sea, United Kingdom, 2Rheumatology and Immunology, Medical University Graz, Graz, Austria, 3Department of Rheumatology and Immunology, Medical University Graz, Graz A-8036, Austria, 4NIHR-Leeds Musculoskeletal Biomedical Research Unit, University of Leeds, Leeds, United Kingdom, 5Timaru Hospital, Timaru, New Zealand, 6Military Medical Institute, Warsaw, Poland, 7Prince Mshiyeni Memorial Hospital, Durban, South Africa, 8Universidade Federal de São Paulo, Sao Paulo, Brazil, 9Universidade dos Açores, Azores, Portugal, 10Vasculitis and Lupus Clinic, Addenbrookes Hospital University of Cambridge, Cambridge, United Kingdom, 11Hoyland House General Practice, Painswick, United Kingdom, 12Arthritis Research UK Primary Care Centre, University of Keele, Keele, United Kingdom, 13Family Medicine, Mayo Clinic, Rochester, MN, 14Rheumatology, Southend Hospital, Southend, United Kingdom, 15Southend University Hospital, Southend, United Kingdom, 16PMRGCAUK, Southend, United Kingdom, 17patients' representative, Rochester, MN, 18London School of Hygiene & Tropical Medicine, London, United Kingdom, 19Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, United Kingdom, 20Dipartimento Medicina Interna, Clinica Reumatologica, Genova, Italy, 21Div of Rheumatology, Winthrop University Hospital, Mineola, NY, 22Brigham Orth & Arthritis Center, Chestnut Hill, MA, 23Internal Medicine, Hopital Kufstein, Kufstein, Austria, 24Rheumatology, Mayo Clinic Florida, Jacksonville, FL, 25Rheumatology, Hospital for Special Surgery, New York, NY, 26Department of Rheumatology, Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom, 27Rheumatology, Hospital of Southern Norway Trust, Kristiansand, Norway, 28Charité - Universitätsmedizin Berlin, Berlin, Germany, 29Rheumatology, National Institute of Rheumatology and Physiotherapy, Budapest, Hungary, 30Sahlgenska University Hospital, Goteborg, Sweden, 31Ambulatorio Medicina Generale, Bibbiano, Italy, 32Clinical Research Center for Rheumatic Diseases, NHO Kumamoto Saishunsou National Hospital, Kumamoto, Japan, 33Rheumatology, Hospital Universitario Marqués de Valdecilla. IFIMAV., Santander, Spain, 34Vasculitis Research Unit, Department of Autoimmune Diseases, Hospital Clínic University of Barcelona, Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Barcelona, Spain, 35Med Ctr Rheumatology Berlin Buch, Immanuel Krankenhaus Berlin, Berlin, Germany, 36Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, University of Genova, Genoa, Italy, 37Internal medicine, Innsbruck Medical University, Innsbruck, Austria, 38Rheumatology, Arcispedale S Maria Nuova-IRCCS, Reggio Emilia, Italy, 39Rheumatology, Mayo Clinic, Rochester, MN, 40Southend University Hospital, Essex, United Kingdom

Meeting: 2013 ACR/ARHP Annual Meeting

Keywords: Outcome measures, patient preferences and polymyalgia rheumatica

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Session Information

Title: Vasculitis II

Session Type: Abstract Submissions (ACR)

Background/Purpose: To explore similarities and differences between rheumatologists (rheum), general practitioners (GP) and patients (pt) regarding the relevance of outcome parameters in polymyalgia rheumatica (PMR).

Methods: This study was part of the ACR/EULAR project for the development of guidelines for PMR. A candidate list of outcome parameters was identified by literature review and input from the guideline development group (GDG) involving rheum, GP and pt. The candidate item list contained 119 outcome measures including symptoms, physical examination findings, laboratory parameters, imaging, composite outcome measures, drug related adverse effects, functional status, quality of life and PMR related complications. A survey-based grading of the candidate outcomes was performed using SurveyMonkey®. We invited 43 rheum (15 with a special interest in PMR), 87 GP (all UK) and 43 pt (all UK) to rate each item based on its relative importance for clinical decisions on a 1-9 point scale (1-3 not important, 4-6 important, but not critical and 7-9 critical). We excluded the rating of a group if >33% of responders marked an item with “don’t know”.

