title: SYSTEMIC SCLEROSIS RELATED CALCINOSIS: PATIENTS PROVIDE WHAT SPECIALISTS WANT TO LEARN.
abstract: BACKGROUND
  Calcinosis is a disabling, rarely discussed manifestation of systemic sclerosis (SSc) for which the natural history and management is understood poorly.
  
  
  OBJECTIVE
  To develop a calcinosis specific patient reported outcome measure (PROM) that can be used for future clinical research to test the effects of therapy on scleroderma related calcinosis.
  
  
  METHODS
  Patients were selected for participation by their scleroderma physicians. Four focus groups and individual interviews were recorded and transcribed verbatim. Patients were asked to frame questions to help a physician learn if calcinosis was better, worse or the same. Patient transcripts underwent an iterative inductive process (no preconceived coding, content drives coding and analysis) by at least five independent analysts including at least one research team member with SSc. Concepts were triangulated to identify a comprehensive set of meaningful concepts with occurrence quantified per participant.
  
  
  RESULTS
  Twenty-three patients (22/23 female, 19/23 white, with mean disease duration 14.8 years) consented and were interviewed. Responses included concepts of self-management strategies and recurrent hypotheses relating calcinosis development to trauma, Raynaud's and cold exposure. We identified discrete concepts such as the perceived association between cold exposure, Raynaud's and calcinosis severity. Calcinosis tended to present along with or soon after SSc diagnosis and remained throughout disease duration - though was not yet compared to report of first Raynaud experience.
  
  
  CONCLUSIONS
  Patient observations and self-management behavior provide opportunities for experts to learn from and to preemptively educate physicians and patients. Patients are eager for self-management guidance. These concepts are the groundwork for PROM development. However, patients suggested a composite of scales anchored in pain, size, frequency, number and related impairment may reasonably serve as an interim instrument for SSc calcinosis.
authors.affiliation: Tulane University School of Medicine, New Orleans, LA.
authors.forename: A
authors.initials: A
authors.lastname: Christensen
authors.affiliation: Louisiana University Health Sciences Center, New Orleans, LA.
authors.forename: S
authors.initials: S
authors.lastname: Khalique
authors.affiliation: Louisiana University Health Sciences Center, New Orleans.
authors.forename: S
authors.initials: S
authors.lastname: Cenac
authors.affiliation: Royal Free Hospital, Scleroderma Unit and The Scleroderma Society UK, London, UK.
authors.forename: K
authors.initials: K
authors.lastname: Fligelstone
authors.affiliation: Raynaud's and Scleroderma - Care and Support, UK.
authors.forename: A
authors.initials: A
authors.lastname: Mawdsley
authors.affiliation: University of Utah, Salt Lake City, UT.
authors.forename: T
authors.initials: T
authors.lastname: French
authors.affiliation: Hospital for Special Surgery, NYC, NY.
authors.forename: J K
authors.initials: JK
authors.lastname: Gordon
authors.affiliation: Jewish General Hospital, McGill University, Montreal, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Baron
authors.affiliation: Atlanta Scleroderma Support Group, Atlanta, GA.
authors.forename: E
authors.initials: E
authors.lastname: Busman
authors.affiliation: Georgetown University Medical Center, Washington, DC.
authors.forename: V D
authors.initials: VD
authors.lastname: Steen
authors.affiliation: University Medical Center Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans.
authors.forename: L A
authors.initials: LA
authors.lastname: Saketkoo