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Objective: To understand the extent to which hospitalized patients participate in their care, and the association of patient participation with quality of care and patient safety.Design: Random sample telephone survey and medical record review.Setting: US acute care hospitals in 2003.Participants: A total of 2025 recently hospitalized adults.Main Outcome Measures: Hospitalized patients reported participation in their own care, assessments of overall quality of care and the presence of adverse events (AEs) in telephone interviews. Physician reviewers rated the severity and preventability of AEs identified by interview and chart review among 788 surveyed patients who also consented to medical record review.Results: Of the 2025 patients surveyed, 99.9% of patients reported positive responses to at least one of seven measures of participation. High participation (use of >4 activities) was strongly associated with patients' favorable ratings of the hospital quality of care (adjusted OR: 5.46, 95% CI: 4.15-7.19). Among the 788 patients with both patient survey and chart review data, there was an inverse relationship between participation and adverse events. In multivariable logistic regression analyses, patients with high participation were half as likely to have at least one adverse event during the admission (adjusted OR = 0.49, 0.31-0.78).Conclusions: Most hospitalized patients participated in some aspects of their care. Participation was strongly associated with favorable judgments about hospital quality and reduced the risk of experiencing an adverse event. [ABSTRACT FROM AUTHOR]

OBJECTIVE: Under the The Health Insurance Portability and Accountability Act Privacy Rule, researchers are required to obtain written authorization from patients to gain access to protected health information. The purpose of this research was to examine how the characteristics of authorization forms used by hospitals affect the likelihood of consent. METHOD: This work reports on a recent telephone survey (administered January to August 2004) of previously hospitalized patients from 16 Massachusetts hospitals. Respondents were asked to provide authorization for review of their medical records. Those respondents who agreed over the phone to be mailed authorization forms were sent a copy of their hospital's form and were asked to sign and return it. Measured characteristics of the forms included number of pages, number of fields, distinctness of institution's name, whether a witness was required, and requirement of Social Security Number (SSN). RESULTS: We received 1021 signed forms (50.3% of all sent forms). The likelihood of return was affected by the requirement of the SSN, the clarity of the hospital name, and providing an extra copy for respondents' records. In logistic regression analysis, besides age and gender, only the SSN and clarity of the hospital name identification were significant. CONCLUSION: Forms should be clear about the institution from which they come, easy to understand, and should not ask for SSN or other highly sensitive information unrelated to health care. [ABSTRACT FROM AUTHOR]

Objective: To describe how cognitive testing results were used to inform the modification and selection of items for the Consumer Assessment of Health Providers and Systems (CAHPS) Hospital Survey pilot test instrument.Data Sources: Cognitive interviews were conducted on 31 subjects in two rounds of testing: in December 2002-January 2003 and in February 2003. In both rounds, interviews were conducted in northern California, southern California, Massachusetts, and North Carolina.Study Design: A common protocol served as the basis for cognitive testing activities in each round. This protocol was modified to enable testing of the items as interviewer-administered and self-administered items and to allow members of each of three research teams to use their preferred cognitive research tools.Data Collection/extraction Methods: Each research team independently summarized, documented, and reported their findings. Item-specific and general issues were noted. The results were reviewed and discussed by senior staff from each research team after each round of testing, to inform the acceptance, modification, or elimination of candidate items.Principal Findings: Many candidate items required modification because respondents lacked the information required to answer them, respondents failed to understand them consistently, the items were not measuring the constructs they were intended to measure, the items were based on erroneous assumptions about what respondents wanted or experienced during their hospitalization, or the items were asking respondents to make distinctions that were too fine for them to make. Cognitive interviewing enabled the detection of these problems; an understanding of the etiology of the problem informed item revisions. However, for some constructs, the revisions proved to be inadequate. Accordingly, items could not be developed to provide acceptable measures of certain constructs such as shared decision making, coordination of care, and delays in the admissions process.Conclusions: Cognitive testing is the most direct way of finding out whether respondents understand questions consistently, have the information needed to answer the questions, and can use the response alternatives provided to describe their experiences or their opinions accurately. Many of the candidate questions failed to meet these standards. Cognitive testing only evaluates the way in which respondents understand and answer questions. Although it does not directly assess the validity of the answers, it is a reasonable premise that cognitive problems will seriously compromise validity and reliability. [ABSTRACT FROM AUTHOR]

Background: The most widely used surveys for assessing patient health care experiences in the U.S. are the Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys. Studies examining the associations of language and ethnicity with responses to CAHPS surveys have yielded inconsistent findings. More research is needed to assess the effect of responding to CAHPS surveys in Spanish., Methods: Subjects were patients who had received care at a study community health center in Connecticut within 6 or 12 months of being sent a CAHPS survey that asks about care experiences. The survey included four multi-item measures of care plus an overall rating of the provider. Sampled patients were mailed dual language (English and Spanish) cover letters and questionnaires. Those who did not respond after follow-up mailings were contacted by bilingual interviewers to complete the survey by telephone. We tested three hypotheses for any observed differences by ethnicity and language: 1. Spanish speakers are more likely than others to choose extreme response options. 2. The semantic meaning of the Spanish translation is not the same as the English version of the questions, resulting in Spanish speakers giving different answers because of meaning differences. 3. Spanish speakers have different expectations regarding their health care than those who answer in English. Analyses compared the answers on the survey measures for three groups: non-Hispanics answering in English, Hispanics answering in English, and Hispanics answering in Spanish., Results: The overall response rate was 45%. After adjusting for differences in demographic characteristics and self-rated health, those answering in Spanish gave significantly more positive reports than the other two groups on three of the five measures, and higher than the non-Hispanic respondents on a fourth., Conclusions: Those answering in Spanish gave more positive reports of their medical experiences than Hispanics and non-Hispanics answering in English. Whether these results reflect different response tendencies, different standards for care, or better care experiences is a key issue in whether CAHPS responses in Spanish need adjustment to make them comparable to responses in English., (© 2022. The Author(s).)

Objective: To develop and validate a short measure of trust in the surgical decision making process., Summary of Background Data: Having a reliable and valid measure of trust is important to assess the quality of the patient-surgeon relationship when decisions about surgical procedures are made., Methods: A previously published 10-item trust scale was qualitatively tested with patients, and a revised set of 14 items was tested using a web-based survey of 300 people who had hip, knee or back surgery in the past 2 years. The 14 items were evaluated using patterns of correlations and relevance to medical decision making to create a 5-item version. A 5-item subset was compared to the 14-item version to assess reliability and validity of patient's trust in the surgical decision making process., Results: Of the 300 participants, 32% had hip surgery, 33% had knee surgery, and 34% back surgery. Mean age was 53 years, 45% female, 80% White, and 36% had a high school degree or less. The item intercorrelations for the 14 items were 0.43-0.72 and 0.58-0.71 for the 5 items. Correlation between the versions was 0.96 (P < 0.01). The 14- and 5-item versions were positively correlated with participants' shared decision making process scores (0.42 and 0.41, both P = 0.01), internal consistency reliability scores were 0.95 and 0.89, respectively, and were negatively correlated with their Decision Regret scores (-0.51 and -0.48, both P = 0.01)., Conclusion: The 5-item Trust in the Surgical Decision Scale has strong evidence of validity and reliability for patients who underwent common orthopedic procedures., Competing Interests: SB and MB were supported in part by a grant from the CRICO/Risk Management Foundation of the Harvard Medical Institutions. For the remaining authors, no conflicts of interest were declared., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

The Shared Decision-Making (SDM) Process scale (scored 0-4) uses 4 questions about decision-making behaviors: discussion of options, pros, cons, and preferences. We use data from mail surveys of patients who made surgical decisions at 9 clinical sites and a national web survey to assess the reliability and validity of the measure to assess shared decision-making at clinical sites. Patients at sites using decision aids to promote shared decision-making for hip, knee, back, or breast cancer surgery had significantly higher scores than national cross-section samples of surgical patients for 3 of 4 comparisons and significantly higher scores for both comparisons with "usual care sites." Reliability was supported by an intra-class correlation at the clinical site level of 0.93 and an average correlation of SDM scores for knee and hip surgery patients treated at the same sites of 0.56. The results document the reliability and validity of the measure to assess the degree of shared decision-making for surgical decisions at clinical sites., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2021.)

