• 1
    Joachim G, Acorn S. Life with a rare chronic disease: the scleroderma experience. J Adv Nurs 2003;42:598606.
  • 2
    Mendelson C, Poole JL. Become your own advocate: advice from women living with scleroderma. Disabil Rehabil 2007;29:1492501.
  • 3
    Rubenzik TT, Derk CT. Unmet patient needs in systemic sclerosis. J Clin Rheumatol 2007;15:10610.
  • 4
    Samuelson UK, Ahlmen EM. Development and evaluation of a patient education program for persons with systemic sclerosis (scleroderma). Arthritis Care Res 2000;13:1418.
  • 5
    Brown SJ, Somerset ME, McCabe CS, McHugh NJ. The impact of group education on participants' management of their disease in lupus and scleroderma. Musculoskeletal Care 2004;2:20717.
  • 6
    Kwakkenbos L, Bluyssen SJ, Vonk MC, van Helmond AF, van den Ende CH, van den Hoogen FH, et al. Addressing patient health care demands in systemic sclerosis: pre-post assessment of a psycho-educational group programme. Clin Exp Rheumatol 2011;29 Suppl:S605.
  • 7
    Fries JF, Carey C, McShane DJ. Patient education in arthritis: randomized controlled trial of a mail-delivered program. J Rheumatol 1997;24:137883.
  • 8
    Lorig KR, Ritter PL, Laurent DD, Plant K. The internet-based Arthritis Self-Management Program: a one-year randomized trial for patients with arthritis or fibromyalgia. Arthritis Rheum 2008;59:100917.
  • 9
    Poole JL, Skipper B, Mendelson C. Evaluation of a mail-delivered, print-format self-management program for persons with systemic sclerosis. Clin Rheumatol 2013;32:13938.
  • 10
    Lorig K, Stewart A, Ritter P, Gonzalez V, Laurent D, Lynch J.Outcome measures for health education and other health care interventions.Thousand Oaks (CA):Sage Publications;1996.
  • 11
    Osborne RH, Elsworth GR, Whitfield K. The Health Education Impact Questionnaire (heiQ): an outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. Patient Educ Couns 2007;66:192201.
  • 12
    Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res 2004;39:100526.
  • 13
    Radloff LS. The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Meas 1977;1:385401.
  • 14
    Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arthritis Rheum 1980;23:13745.
  • 15
    Van der Vaart R, Repping-Wuts H, Drossaert CH, Taal E, Knaapen-Hans HK, van de Laar MA. Needs for online information and support of patients with systemic sclerosis. Arthritis Care Res (Hoboken) 2013;65:594600.
  • 16
    Bassel M, Hudson M, Taillefer SS, Schieir O, Baron M, Thombs BD. Frequency and impact of symptoms experienced by patients with systemic sclerosis: results from a Canadian national study. Rheumatology (Oxford) 2011;50:7627.
  • 17
    Suarez-Almazon ME, Kallen MA, Roundtree AK, Mayes M. Disease burden and symptom burden in systemic sclerosis: a patient perspective. J Rheumatol 2007;34:171826.