During the preliminary phase of designing an outcomes evaluation for patients with rheumatic disease attending the CHC, an interdisciplinary group of physicians, nurses, health educators and nutritionists identified PRO variables of interest in this population, including depression or mood, functional status, pain, self-efficacy, acculturation and CAM practices. The proposed outcomes evaluation questionnaire for this exploratory study included (1) the Short Acculturation Scale (SAS), (2) the Stanford Health Assessment Questionnaire Disability Index (HAQ-DI), (3) the Wong-Baker Faces Pain Scale, (4) the Arthritis Self-Efficacy Scale (ASES), (5) the Center for Epidemiologic Studies Depression Scale (CES-D) (see Table 1 ), and (6) the Inventory of Complementary and Alternative Medicine Practices (ICAMP).
Validating a measure to assess the use of CAM was of particular interest in the sample because the interdisciplinary team suspected that there may be unreported use of CAM among this diverse and underserved sample. Patients with rheumatic disease may seek relief through strategies considered CAM because of both the acute and chronic nature of pain and symptoms, as well as the accompanying decreases in physical function and health-related quality of life. Despite improvements in the measurement of PROs in patients with rheumatic disease, there is no consensus regarding how best to ask about these self-reported CAM beliefs and practices, whether for research purposes or as an assessment during a clinical encounter. Furthermore, little is known about the applicability or utility of CAM measures across culturally and linguistically diverse populations. It is still relatively uncommon for patients with rheumatic disease to volunteer information about additional CAM treatments they are using [21 (link),22 (link)], and survey teams consistently identify the need for health care providers to assess this information on a routine basis. With permission from Dr. Leigh Callahan at the Thurston Arthritis Research Center at University of North Carolina, Chapel Hill, we began testing a modified version of the Complementary and Alternative Medicine Use in Arthritis Questionnaire that was part of a baseline questionnaire for the Consortium for the Longitudinal Evaluation of African Americans with Early Rheumatoid Arthritis Registry [15 (link)]. The Arthritis Foundation's Guide to Alternative Therapies [23 ], along with the work of Eisenberg et al. [24 (link)], were also used to generate lists of potential CAM practices.
CAM use was determined by asking separately about eight specific categories: (1) use of alternative health providers or therapists; (2) special diets; (3) vitamins and minerals; (4) herbs, mixtures or other supplements; (5) rubs, lotions, liniments, creams and oils; (6) other body treatments (that is, copper bracelets, paraffin, magnets); (7) movement activities and (8) spiritual, relaxation and mind-body activities. An additional Health Decisions section at the end of the questionnaire related to CAM use was included to determine the respondents' perceptions regarding their level of participation in health decisions [14 (link)], the reason for using the type of CAM they identified, whether they discussed CAM use with their regular health care provider, how much money they spent monthly on CAM and whether CAM use changed their use of standard allopathic therapies. The order of the measures presented to participants was prioritized by the level of importance of the outcomes measured. It was assumed a priori that some respondents would have too much pain and discomfort to sit for extended periods of time for the interview. Because pain and functional ability were two of the primary outcomes of importance, they were listed first.
Validating a measure to assess the use of CAM was of particular interest in the sample because the interdisciplinary team suspected that there may be unreported use of CAM among this diverse and underserved sample. Patients with rheumatic disease may seek relief through strategies considered CAM because of both the acute and chronic nature of pain and symptoms, as well as the accompanying decreases in physical function and health-related quality of life. Despite improvements in the measurement of PROs in patients with rheumatic disease, there is no consensus regarding how best to ask about these self-reported CAM beliefs and practices, whether for research purposes or as an assessment during a clinical encounter. Furthermore, little is known about the applicability or utility of CAM measures across culturally and linguistically diverse populations. It is still relatively uncommon for patients with rheumatic disease to volunteer information about additional CAM treatments they are using [21 (link),22 (link)], and survey teams consistently identify the need for health care providers to assess this information on a routine basis. With permission from Dr. Leigh Callahan at the Thurston Arthritis Research Center at University of North Carolina, Chapel Hill, we began testing a modified version of the Complementary and Alternative Medicine Use in Arthritis Questionnaire that was part of a baseline questionnaire for the Consortium for the Longitudinal Evaluation of African Americans with Early Rheumatoid Arthritis Registry [15 (link)]. The Arthritis Foundation's Guide to Alternative Therapies [23 ], along with the work of Eisenberg et al. [24 (link)], were also used to generate lists of potential CAM practices.
CAM use was determined by asking separately about eight specific categories: (1) use of alternative health providers or therapists; (2) special diets; (3) vitamins and minerals; (4) herbs, mixtures or other supplements; (5) rubs, lotions, liniments, creams and oils; (6) other body treatments (that is, copper bracelets, paraffin, magnets); (7) movement activities and (8) spiritual, relaxation and mind-body activities. An additional Health Decisions section at the end of the questionnaire related to CAM use was included to determine the respondents' perceptions regarding their level of participation in health decisions [14 (link)], the reason for using the type of CAM they identified, whether they discussed CAM use with their regular health care provider, how much money they spent monthly on CAM and whether CAM use changed their use of standard allopathic therapies. The order of the measures presented to participants was prioritized by the level of importance of the outcomes measured. It was assumed a priori that some respondents would have too much pain and discomfort to sit for extended periods of time for the interview. Because pain and functional ability were two of the primary outcomes of importance, they were listed first.
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