What Everybody is Doing but No One is Talking About: Use of Complementary and Alternative Medicine in the ANCA Associated Vasculitis Population

Authors

  • Elisabeth A.B. Berg Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA
  • JulieAnne G. McGregor Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA
  • Madelyn E. Burkart Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA
  • Caroline J. Poulton Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA
  • Yichun Hu Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA
  • Ronald J. Falk Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA
  • Susan L. Hogan Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA

DOI:

https://doi.org/10.12970/2310-9874.2014.02.03.2

Keywords:

 ANCA-Associated Vasculitis, Alternative Medicine, Complementary Medicine, Small Vessel Vasculitis, and Autoimmune Disease.

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.

Conclusion: 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.

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Published

2014-12-05

Issue

Vol. 2 No. 3 (2014)

Section

Articles