A frequently used patient and physician-directed educational intervention does nothing to improve primary care of prostate conditions.

OBJECTIVES: To measure the impact of an educational intervention directed at both patients and their primary care physicians about prostate-related conditions. METHODS: We used a randomized, control design for 50 physicians in 33 rural primary care practices from New England and Arkansas and a probability sample of 2402 of their male patients. For the physicians, we mailed two newsletters, conducted two face-to-face research staff visits, and provided printed educational manuals about the management of prostate conditions. For the patients, mailed educational pamphlets were targeted to the baseline symptom levels. After 18 months, 87% of patients and 92% of physicians completed a final survey. The patient survey measured health status, urinary symptoms and bother, treatments received, and prostate-related knowledge. The final physician survey asked them about their management of common prostate conditions. RESULTS: Before randomization, most men (59%) said they knew little or nothing about prostate problems that affect urination, and 63% also reported "little" or "no" knowledge about prostate-specific antigen testing. Eighteen months later, we observed no differences between the intervention and control patients in the measures of health status, urinary symptoms and bother, treatments received, and prostate-related knowledge. The intervention, physicians' knowledge, and self-reported practices for managing common prostate conditions were no better than the control physicians'. CONCLUSIONS: This commonly used education strategy had no measurable impact on prostate-related care.

Filling and voiding symptoms in the American Urological Association symptom index: the value of their distinction in a Veterans Affairs randomized trial of medical therapy in men with a clinical diagnosis of benign prostatic hyperplasia.

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.

Providing consumers with information about the quality of health plans: the Consumer Assessment of Health Plans demonstration in Washington State.

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.

Comparison of recommendations by urologists and radiation oncologists for treatment of clinically localized prostate cancer.

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

Diagnosing and treating chronic prostatitis: do urologists use the four-glass test?

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.

The Consumer Assessment of Health Plan Study (CAHPS) survey of children's health care.

BACKGROUND: Little is known about the experience of children and families with pediatric care. Asking parents about their experiences and the treatment of their children in health care plans can yield important information about selected aspects of medical care quality. Such data can be used to motivate, focus, and evaluate quality improvement efforts. METHODS: Development of the Child Core Survey followed the survey development principles of the Consumer Assessment of Health Plan Study (CAHPS) project, starting with assembly of existing instruments, consultation with experts, focus groups, and cognitive testing. A field test of the survey was conducted by mail among members enrolled in 1 of 25 plans originally identified as providing health care services to the public employees of the state of Washington (response rate, 52%). RESULTS: The 3,083 respondents rated personal doctors most highly, with overall care and specialty care rated nearly as well, and plan administration rated lowest. Parent-clinician and child-clinician communication, as well as spending sufficient time with the child were the strongest correlates of assessments of overall care and of personal doctors. Plans differed significantly in their performance along all the dimensions of child health care assessed in the survey except for aspects of access ("getting the care you need"). IMPLICATIONS: The Child Core Survey from the CAHPS provides a readily accessible method to assess the interpersonal care of children. Such data could be used to make plans accountable to the needs of children, to focus specific improvement initiatives, or both.

The National Institutes of Health chronic prostatitis symptom index: development and validation of a new outcome measure. Chronic Prostatitis Collaborative Research Network.

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.

The will to live among HIV-infected patients.

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.

Methodological challenges for measuring quality of care at the end of life.

Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient's death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures.

The use of cognitive testing to develop and evaluate CAHPS 1.0 core survey items. Consumer Assessment of Health Plans Study.

