| Title: |
Functional impairment of systemic scleroderma patients with digital ulcerations: results from the DUO Registry |
| Authors: |
Guillevin, L; Hunsche, E; Denton, CP; Krieg, T; Schwierin, B; Rosenberg, D; Matucci-Cerinic, M; Raffier, B; Hirschi, M; Trautinger, F; Schmidt, P; Stetter, M; Hundstorfer, M; Reinhart, V; Monshi, B; Pirkhammer, D; Richter, L; Hamberger, N; Metz, S; Feldmann, R; Semmelweis, K; Lackner, K; Tomi, N; Kolle, H; Hafner, F; Brodmann, M; Kuen-Spiegel, M; Minmair, G; Heil, PM; Broil, H; Holzer, G; Illmer, X; Rintelen, B; Sautner, J; Takacs, M; Thun, M; Zemanova, I; Soukup, T; Smrzova, A; Bohmova, J; Prochazkova, L; Nemec, P; Fojtik, Z; Suchy, D; Becvar, R; Olsen, AB; Sondergaard, KH; Jarvi, R Luosu; Vidqvist, KL; Madaule, S; Beneton, N; Maillard, H; Charlanne, H; Brocard, F Granel; Hachulla, E; Hatron, PY; Jourdain, N; Lambert, M; Launay, D; Morell, S; Woijtasik, G; Skowron, F; Zenone, T; Dadban, A; Lok, C; Ferrandiz, D; Bertrand, N Magy; Moiton, MP; Taieb, A; Balquiere, S; Belin, E; Droitcourt, C; Julien, S; Prey, S; Boulon, C; Constans, J; Doutre, MS; Kostrzwewa, E; Richez, C; Greco, M; Misery, L; Sassolas, B; Collet, E; Berthier, S; Leguy-Seguin, V; Imbert, B; Carpentier, P; Blaise, S; Couraud, A; Doeffel-Hantz, V; Spars, A; Bezanahary, H; Boussely, N; Dumonteil, S; Fauchais, AL; Goudran, G; Loustaud-Ratti, V; Manea, P; Vidal, E; Coppere, B; Clavel, H Desmurs; Girard-Madoux, MH; Hot, A; Ninet, J; Granel, B; Cohen, JD; Keynote, A; van Kien, A Khau; Le Quellec, A; Riviere, S; Rullier, P; Bessis, D; Farcas, C; Bravetti, V; Moline, T; Wahl, D; Zuily, S; Granel-Brocard, F; Agard, C; Durant, C; Fuzibet, JG; Queyrel, V; Berezne, A; Mouthon, L; Cabane, J; Tiev, K; Toledano, C; Lazareth, I; Michon-Pasturel, U; Priollet, P; Reguiai, Z; Lacoste, C Cazalets; Jego, P; Letremy, A; Perlat, A; Duval-Modeste, AB; Chatelus, E; Chiffot, H; Sibillia, J; Sordet, C; Adoue, D; Couret, B; Moulis, G; Pugnet, G; Sailler, L; Diot, E; Gaches, F; Farge, D; Keshtmand, H; Frances, C; von Elling, A; Bora, D; Ebel, J; Ahmadi-Simab, K; Klein, E; Hahn, K; Schulze, K; Rasche, C; Riemekasten, G; Lee, HH; Deuschle, K; Mattat, K; Becker, M; Worm, M; Mensing, C; Klings, D; Mensing, H; Messall, J; Zuper, R; Eilbacher, P; Saar, P; Kaufmann, P; Hallermann, C; Schmidt, K; Wahn, H; Schildt, K; Schuart, T; Kaczmarczyk, A; Kellner, C; von Oelhafen, J; von Bildering, P Baron; Kunze, S; Kleiner, HJ; Alsheimer, B; Schuetz, N; Miirker-Hermann, E; Gottl, KH; Weiss, E; Reischel, N; Kern, S; Goettl, KH; Himsel, A; Henkemeier, U; Schwarting, A; Hazenbiller, A; Nichelmann, V; Rumbaur, C; Boesenberg, I; Schmeiser, T; Mueller-Ladner, U; Unholzer, A; Starz, H; Welzel, J; Plaumann, K; Stoeckl, F; Sperling, S; Podda, M; Wagner, N; Rapprich, H; Niedermeier, A; Messer, G; Sardy, M; Bekou, V; Dill-Muller, D; Wlodarz, M; Belloni, B; Huettig, B; Ziai, M; Hein, R; Kneitz, C; Federow, I; Schneider, K; Semmler, M; Hapke, S; Metzler, C; Stein, T; Enderlein, M; Kayser, M; Werthmann, M; Guenther, CU; Neul, S; Hellmich, B; Loeffler, C; Pflugfelder, J; Karaenke, P; Mueglich, C; Tony, HP; Marina, P; Popp, M; Mittag, M; Baumann, C; Scheib, EG; Brand, H; Wilhelm, HU; Bohm, J; Dyballa, J; Boehm, J; Taggeselle, J; Luthke, K; Wuerzburg, I; Niefanger, K; Mayer, L; Drabek, J; Harmuth, W; Dietl, S; Moritz, D; Gause, A; Gaubitz, M; Hallecker