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1.  Development and evaluation of a new survey instrument to measure the quality of colorectal cancer screening decisions 
Background
Guidelines for colorectal cancer screening recommend that patients be informed about options and be able to select preferred method of screening; however, there are no existing measures available to assess whether this happens.
Methods
Colorectal Cancer Screening Decision Quality Instrument (CRC-DQI) includes knowledge items and patients' goals and concerns. Items were generated through literature review and qualitative work with patients and providers. Hypotheses relating to the acceptability, feasibility, discriminant validity and retest reliability of the survey were examined using data from three studies: (1) 2X2 randomized study of participants recruited online, (2) cross-sectional sample of patients recruited in community health clinics, and (3) cross-sectional sample of providers recruited from American Medical Association Master file.
Results
338 participants were recruited online, 94 participants were recruited from community health centers, and 115 physicians were recruited. The CRC-DQI was feasible and acceptable with low missing data and high response rates for both online and paper-based administrations. The knowledge score was able to discriminate between those who had seen a decision aid or not (84% vs. 64%, p < 0.001) and between providers, online patients and clinic patients (89% vs. 74% vs. 41%, p < 0.001 for all comparisons). The knowledge score and most of the goals had adequate retest reliability. About half of the participants received a test that matched their goals (47% and 51% in online and clinic samples respectively). Many respondents who had never been screened had goals that indicated a preference for colonoscopy. A minority of respondents in the online (21%) and in clinic (2%) samples were both well informed and received a test that matched their goals.
Conclusions
The CRC-DQI demonstrated good psychometric properties in diverse samples, and across different modes of administration. Few respondents made high quality decisions about colon cancer screening.
doi:10.1186/1472-6947-14-72
PMCID: PMC4147095  PMID: 25138444
Colon cancer screening; Decision quality; Shared decision making; Quality measurement; Survey research; Psychometrics
2.  Development and Evaluation of CAHPS® Questions to Assess the Impact of Health Information Technology on Patient Experiences with Ambulatory Care 
Medical care  2012;50(Suppl):S11-S19.
Background
Little is known about whether health information technology (HIT) affects patient experiences with health care.
Objective
To develop HIT questions that assess patients care experiences not evaluated by existing ambulatory CAHPS measures.
Research Design
We reviewed published articles and conducted focus groups and cognitive testing to develop survey questions. We collected data, using mail and the internet, from patients of 69 physicians receiving care at an academic medical center and two regional integrated delivery systems in late 2009 and 2010. We evaluated questions and scales about HIT using factor analysis, item-scale correlations, and reliability (internal consistency and physician-level) estimates.
Results
We found support for three HIT composites: doctor use of computer (2 items), e-mail (2 items), and helpfulness of provider’s website (4 items). Corrected item-scale correlations were 0.37 for the two doctor use of computer items and 0.71 for the two e-mail items, and ranged from 0.50 to 0.60 for the provider’s website items. Cronbach’s alpha was high for e-mail (0.83) and provider’s website (0.75), but only 0.54 for doctor use of computer. As few as 50 responses per physician would yield reliability of 0.70 for e-mail and provider’s website. Two HIT composites, doctor use of computer (p<0.001) and provider’s website (p=0.02), were independent predictors of overall ratings of doctors.
Conclusions
New CAHPS HIT items were identified that measure aspects of patient experiences not assessed by the CAHPS C&G 1.0 survey.
doi:10.1097/MLR.0b013e3182610a50
PMCID: PMC3525454  PMID: 23064271
CAHPS®; health information technology; personal health records; patient experiences of care
3.  Cognitive and Field Testing of a New Set of Medication Adherence Self-Report Items for HIV Care 
AIDS and Behavior  2013;18(12):2349-2358.
We conducted four rounds of cognitive testing of self-report items that included 66 sociodemographically diverse participants, then field tested the three best items from the cognitive testing in a clinic waiting room (N = 351) and in an online social networking site for men who have sex with men (N = 6,485). As part of the online survey we conducted a randomized assessment of two versions of the adherence questionnaire—one which asked about adherence to a specific antiretroviral medication, and a second which asked about adherence to their “HIV medicines” as a group. Participants were better able to respond using adjectival and adverbial scales than visual analogue or percent items. The internal consistency reliability of the three item adherence scale was 0.89. Mean scores for the two different versions of the online survey were similar (91.0 vs. 90.2, p < 0.05), suggesting that it is not necessary, in general, to ask about individual medications in an antiretroviral therapy regimen when attempting to describe overall adherence.
doi:10.1007/s10461-013-0610-1
PMCID: PMC4000749  PMID: 24077970
HIV; Medication adherence; Self-report; Questionnaires; Survey methodology
4.  Measuring decision quality: psychometric evaluation of a new instrument for breast cancer surgery 
Background
The purpose of this paper is to examine the acceptability, feasibility, reliability and validity of a new decision quality instrument that assesses the extent to which patients are informed and receive treatments that match their goals.