OBJECTIVES: The main goal of the Consumer Assessments of Health Plans Study (CAHPS) is to develop an integrated set of tested, standardized surveys to obtain meaningful information from health plan enrollees about their experiences. The CAHPS project benefits from the complementary strengths of psychometric and cognitive testing. METHODS: The CAHPS team conducted 150 cognitive interviews across three organizations in different geographic locations using multiple interview methods with different consumer populations. This article explains how cognitive testing was used in the CAHPS survey development process and shares the main findings from the cognitive interviews. RESULTS: A modified report format is more appropriate when asking about specific aspects of plan enrollees' experiences, whereas a rating format is useful for asking about overall assessments. Specifying a longer reference period is preferable to asking about the most recent visit when capturing experiences with care, because some respondents get frustrated when they cannot include experiences other than the most recent visit. Explicit screeners and tailored inapplicable response categories are beneficial in mail questionnaires, so people know that they should not answer questions about which they have no relevant experience. CONCLUSION: Cognitive testing was integral in the development and refinement of the CAHPS instrument. The cognitive testing findings contributed to an improved instrument that should capture consumers' health care and plan experiences with less response error than one not subjected to such testing. The cognitive testing process and findings can be useful to other researchers with similar survey development goals.

Comparing telephone and mail responses to the CAHPS survey instrument. Consumer Assessment of Health Plans Study.

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.

The impact of having parents report about both their own and their children's experiences with health insurance plans.

OBJECTIVES: The aim of this study was to determine whether parents rate their children's care differently when they also rate their own care than when they do not. METHODS: Subjects were employees of Washington State who had been enrolled in a health plan for at least 6 months and who had at least one covered child. Subjects were randomly assigned to four study groups that were surveyed using different protocols. To assess the stability of responses over time, a follow-up telephone interview was conducted with individuals in two of the groups. RESULTS: Parents or guardians who received both the Adult and Child Surveys were less likely to complete a survey than those who received only one survey. Responses to selected survey questions were quite stable between survey administrations. Parents who rated only their child's health care experiences generally gave more positive responses than those who also rated their own care, although few of these differences were statistically significant. This may have been due, in part, to the lower response rates in the latter group. The pairs of survey questions that ask about the adult's and child's experiences with the same aspects of care had moderate to high levels of association. The pair with the weakest association asked how clearly the doctor or nurse explained things to the adult or the child. CONCLUSIONS: Sending both an adult and child survey to an adult could have an effect on the pattern of responses and result in lower response rates, but this might be a cost-effective way to collect reports about both adult and child health care.

Respondent selection by mail: obtaining probability samples of health plan enrollees.

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.

The stability of preferences for life-sustaining care among persons with AIDS in the Boston Health Study.

BACKGROUND: Clinicians recognize the importance of eliciting patient preferences for life-sustaining care, yet little is known about the stability of those preferences for patients with serious disease. OBJECTIVES: To examine the stability of preferences for life-sustaining care among persons with AIDS and to assess factors associated with changes in preferences. DESIGN: Two patient surveys and medical record reviews, administered four months apart in 1990-1991. SETTING: Three health care settings in Boston. PATIENTS: 252 of 505 eligible persons with AIDS who participated in both baseline and follow-up surveys. MAIN OUTCOME MEASURES: A single question assessing desire for cardiac resuscitation and a scale of preferences for life-extending treatment conditional on hypothetical health states. RESULTS: Approximately one-fourth of the respondents changed their minds about life-sustaining care during a four-month period. Of patients who initially desired cardiac resuscitation, 23% decided to forego it four months later, and of those who initially said they would decline care, 34% later said they would accept it. Of those who initially desired any of the life-extending treatments, 25% decided to forego them four months later, and of those who initially said they would decline life-extending care, 24% later said they would accept some treatment. Patients reporting changes in physical function, pain, or suicide ideation were more likely to modify their desires to be resuscitated (all p< or =0.05). Patients lacking an advance directive, not completing high school, or becoming more severely ill were more likely to change their preferences on the Life Extension scale (p< or =0.05). Patients who discussed their preferences with at least one physician were just as likely as others to change desires for cardiac resuscitation. Age, gender, race, emotional health, clinical severity, social support, and site of care were not significant correlates of change for either measure. CONCLUSIONS: Health care providers should periodically reassess preferences for life-sustaining care, particularly for patients with progressive disease, given the instability in patient preferences. However, predictors of instability may vary with how preferences are measured. In particular, changes in health status may be related to instability of preferences for certain types of treatments.