, A; Krupp, E; Rumpel, H; Moosig, F; Frey, P; Kahl, S; Linke, M; Merk, B; Bloching, HH; Ochs, W; Kurthen, R; Eiden, E; Guertler, I; Aries, PM; Kirchberg, S; Jahnke, K; Mettler, S; Toeller, S; Zwenger, S; Langer, HE; Deininger, F; Hartmann, F; Neeck, G; Neek, G; Wernitzsch, H; Meier, L; Herr, U; Meier, U; Aaig, W; Bruckner, L; Sheikh, N; Wollenhaupt, J; Krog, B; Wollersdorfer, E; Hall, R; Diehm, C; Tiggers, C; Peters, J; Kirschke, J; Schroeder, JO; Zeuner, R; Uhlig, S; Barth, S; Huegel, R; Glaeser, R; Schaefer, C; Monshausen, M; Mengden, T; Funkert, A; Blank, N; Lupaschko, S; Voss, B; Megahed, M; Sadeghlar, F; Seidel, M; Wasmuth, JC; Kreuter, A; Vosswinkel, J; Pfoehler, C; Gerber, A; Haust, M; Hoff, NP; Mota, R; Akanay-Diesel, S; Homey, B; Katzemich, A; Erfurt-Berge, C; Sticherling, M; Beyer, C; Distler, J; Mitchell, A; Freundlieb, C; Rushentsova, U; Hermanns, G; Blaschke, S; Fiene, M; Wessel, C; Norgauer, J; Rabe, B; Schuster, J; Scholz, J; Kremer, K; Robakidze-Torbahn, M; Moinzadeh, P; Dohse, A; Muhlack, A; Schultz, L; Schult, S; Frambach, Y; Kruse, S; Kettenbach, A; Fell, I; Schweda, K; Steinbrink, K; Podobinska, M; Fieribeck, G; Schanz, S; Pfeiffer, C; Hassel, R; Herrgott, I; Sunderkoetter, C; Guenzel, J; Athanassiou, P; Dimitroulas, T; Settas, L; Kritikos, I; Tsifetaki, N; Garyfallos, A; Vasilopoulos, D; Boura, P; Kamali, S; Aslanidis, S; Vlachoyannopoulos, P; Galanopoulo, V; Sakkas, L; Koutroubas, A; Elezoglou, T; Galanopoulos, N; Grier, A; Murray, M; O'Rourke, M; Del Papa, N; Maglione, W; Zeni, S; Foti, R; Benenati, A; De Vita, S; Ferraccioli, G; Grassi, W; de Angeli, R; Pomponio, G; Mussi, A; Colonna, L; Airo, P; Zingarelli, S; Scorza, R; Serverino, A; Puppo, F; Negrini, S; Roma, I; Salsano, F; Triolo, G; Mazzuca, S; Carignola, R; Gatti, S; Lunardi, G; Riccieri, V; Salvarani, C; Bajocchi, G; Varcasia, G; Marasini, B; Belloll, L; de Luca, R; Stisi, S; Bellissimo, S; Fusaro, E; Pellerito, R; Cozzi, F; Rizzo, M; Bartoluzzi, A; Trotta, F; Cantatore, F; Corrado, A; Ferri, C; Colaci, M; Malavolta, N; Mule, R; Galeazzi, M; Lapadula, G; Mathieu, A; Vacca, A; Giacomelli, R; Cipriani, P; Montecucco, CM; Codullo, V; Bucci, R; Battaglia, E; Valentini, G; Cuomo, G; Terlizzi, N; Serafino, L; Reumatologia, UO; Bombardieri, S; Della Rossa, A; Doveri, M; Perricone, R; de Mattia, M; Pallotta, S; Groenendael, JH; Seys, P; Goekoop, RJ; Han, KH; Wlarvens, M; Bonte-Mineur, F; de Bois, MH; de Beus, WM; van Zeben, D; Vonk, M; Knaapen, HK; Smit, A; Bootsma, H; Ton, E; Voskuyl, A; Dutmer, EA; Stalk, JN; Madland, TM; Seip, M; Vold, AM Hoffmann; Bitter, H; Thomsen, R Stocklund; Resende, C; Ponte, C; Martinho, S; Silva, F; Ferreira, P; Grilo, A; Riso, N; Santos, C; Camara, I; Costa, J; Alves, J; Oliveira, S; Almeida, I; Silva, I; Cordeiro, A; Coelho, P; Lukac, J; Dolnicar, AS; Espinosa, G; Mejia, JC; Ramos, M; Rodriguez, MA Plasin; Mera, A; Blanco, JS; Diaz, JJ; Losada, L; Perez, E; Maneiro, JR; Caamano, M; Fermindez, S; Insua, SA; Barbado, J; Fonseca, EM; Nufio, FJ; Castellvi, I; de la Pena, P Garcia; Bellido, D; Paulino, M; Garcia, PV; Salas, V; Minguez, MD; Sanchez, MA; Urrego, C; Martin, I; Rueda, A; Calvo, J; Ripoll, MM; Torres, MC; Corteguera, M; Maceiras, F; Cruz, J; Mosquera, JA; Gomez, R; Area, B; Carrio, I; Rubio, M; Barranco, I Castellvi; Santos, P; Simeon, CP; Fonollosa, V; Egurbide, MV; de Vicuna, R