Objective: The objective of this study was to compare results of using web-based and mail (postal) Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) data collection protocols., Research Design: Patients who had been hospitalized in a New England Hospital were surveyed about their hospital experience. Patients who provided email addresses were randomized to 1 of 3 data collection protocols: web-alone, web with postal mail follow-up, and postal mail only. Those who did not provide email addresses were surveyed using postal mail only. Analyses compared response rates, respondent characteristics, and patient-reported experiences., Subjects: For an 8-week period, patients were discharged from the study hospital to home., Measures: Measures included response rates, characteristics of respondents, 6 composite measures of their patient experiences, and 2 ratings of the hospital., Results: Response rates were significantly lower for the web-only protocol than the mail or combined protocols, and those who had not provided email addresses had lower response rates. Those over 65 were more likely than others to respond to all protocols, especially for the mail-only protocols. Respondents without email addresses were older, less educated, and reported worse health than those who provided email addresses. After adjusting for respondent differences, those in the combined protocol differed significantly from the mail (postal) only respondents on 2 measures of patient experience; those in the web-only protocol differed on one. Those not providing an email address differed from those who did on one measure., Conclusion: If web-based protocols are used for HCAHPS surveys, adjustments for a mode of data collection are needed to make results comparable., Competing Interests: The authors declare no conflict of interest., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Importance: Thresholds for initiating statin therapy should be informed by patients' preferences., Objective: To define the preference distribution for statin therapy across the spectrum of cardiovascular disease (CVD) risk after participants were informed about the benefits and harms of statin therapy., Design, Setting, and Participants: A cross-sectional survey was conducted from May 13 to June 2, 2020. Participants included 304 individuals aged 40 to 75 years drawn from a nonprobability opt-in panel who had not taken a statin or proprotein convertase subtilisin/kexin type 9 inhibitor in the past 3 years and knew the results of their total cholesterol, high-density lipoprotein cholesterol, and blood pressure measurements., Exposures: Personalized 10-year CVD risk with and without statin therapy and potential harms of statins., Main Outcomes and Measures: The primary outcome was self-reported preference for statin therapy., Results: The 304 participants had a mean (SD) age of 54.8 (9.9) years; 152 were women (50.0%), 130 (42.8%) non-White, 50 (16.6%) had a high school degree or less education, and 153 (50.8%) reported never needing help reading health materials. When asked their preference for using statin therapy after reviewing their benefit and risk information, 45% of the participants reported they would definitely or probably choose statin therapy. As the risk increased, the proportion who would choose statin therapy generally increased (from 31.1% for a risk <5% to 82.6% for a risk >50%). The minimum risk threshold had to increase to 20% before 75% of respondents in that risk group would want statin therapy. For participants with a risk greater than 10%, the desire to use statin therapy decreased as participants' health literacy, subjective numeracy, and knowledge scores increased., Conclusions and Relevance: In this study, preferences for statin therapy for primary prevention of CVD appeared to vary across the spectrum of 10-year cardiovascular risk, but they were relatively flat at intermediate levels of risk. This preference distribution suggests a broad risk range for shared decision-making.

Background: The Shared Decision Making (SDM) Process scale is a short patient-reported measure of the amount of SDM that occurs around a medical decision. SDM Process items have been used previously in studies of surgical decision making and exhibited discriminant and construct validity., Method: Secondary data analysis was conducted across 8 studies of 11 surgical conditions with 3965 responses. Each study contained SDM Process items that assessed the discussion of options, pros and cons, and preferences. Item wording, content, and number of items varied, as did inclusion of measures assessing decision quality, decisional conflict (SURE scale), and regret. Several approaches for scoring, weighting, and the number of items were compared to identify an optimal approach. Optimal SDM Process scores were compared with measures of decision quality, conflict, and regret to examine construct validity; meta-analysis generated summary results., Results: Although all versions of the scale were highly correlated, a short, partial credit, equally weighted version of the scale showed favorable properties. Overall, higher SDM Process scores were related to higher decision quality ( d = 0.18, P = 0.029), higher SURE scale scores ( d = 0.57, P < 0.001), and lower decision regret ( d = -0.34, P < 0.001). Significant heterogeneity was present in all validity analyses., Limitations: Included studies all focused on surgical decisions, several had small sample sizes, and many were retrospective., Conclusion: SDM Process scores showed resilience to coding changes, and a scheme using the short, partial credit, with equal weights was adopted. The SDM Process scores demonstrated a small, positive relationship with decision quality and were consistently related to lower decision conflict and less regret, providing evidence of validity across several surgical decisions.

Background: Patients' behaviors play a key role in chronic disease management, but how effective they are may depend on how engaged they feel. The objective was to develop a short measure of how much patients felt engaged in self-managing a chronic condition. Online test of a three-question series followed by a survey of physicians and their eligible diabetic patients. Physicians answered: 1) how well the physician thought the patient was managing his/her diabetes, and 2) how much effort the physician thought the patient was putting in. Each patient was mailed a survey that included three questions on self-management. Six hundred six patients from a national online consumer panel with diabetes or obesity, and 35 physicians from 3 primary care practices and a sample of 243 of their diabetic patients. Respondents were asked three questions about how much they thought their behavior could affect their health condition, how confident they were that they could do what was needed, and how involved they were in decisions about managing their condition. These items were summed to create a WELL score. Descriptive statistics and correlation coefficients were used to describe item relationships. Generalized Estimating Equations were used to predict how well the physician thought the patient was managing their diabetes and patient effort., Results: Correlations among the three patient-reported items ranged from - 0.01 to 0.45. The WELL score was correlated with an existing measure of patient activation commitment (r = .43, p < 0.001) and found to be a significant predictor of physicians' ratings of how much effort patients devoted to condition management (b = 0.02, p = 0.001, OR = 1.02) after adjusting for confounders. The WELL score didn't predict physicians' ratings of how effective patients were (b = 0.003, p = .526, OR = 1.004) after their A1c score had been taken into account., Conclusion: Patients' WELL scores predicted physicians' ratings of patient effort in diabetes self-management.

Background: Despite recommendations to screen adults for depression in primary care, little is known about how people across education levels decide to treat their depression and factors that influence their decision., Methods: We conducted a secondary analysis of a national, probability-based web survey in English-speaking adults aged 40 or older living in the United States who reported they discussed starting or continuing an antidepressant with their clinician in the past 2 years. Respondents answered questions about knowledge, decision-making process, and demographics. Education level was analyzed using 5 ordered categories. The Shared Decision Making (SDM) Process score was used to assess patient involvement. Descriptive statistics, χ 2 tests, analysis of variance, and regression models were used to describe the data and test associations., Results: Of the 5682 people invited, 3396 answered questions about health decisions (59.8% response rate) and 385 reported discussing antidepressants. The mean percentage of knowledge questions answered correctly increased as education level increased ( P = .008). The mean SDM Process score also increased with education ( P = .001). There was an association between education and who made the treatment decision, suggesting that for respondents with less education, the clinician was more likely to decide ( P = .001). Respondents with less education were less likely to report they would definitely make the same decision again ( P = .000)., Conclusions: Those with less education were even less informed, had lower SDM Process scores and were less likely to think they made the right decision about antidepressants. There is a need to ensure patients are better informed about and involved in treatment for depression., Competing Interests: Conflict of interest: none., (© Copyright 2020 by the American Board of Family Medicine.)

