Patients’ Experience of Myositis and Further Validation of a Myositis-specific Patient Reported Outcome Measure — Establishing Core Domains and Expanding Patient Input on Clinical Assessment in Myositis. Report from OMERACT 12

REFERENCES

1. 1.↵
   1. Hengstman GJ,
   2. van den Hoogen FH,
   3. van Engelen BG

   . Treatment of the inflammatory myopathies: update and practical recommendations. Expert Opin Pharmacother 2009;10:1183–90.

   OpenUrlCrossRefPubMed
2. 2.↵
   1. Lindberg C,
   2. Oldfors A

   . Prognosis and prognostic factors in sporadic inclusion body myositis. Acta Neurol Scand 2012;125:353–8.

   OpenUrlCrossRefPubMed
3. 3.↵
   1. Bronner IM,
   2. van der Meulen MF,
   3. de Visser M,
   4. Kalmijn S,
   5. van Venrooij WJ,
   6. Voskuyl AE,
   7. et al.

   Long-term outcome in polymyositis and dermatomyositis. Ann Rheum Dis 2006;65:1456–61.

   OpenUrlAbstract/FREE Full Text
4. 4.↵
   1. Ponyi A,
   2. Borgulya G,
   3. Constantin T,
   4. Vancsa A,
   5. Gergely L,
   6. Danko K

   . Functional outcome and quality of life in adult patients with idiopathic inflammatory myositis. Rheumatology 2005;44:83–8.

   OpenUrlAbstract/FREE Full Text
5. 5.↵
   1. Regardt M,
   2. Welin Henriksson E,
   3. Alexanderson H,
   4. Lundberg IE

   . Patients with polymyositis or dermatomyositis have reduced grip force and health-related quality of life in comparison with reference values: an observational study. Rheumatology 2011;50:578–85.

   OpenUrlAbstract/FREE Full Text
6. 6.↵
   1. Lachenbruch PA,
   2. Miller FW,
   3. Rider LG

   . Developing international consensus on measures of improvement for patients with myositis. Stat Methods Med Res 2007;16:51–64.

   OpenUrlAbstract/FREE Full Text
7. 7.↵
   1. Alexanderson H,
   2. Del Grande M,
   3. Bingham CO 3rd,
   4. Orbai AM,
   5. Sarver C,
   6. Clegg-Smith K,
   7. et al.

   Patient-reported outcomes and adult patients’ disease experience in the idiopathic inflammatory myopathies. Report from the OMERACT 11 Myositis Special Interest Group. J Rheumatol 2014;41:581–92.

   OpenUrlAbstract/FREE Full Text
8. 8.↵
   1. Alexanderson H,
   2. Lundberg IE,
   3. Stenstrom CH

   . Development of the myositis activities profile—validity and reliability of a self-administered questionnaire to assess activity limitations in patients with polymyositis/dermatomyositis. J Rheumatol 2002;29:2386–92.

   OpenUrlAbstract/FREE Full Text
9. 9.↵
   1. Vreeman RC,
   2. Nyandiko WM,
   3. Ayaya SO,
   4. Walumbe EG,
   5. Inui TS

   . Cognitive interviewing for cross-cultural adaptation of pediatric antiretroviral therapy adherence measurement items. Int J Behav Med 2014;21:186–96.

   OpenUrlCrossRefPubMed
10. 10.↵
    1. Malterud K

    . Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health 2012;40:795–805.

    OpenUrlAbstract/FREE Full Text
11. 11.↵
    1. Hewlett S,
    2. Sanderson T,
    3. May J,
    4. Alten R,
    5. Bingham CO 3rd,
    6. Cross M,
    7. et al.

    ‘I’m hurting, I want to kill myself’: rheumatoid arthritis flare is more than a high joint count—an international patient perspective on flare where medical help is sought. Rheumatology 2012;51:69–76.

    OpenUrlAbstract/FREE Full Text
12. 12.↵
    1. Mittoo S,
    2. Huscher D,
    3. Khanna D,
    4. Dellaripa PF,
    5. Distler O,
    6. Flaherty KR,
    7. et al.

    Connective tissue disease related interstitial lung diseases and idiopathic pulmonary fibrosis: provisional core sets of domains and instruments for use in clinical trials. Thorax 2014;69:428–36.

    OpenUrlPubMed
13. 13.↵
    World Health Organization. International Classification of Functioning, Disability and Health. Geneva: World Health Organization; 2001.
14. 14.↵
    1. Nicklin J,
    2. Cramp F,
    3. Kirwin J,
    4. Urban M,
    5. Hewlett S

    . Collaboration with patients in the design of patient-reported outcome measures: capturing the experience of fatigue in rheumatoid arthritis. Arthritis Care Res 2010;62:1552–8.

    OpenUrlCrossRef
15. 15.↵
    1. Wickwar S,
    2. Buerkle K,
    3. McBain H,
    4. Ciciriello S,
    5. Osborne RH,
    6. Wedderburn LR,
    7. et al.

    Adaptation of the methotrexate in rheumatoid arthritis knowledge questionnaire (MiRAK) for use with parents of children with juvenile idiopathic arthritis: a qualitative study. Pediatr Rheumatol 2013;11:27.

    OpenUrlCrossRef