Results:

Thirty-eight rheum (88%; 100% of those with special interest in PMR), 15 (17%) GP and 41 (95%) pt responded. Only 6 (5.0%) parameters were deemed as critical (score ≥7) by all groups [remission, relapse, duration of glucocorticoid (GC) therapy, discontinuation of GC therapy, development of GCA, osteoporosis].

General symptoms such as fatigue, malaise, sleep disturbances, depression or anxiety were more frequently rated as critical by pt (37.5-71.8%) than by rheum (0-26.3%, all p-values ≤0.01). Appraisal of fatigue and malaise was similar by GPs and rheum whereas sleep disturbance, depression and anxiety were similarly graded by GP and pt. Among laboratory and imaging parameters no significant differences between groups were observed mainly because several parameters were marked “don’t know” by a high proportion of pt and GP. GP (57.1%) considered healthcare resource use more relevant than rheum (26.3%, p=0.038) whereas a high proportion of pt did not know about this parameter. Functional status, impact on pt’s career, quality of life, mobility, self-care and usual activities were rated higher by pt (54.8-84.6%) than by rheum (23.7-44.7%, all p-values <0.01). Quality of life, impact on pt’s career, self-care and usual activities were also more relevant for GP (71.4-92.9%) than for rheum (all p-values <0.05).

Conclusion: These data demonstrate a higher relevance of general symptoms, functional status and quality of life to patients with PMR compared with rheumatologists. Ratings of outcome parameters from patients and general practitioners were less discordant than those from patients and rheumatologists.


Disclosure:

Y. Singh,
None;

C. Dejaco,
None;

S. Mackie,
None;

D. Ching,
None;

A. Bachta,
None;

A. Maharaj,
None;

A. Wagner,
None;

M. Lima,
None;

D. Jayne,

Roche Pharmaceuticals,

2,

Genetech,

2,

Mitshubishi,

5,

Takeda,

5,

Roche Pharmaceuticals,

5,

Roche Pharmaceuticals,

8;

K. Barraclough,
None;

C. D. Mallen,
None;

S. P. Merry,
None;

J. Hollywood,
None;

M. Whitlock,
None;

K. Gilbert,
None;

P. Hildreth,
None;

J. Nott,
None;

H. Padbury,
None;

J. Miller,
None;

L. Neill,
None;

D. Tronnier,
None;

P. Perel,
None;

A. Hutchings,
None;

D. Camellino,
None;

S. E. Carsons,
None;

W. Docken,
None;

C. Duftner,
None;

A. Abril,
None;

R. F. Spiera,

Roche Pharmaceuticals,

2,

Novartis Pharmaceutical Corporation,

2,

GlaxoSmithKline,

2;

C. T. Pease,
None;

A. P. Diamantopoulos,
None;

F. Buttgereit,
None;

P. V. Balint,

Abbvie(formerly Abbott), ESAOTE, Roche ,

2,

Abbvie(formerly Abbott), Egis, MSD, Philips, Pfizer, Richter ,

5,

Abbvie(formerly Abbott), Bristol-Myers Squibb, GE, MSD, Philips, Pfizer, Richter, UCB,

8;

E. Nordborg,
None;

L. Bianconi,
None;

B. Fashanu,
None;

S. Mori,
None;

V. M. Martínez-Taboada,
None;

M. C. Cid,
None;

W. A. Schmidt,

Actelion Pharmaceuticals US,

2,

Esaote,

2,

GE Healthcare,

2;

M. A. Cimmino,
None;

M. Schirmer,
None;

C. Salvarani,
None;

E. L. Matteson,
None;

B. Dasgupta,
None.

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