Objective. If shared decision making (SDM) is to be part of quality assessment, it is necessary to have good measures of SDM. The purpose of this study is to compare the psychometric performance of 3 short patient-reported measures of SDM. Methods. Patients who met with a specialist to discuss possible surgery for hip or knee osteoarthritis (hips/knees), lumbar herniated disc, or lumbar spinal stenosis (backs) were surveyed shortly after the visit and again 6 months later. Some of the patients saw a patient decision aid (PDA) prior to the meeting. The 3 SDM measures were the SDM Process&#95;4 (SDMP) survey, CollaboRATE, and SURE scale. The follow-up survey included measures of decision regret, satisfaction, and decision quality. Results. Patients in the sample ( N = 649) had a mean age of 63.3 years, 51% were female, 60% were college educated, and there were more hip/knee patients than back patients (69% v. 31%). Forty-nine percent had surgery. For hips/knees, the SDMP and SURE scores were significantly associated with viewing all of the PDA compared with those who did not ( P < 0.001), but not for CollaboRATE ( P = 0.35). For backs, none of the scores were significantly associated with viewing all the PDA. All 3 scores were significantly associated with less regret and higher satisfaction ( P < 0.001) for hips/knees. For backs, only SURE and CollaboRATE were significantly associated with less regret, and only SDMP was significantly associated with higher satisfaction. For hips/knees and backs, the SDMP and SURE scales were significantly associated with an informed patient-centered decision ( P < 0.001), but this relationship was not significant for CollaboRATE (hips/knees: P = 0.24; backs: P = 0.25). Discussion. Each measure has some evidence of validity. SURE and SDMP better discriminate the use of PDAs and have higher decision quality.

Objective: The objective of this study was to compare response rates, respondents' characteristics, and substantive results for CAHPS surveys administered using web and mail protocols., Data Sources: Patients who had one or more primary care visits in the preceding 6 months., Study Design/data Collection Methods: Patients for whom primary care practices had email addresses were randomized to one of four survey administration protocols: web via a portal invitation; web via an email invitation; combination of web and mail; and mail only. Another sample of patients without known email addresses was surveyed by mail. Samples of nonrespondents to the Internet and mail protocols were surveyed by telephone., Principal Findings: Response rates to surveys administered using the Internet protocols were lower than for the surveys administered by mail (20 percent vs over 40 percent). However, characteristics of respondents and survey answers were very similar across protocols. Respondents without email addresses were older, less educated, and more likely to be male than those with email addresses, and there were a few differences in their responses. There was little evidence of nonresponse bias in either the mail or web protocols., Conclusion: In this well-educated patient population, web protocols had lower response rates, but substantive results very similar to those from mail protocols., (© Health Research and Educational Trust.)

Objective: The objective of this study was to assess nonresponse error in telephone health survey data based on an address-based sample., Data Sources: Telephone and in-person interviews in Greater Boston., Study Design/data Collection: Interviewers attempted telephone interviews at addresses that were matched to telephone numbers using questions drawn from federal health surveys. In-person household interviews were carried out with telephone nonrespondents and at addresses without matching telephone numbers., Principal Findings: After adjusting for demographic differences, only eight of 15 estimates based on the telephone interviews lay within two standard errors of the estimates when data from all three groups were included., Conclusions: For health surveys of address-based samples, many estimates based on telephone respondents differ from the total population in ways that cannot be corrected with simple demographic adjustments., (© Health Research and Educational Trust.)

A symptom index for benign prostatic hyperplasia (BPH) was developed and validated by a multidisciplinary measurement committee of the American Urological Association (AUA). Validation studies were conducted involving a total of 210 BPH patients and 108 control subjects. The final AUA symptom index includes 7 questions covering frequency, nocturia, weak urinary stream, hesitancy, intermittence, incomplete emptying and urgency. On revalidation, the index was internally consistent (Cronbach's α = 0.86) and the score generated had excellent test-retest reliability (r = 0.92). Scores were highly correlated with subjects' global ratings of the magnitude of their urinary problem (r = 0.65 to 0.72) and powerfully discriminated between BPH and control subjects (receiver operating characteristic area 0.85). Finally, the index was sensitive to change, with preoperative scores decreasing from a mean of 17.6 to 7.1 by 4 weeks after prostatectomy (p <0.001). The AUA symptom index is clinically sensible, reliable, valid and responsive. It is practical for use in practice and for inclusion in research protocols., (Copyright © 1992 American Urological Association, Inc. Published by Elsevier Inc. All rights reserved.)

Few self-report measures of medication adherence have been rigorously developed and validated against electronic drug monitoring (EDM). Assess the validity of the 3-item self-report scale by comparing it with a contemporaneous EDM measure. We conducted an observational study in which adherence assessments were done monthly for up to 4 months for 81 patients with HIV who were taking antiretroviral medications. We report results for both HIV antiretroviral medications, and also for other, non-HIV-related medications. Raw and calibrated self-report adherence measures, electronic drug monitoring adherence measures, and sociodemographic variables. The mean age of patients was 46 years, 37 % were female, 49 % had some education beyond high school, 22 % were Black, and 22 % were Hispanic. Cronbach's alphas for the 3-item scale for HIV and non-HIV medications were 0.83 and 0.87, respectively. The mean differences (raw/uncalibrated self-report scale minus EDM) for HIV and non-HIV medications were 7.5 and 5.2 points on a 100-point scale (p < 0.05 for both). Pearson correlation coefficients between the calibrated 3-item scale and the EDM for HIV and non-HIV medications were 0.47 and 0.59, respectively. The c-statistics for the ROC curves for the calibrated scale, using cut-offs of 0.8 and 0.9 for the EDM gold standard measure to define non-adherence, were between 0.74 and 0.76 for HIV and non-HIV medications. This 3-item adherence self-report scale showed good psychometric characteristics and good construct validity when compared with an EDM standard, for both HIV and non-HIV medications. In clinical care it can be a useful first-stage screener for non-adherence. In clinical research and quality improvement settings it can be a useful tool when more complex and expensive methods such as EDM or pharmacy claims are impractical or unavailable.

Introduction: Prostate-specific antigen (PSA) testing remains controversial, with most guidelines recommending shared decision making. This study describes men's PSA screening preferences before and after viewing a decision aid and relates these preferences to subsequent clinician visit content., Methods: Men were recruited from two health systems in 2009-2013. Participants answered a questionnaire before and after decision aid viewing addressing PSA screening preferences and five basic knowledge questions. At one health system, participants also answered a survey after a subsequent clinician visit. Data were analyzed in 2014., Results: One thousand forty-one predominantly white, well-educated men responded to the pre- and post-viewing questionnaire (25% and 29% response rates at the two sites). After viewing, the proportion of patients leaning away from PSA screening increased significantly (p<0.001), with 386 (38%) leaning toward PSA screening versus 436 (43%) before viewing; 174 (17%) unsure versus 319 (32%) before; and 448 (44%) leaning away versus 253 (25%) before. Higher knowledge scores were associated with being more likely to lean against screening and less likely to be unsure (p<0.001). Among 278 men who also completed a questionnaire after a subsequent clinician visit, participants who planned to discuss PSA screening with their clinicians were significantly more likely to report such discussions than participants who did not (148/217 [68%] vs 16/46 [35%], respectively [p<0.001])., Conclusions: A decision aid reduces men's interest in PSA screening, particularly among the initially unsure. Men who plan to discuss PSA screening with their clinician after a decision aid are more likely to do so., (Copyright © 2015 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.)

