STUDY OBJECTIVES: Patients with pulmonary arterial hypertension (PAH) often present with dyspnea and severe functional limitations, but their health-related quality of life (HRQOL) has not been studied extensively. This study describes HRQOL in a cohort of patients with PAH.

DESIGN: Cross-sectional study.

SETTING: A tertiary care, university hospital-based, pulmonary hypertension (PH) clinic.

PARTICIPANTS: We studied HRQOL in 53 patients with PAH (mean age, 47 years; median duration of disease, 559 days). Eighty-three percent were women, 53% received epoprostenol, and 72% reported moderate-to-severe functional limitations with a New York Heart Association class 3 or 4 at enrollment.

MEASUREMENTS AND RESULTS: We examined HRQOL by administering the Nottingham Health Profile, Congestive Heart Failure Questionnaire, and Hospital Anxiety and Depression Scale. We used the Visual Analog Scale and standard gamble (SG) techniques to measure preferences for current health (utilities). Compared with population norms, participants reported moderate-to-severe impairment in multiple domains of HRQOL, including physical mobility, emotional reaction, pain, energy, sleep, and social isolation. Mean SG utilities were 0.71, suggesting that, on average, participants were willing to accept a 29% risk of death in order to be cured of PH.

CONCLUSIONS: PAH is a devastating condition that affects predominately young women in the prime of their life. Understanding HRQOL and preferences are important in the care and management of these patients. Compared with population norms, patients with PAH have substantial functional and emotional limitations that adversely affect their HRQOL.

The traditional focus of disability research has been on the elderly, with good reason. Chronic disability is much more prevalent among the elderly, and it has a more direct impact on the demand for medical care. It is also important to understand trends in disability among the young, however, particularly if these trends diverge from those among the elderly. These trends could have serious implications for future health care spending because more disability at younger ages almost certainly translates into more disability among tomorrow's elderly, and disability is a key predictor of health care spending. Using data from the Medicare Current Beneficiary Survey (MCBS) and the National Health Interview Study (NHIS), we forecast that per-capita Medicare costs will decline for the next fifteen to twenty years, in accordance with recent projections of declining disability among the elderly. By 2020, however, the trend reverses. Per-capita costs begin to rise due to growth in disability among the younger elderly. Total costs may well remain relatively flat until 2010 and then begin to rise because per-capita costs will cease to decline rapidly enough to offset the influx of new elderly people. Overall, cost forecasts for the elderly that incorporate information about disability among today's younger generations yield more pessimistic scenarios than those based solely on elderly data sets, and this information should be incorporated into official Medicare forecasts.

The third edition has 120 new articles, among them Artificial nutrition and hydration, Bioterrorism, Cloning, Cybernetics, Dementia, Managed care, and Nanotechnology. Some 200 articles have been extensively revised, and 100 additional articles have new bibliographies. The alphabetical entries address a wide range of topics that raise difficult and important questions. Abortion, genetic screening, female genital mutilation, the right to die, health issues of immigration, and corporate responsibility are but a few. The contributors discuss the issues from many points of view. The abortion article includes sections covering medical perspectives, contemporary ethical and legal aspects, and Jewish, Catholic, Protestant, and Islamic religious perspectives. There are also articles about bioethics in Buddhism, eugenics, health policy, women as health-care professionals, whistle-blowing in health care, and veterinary ethics. All of the articles are signed, and all have bibliographies. Ample cross-references help readers find related useful material. A list of all the articles and a topical outline appear in volume 1. A series of appendixes offers codes, oaths, and directives related to bioethics; additional resources; key legal cases; and an annotated bibliography of literary works that have a medical component. A detailed index helps users find material that may be scattered over numerous entries, such as information about surrogate motherhood.

Secondary life insurance markets are growing rapidly. Fromnearly no transactions

in 1980, a wide variety of similar products in this market has developed,

including viatical settlements, accelerated death benefits, and life

settlements and as the population ages, these markets will become increasingly

popular. Eight state governments, in a bid to guarantee sellers a "fair"

price, have passed regulations setting a price floor on secondary life insurance

market transactions, and more are considering doing the same. Using

data from a unique random sample of HIV+ patients, we estimate welfare

losses from transactions prevented by binding price floors in the viatical

settlements market (an important segment of the secondary life insurance

market). We find that price floors bind on HIV patients with greater than

4 years of life expectancy. Furthermore, HIV patients from states with price

floors are significantly less likely to viaticate than similarly healthy HIV patients from other states. If price floors were adopted nationwide, they would

rule out transactions worth $119 million per year. We find that the magnitude

of welfare loss from these blocked transactions would be highest for

consumers who are relatively poor, have weak bequest motives, and have a

high rate of time preference.

STUDY OBJECTIVES: Patients with pulmonary arterial hypertension (PAH) often present with dyspnea and severe functional limitations, but their health-related quality of life (HRQOL) has not been studied extensively. This study describes HRQOL in a cohort of patients with PAH.

