Objectives To explore current management practices for polymyalgia rheumatica (PMR) by general practitioners (GPs) and rheumatologists including implications for clinical trial recruitment. Methods An English language questionnaire was constructed by a working group of rheumatologists and GPs from 6 countries. The questionnaire focused on: 1: Respondent characteristics, 2: Referral practices, 3: Treatment with glucocorticoids, 4: Diagnostics, 5: Comorbidities, and 6: Barriers to research. The questionnaire was distributed to rheumatologists and GPs worldwide via members of the International PMR/giant cell arteritis Study Group. Results In total, 394 GPs and 937 rheumatologists responded to the survey. GPs referred a median of 25% of their suspected PMR patients for diagnosis and 50% of these were returned to their GP for management. In general, 39% of rheumatologists evaluated patients with suspected PMR >2 weeks after referral, and a median of 50% of patients had started prednisolone before rheumatologist evaluation. Direct comparison of initial treatment showed that the percentage prescribing >25 mg prednisolone daily for patients was 30% for GPs and 12% for rheumatologists. Diagnostic imaging was rarely used. More than half (56%) of rheumatologists experienced difficulties recruiting people with PMR to clinical trials. Conclusion This large international survey indicates that a large proportion of people with PMR are not referred for diagnosis, and that the proportion of treatment naïve patients declined with increasing time from referral to assessment. Strategies are needed to change referral and management of people with PMR, to improve clinical practice and facilitate recruitment to clinical trials.
Background In myasthenia gravis (MG), first‐line treatment for MG is acetylcholinesterase inhibitors which alleviates symptoms, but concomitantly may cause autonomic adverse effects. Aims of the study In this study, we evaluated if symptoms of overactive bladder (OAB) are more frequent among MG patients than healthy controls. Methods Eighty‐three MG patients and 50 healthy sex‐ and age‐matched controls were included and answered the questionnaire “International Consultation on Incontinence Questionnaire Overactive Bladder Module” (ICIQ‐OAB), including questions about polyuria, nocturia, urgency, and stress incontinence. Clinical severity of MG was determined based on three standardized clinical evaluations. Results Compared to control subjects, MG patients had a higher total OAB score (median 5 [range 0–12] versus 3 [0; 7]) (p < 0.005) with higher scores concerning all four items. Also, MG patients had a higher bother score (10 [0–40] versus 5 [0–40]) (p < 0.05). Patients receiving a daily dose of pyridostigmine of more than 300 mg had a higher OAB score than other patients. Conclusions Myasthenia gravis patients have more bothering symptoms of OAB than healthy controls, related to the daily dose of pyridostigmine. To minimize adverse effects in patients with symptoms of OAB, the pyridostigmine dose should be as low as possible.
Myasthenia Gravis (MG) is characterised by muscle weakness and increased fatigability. The aim of this pilot study was to investigate if patients with MG demonstrate different functional chewing patterns and report more complaints related to mastication as compared with healthy controls. Twelve patients (median 60 years Q1–Q3: 46–70) with generalised MG and nine healthy controls (median 57 years Q1–Q3: 55–63) participated. All participants underwent dental and oral examination and were asked to fill in a questionnaire concerning oral health. Static maximum bite force was measured with a bite force transducer, electromyography in the masseter, temporalis, and suprahyoid muscles were recorded, and jaw movement was tracked, during a 5-minute gum chewing test. The patients had more oral complaints (oral health impact profile total score 22.6 vs 7.5 P < 0.01) and had lower peak bite force than controls (18.8kgf (11.1;26.4) (95% CI) vs 29.5 kgf (21.6; 37.4) (P = 0.04)). In contrast, fatigability of the masticatory muscles, as defined by number of chewing cycles during the gum-chewing test, did not differ between patients and controls (P = 0.10). In conclusion, patients had more oral complaints and lower bite force than controls, but did not show significantly different functional chewing patterns. Future studies should aim at integrating measurement of peak force into functional tests. Attention should be given to oral complaints of patients with MG.
