TY - JOUR AU - Tamby, M. C. AU - Chanseaud, Y. AU - Guillevin, L. AU - Mouthon, L. PY - 2003 DA - 2003// TI - New insights into the pathogenesis of systemic sclerosis JO - Autoimmun Rev VL - 2 UR - https://doi.org/10.1016/S1568-9972(03)00004-1 DO - 10.1016/S1568-9972(03)00004-1 ID - Tamby2003 ER - TY - JOUR AU - Kowal-Bielecka, O. AU - Landewé, R. AU - Avouac, J. AU - Chwiesko, S. AU - Miniati, I. AU - Czirjak, L. PY - 2009 DA - 2009// TI - EULAR recommendations for the treatment of systemic sclerosis: a report from the EULAR Scleroderma Trials and Research group (EUSTAR) JO - Ann Rheum Dis VL - 68 UR - https://doi.org/10.1136/ard.2008.096677 DO - 10.1136/ard.2008.096677 ID - Kowal-Bielecka2009 ER - TY - JOUR AU - Hachulla, E. AU - Gressin, V. AU - Guillevin, L. AU - Carpentier, P. AU - Diot, E. AU - Sibilia, J. PY - 2005 DA - 2005// TI - Early detection of pulmonary arterial hypertension in systemic sclerosis: a French nationwide prospective multicenter study JO - Arthritis Rheum VL - 52 UR - https://doi.org/10.1002/art.21433 DO - 10.1002/art.21433 ID - Hachulla2005 ER - TY - JOUR AU - Guillevin, L. AU - Bérezné, A. AU - Seror, R. AU - Teixeira, L. AU - Pourrat, J. AU - Mahr, A. PY - 2012 DA - 2012// TI - Scleroderma renal crisis: a retrospective multicentre study on 91 patients and 427 controls JO - Rheumatol Oxf Engl VL - 51 UR - https://doi.org/10.1093/rheumatology/ker271 DO - 10.1093/rheumatology/ker271 ID - Guillevin2012 ER - TY - JOUR AU - Bussone, G. AU - Mouthon, L. PY - 2011 DA - 2011// TI - Interstitial lung disease in systemic sclerosis JO - Autoimmun Rev VL - 10 UR - https://doi.org/10.1016/j.autrev.2010.09.012 DO - 10.1016/j.autrev.2010.09.012 ID - Bussone2011 ER - TY - JOUR AU - Forbes, A. AU - Marie, I. PY - 2009 DA - 2009// TI - Gastrointestinal complications: the most frequent internal complications of systemic sclerosis. Rheumatol JO - Oxf. Engl VL - 48 Suppl 3 ID - Forbes2009 ER - TY - JOUR AU - Rannou, F. AU - Poiraudeau, S. AU - Berezné, A. AU - Baubet, T. AU - Le-Guern, V. AU - Cabane, J. PY - 2007 DA - 2007// TI - Assessing disability and quality of life in systemic sclerosis: construct validities of the Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Systemic Sclerosis HAQ, and Medical Outcomes Study 36-Item Short Form Health Survey JO - Arthritis Rheum VL - 57 UR - https://doi.org/10.1002/art.22468 DO - 10.1002/art.22468 ID - Rannou2007 ER - TY - JOUR AU - Wylde, V. AU - Hewlett, S. AU - Learmonth, I. D. AU - Cavendish, V. J. PY - 2006 DA - 2006// TI - Personal impact of disability in osteoarthritis: patient, professional and public values JO - Musculoskeletal Care. VL - 4 UR - https://doi.org/10.1002/msc.86 DO - 10.1002/msc.86 ID - Wylde2006 ER - TY - JOUR AU - Hewlett, S. AU - Smith, A. P. AU - Kirwan, J. R. PY - 2001 DA - 2001// TI - Values for function in rheumatoid arthritis: patients, professionals, and public JO - Ann Rheum Dis VL - 60 UR - https://doi.org/10.1136/ard.60.10.928 DO - 10.1136/ard.60.10.928 ID - Hewlett2001 ER - TY - JOUR AU - Tugwell, P. AU - Bombardier, C. AU - Buchanan, W. W. AU - Goldsmith, C. AU - Grace, E. AU - Bennett, K. J. PY - 1990 DA - 1990// TI - Methotrexate in rheumatoid arthritis. Impact on quality of life assessed by traditional standard-item and individualized patient preference health status questionnaires JO - Arch Intern Med VL - 150 UR - https://doi.org/10.1001/archinte.1990.00390130073009 DO - 10.1001/archinte.1990.00390130073009 ID - Tugwell1990 ER - TY - JOUR AU - Xie, F. AU - Sc, L. AU - Ky, F. AU - Nn, L. AU - Sj, Y. AU - Ky, Y. PY - 2006 DA - 2006// TI - What health domains and items are important to patients with knee osteoarthritis? A focus group study in a multiethnic urban Asian population JO - Osteoarthritis Cartilage VL - 14 UR - https://doi.org/10.1016/j.joca.2005.09.009 DO - 10.1016/j.joca.2005.09.009 ID - Xie2006 ER - TY - JOUR AU - Stamm, T. A. AU - Mattsson, M. AU - Mihai, C. AU - Stöcker, J. AU - Binder, A. AU - Bauernfeind, B. PY - 2011 DA - 2011// TI - Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries JO - Ann Rheum Dis VL - 70 UR - https://doi.org/10.1136/ard.2010.148767 DO - 10.1136/ard.2010.148767 ID - Stamm2011 ER - TY - JOUR AU - Joachim, G. AU - Acorn, S. PY - 2003 DA - 2003// TI - Life with a rare chronic disease: the scleroderma experience JO - J Adv Nurs VL - 42 UR - https://doi.org/10.1046/j.1365-2648.2003.02663.x DO - 10.1046/j.1365-2648.2003.02663.x ID - Joachim2003 ER - TY - JOUR AU - Cinar, F. I. AU - Unver, V. AU - Yilmaz, S. AU - Cinar, M. AU - Yilmaz, F. AU - Simsek, I. PY - 2012 DA - 2012// TI - Living with scleroderma: patients’ perspectives, a phenomenological study JO - Rheumatol Int VL - 32 UR - https://doi.org/10.1007/s00296-011-2230-2 DO - 10.1007/s00296-011-2230-2 ID - Cinar2012 ER - TY - JOUR AU - Suarez-Almazor, M. E. AU - Kallen, M. A. AU - Roundtree, A. K. AU - Mayes, M. PY - 2007 DA - 2007// TI - Disease and symptom burden in systemic sclerosis: a patient perspective JO - J Rheumatol VL - 34 ID - Suarez-Almazor2007 ER - TY - STD TI - World Health Organization Regional Office for Europe Copenhagen. Therapeutic patient education – Continuing education programmes for healthcare providers in the field of chronic disease. Report of WHO Working group. 1998;1–77. http://www.euro.who.int/__data/assets/pdf_file/0007/145294/E63674.pdf. UR - http://www.euro.who.int/__data/assets/pdf_file/0007/145294/E63674.pdf ID - ref16 ER - TY - JOUR AU - Guyatt, G. H. AU - Feeny, D. H. AU - Patrick, D. L. PY - 1993 DA - 1993// TI - Measuring health-related quality of life JO - Ann Intern Med VL - 118 UR - https://doi.org/10.7326/0003-4819-118-8-199304150-00009 DO - 10.7326/0003-4819-118-8-199304150-00009 ID - Guyatt1993 ER - TY - JOUR PY - 2007 DA - 2007// TI - Qualitative research: understanding patients’ needs and experiences JO - PLoS Med VL - 4 UR - https://doi.org/10.1371/journal.pmed.0040258 DO - 10.1371/journal.pmed.0040258 ID - ref18 ER - TY - STD TI - Guidance for Industry on Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims; Availability [Internet]. Fed. Regist. 