The Centers for Medicare and Medicaid Services (CMS) uses Adult Hospital Consumer Assessment of Healthcare Providers and Systems (Adult HCAHPS) scores for public reporting and pay-for-performance for most US hospitals, but no publicly available standardized survey of inpatient experience of care exists for pediatrics. To fill the gap, CMS and the Agency for Healthcare Research and Quality commissioned the development of a pediatric version (Child HCAHPS), a survey of parents/guardians of pediatric patients (<18 years old) who were recently hospitalized. This article describes the development of Child HCAHPS, which included an extensive review of the literature and quality measures, expert interviews, focus groups, cognitive testing, pilot testing of the draft survey, a national field test with 69 hospitals in 34 states, psychometric analysis, and end-user testing of the final survey. We conducted extensive validity and reliability testing to determine which items would be included in the final survey instrument and develop composite measures. We analyzed national field test data of 17,727 surveys collected in November 2012 to January 2014 from parents of recently hospitalized children. The final Child HCAHPS instrument has 62 items, including 39 patient experience items, 10 screeners, 12 demographic/descriptive items, and 1 open-ended item. The 39 experience items are categorized based on testing into 18 composite and single-item measures. Our composite and single-item measures demonstrated good to excellent hospital-level reliability at 300 responses per hospital. Child HCAHPS was developed to be a publicly available standardized survey of pediatric inpatient experience of care. It can be used to benchmark pediatric inpatient experience across hospitals and assist in efforts to improve the quality of inpatient care., Competing Interests: The authors have no conflicts of interest., (Copyright © 2015 by the American Academy of Pediatrics.)

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.

Importance: Informing and involving patients in their medical decisions is increasingly becoming a standard for good medical care, particularly for primary care physicians., Objective: To learn how patients describe the decision-making process for 10 common medical decisions, including 6 that are most often made in primary care., Design: A survey of a national sample of adults 40 years or older who in the preceding 2 years had either experienced or discussed with a health care provider 1 or more of 10 decisions: medication for hypertension, elevated cholesterol, or depression; screening for breast, prostate, or colon cancer; knee or hip replacement for osteoarthritis, or surgery for cataract or low back pain., Setting: Adults living in households in the United States in 2011., Participants: A national sample of adults drawn from a probability sample-based web panel developed by Knowledge Networks., Main Outcomes and Measures: Patients' perceptions of the extent to which the pros and cons were discussed with their health care providers, whether the patients were told they had a choice, and whether the patients were asked for their input., Results: Responses were obtained from 2718 patients, with a response rate of 58.3%. Respondents reported much more discussion of the pros than the cons of all tests or treatments; discussions about the surgical procedures tended to be more balanced than those about medications to reduce cardiac risks and cancer screening. Most patients (60%-78%) said they were asked for input for all but 3 decisions: medications for hypertension and elevated cholesterol and having mammograms (37.3%-42.7%). Overall, the reported decision-making processes were most patient centered for back or knee replacement surgery and least for breast and prostate cancer screening., Conclusions and Relevance: Discussions about these common tests, medications, and procedures as reported by patients do not reflect a high level of shared decision making, particularly for 5 decisions most often made in primary care.

Background: Good decision making has been increasingly cited as a core component of good medical care, and shared decision making is one means of achieving high decision quality. If it is to be a standard, good measures and protocols are needed for assessing the quality of decisions. Consistency with patient goals and concerns is one defining characteristic of a good decision. A new method for evaluating decision quality for major surgical decisions was examined, and a methodology for collecting the needed data was developed., Methods: For a national probability sample of fee-for-service Medicare beneficiaries who had a coronary artery bypass graft (CABG), a lumpectomy or a mastectomy for breast cancer, or surgery for prostate cancer during the last half of 2008, a mail-survey of selected patients was carried out about one year after the procedures. Patients' goals and concerns, knowledge, key aspects of interactions with clinicians, and feelings about the decisions were assessed. A decision dissonance score was created that measured the extent to which patient ratings of goals ran counter to the treatment received. The construct and predictive validity of the decision dissonance score was then assessed., Results: When data were averaged across all four procedures, patients with more knowledge and those who reported more involvement reported significantly lower Decision Dissonance Scores. Patients with lower Decision Dissonance Scores also reported more confidence in their decisions and feeling more positively about how the treatment turned out, and they were more likely to say that they would make the same decision again., Conclusions: Surveying discharged surgery patients is a feasible way to evaluate decision making, and Decision Dissonance appears to be a promising approach to validly measuring decision quality.

Background: Patients facing decisions should be told about their options, have the opportunity to discuss the pros and cons, and have their preferences reflected in the final decision., Objectives: To learn how decisions were made for two major preference-sensitive interventions., Design: Mail survey of probability samples of patients who underwent the procedures., Participants: Fee-for-service Medicare beneficiaries who had surgery for prostate cancer or elective coronary artery stenting in the last half of 2008., Main Measurements: Patients' reports of which options were presented for serious consideration, the amount of discussion of the pros and cons of the chosen option, and if they were asked about their preferences., Results: The majority (64%) of prostate cancer surgery patients reported that at least one alternative to surgery was presented as a serious option. Almost all (94%) said they and their doctors discussed the pros, and 63% said they discussed the cons of surgery "a lot" or "some". Most (76%) said they were asked about their treatment preferences. Few who received stents said they were presented with options to seriously consider (10%). While most (77%) reported talking with doctors about the reasons for stents "a lot" or "some", few (19%) reported talking about the cons. Only 16% said they were asked about their treatment preferences., Conclusions: While prostate cancer surgery patients reported more involvement in decision making than elective stent patients, the reports of both groups document the need for increased efforts to inform and involve patients facing preference-sensitive intervention decisions.

Purpose: Robotic-assisted laparoscopic radical prostatectomy is eclipsing open radical prostatectomy among men with clinically localized prostate cancer. The objective of this study was to compare the risks of problems with continence and sexual function following these procedures among Medicare-age men., Patients and Methods: A population-based random sample was drawn from the 20% Medicare claims files for August 1, 2008, through December 31, 2008. Participants had hospital and physician claims for radical prostatectomy and diagnostic codes for prostate cancer and reported undergoing either a robotic or open surgery. They received a mail survey that included self-ratings of problems with continence and sexual function a median of 14 months postoperatively., Results: Completed surveys were obtained from 685 (86%) of 797 eligible participants, and 406 and 220 patients reported having had robotic or open surgery, respectively. Overall, 189 (31.1%; 95% CI, 27.5% to 34.8%) of 607 men reported having a moderate or big problem with continence, and 522 (88.0%; 95% CI, 85.4% to 90.6%) of 593 men reported having a moderate or big problem with sexual function. In logistic regression models predicting the log odds of a moderate or big problem with postoperative continence and adjusting for age and educational level, robotic prostatectomy was associated with a nonsignificant trend toward greater problems with continence (odds ratio [OR] 1.41; 95% CI, 0.97 to 2.05). Robotic prostatectomy was not associated with greater problems with sexual function (OR, 0.87; 95% CI, 0.51 to 1.49)., Conclusion: Risks of problems with continence and sexual function are high after both procedures. Medicare-age men should not expect fewer adverse effects following robotic prostatectomy.

