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Patient Reported Outcomes

• Description:

  • SF-36 for Adults:

    IMACS suggests using the Original SF-36® in adult myositis clinical trials and studies. For use of the Original SF-36®, please contact Quality Metric for licensing information at: http://www.qualitymetric.com/products/descriptions/sflicenses.shtml (http://www.qualitymetric.com/products/descriptions/sflicenses.shtml) or http://www.sf-36.org/wantsf.aspx?id=1 (http://www.sf-36.org/wantsf.aspx?id=1) .

  • Child Health Questionnaire (CHQ-PF50) for Children:

    IMACS suggests using the CHQ-PF50® in myositis clinical trials and studies involving pediatric patients. For use of the CHQ-PF50, contact HealthAct, Inc. at http://www.healthact.com/chq.html (http://www.healthact.com/chq.html) . All users will need to register and purchase the CHQ Manual from HealthAct in order to obtain copies of the form for use in their study. The Health Act website provides information regarding terms of use, content, bibliography, translations etc. All translations will be issued only through HealthAct Inc. Some uses may require a license fee (depending on scope, languages, etc), and this will be determined on a case by case basis.

• Links to licensing requirements for tool:

  • For the SF-36: http://www.sf-36.org/wantsf.aspx?id=1 (http://www.sf-36.org/wantsf.aspx?id=1)
  • For the CHQ-PF50®: http://www.healthactchq.com/chq.html (http://www.healthactchq.com/chq.html)

• References:

  1. Ponyi A, Borgulya G, Constantin T, Vancsa A, Gergely L, Danko K. Functional outcome and quality of life in adult patients with idiopathic inflammatory myositis. Rheumatology (Oxford). 2004 Sep 20 [Epub ahead of print] Pub Med (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15381789)
  2. Sultan SM, Ioannou Y, Moss K, Isenberg DA. Outcome in patients with idiopathic inflammatory myositis: morbidity and mortality. Rheumatology (Oxford). 2002 Jan;41(1):22-6. Pub Med (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11792875)
  3. Ruperto N, Ravelli A, Pistorio A, Malattia C, Cavuto S, Gado-West L, Tortorelli A, Landgraf JM, Singh G, Martini A; Paediatric Rheumatology International Trials Organisation. Cross-cultural adaptation and psychometric evaluation of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ) in 32 countries. Review of the general methodology. Clin Exp Rheumatol. 2001 Jul-Aug;19(4 Suppl 23):S1-9. Pub Med (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11510308)

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Last Reviewed: October 30, 2007