Methods
Cross-sectional mail survey of recent breast cancer survivors, providers and healthy controls and a retest survey of survivors. The decision quality instrument includes knowledge questions and a set of goals, and results in two scores: a breast cancer surgery knowledge score and a concordance score, which reflects the percentage of patients who received treatments that match their goals. Hypotheses related to acceptability, feasibility, discriminant validity, content validity, predictive validity and retest reliability of the survey instrument were examined.
Results
We had responses from 440 eligible patients, 88 providers and 35 healthy controls. The decision quality instrument was feasible to implement in this study, with low missing data. The knowledge score had good retest reliability (intraclass correlation coefficient = 0.70) and discriminated between providers and patients (mean difference 35%, p < 0.001). The majority of providers felt that the knowledge items covered content that was essential for the decision. Five of the 6 treatment goals met targets for content validity. The five goals had moderate to strong retest reliability (0.64 to 0.87). The concordance score was 89%, indicating that a majority had treatments concordant with that predicted by their goals. Patients who had concordant treatment had similar levels of confidence and regret as those who did not.
Conclusions
The decision quality instrument met the criteria of feasibility, reliability, discriminant and content validity in this sample. Additional research to examine performance of the instrument in prospective studies and more diverse populations is needed.
doi:10.1186/1472-6947-12-51
PMCID: PMC3411423  PMID: 22681763
5.  Development of instruments to measure the quality of breast cancer treatment decisions 
Background
Women with early stage breast cancer face a multitude of decisions. The quality of a decision can be measured by the extent to which the treatment reflects what’s most important to an informed patient. Reliable and valid measures of patients’ knowledge and their goals and concerns related to breast cancer treatments are needed to assess decision quality.
Objective
To identify a set of key facts and goals relevant to each of three breast cancer treatment decisions (surgery, reconstruction, and adjuvant chemotherapy and hormone therapy) and to evaluate the validity of the methods used to identify them.
Methods
Candidate facts and goals were chosen based on evidence review and qualitative studies with breast cancer patients and providers. Cross-sectional surveys of patients and providers were conducted for each decision. The accuracy, importance, and completeness of the items were examined.
Results
38 facts (11–14 per decision) and 27 goals (8–10 per decision) were identified. An average of 17 patients and 21 providers responded to each survey. The sets of facts were accurate and complete for all three decisions. The sets of goals and concerns were important for surgery and reconstruction, but not chemotherapy/hormone therapy. Patients and providers disagreed about the relative importance of several key facts and goals.
Conclusion
Overall, breast cancer patients and providers found the sets of facts and goals accurate, important, and complete for three treatment decisions. Because patients’ and providers’ perspectives are different, it is vital that instrument development should include items reflecting both views.
doi:10.1111/j.1369-7625.2010.00600.x
PMCID: PMC2919601  PMID: 20550591
6.  Decision quality instrument for treatment of hip and knee osteoarthritis: a psychometric evaluation 
Background
A high quality decision requires that patients who meet clinical criteria for surgery are informed about the options (including non-surgical alternatives) and receive treatments that match their goals. The aim of this study was to evaluate the psychometric properties and clinical sensibility of a patient self report instrument, to measure the quality of decisions about total joint replacement for knee or hip osteoarthritis.
Methods
The performance of the Hip/Knee Osteoarthritis Decision Quality Instrument (HK-DQI) was evaluated in two samples: (1) a cross-sectional mail survey with 489 patients and 77 providers (study 1); and (2) a randomized controlled trial of a patient decision aid with 138 osteoarthritis patients considering total joint replacement (study 2). The HK-DQI results in two scores. Knowledge items are summed to create a total knowledge score, and a set of goals and concerns are used in a logistic regression model to develop a concordance score. The concordance score measures the proportion of patients whose treatment matched their goals. Hypotheses related to acceptability, feasibility, reliability and validity of the knowledge and concordance scores were examined.
Results
In study 1, the HK-DQI was completed by 382 patients (79%) and 45 providers (58%), and in study 2 by 127 patients (92%), with low rates of missing data. The DQI-knowledge score was reproducible (ICC = 0.81) and demonstrated discriminant validity (68% decision aid vs. 54% control, and 78% providers vs. 61% patients) and content validity. The concordance score demonstrated predictive validity, as patients whose treatments were concordant with their goals had more confidence and less regret with their decision compared to those who did not.
Conclusions
The HK-DQI is feasible and acceptable to patients. It can be used to assess whether patients with osteoarthritis are making informed decisions about surgery that are concordant with their goals.
doi:10.1186/1471-2474-12-149
PMCID: PMC3146909  PMID: 21729315
shared decision making; patient centered care; quality measurement; osteoarthritis; total joint replacement; decision quality

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