Good-quality care requires that procedures, treatments, and tests be not only medically appropriate, but also desired by informed patients. Current evidence shows that most medical decisions are made by physicians with little input from patients. This article describes issues surrounding informed patient decision making and the steps necessary to improve the way decisions are made. Creating incentives for providers and health care organizations to inform patients and incorporate patients' goals into decisions is critical. Patient surveys are needed to monitor the quality of decision making. Health information technology can help by collecting information from patients about their symptoms, how well they understand their options, and what is important to them, and sharing that information with providers. We review public and private developments that could facilitate the development of tools and methods to improve patient-centered care.

Background: The rise in Internet use for seeking health information raises questions about the role the Internet may play in how patients make medical decisions., Objective: To examine Internet use and perceived importance of different sources of information by patients making 9 specific medical decisions covering prescription medication initiation, cancer screening, and elective surgery., Setting: National sample of US adults identified by random-digit dialing., Design: Cross-sectional survey conducted between November 2006 and May 2007., Participants: The final sample comprised 2575 English-speaking US adults aged 40 y and older who had either undergone 1 of 9 medical procedures or tests or talked with a health care provider about doing so during the previous 2 y., Measurements: Participants indicated if they or other family members used the Internet to seek information related to each of the specific medical decisions and rated how important the health care provider, the Internet (if used), family and friends, and the media (newspapers, magazines, and television) were in providing information to help make the medical decision., Results: Use of the Internet for information related to specific decisions among adults 40 y and older was generally low (28%) but varied across decisions, from 17% for breast cancer screening to 48% for hip/knee replacement. Internet use was higher at younger ages, rising from 14% among those aged 70 y and older to 38% for those aged 40 to 49 y. Internet users consistently rated health care providers as the most influential source of information for medical decisions, followed by the Internet, family and friends, and media., Limitations: Telephone surveys are limited by coverage and nonresponse. The authors excluded health-related Internet use not associated with the 9 target decisions., Conclusions: A minority of patients reported using the Internet to make specific common medical decisions, but use varied widely by type of decision. Perhaps reflecting perceived risk and uncertainty, use was lowest for screening decisions and highest for surgical decisions.

Background: Patient involvement is required before patients' preferences can be reflected in the medical care they receive. Furthermore, patients are a vital link between physicians' assessments of patients' needs and actual implementation of appropriate care. Yet no study has specifically examined how and when a representative sample of patients considered, discussed, and made medical decisions., Objective: To identify decision prevalence and decision-making processes regarding 1) initiation of prescription medications for hypertension, hypercholesterolemia, or depression; 2) screening tests for colorectal, breast, or prostate cancer; and 3) surgeries for knee or hip replacement, cataracts, or lower back pain., Design: Computer-assisted telephone interview survey., Setting: Nationally representative sample of US adults in households with telephones., Participants: 3010 English-speaking adults age 40 and older identified using a stratified random sample of telephone numbers., Measurements: Estimated prevalence of medical decisions, defined as the patient having initiated medications, been screened, or had surgery within the past 2 years or having discussed these actions with a health care provider during the same interval, as well as decision-specific data regarding patient knowledge, attitudes and patient-provider interactions., Results: 82.2% of the target population reported making at least 1 medical decision in the preceding 2 years. The proportion of decisions resulting in patient action varied dramatically both across decision type (medications [61%] v. screening [83%] v. surgery [44%]; P < 0.001), and within each category (e.g., blood pressure medications [76%] v. cholesterol medications [55%] vs. depression medications [48%]; P < 0.001). Respondents reported making more decisions if they had a primary care provider or poorer health status and fewer decisions if they had lower education, were male, or were under age 50. Limitations. Retrospective self-reports may incorporate recall biases., Conclusions: Medical decisions with significant life-saving, quality of life, and cost implications are a pervasive part of life for most US adults. The DECISIONS dataset provides a rich research environment for exploring factors influencing when and how patients make common medical decisions.

Background: Although many researchers have examined patient involvement and patient-provider interactions within specific clinical environments, no nationally representative data exist to characterize patient perceptions of decision making and patient-provider communications across multiple common medical decisions., Objective: To identify deficits and variations in the patient experience of making common medical decisions about initiation of prescription medications for hypertension, hypercholesterolemia, or depression; screening tests for colorectal, breast, or prostate cancer; and surgeries for knee or hip replacement, cataracts, or lower back pain, as well as to identify factors associated with patient confidence in the decisions., Setting: National sample of US adults identified by random-digit dialing., Design: Cross-sectional survey conducted from November 2006 to May 2007., Participants: Included 2473 English-speaking adults age 40 and older who reported undertaking 1 or more of the above 9 medical actions or discussing doing so with a health care provider within the past 2 years., Measurements: Patients reported who initiated discussions and made the final decisions, how much discussion of pros and cons occurred, whether they were asked about their preferences, and their confidence that the decision "was the right one.", Results: The proportion of patient-driven decisions varied significantly across decisions (range: blood pressure: 16% to knee/hip replacement: 48%). Most patients (78%-85%) reported that providers made a recommendation, and such recommendations generally favored taking medical action. Fewer patients reported that providers asked them about their preferences (range: colon cancer screening: 34% to knee/hip replacement: 80%) or discussed reasons not to take action (range: breast cancer screening: 20% to lower back surgery: 80%). Decision confidence was higher among patients who reported primarily making the decision themselves (odds ratio [OR] = 14.6, P < 0.001) or having been asked for their preference (OR = 1.32, P < 0.01) and was lower among patients whose patient-provider discussions included cons (OR = 0.74, P = 0.008)., Limitations: Recall biases may affect patients' memories of their decision-making processes., Conclusions: DECISIONS participants reported wide variations in the proportion of discussions that included a conversation about reasons not to take action or a conversation about patients' preferences about what they would like to do. These factors appear directly related to patients' confidence that the decision was "right."

Background: A two-stage probability sample of patients recently discharged from 16 general acute care hospitals in Massachusetts were interviewed to determine the rates at which patients experience what they considered to be adverse events, to describe the kinds of events they reported, and to identify the correlates of those reports., Methods: Eligible respondents were adults, 18 years of age or older, who were medical or surgical patients overnight or longer between April 1 and October 1, 2003, and who were discharged to their homes in Massachusetts. Questions covered perceptions of adverse events during hospitalizations and possible correlates of those events. Telephone interviews were carried out an average of nine months after discharge with 2,582 patients (response rate, 53%-60%)., Results: Twenty-nine percent of respondents reported at least one unexpected "negative" event during their hospitalization. After physician review, the revised estimate was that 25% perceived that they had experienced at least one event that met our definition for an adverse event. The most common reported events were reactions to newly prescribed drugs (40%) and the effects of surgery (34%). Physician reviewers coded 57% of the adverse events as "significant" and 18% as "serious" or "life-threatening." The physician reviewers also rated 31% of the reported adverse events as likely to be preventable., Discussion: The estimate that one in four hospital patients experienced an adverse event is considerably higher than the published rates based on hospital record review, indicating the potential value of surveys for studies of patient safety. Because of nonresponse among older patients, that estimate is probably an underestimate. Designs that would reduce lags between discharge and interviews and decrease hospital nonresponses would reduce two key threats to confidence in the survey results.