2009 [cited 2017 Feb 27] Available from: https://www.federalregister.gov/documents/2009/12/09/E9-29273/guidance-for-industry-on-patient-reported-outcome-measures-use-in-medical-product-development-to. UR - https://www.federalregister.gov/documents/2009/12/09/E9-29273/guidance-for-industry-on-patient-reported-outcome-measures-use-in-medical-product-development-to ID - ref19 ER - TY - JOUR AU - Richards, L. PY - 2007 DA - 2007// TI - The Discovery of Grounded Theory: Strategies for Qualitative Research [Book Review] JO - Qual Res J VL - 6 UR - https://doi.org/10.3316/QRJ0602183 DO - 10.3316/QRJ0602183 ID - Richards2007 ER - TY - JOUR AU - Mays, N. AU - Pope, C. PY - 1995 DA - 1995// TI - Rigour and qualitative research JO - BMJ VL - 311 UR - https://doi.org/10.1136/bmj.311.6997.109 DO - 10.1136/bmj.311.6997.109 ID - Mays1995 ER - TY - JOUR AU - Tong, A. AU - Sainsbury, P. AU - Craig, J. PY - 2007 DA - 2007// TI - Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int. J. Qual. Health Care J. Int. Soc. Qual JO - Health Care VL - 19 ID - Tong2007 ER - TY - JOUR AU - Kuzel, A. J. AU - Engel, J. D. AU - Addison, R. B. AU - Bogdewic, S. P. PY - 1994 DA - 1994// TI - Desirable features of qualitative research JO - Fam Pract Res J VL - 14 ID - Kuzel1994 ER - TY - JOUR AU - Nakayama, A. AU - Tunnicliffe, D. J. AU - Thakkar, V. AU - Singh-Grewal, D. AU - O’Neill, S. AU - Craig, J. C. PY - 2016 DA - 2016// TI - Patients’ Perspectives and Experiences Living with Systemic Sclerosis: A Systematic Review and Thematic Synthesis of Qualitative Studies JO - J Rheumatol VL - 43 UR - https://doi.org/10.3899/jrheum.151309 DO - 10.3899/jrheum.151309 ID - Nakayama2016 ER - TY - JOUR AU - Mattsson, M. AU - Boström, C. AU - Mihai, C. AU - Stöcker, J. AU - Geyh, S. AU - Stummvoll, G. PY - 2015 DA - 2015// TI - Personal factors in systemic sclerosis and their coverage by patient-reported outcome measures. A multicentre European qualitative study and literature review JO - Eur J Phys Rehabil Med VL - 51 ID - Mattsson2015 ER - TY - JOUR AU - Willgoss, T. G. AU - Humphrey, L. AU - Blankenburg, M. PY - 2014 DA - 2014// TI - I Dont Know How It Happened Or When Everything Changed. It’s Like I Blinked and All of A Sudden, I Didn’t Recognise My Own Body: Using Qualitative Insights To Develop A Conceptual Model To Understand the Lived Experience of Patients With Systemic Sclerosis JO - Value Health J. Int. Soc. Pharmacoeconomics Outcomes Res VL - 17 UR - https://doi.org/10.1016/j.jval.2014.08.1710 DO - 10.1016/j.jval.2014.08.1710 ID - Willgoss2014 ER - TY - STD TI - Sumpton D, Thakkar V, O’Neill S, Singh-Grewal D, Craig JC, Tong A. “It’s not me, it’s not really me.” Insights from patients on living with systemic sclerosis: An interview study. Arthritis Care Res. 2017; in press. ID - ref27 ER - TY - STD TI - Leventhal H. Illness Representations: Theoretical Foundations. Percept. Health … [Internet]. [cited 2017 Feb 27]; Available from: http://www.academia.edu/259449/Illness_Representations_Theoretical_Foundations UR - http://www.academia.edu/259449/Illness_Representations_Theoretical_Foundations ID - ref28 ER - TY - STD TI - Leventhal H. The Common Sense Representation of Illness Danger. Contrib. Med. … [Internet]. [cited 2017 Feb 27]; Available from: http://www.academia.edu/259452/The_Common_Sense_Representation_of_Illness_Danger UR - http://www.academia.edu/259452/The_Common_Sense_Representation_of_Illness_Danger ID - ref29 ER - TY - JOUR AU - Arat, S. AU - Verschueren, P. AU - De Langhe, E. AU - Smith, V. AU - Vanthuyne, M. AU - Diya, L. PY - 2012 DA - 2012// TI - The association of illness perceptions with physical and mental health in systemic sclerosis patients: an exploratory study JO - Musculoskeletal Care VL - 10 UR - https://doi.org/10.1002/msc.223 DO - 10.1002/msc.223 ID - Arat2012 ER - TY - JOUR AU - Hagger, M. S. AU - Orbell, S. PY - 2003 DA - 2003// TI - A Meta-Analytic Review of the Common-Sense Model of Illness Representations JO - Psychol Health VL - 18 UR - https://doi.org/10.1080/088704403100081321 DO - 10.1080/088704403100081321 ID - Hagger2003 ER - TY - JOUR AU - Diefenbach, M. A. AU - Leventhal, H. PY - 1996 DA - 1996// TI - The common-sense model of illness representation: Theoretical and practical considerations JO - J Soc Distress Homeless VL - 5 UR - https://doi.org/10.1007/BF02090456 DO - 10.1007/BF02090456 ID - Diefenbach1996 ER - TY - STD TI - Moss-Morris R, Petrie KJ. Functioning in chronic fatigue syndrome: Do illness perceptions play a regulatory role? Br J Health Psychol 1996;1;15–25. ID - ref33 ER - TY - JOUR AU - Kemp, S. AU - Morley, S. AU - Anderson, E. PY - 1999 DA - 1999// TI - Coping with epilepsy: do illness representations play a role? JO - Br J Clin Psychol VL - 38 UR - https://doi.org/10.1348/014466599162656 DO - 10.1348/014466599162656 ID - Kemp1999 ER - TY - JOUR AU - Heijmans, M. AU - De Ridder, D. PY - 1998 DA - 1998// TI - Structure and Determinants of Illness Representations in Chronic Disease: A Comparison of Addison’s Disease and Chronic Fatigue Syndrome JO - J Health Psychol VL - 3 UR - https://doi.org/10.1177/135910539800300406 DO - 10.1177/135910539800300406 ID - Heijmans1998 ER - TY - JOUR AU - Fortune, D. G. AU - Richards, H. L. AU - Kirby, B. AU - McElhone, K. AU - Markham, T. AU - Rogers, S. PY - 2003 DA - 2003// TI - Psychological Distress Impairs Clearance of Psoriasis in Patients Treated With Photochemotherapy JO - Arch Dermatol VL - 139 UR - https://doi.org/10.1001/archderm.139.6.752 DO - 10.1001/archderm.139.6.752 ID - Fortune2003 ER - TY - JOUR AU - Vaughan, R. AU - Morrison, L. AU - Miller, E. PY - 2003 DA - 2003// TI - The illness representations of multiple sclerosis and their relations to outcome JO - Br J Health Psychol VL - 8 UR - https://doi.org/10.1348/135910703322370860 DO - 10.1348/135910703322370860 ID - Vaughan2003 ER - TY - JOUR AU - Meyer, D. AU - Leventhal, H. AU - Gutmann, M. PY - 1985 DA - 1985// TI - Common-sense models of illness: the example of hypertension. Health Psychol. Off. J. Div. Health Psychol. Am. Psychol JO - Assoc VL - 4 ID - Meyer1985 ER -