DESIGN: Cross-sectional study.

SETTING: A tertiary care, university hospital-based, pulmonary hypertension (PH) clinic.

PARTICIPANTS: We studied HRQOL in 53 patients with PAH (mean age, 47 years; median duration of disease, 559 days). Eighty-three percent were women, 53% received epoprostenol, and 72% reported moderate-to-severe functional limitations with a New York Heart Association class 3 or 4 at enrollment.

MEASUREMENTS AND RESULTS: We examined HRQOL by administering the Nottingham Health Profile, Congestive Heart Failure Questionnaire, and Hospital Anxiety and Depression Scale. We used the Visual Analog Scale and standard gamble (SG) techniques to measure preferences for current health (utilities). Compared with population norms, participants reported moderate-to-severe impairment in multiple domains of HRQOL, including physical mobility, emotional reaction, pain, energy, sleep, and social isolation. Mean SG utilities were 0.71, suggesting that, on average, participants were willing to accept a 29% risk of death in order to be cured of PH.

CONCLUSIONS: PAH is a devastating condition that affects predominately young women in the prime of their life. Understanding HRQOL and preferences are important in the care and management of these patients. Compared with population norms, patients with PAH have substantial functional and emotional limitations that adversely affect their HRQOL.

Purpose:

Little is known about how well clinicians are aware of their own adherence to clinical guidelines, an important indicator of quality. We compared clinicians' beliefs about their adherence to hypertension guidelines with data on their actual performance.

Methods:

We surveyed 139 primary care clinicians at three Veterans Affairs medical centers, asking them to assess their own adherence to hypertension guidelines. We then extracted data from the centers' clinical databases on guideline-concordant medication use and blood pressure control for patients cared for by these providers during a 6-month period. Data were collected for patients with hypertension and diabetes, hypertension and coronary disease, or hypertension with neither of these comorbid conditions.

Results:

Eighty-six clinicians (62%) completed the survey. Each clinician saw a median of 94 patients with hypertension (mean age, 65 years). Patients were treated with an average of 1.6 antihypertensive medications. Overall, clinicians overestimated the proportion of their patients who were prescribed guideline-concordant medications (75% perceived vs. 67% actual, P 0.001) and who had blood pressure levels 140/90 mm Hg on their last visit (68% perceived vs. 43% actual, P 0.001). Among individual clinicians, there were no significant correlations between perceived and actual guideline adherence (r = 0.18 for medications, r = 0.14 for blood pressure control; P 0.10 for both). Clinicians with relatively low actual guideline performance were most likely to overestimate their adherence to medication recommendations and blood pressure targets.

Conclusion:

Clinicians appear to overestimate their adherence to hypertension guidelines, particularly with regards to the proportion of their patients with controlled blood pressure. This limited awareness may represent a barrier to successful implementation of guidelines, and could be addressed through the use of provider profiles and point-of-service feedback to clinicians.

BACKGROUND: Research is limited regarding national patterns of behavioral counseling during ambulatory care. We examined time trends and independent correlates of diet and physical activity counseling for American adults with an elevated cardiovascular risk during their outpatient visits.

METHODS: The National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS) provided 1992-2000 national estimates of counseling practices in private physician offices and hospital outpatient departments.

RESULTS: Rates of diet and physical activity counseling among visits by at-risk adults exhibited a modest ascending trend from 1992 to 2000, with the biggest growth found between 1996 and 1997. Throughout the 1990s, however, diet counseling was provided in 45% and physical activity counseling in or = 30% of visits by adults with hyperlipidemia, hypertension, obesity, or diabetes mellitus. Lower likelihood of either counseling was significantly associated with patients who were > or = 75 years of age, seen by generalists, and those with fewer risk factors. Also, diet counseling was less frequently provided during visits by whites vs. ethnic minorities and by men vs. women.

CONCLUSIONS: Despite available national guidelines, diet and physical activity counseling remain below expectations during outpatient visits by adults with an elevated cardiovascular risk. Given recent trends, immediate, satisfactory improvement is unlikely without future innovative interventions.

This issue of CHP/PCOR's quarterly newsletter covers news and developments from the summer 2004 quarter. It features articles about:

Information technology can support the implementation of clinical research findings in practice settings. Technology can address the quality gap in health care by providing automated decision support to clinicians that integrates guideline knowledge with electronic patient data to present real-time, patient-specific recommendations. However, technical success in implementing decision support systems may not translate directly into system use by clinicians. Successful technology integration into clinical work settings requires explicit attention to the organizational context. We describe the application of a "sociotechnical" approach to integration of ATHENA DSS, a decision support system for the treatment of hypertension, into geographically dispersed primary care clinics. We applied an iterative technical design in response to organizational input and obtained ongoing endorsements of the project by the organization's administrative and clinical leadership. Conscious attention to organizational context at the time of development, deployment, and maintenance of the system was associated with extensive clinician use of the system.

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