Context: Wide variations in Medicare expenditures exist across regions, but little is known about whether beneficiaries residing in low-expenditure regions perceive receiving lower-quality care than those in high-expenditure regions., Objective: To evaluate how Medicare beneficiaries' perceptions of their health care are related to per capita expenditure in the areas where they live. DESIGN, SETTING, AND RESPONDENTS: A probability sample of Medicare beneficiaries living in households in the United States was surveyed by a combination of mail and telephone in 2005. Each respondent was allocated to 1 of 5 quintiles, depending on mean age-, sex-, and race-adjusted per capita Medicare expenditures based on Centers for Medicare & Medicaid Services claims data., Main Outcome Measures: The survey included 3 questions about perceived unmet need for care, 4 questions about the perceived quality of ambulatory care, and 3 questions rating the perceived quality of overall care., Results: Of 4000 Medicare beneficiaries sampled, 160 (4%) were ascertained to have died or to be living in a long-term care facility. Of the remaining 3840 potentially eligible beneficiaries, 2515 (65%) responded. Per capita expenditures were highly related to receiving more medical care, such as mean number of ambulatory visits to physicians in the past year (range from lowest to highest expenditure quintile, 3.4-3.9; P < .001 for linear trend) and more cardiac tests (respondents reporting receiving tests in past year, 158/387 [40.1%] to 468/739 [63.5%]; P < .001 for linear trend). However, 7 of the 10 measures of perceived quality, including perceived unmet needs for tests and treatment (respondents reporting unmet needs, 15/387 [3.9%] to 37/739 [5.0%]; P = .25 for linear trend) and spending enough time with physicians (respondents reporting adequate time, 311/387 [88.7%] to 603/739 [87.0%]; P = .94 for linear trend), were unrelated to expenditures, while the overall rating of perceived quality of care was higher in the lower-expenditure areas (respondents reporting overall care rating of 9 or 10, 242/387 [63.3%] to 404/739 [55.4%]; P = .008 for linear trend)., Conclusion: In this representative sample of Medicare beneficiaries, no consistent association was observed between the mean per capita expenditure in a geographic area and the perceptions of the quality of medical care of the people who live in those areas.

Objective: To evaluate the psychological, socio-behavioral, and medical implications of apparently false-positive prostate cancer screening results., Methods: One hundred and twenty-one men with a benign prostate biopsy performed in response to a suspicious screening test (biopsy group) and 164 men with a normal prostate-specific antigen (PSA) test result (normal PSA group) responded to a questionnaire 6 weeks, 6 and 12 months after their biopsy or PSA test., Results: The mean (+/-SD) age of respondents was 61+/-9 years (range, 41 to 88 years). One year later, 26% (32/121) of men in the biopsy group reported having worried "a lot" or "some of the time" that they may develop prostate cancer, compared with 6% (10/164) in the normal PSA group (P<.001). Forty-six percent of the biopsy group reported thinking their wife or significant other was concerned about prostate cancer, versus 14% in the normal PSA group (P<.001). Medical record review showed that biopsied men were more likely than those in the normal PSA group to have had at least 1 follow-up PSA test over the year (73% vs 42%, P<.001), more likely to have had another biopsy (15% vs 1%, P<.001), and more likely to have visited a urologist (71% vs 13%, P<.001)., Conclusion: One year later, men who underwent prostate biopsy more often reported worrying about prostate cancer. In addition, there were related psychological, socio-behavioral, and medical care implications. These hidden tolls associated with screening should be considered in the discussion about the benefits and risks of prostate cancer screening.

Background and Objective: There are few validated measures of sinusitis-specific health-related quality of life (HRQL). This study used patient focus and pretesting groups followed by a prospective cohort study to develop and validate a HRQL instrument for patients with sinusitis., Methods: Instrument development involved a systematic literature review, use of expert input, and patient focus and pretesting groups. Patients were recruited from the practices of primary care providers and otolaryngologists. The derived survey instrument then underwent prospective testing in patients with acute sinusitis, chronic sinusitis, allergic rhinitis, and asymptomatic controls. Reduced item scales of the original instrument were developed for symptom frequency and bothersomeness. The psychometric properties of the survey instrument were evaluated for reliability, construct validity, responsiveness, and interpretability., Results: In the prospective study, 47 patients with acute sinusitis and 50 patients with chronic sinusitis were compared to 18 patients with allergic rhinitis and 60 patients without nasal symptoms. Forty-three (91.5%) patients with acute sinusitis completed the questionnaire at baseline and at 1-month follow-up. Internal consistency was high for the symptom impact scale for acute and chronic sinusitis patients. The symptom frequency and especially bothersomeness scales had lower internal consistency particularly for acute sinusitis patients. Reproducibility among surgical patients retested prior to their procedure was good for each scale. A high degree of disciminant validity was demonstrated when comparing sinusitis patients to other groups, and a high degree of convergent validity was seen when the new measures were compared to other HRQL measures at baseline. Among patients with acute sinusitis, the responsiveness and interpretability of the symptom frequency, bothersomeness and impact scales were excellent., Conclusions: This study developed and validated a new sinusitis-specific HRQL instrument. The instrument included symptom frequency, bothersomeness and impact scales. It was shown to be valid in patients with acute and chronic sinusitis, and highly responsive and interpretable in acute sinusitis patients managed in the primary care setting.

Purpose: We assessed the validity of patient self-report of abnormal (but not cancer) prostate biopsy results, ie, atypical cells or prostatic intraepithelial neoplasia., Materials and Methods: We compared survey responses and pathology records for 156 men from a multicenter, prospective cohort study, which was designed to evaluate the impact of a suspicious prostate cancer screening test followed by benign prostate biopsy., Results: Of the 156 subjects 45 (29%) reported having had atypical cells or prostatic intraepithelial neoplasia and 38 (24%) had a pathology report with atypia or prostate intraepithelial neoplasia. The sensitivity of the self-report was 87%, specificity was 90%, positive predictive value was 73% and negative predictive value was 95%. The kappa statistic was 0.7., Conclusions: Men in this study reported this complex result accurately. However, it was concerning that 5 men (13%) appeared unaware of an abnormal prostate biopsy result, especially given the substantial residual risk of prostate cancer conferred by this result.

Purpose: To evaluate the psychological implications of an apparently false-positive screening result for prostate cancer., Methods: The sample comprised 167 men with a benign biopsy result in response to a suspicious screening test result (biopsy group) and 233 men with a normal prostate-specific antigen (PSA) test result (control group). The men responded to a questionnaire within about 6 weeks of their biopsy or PSA results. They were asked about demographic characteristics, medical history, psychological effects, biopsy experience, and prostate cancer knowledge., Results: The survey response rate was 85% (400/471). The mean (+/- SD) age of respondents was 60 +/- 9 years (range, 40 to 88 years); 88% (n = 350) were white. Forty-nine percent (81/167) of men in the biopsy group reported having thought about prostate cancer either "a lot" or "some of the time", compared with 18% (42/230) in the control group (P < 0.001). In addition, 40% (67/167) in the biopsy group reported having worried "a lot" or "some of the time" that they may develop prostate cancer, compared with 8% (18/231) in the control group (P < 0.001)., Conclusion: Men who underwent prostate biopsy more often reported having thought and worried about prostate cancer, despite having received a benign result. This underrecognized human cost of screening should be considered in the debate about the benefits and harms of prostate cancer screening.

