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% ANCAnegative. 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.

Exploring the Use of Traditional Medicines, Natural Health Products and Conventional Medicines: Development and Testing of the New Zealand ‘All-Medicines’ Questionnaire

“…The I-CAM-Q was found to have low face validity and acceptability across five European Union (EU) countries: many terms, including types of practitioners, practices/therapies and product categories, were unknown to, or misunderstood by, participants as definitions were not provided in the tool [ 18 ]. Several countries adapted the I-CAM-Q by modifying the list of practitioners, practices/therapies and product categories [ 19 , 22 , 23 ], and question response options (e.g. perceived ‘helpfulness’ was changed to ‘benefit’ [ 24 ]) to suit their local context; in some countries, changes to the questionnaire were so substantial [ 17 , 25 ] that the original intention for a standardised tool may have been compromised.…”

Stakeholder Perceptions of Complementary and Integrative Medicines from People Living with Rare Diseases in Northern Ireland: A Mixed Methods Study

“…For example, a well-known example is the use of cannabinoids in alleviating the symptoms of neurological diseases such as Parkinson's disease, as well as several other common complex disorders such as a multiple sclerosis and epilepsy [14][15][16][17]. In a study of patients with antineutrophil cytoplasmic antibody-associated vasculitis, a rare inflammatory disease, 81% of participants reported using at least one type of CIM to aid disease management with positive perceptions surrounding their efficacy, yet just 24% of participants discussed these CIM with their HCP [18]. A 2013 Cochrane systematic review of randomised control trials for creatine dietary supplements identified an improvement in rare hereditary muscular diseases [19].…”