title: What Everybody is Doing but No One is Talking About: Use of Complementary and Alternative Medicine in the ANCA Associated Vasculitis Population.
abstract: The use and impact of complementary and alternative medicine (CAM) for anti-neutrophil cytoplasmic antibody (ANCA) associated vasculitis (AAV) has not been reported. AAV patients seeking care at our center inquired about CAM, prompting a formal study. Study objectives were to discern how many AAV patients used CAM and its perceived helpfulness in disease management.
  
  
  METHODS
  AAV patients completed a CAM questionnaire between July 2011 and May 2012. Patients were 18 years or older and had biopsy proven and/or clinical evidence of AAV. Medical record abstraction supplemented data. Classification detailed CAM type including "Mind" or "Mind-Body". Perceived helpfulness of CAM was assessed as "very", "somewhat" or "not at all/don't know".
  
  
  RESULTS
  A total of 107 patients participated and were a mean age of 53 (range: 18-85), 62% female; 48% proteinase 3 (PR3)-ANCA, 44% myeloperoxidase (MPO)-ANCA and 8% ANCA-negative. Top organs involved included kidney (87%), joints (55%), lung (53%) and upper respiratory (53%). At least one type of CAM treatment or self-help practice was reported by 81% of study participants, with the most frequent being prayer (64%), exercise (27%) and massage therapy (19%). Mind-based practices were used by 28% (excluding prayer) and Mind-Body practices by 14%. Most practices were used to improve wellbeing, and Mind and Mind-Body were deemed very helpful by 83% and 87% respectively. Only 24% of study participants discussed CAM with their physician.
  
  
  CONCLUSIONS
  CAM practices were commonly used to improve well-being and found to be beneficial among AAV patients, but more open discussion is needed about CAM between physicians and patients.
authors.affiliation: Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Elisabeth A B
authors.initials: EA
authors.lastname: Berg
authors.affiliation: Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: JulieAnne G
authors.initials: JG
authors.lastname: McGregor
authors.affiliation: Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Madelyn E
authors.initials: ME
authors.lastname: Burkart
authors.affiliation: Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Caroline J
authors.initials: CJ
authors.lastname: Poulton
authors.affiliation: Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Yichun
authors.initials: Y
authors.lastname: Hu
authors.affiliation: Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Ronald J
authors.initials: RJ
authors.lastname: Falk
authors.affiliation: Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Susan L
authors.initials: SL
authors.lastname: Hogan
keywords: ANCA-Associated Vasculitis; Alternative Medicine; Autoimmune Disease; Complementary Medicine; Small Vessel Vasculitis