Context: Public health officials, physicians, and disease advocacy groups have worked hard to educate individuals living in the United States about the importance of cancer screening., Objective: To determine the public's enthusiasm for early cancer detection., Design, Setting, and Participants: Survey using a national telephone interview of adults selected by random digit dialing, conducted from December 2001 through July 2002. Five hundred individuals participated (women aged > or =40 years and men aged > or =50 years; without a history of cancer)., Main Outcome Measures: Responses to a survey with 5 modules: a general screening module (eg, value of early detection, total-body computed tomography); and 4 screening test modules: Papanicolaou test; mammography; prostate-specific antigen (PSA) test; and sigmoidoscopy or colonoscopy., Results: Most adults (87%) believe routine cancer screening is almost always a good idea and that finding cancer early saves lives (74% said most or all the time). Less than one third believe that there will be a time when they will stop undergoing routine screening. A substantial proportion believe that an 80-year-old who chose not to be tested was irresponsible: ranging from 41% with regard to mammography to 32% for colonoscopy. Thirty-eight percent of respondents had experienced at least 1 false-positive screening test; more than 40% of these individuals characterized that experience as "very scary" or the "scariest time of my life." Yet, looking back, 98% were glad they had had the initial screening test. Most had a strong desire to know about the presence of cancer regardless of its implications: two thirds said they would want to be tested for cancer even if nothing could be done; and 56% said they would want to be tested for what is sometimes termed pseudodisease (cancers growing so slowly that they would never cause problems during the persons lifetime even if untreated). Seventy-three percent of respondents would prefer to receive a total-body computed tomographic scan instead of receiving 1000 dollars in cash., Conclusions: The public is enthusiastic about cancer screening. This commitment is not dampened by false-positive test results or the possibility that testing could lead to unnecessary treatment. This enthusiasm creates an environment ripe for the premature diffusion of technologies such as total-body computed tomographic scanning, placing the public at risk of overtesting and overtreatment.

The phenomenon of practice variation draws attention to the need for better management of clinical decision making as a means of ensuring quality. Different policies to address variations, including guidelines and measures of appropriateness, have had little demonstrable impact on variation itself or on the underlying quality problems. Variations in rates of interventions raise questions about the patient-centeredness of decisions that determine what care is provided to whom. Policies that support the development and routine use of measures of decision quality will provide opportunities to measurably improve the quality of decisions, thereby leading to more patient-centered and efficient health care.

Objectives: To examine whether physicians' views on prostate cancer screening and treatment vary by geographic region in the United States., Methods: A mail survey was sent in 1998 to a random sample of physicians in the United States who were listed as radiation oncologists (response rate 76%, n = 559) and urologists (response rate 64%, n = 504) in the American Medical Association Registry of Physicians and practicing at least 20 hr/wk., Results: Radiation oncologists and urologists in Florida were more likely to report recommending routine prostate-specific antigen testing for men aged 75 years and older than were their colleagues in other regions of the United States. The Florida physicians were more likely to report treating at least 20% of their patients with brachytherapy and to report believing that brachytherapy has survival value for men with a less than 10-year life expectancy. No regional differences were found in the radiation oncologists' and urologists' beliefs about the survival value of radical prostatectomy; however, for men with a less than 10-year life expectancy, Florida urologists had more confidence in the survival benefit of external beam radiotherapy than urologists in other regions (P = 0.04). Radiation oncologists in Florida reported higher rates of recommending early androgen deprivation for a rising PSA after both radiotherapy and surgery (P = 0.008 and P = 0.001, respectively) than did their colleagues in other regions., Conclusions: Florida radiation oncologists and urologists reported beliefs and practices that differed from their colleagues in other regions of the United States. Whether the distinctive style of prostate cancer diagnosis and treatment in Florida results in improved outcomes has yet to be proved.

Background: Androgen deprivation is commonly prescribed for men with a rising prostate specific antigen level after radical prostatectomy, despite scant evidence regarding its efficacy and side effects. In the current study, the authors compared measures of health-related quality of life (HRQOL) in men who were treated with androgen deprivation after radical prostatectomy with those for men who underwent surgery but were not treated with androgen deprivation., Methods: Medicare Provider and Analysis and Review (MedPAR) files were used to identify men who had undergone radical prostatectomies between 1991-1992. Medicare Part B data then were used to select two samples: men who subsequently were androgen deprived and those who were not. In 1999, a mail survey was administered that addressed a range of disease-related and treatment-related issues, including HRQOL. Age-adjusted comparisons of responses to seven multiitem measures of HRQOL were performed., Results: The overall response rate was 82%. On all seven HRQOL measures (impact of cancer and treatment, concern regarding body image, mental health, general health, activity, worries about cancer and dying, and energy), there were statistically significant decrements associated with androgen deprivation., Conclusions: Patients and physicians must weigh the price patients pay with regard to HRQOL against the uncertain benefits of early androgen deprivation., (Copyright 2002 American Cancer Society.DOI 10.1002/cncr.10656)

Objective: To assess the nonresponse bias associated with mail-survey returns and the potential for telephone interviews with nonrespondents to reduce that bias., Methods: A mail survey about health care experiences was conducted with samples of 800 members in each of four health plans. Subsequent attempts were made to interview nonrespondents by telephone., Results: Response rates for the mail surveys averaged 46%; the telephone effort raised the average to 66%. On 17 of 19 measures of health status or need and use of health services, mail respondents were in poorer health and needed more services than interviewed nonrespondents. Thirteen of 36 reports and ratings of health care also differed significantly between the two groups. Based on administrative data, telephone interviews of mail nonrespondents improved the demographic representativeness of the responding samples. Adjusting mail returns to sample population characteristics could not replicate the dual-mode results., Conclusions: Returns to mail surveys are likely to be related to survey content and hence are potentially biased. Nonresponse to phone surveys is less directly related to survey content. Telephone interviews with mail nonrespondents not only increase response rates but also can produce less biased samples than mail-only protocols.

Purpose: We used data from a large Veterans Affairs trial of medical therapy for men with benign prostatic hyperplasia to evaluate the value of calculating separate filling and voiding subscores of the American Urological Association (AUA) symptom index., Materials and Methods: We performed factor analysis to assess the psychometric validity of separating the 7 items of the AUA symptom index into filling and voiding subsets. To assess the clinical usefulness of calculating these subscores we correlated them against baseline measurements of symptom interference as well as urodynamic and anatomical measures of disease severity, and used them for predicting the response to medical therapy., Results: Factor analysis confirmed the psychometric validity of separating the AUA symptom index into a 3-item filling and a 4-item voiding subscale. However, calculating filling and voiding subscores did not result in differential correlations with measures of disease interference or severity. It also did not enable us to predict a better symptomatic or uroflowmetry response to medical therapy., Conclusions: Calculating separate filling and voiding subscores of the AUA symptom index is psychometrically valid but not clinically useful.

Background: In 1995 the Agency for Health Care Policy and Research began a five-year project, Consumer Assessment of Health Plans (CAHPS), to create instruments to collect data from consumers about their health care experiences, to develop sophisticated methods to convey these data to consumers, and to evaluate the value of these data to consumers who are selecting health plans. Results were obtained from one of the first CAHPS demonstration sites, the Washington State Health Care Authority., Methods: The survey was distributed in May-June 1997 to 15,885 enrollees in 20 health plans; 8,204 (51.6%) surveys were completed. Survey results were summarized in a report that described the performance of plans, which was distributed to 97,000 enrollees, and reactions to the report were obtained from more than 1,500 individuals., Results: Nearly everyone who was mailed the report said they saw it. A large proportion said they read most or all of it, and most thought the report was easy to understand, contained information needed to rate plans, and was helpful to learning about differences between plans. Those who used the CAHPS performance report were more likely to switch plans and to report that they were confident they had selected the best plan for their situation., Discussion: The study was unique in that it attempted to evaluate whether employees read the performance report, how they reacted to it, and whether reading it influenced their decision to switch plans or their confidence that they had selected a suitable plan. Choosing a new plan probably stimulated more intense scrutiny of the report than not anticipating switching.

