TY - JOUR
T1 - Developing a patient-centered outcome measure for complementary and alternative medicine therapies II
T2 - Refining content validity through cognitive interviews
AU - Thompson, Jennifer J.
AU - Kelly, Kimberly L.
AU - Ritenbaugh, Cheryl
AU - Hopkins, Allison L.
AU - Sims, Colette M.
AU - Coons, Stephen J.
N1 - Funding Information:
This project was supported by NIH/NCCAM grant R01AT003314; K. Kelly’s contribution was supported initially by the main grant and subsequently by T32 AT01287. We are grateful for the invaluable contributions of Mary Koithan for contribution to the questionnaire evolution through v1-v5; Mark Nichter’s critical input on the development of the paper; Emery Eaves for data management; and Doug Welch, Mary Larez, and Andrea Mulkins for conducting cognitive interviews. We also thank the following coinvestigators for their involvement in the project that resulted in these cognitive interviews: Marja Verhoef, Elizabeth Sutherland, Charles Elder, Sara Warber, Mimi Nichter, and Iris Bell. We thank our reviewers for their valuable recommendations.
PY - 2011/12/29
Y1 - 2011/12/29
N2 - Background: Available measures of patient-reported outcomes for complementary and alternative medicine (CAM) inadequately capture the range of patient-reported treatment effects. The Self-Assessment of Change questionnaire was developed to measure multi-dimensional shifts in well-being for CAM users. With content derived from patient narratives, items were subsequently focused through interviews on a new cohort of participants. Here we present the development of the final version in which the content and format is refined through cognitive interviews.Methods: We conducted cognitive interviews across five iterations of questionnaire refinement with a culturally diverse sample of 28 CAM users. In each iteration, participant critiques were used to revise the questionnaire, which was then re-tested in subsequent rounds of cognitive interviews. Following all five iterations, transcripts of cognitive interviews were systematically coded and analyzed to examine participants' understanding of the format and content of the final questionnaire. Based on this data, we established summary descriptions and selected exemplar quotations for each word pair on the final questionnaire.Results: The final version of the Self-Assessment of Change questionnaire (SAC) includes 16 word pairs, nine of which remained unchanged from the original draft. Participants consistently said that these stable word pairs represented opposite ends of the same domain of experience and the meanings of these terms were stable across the participant pool. Five pairs underwent revision and two word pairs were added. Four word pairs were eliminated for redundancy or because participants did not agree on the meaning of the terms. Cognitive interviews indicate that participants understood the format of the questionnaire and considered each word pair to represent opposite poles of a shared domain of experience.Conclusions: We have placed lay language and direct experience at the center of questionnaire revision and refinement. In so doing, we provide an innovative model for the development of truly patient-centered outcome measures. Although this instrument was designed and tested in a CAM-specific population, it may be useful in assessing multi-dimensional shifts in well-being across a broader patient population.
AB - Background: Available measures of patient-reported outcomes for complementary and alternative medicine (CAM) inadequately capture the range of patient-reported treatment effects. The Self-Assessment of Change questionnaire was developed to measure multi-dimensional shifts in well-being for CAM users. With content derived from patient narratives, items were subsequently focused through interviews on a new cohort of participants. Here we present the development of the final version in which the content and format is refined through cognitive interviews.Methods: We conducted cognitive interviews across five iterations of questionnaire refinement with a culturally diverse sample of 28 CAM users. In each iteration, participant critiques were used to revise the questionnaire, which was then re-tested in subsequent rounds of cognitive interviews. Following all five iterations, transcripts of cognitive interviews were systematically coded and analyzed to examine participants' understanding of the format and content of the final questionnaire. Based on this data, we established summary descriptions and selected exemplar quotations for each word pair on the final questionnaire.Results: The final version of the Self-Assessment of Change questionnaire (SAC) includes 16 word pairs, nine of which remained unchanged from the original draft. Participants consistently said that these stable word pairs represented opposite ends of the same domain of experience and the meanings of these terms were stable across the participant pool. Five pairs underwent revision and two word pairs were added. Four word pairs were eliminated for redundancy or because participants did not agree on the meaning of the terms. Cognitive interviews indicate that participants understood the format of the questionnaire and considered each word pair to represent opposite poles of a shared domain of experience.Conclusions: We have placed lay language and direct experience at the center of questionnaire revision and refinement. In so doing, we provide an innovative model for the development of truly patient-centered outcome measures. Although this instrument was designed and tested in a CAM-specific population, it may be useful in assessing multi-dimensional shifts in well-being across a broader patient population.
KW - Cognitive interviewing
KW - Complementary and alternative medicine (CAM)
KW - Non-specific outcomes
KW - Patient-centered care
KW - Patient-reported outcomes (PROs)
KW - Questionnaire development
KW - Retrospective pre-test
KW - Well-being
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U2 - 10.1186/1472-6882-11-136
DO - 10.1186/1472-6882-11-136
M3 - Article
C2 - 22206409
AN - SCOPUS:84855161767
SN - 1472-6882
VL - 11
JO - BMC Complementary and Alternative Medicine
JF - BMC Complementary and Alternative Medicine
M1 - 136
ER -