Prostate cancer screening and beliefs about treatment efficacy: a national survey of primary care physicians and urologists.

PURPOSE: To describe practice patterns and beliefs of primary care physicians and urologists regarding early detection and treatment of prostate cancer. SUBJECTS AND METHODS: National probability samples of primary care physicians (n=444) and urologists (n=394) completed mail survey instruments in 1995. Physicians were asked about their use of prostate-specific antigen (PSA) testing for men of different ages and their beliefs about the value of radical prostatectomy, external-beam radiation therapy, and watchful waiting for men with differing life expectancies. RESULTS: Most primary care physicians report doing PSA tests during routine examination of men older than 50 years of age. The majority say they continue to do them on patients over 80 years and to refer men with abnormal values for biopsy. In contrast, only a minority of urologists would recommend PSA tests or biopsy for abnormal values for men over 75 years of age. More than 80% of primary care physicians and urologists doubt the value of radical prostatectomy for men with < 10 years of life expectancy; more primary care physicians than urologists see probable survival benefit in radiation therapy for patients with life expectancy < 10 years (48% versus 36%) or > 10 years (67% versus 53%). Thirteen percent of primary care physicians and only 3% of urologists consider watchful waiting to be as appropriate as aggressive therapy for men with > 10 years of life expectancy. CONCLUSIONS: Primary care physicians are more aggressive about PSA testing and referral for biopsy than most urologists recommend. Both groups recommend PSA testing and believe that aggressive treatment is more beneficial than existing evidence indicates.

Androgen deprivation therapy for asymptomatic advanced prostate cancer in the prostate specific antigen era: a national survey of urologist beliefs and practices.

PURPOSE: The use of androgen deprivation for prostate cancer without symptomatic metastases to the skeleton is controversial. However, by 1995 the use of medical androgen deprivation by injection was the thirteenth largest category of physician reimbursement by Medicare. To what degree do urologist attitudes towards androgen deprivation account for this growth? MATERIALS AND METHODS: A survey was mailed to 582 United States urologists practicing at least 20 hours per week in 1995 which asked about use of androgen deprivation therapy when prostate specific antigen (PSA) levels rise after primary therapy (surgery or radiation). They were also asked whether they believed androgen deprivation provided a survival benefit for patients with asymptomatic stages C and D disease. RESULTS: The response rate was 68%. Of the respondents 68% reported that they recommend androgen deprivation at least half of the time for men whose PSA is newly or persistently elevated following radical prostatectomy. Most (81%) urologists who believe that androgen deprivation offers a survival benefit for stage C disease said they prescribed it but more than half (53%) who do not believe in the efficacy of this treatment also said they still prescribe it. CONCLUSIONS: Many urologists maintain an inclination to prescribe androgen deprivation for a rising or elevated PSA despite the absence of information about the benefit of this approach and their own conflicting beliefs.

A nationwide survey of practicing urologists: current management of benign prostatic hyperplasia and clinically localized prostate cancer.

PURPOSE: Our aim was to define the spectrum of urological care for benign prostatic hyperplasia (BPH) and clinically localized prostate cancer. MATERIALS AND METHODS: In 1995 a random sample of 394 American urologists was surveyed with a response rate of 67%. RESULTS: Respondents reported seeing a median of 240 BPH patients during the preceding 12 months, and they had prescribed alpha-blockers for 70 and finasteride for 15. They had performed a median of 25 transurethral prostatectomies but few other operations for BPH. Almost all urologists routinely used digital rectal examinations and prostate specific antigen tests for BPH diagnosis. The next most common studies were American Urological Association symptom scores and uroflowmetry. Pressure-flow studies were rarely done. Respondents reported seeing a median of 35 new patients with prostate cancer during the last year, and performing a median of 90 prostate biopsies and 13 radical prostatectomies. Respondents had referred a median of 10 patients for external beam radiotherapy but few patients received brachytherapy or cryotherapy. Urologist staging practices varied considerably. CONCLUSIONS: These data provide a picture of current practice regarding the management of BPH and prostate cancer.