Context: Multiple treatment options are available for men with prostate cancer, but therapeutic recommendations may differ depending on the type of specialist they consult., Objective: To define and contrast the distribution of management recommendations by urologists and radiation oncologists for a spectrum of men with prostate cancer., Design, Setting, and Participants: Mail survey sent in 1998 to a random sample of physicians in the United States, who were listed as urologists (response rate 64%, n=504) and radiation oncologists (response rate 76%, n=559) in the American Medical Association Registry of Physicians and practicing at least 20 hours per week., Main Outcome Measure: Questionnaire addressing beliefs and practices regarding prostate cancer management., Results: Forty-three percent of radiation oncologists vs 16% of urologists would recommend routine prostate-specific antigen testing for men aged 80 years and older. For men with moderately differentiated, clinically localized cancers, and a more than 10-year life expectancy, 93% of urologists chose radical prostatectomy as the preferred treatment option, while 72% of radiation oncologists believed surgery and external beam radiotherapy were equivalent treatments. For most tumor grades and prostate-specific antigen levels, both specialty groups were significantly more likely to recommend the treatment in their specialty than the other treatment. Both groups reported giving patients similar estimates of the risks of complications due to surgery and radiation. Neither group favored watchful waiting in their treatment management except for a subset of men with life expectancies of less than 10 years and cancers with very favorable prognoses (Gleason score of 3 or 4 and prostate-specific antigen level

Objectives: To examine the diagnosis and treatment of chronic prostatitis, we conducted a national mail survey of practicing urologists in 1998., Methods: Probability samples were drawn from the American Medical Association Registry of Physicians., Results: Five hundred four urologists responded (response rate 64%). Urologists reported seeing a median of 30 patients (interquartile range 11 to 60) newly diagnosed with chronic prostatitis in the previous 12 months. Eighty percent of urologists responded that they "rarely" (47%) or "never" (33%) performed the Meares-Stamey four-glass diagnostic test. Only 4% answered "almost always." Forty percent of urologists responded that they treat "all" their patients with antibiotics and 42% more responded that they treat "more than half" with antibiotics. Physicians who routinely performed the four-glass test did not differ in antibiotic use from those who used the test less often; however, they were more likely to use treatment other than antibiotics. For example, alpha-blockers were used in one half or more of the patients by only 35% of physicians who never do the four-glass test compared with 42% who rarely do the test and 57% who do the test more often (P = 0.002). Results were similar for treatment with natural remedies., Conclusions: Urologists frequently diagnose chronic prostatitis but rarely perform the four-glass diagnostic test. Use of the four-glass test does not appear to affect urologists' antibiotic treatment patterns. Although bacterial prostatitis is thought to be rare, antibiotic use in the population of men with prostatitis is not. The four-glass test and empiric antibiotics are practices in the diagnosis and treatment of prostatitis that deserve scrutiny.

Background: Patients infected with HIV value both longevity and health., Objective: To understand how HIV-infected patients value their health., Design: Interview study., Setting: Regional treatment center for HIV., Patients: 51 patients with HIV infection., Measurements: Life-satisfaction, health rating, time-tradeoff, and standard-gamble scores., Results: Of the 51 patients, 49% (95% CI, 35% to 63%) said that their life was better currently than it was before they contracted HIV infection; only 29% said that life was currently worse. The mean (+/- SD) time-tradeoff score was 0.95 +/- 0.10, indicating that, on average, patients would give up no more than 5% of their remaining life expectancy in their current state of health in exchange for a shorter but healthy life. The average health rating score was 71.0 +/- 18.7 on a scale of 0 to 100, and the average standard-gamble score was 0.80 +/- 0.27. Factors contributing to life satisfaction and time-tradeoff scores included spirituality and having children., Conclusion: Many patients with HIV have a strong will to live, and many feel that life with HIV is better than it was before they became infected.

Purpose: Chronic abacterial prostatitis is a syndrome characterized by pelvic pain and voiding symptoms, which is poorly defined, poorly understood, poorly treated and bothersome. Research and clinical efforts to help men with this syndrome have been hampered by the absence of a widely accepted, reliable and valid instrument to measure symptoms and quality of life impact. We developed a psychometrically valid index of symptoms and quality of life impact for men with chronic prostatitis., Materials and Methods: We conducted a structured literature review of previous work to provide a foundation for the new instrument. We then conducted a series of focus groups comprising chronic prostatitis patients at 4 centers in North America, in which we identified the most important symptoms and effects of the condition. The results were used to create an initial draft of 55 questions that were used for formal cognitive testing on chronic prostatitis patients at the same centers. After expert panel review formal validation testing of a revised 21-item draft was performed in a diverse group of chronic prostatitis patients and 2 control groups of benign prostatic hyperplasia patients and healthy men. Based on this validation study, the index was finalized., Results: Analysis yielded an index of 9 items that address 3 different aspects of the chronic prostatitis experience. The primary component was pain, which we captured in 4 items focused on location, severity and frequency. Urinary function, another important component of symptoms, was captured in 2 items (1 irritative and 1 obstructive). Quality of life impact was captured with 3 items about the effect of symptoms on daily activities. The 9 items had high test-retest reliability (r = 0.83 to 0.93) and internal consistency (alpha = 0.86 to 0.91). All but the urinary items discriminated well between men with and without chronic prostatitis., Conclusions: The National Institutes of Health chronic prostatitis symptom index provides a valid outcome measure for men with chronic prostatitis. The index is psychometrically robust, easily self-administered and highly discriminative. It was formally developed and psychometrically validated, and may be useful in clinical practice as well as research protocols.

Objectives: This study was done to assess the feasibility of respondent selection by mail to obtain random samples of both child and adult enrollees of health plans when only subscriber contact information is available., Methods: The subjects were enrollees of health plans covered under the policies of employees of the State of Washington. Subscribers were eligible for inclusion in the study samples if they had been enrolled for at least 6 months and, depending on the test, had at least one child and/or a spouse enrolled under their policy. Subjects were randomly assigned to six groups: three approaches for sampling children, two approaches for sampling adults, and one test of parents' willingness to return a questionnaire about themselves. Child selection protocols involved asking respondents to complete either a child-only or a dual questionnaire, asking them to follow a decision rule to choose a sample person, and collecting data in two phases, asking respondents to return material twice., Results: Results indicated that asking subscribers to select an adult respondent by mail was not a success. At least given the procedures we used, adults did not demonstrate good compliance with the respondent selection process offered them. In contrast, parents proved willing to follow a more complicated child selection rule and to do it nearly perfectly., Conclusions: Parents will follow a decision rule to select an eligible child, but requiring this additional respondent selection step may be associated with a slightly decreased response rate. Asking parents to return materials twice is feasible, but it is too cumbersome a procedure to be practical. It is possible to collect data about both an adult and a child using a dual instrument; however, the increase in information is tempered by a decrease in response rates.

Objectives: The Consumer Assessment of Health Plans (CAHPS) survey is designed to collect member experiences with getting medical care. The objective was to evaluate the comparability of answers to CAHPS questions when data are collected by mail and by telephone interview., Methods: Two studies comparing phone and mail responses used a pretest instrument with parallel samples drawn from Medicaid beneficiaries in California (n = 217 telephone, 97 mail) and adults with chronic conditions who had health insurance through the State of Washington (n = 98 telephone, 109 mail). A third study used a revised instrument with two parallel cross-section samples of adults covered through the State of Washington (n = 446 telephone, 609 mail). Questions covered respondents' experiences with getting medical care through their health plans., Results: In the first two tests, numerous significant differences were found in the rates at which questions that potentially did not apply to all respondents were answered: some ratings were more positive on the telephone. In the test of a revised instrument, nine of 58 comparisons differed significantly by mode. The systematic differences in response to questions that did not apply to all respondents were greatly reduced. Only one of four ratings and one of seven multi-item composite measures of quality of care were significantly different by mode., Conclusion: Although further steps to reduce the remaining mode effects are needed, the data indicate that when the revised CAHPS questions are used, mode of data collection will have little effect on the key results.