Garcia; Vicente, E; Villaverde, V; Fernandez, C; Garcia, E; Uson, J; Miguelez, R; Callejas, JL; Ortego, N; Roman, J; Alegre-Sancho, JJ; Robles, A; Rios, JJ; Bonilla, MG; Andrade, A Sanchez; Vazquez, TR; Miranda, JA; Saez, L; Zea, A; De la Puente, C; Martinez, FG; Aguirre, MA; Collado, P; Cruz, A; Crespo, M; Sanchez-Roman, J; Castillo, MJ; Garcia, AM; Muniz, G; Hedin, PJ; Stahl, C; Bracin, T; Nordin, A; Albertsson, K; Rydvald, Y; Thorsson, C; Hermansson, E; Maurer, B; Verner, D; Bosshard, R Schmidt; Hall, F; Murphy, K; Lamb, J; Anderson, M; Moots, R; Buch, M; Bissell, L; Madhok, R; Hampson, R; D'Cruz, D; Choong, LM; Gordon, P; Dobson, J; Salerno, R; Nisar, M; Williams, C; Wilcox, L; Denton, C; Ochiel, R; Ngcozana, T; Parker, L; Vincent, R; McHugh, N; Cole, S; Brown, S; James, J; Herrick, A; Manning, J; Moore, T; Faizal, A; Skyes, H; Smythe, A; Hamilton, A |
| Source: |
Clinical and Experimental Rheumatology , 31 (2 (S76)) S71-S80. (2013) |
| Publisher Information: |
CLINICAL & EXPER RHEUMATOLOGY |
| Publication Year: |
2013 |
| Collection: |
University College London: UCL Discovery |
| Subject Terms: |
Scleroderma; systemic; skin ulcer; burden of illness; absenteeism; activities of daily living; self-report |
| Description: |
OBJECTIVES: Digital ulcers (DUs) are frequent manifestations of systemic scleroderma (SSc). This study assessed functional limitations due to DUs among patients enrolled in the Digital Ulcer Outcome (DUO) Registry, an international, multicentre, observational registry of SSc patients with DU disease. METHODS: Patients completed at enrolment a DU-specific functional assessment questionnaire with a 1-month recall period, measuring impairment in work and daily activities, and hours of help needed from others. Physician-reported clinical parameters were used to describe the population. For patients who completed at least part of the questionnaire, descriptive analyses were performed for overall results, and stratified by number of DUs at enrolment. RESULTS: This study included 2327 patients who completed at least part of the questionnaire. For patients with 0, 1–2, and ≥3 DUs at enrolment, mean overall work impairment during the prior month among employed/self-employed patients was 28%, 42%, and 48%, respectively. Across all included patients, ability to perform daily activities was impaired on average by 35%, 54%, and 63%, respectively. Patients required a mean of 2.0, 8.7, and 8.8 hours of paid help and 17.0, 35.9, and 63.7 hours of unpaid help, respectively, due to DUs in the prior month. Patients with DUs had more complications and medication use than patients with no DUs. CONCLUSIONS: With increasing number of DUs, SSc patients reported more impairment in work and daily activities and required more support from others. |
| Document Type: |
article in journal/newspaper |
| File Description: |
text |
| Language: |
English |
| Relation: |
https://discovery.ucl.ac.uk/id/eprint/10197663/1/Guillevin%202013%20reprint%20Clin%20Exp%20Rheum%20DU%20function.pdf; https://discovery.ucl.ac.uk/id/eprint/10197663/ |
| Availability: |
https://discovery.ucl.ac.uk/id/eprint/10197663/1/Guillevin%202013%20reprint%20Clin%20Exp%20Rheum%20DU%20function.pdf; https://discovery.ucl.ac.uk/id/eprint/10197663/ |
| Rights: |
open |
| Accession Number: |
edsbas.CE98B448 |
| Database: |
BASE |