BackgroundIn most countries polymyalgia rheumatica (PMR) is diagnosed and managed by both general practitioners (GP) and rheumatologists. However, the referral pattern from GP’s to specialist around the world has not been described. The initial prednisolone dose recommended by EULAR/ACR is between 12.5 and 25 mg1, but little is known about whether these guidelines are followed everywhere by GP’s in clinical practice2.ObjectivesThis study aims to describe the refererral pattern and treatment strategy for PMR in general practice in several countries worldwide.MethodsAn English language questionnaire was drafted by a working group of rheumatologists and GP’s from 6 different countries. The questionnaire contained questions on: 1: Respondent, 2: Referral pattern and 3: Prednisolone. Questionnaires were distributed to GP’s via members of the International PMR/GCA study group. Answers were collected via an online survey tool (Redcap), from 3rd of November 2021 to 27th of January 2022. Countries with more than 15 responders to the questionnaire were included in the analysis.ResultsData from 11 countries were analysed. Referral patterns differed widely among countries (Table 1). Almost all patients initially seen by rheumatologists were returned to GP’s for treatment. In all countries a proportion of the GP’s prescribed higher initial prednisolone doses than recommended, with a large variation between countries (Table 1).Table 1.Characteristics of responders, referral pattern, and treatment strategyAustriaCanadaColombiaDenmarkItalyNether-landsNew ZealandRomaniaRussiaSwitzer-landUnited KingdomRespondersResponders (n), Completed questionnaire (total)26 (29)15 (15)17 (23)53 (53)36 (41)22 (22)17 (17)37 (43)42 (49)26 (26)34 (35)Experience (years)20 (12-34)8 (4-10)6 (4-9)12 (10-17)15 (5-27)23 (17-30)14 (9-27)21 (16-30)6 (5-9)26 (15-32)16 (11-24)Available PMR/GCA guideline, n (%)26 (100)15(100)17 (100)53 (100)36 (100)22 (100)17 (100)37 (100)42 (100)26 (100)34 (100)Adherence to guideline, n (%)21 (82)15 (100)17 (100)51 (97)34 (94)21 (95)17 (100)37 (100)42 (100)26 (100)34 (100)ReferralsNew PMR patients referred for diagnose (%)58 (10-100)50 (2-100)100 (13-100)50-(20-100)60 (28-100)20 (10-50)10 (10-20)60 (10-88)1 (1-2)28 (10-50)10 (1-25)Patients returned to GP for treatment (%)100 (50-100)50 (2-100)8 (0-50)85 (40-100)50 (0-100)50 (10-90)100 (90-100)80 (50-98)1 (1-1)80 (10-100)100 (100-100)Patients referred during treatment (%)50 (25-90)50 (10-100)100 (50-100)20 (10-33)50 (15-80)15 (10-30)20 (10-25)30 (10-80)1(1-1)20 (10-30)10 (10-20)PrednisoloneInitial dose (mg)38 (25-50)20 (20-50)20 (10-30)25 (15-40)25 (25-25)15 (15-15)20 (15-40)15 (12-20)15 (15-15)50 (25-50)15 (15-20)Initial dose > 25 mg, n (%)12 (47)4 (25)7 (40)14 (26)9 (25)1 (5)6 (38)7 (20)3 (8)22 (83)3 (9)Duration of treatment (months)9 (6-12)6 (2-9)6 (4-24)12 (8-18)5 (3-12)11 (6-12)12 (10-18)2 (2-5)6 (6-6)12 (12-14)15 (12-24)Data are presented as weighted median (interquartile range) unless otherwise stated. GP: general practitioner, PMR: polymyalgia rheumatica, GCA: great cell arteritis.ConclusionAlthough many patients were referred to the hospital for initial PMR diagnosis or during the disease course, a large proportion of patients received treatment in general practice worldwide. GPs frequently use a higher starting dose of prednisolone and shorter treatment duration than recommended by EULAR/ACR.References[1]Dejaco C, Singh YP, Perel P, et al. 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative. Annals of the rheumatic diseases 2015; 74(10): 1799-807.[2]Helliwell T, Hider SL, Mallen CD. Polymyalgia rheumatica: diagnosis, prescribing, and monitoring in general practice. The British journal of general practice: the journal of the Royal College of General Practitioners 2013; 63(610): e361-6.AcknowledgementsThis study was endorsed by the international PMR/GCA study group.Disclosure of InterestsAgnete Overgaard Donskov: None declared, Sarah Mackie: None declared, Ellen-Margrethe Hauge Speakers bureau: AbbVie, Sanofi, Sobi, MSD, UCB, Consultant of: AbbVie, Sanofi, Sobi, MSD, UCB, Grant/research support from: Novo Nordic Foundation, Danish Rheumatism Association, Danish Regions Medicine Grants, Roche, Novartis,Celgene, MSD, Pfizer, Roche, Sobi, CARLOS TORO GUTIÉRREZ: None declared, Andrea Hemmig: None declared, Aatke van der Maas: None declared, Berit Dalsgaard NIelsen Paid instructor for: Roche, Ib Hansen: None declared, Max Yates: None declared, Line Frølund: None declared, Karen Douglas: None declared, Kornelis van der Geest Speakers bureau: Roche, Elena Rezus: None declared, Sara Monti: None declared, Margarita Gromova: None declared, Vanessa Ocampo Speakers bureau: Abvie, Simone Appenzeller Speakers bureau: Janssen, UCB, Lilly and Pfizer, Mariama Erraoui: None declared, Adeola Ajibade: None declared, Andre Marun Lyrio: None declared, Rebecca Grainger: None declared, Maria Sandovici: None declared, Toby Helliwell: None declared, Elisabeth Brouwer Speakers bureau: Roche, Consultant of: Roche, Christian Dejaco Speakers bureau: Abbvie, Eli Lilly, Janssen, Novartis, Pfizer, Roche, Galapagos and Sanofi, Consultant of: Abbvie, Eli Lilly, Janssen, Roche, Galapagos and Sanofi, Kresten Keller: None declared
BackgroundPolymyalgia rheumatica (PMR) is diagnosed and treated by both general practitioners (GP) and rheumatologists. How rheumatologists around the world manage the referral process of patients with PMR from GP’s has not been described. EULAR/ACR guidelines recommend initial prednisolone doses between 12.5 and 25 mg, but it is unknown if guidelines are followed in daily clinical practice1. In addition, the understanding of challenges for recruitment to clinical trials in PMR is currently limited.ObjectivesThis study aims to describe the management of referrals, treatment strategy, and recruitment to clinical trials in PMR among rheumatologists worldwide.MethodsAn English language questionnaire was drafted by a working group of rheumatologists and GP’s from 6 different countries. Questions concerned: 1: respondent, 2: referrals, 3: prednisolone, and 4: barriers to research. Questionnaires were distributed to rheumatologists via members of the International PMR/GCA study group. Answers were collected via an online survey tool (Redcap), from 2nd of November 2021 to 27th of January 2022. Countries were grouped by income and geographical region based on the World bank classifications. Data were weighted by number of inhabitants in a country, based on the United Nations age specific population count, divided by number of respondents in a country. Countries with more than 20 respondents were included.ResultsResults from 27 countries were analysed including 1000 responders in total (Figure 1). There was large variation in time from referral to first assessment, initial dose of prednisolone was high, duration of treatment was relatively short, and a large proportion of patients with newly diagnosed PMR received prednisolone prior to rheumatological evaluation (Table 1). Concerning the 15% of respondents who performed research in PMR, 52% had participated in clinical trials and 56% of the responders experienced difficulties with recruitment.Table 1.Characteristics of reponders, referrals, and treatment.Geographical regionIncomeThe worldEurope and Central AsiaNorth AmericaLatin AmericaEast Asia and PacificSouth AsiaMiddle East and AfricaHigh- income countriesLow- and middle- income countriesRespondersResponders (n), Completed questionnaire (total)875 (1000)294 (304)78 (81)136 (152)53 (53)53 (72)261 (338)446 (458)429 (542)Experience as rheumatologist (years)11 (6-20)12 (6-20)7 (4-20)11 (6-23)21 (10-30)7 (4-10)9 (5-18)11 (5-22)8 (5-12)ReferralsGP’s can discuss patients prior to referral, %647979575860677461Referred patients seen (%)100 (90-100)100 (90-100)100 (100-100)100 (100-100)100 (95-100)100 (100-100)100 (60-100)100 (100-100)100 (90-100)Evaluation > 2 weeks after referral, %26498060216185815PrednisoloneStarted prior to rheumatological evaluation (%)50 (20-50)60 (30-80)70 (50-80)50 (10-50)30 (20-50)50 (20-80)20 (0-50)50 (30-80)50 (10-70)Initial dose (mg)20 (15-40)20 (15-20)20 (15-20)20 (20-40)15 (15-15)20 (15-40)20 (15-40)15 (15-20)20 (15-40)Initial dose > 25 mg, %32964104143642Duration of treatment (months)12 (6-12)12 (12-18)12 (10-18)6 (3-12)18 (12-18)12 (6-12)6 (3-12)12 (12-18)9 (6-12)Data presented as weighted median (interquartile range) unless otherwise stated.GP: general practitionerConclusionThis is the first description of current practice in managing referrals and treatment of PMR by rheumatologists worldwide. In general, median treatment duration was according to EULAR/ACR guidelines, but initial dose of prednisolone was often higher than recommended in many parts of the world. PMR patients were often seen more than two weeks after referral, and treatment had started prior to first rheumatological evaluation.References[1]Dejaco C, Singh YP, Perel P, et al. 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative. Annals of the rheumatic diseases 2015; 74(10): 1799-807.AcknowledgementsThis study was endorsed by the international PMR/GCA study group.Disclosure of InterestsAgnete Overgaard Donskov: None declared, Sarah Mackie: None declared, Ellen-Margrethe Hauge Speakers bureau: AbbVie, Sanofi, Sobi, MSD, UCB, Consultant of: AbbVie, Sanofi, Sobi, MSD, UCB, Grant/research support from: Novo Nordic Foundation, Danish Rheumatism Association, Danish Regions Medicine Grants, Roche, Novartis, Celgene, MSD, Pfizer, Roche, Sobi, CARLOS TORO GUTIÉRREZ: None declared, Ib Hansen: None declared, Andrea Hemmig: None declared, Aatke van der Maas: None declared, Tamer A Gheita: None declared, Berit Dalsgaard NIelsen Paid instructor for: Roche, Karen Douglas: None declared, Richard Conway Speakers bureau: Janssen, Roche, Sanofi, Abbvie,, Elena Rezus: None declared, Bhaskar Dasgupta: None declared, Sara Monti: None declared, Eric Matteson Consultant of: Boehringer-Ingelheim,, Grant/research support from: Boehringer Ingelheim,, Sebastian E. Sattui Grant/research support from: AstraZeneca, Mark Matza: None declared, Vanessa Ocampo Speakers bureau: Abbvie, Andrea Bran: None declared, Simone Appenzeller Grant/research support from: GSK, Annelise Goecke Speakers bureau: Abbvie, Boehringer Ingelheim, Recalcine. Consultant Abbvie, Boehringer Ingelheim, NELLY COLMAN MC LEOD Speakers bureau: Laboratorios FAPASA (Farmacéutica Paraguay), Helen Keen Speakers bureau: Roche, Abbvie, Masataka Kuwana: None declared, Latika Gupta: None declared, Babur Salim: None declared, Ghita Harifi Speakers bureau: Abvie, Johnson and johnson, Lilly, Novartis, Mariama Erraoui: None declared, Nelly Ziade Speakers bureau: Abbvie, Eli Lilly, Janssen, Pfizer, Pierre Fabre, Roche, Novartis, Sanofi-Aventis, Paid instructor for: Abbvie, Eli Lilly, Sanofi-Aventis, Pfizer, Janssen, Novartis., Consultant of: Abbvie, Eli Lilly, Janssen, Pfizer, Roche, Novartis, Sandoz, Grant/research support from: Abbvie, Celgene - Algorithm, Bristol-Myers Squibb - NewBridge, Pfizer, Nizar Abdulateef Al-Ani: None declared, Adeola Ajibade: None declared, Johannes Knitza: None declared, Line Frølund: None declared, Max Yates: None declared, Victor Pimentel-Quiroz: None declared, Andre Lyrio: None declared, Maria Sandovici: None declared, Kornelis van der Geest Speakers bureau: Roche, Toby Helliwell Grant/research support from: Valneva, Elisabeth Brouwer Speakers bureau: Roche, Christian Dejaco Speakers bureau: Abbvie, Eli Lilly, Janssen, Novartis, Pfizer, Roche, Galapagos and Sanofi, Consultant of: Abbvie, Eli Lilly, Janssen, Roche, Galapagos and Sanofi, Kresten Keller: None declared
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