Quality of life in haemophilia A: Hemophilia Utilization Group Study Va (HUGS-Va).

This study describes health-related quality of life (HRQoL) of persons with haemophilia A in the United States (US) and determines associations between self-reported joint pain, motion limitation and clinically evaluated joint range of motion (ROM), and between HRQoL and ROM. As part of a 2-year cohort study, we collected baseline HRQoL using the SF-12 (adults) and PedsQL (children), along with self-ratings of joint pain and motion limitation, in persons with factor VIII deficiency recruited from six Haemophilia Treatment Centres (HTCs) in geographically diverse regions of the US. Clinically measured joint ROM measurements were collected from medical charts of a subset of participants. Adults (N = 156, mean age: 33.5 ± 12.6 years) had mean physical and mental component scores of 43.4 ± 10.7 and 50.9 ± 10.1, respectively. Children (N = 164, mean age: 9.7 ± 4.5 years) had mean total PedsQL, physical functioning, and psychosocial health scores of 85.9 ± 13.8, 89.5 ± 15.2, and 84.1 ± 15.3, respectively. Persons with more severe haemophilia and higher self-reported joint pain and motion limitation had poorer scores, particularly in the physical aspects of HRQoL. In adults, significant correlations (P < 0.01) were found between ROM measures and both self-reported measures. Except among those with severe disease, children and adults with haemophilia have HRQoL scores comparable with those of the healthy US population. The physical aspects of HRQoL in both adults and children with haemophilia A in the US decrease with increasing severity of illness. However, scores for mental aspects of HRQoL do not differ between severity groups. These findings are comparable with those from studies in European and Canadian haemophilia populations.

The influence of types of decision support on physicians' decision making.

OBJECTIVE: To determine whether physicians' post-test probability estimates are influenced by receiving test characteristics and impact their subsequent clinical decisions. DESIGN: Questionnaire based randomised controlled trial. SETTING: Mailed survey with a vignette describing an infant whose pretest likelihood of pertussis was 30% and direct fluorescent-antibody (DFA) test was negative for pertussis. SUBJECTS: Nationally representative sample of US paediatricians (n = 1502). INTERVENTIONS: Random receipt of no additional information (controls), the DFA's sensitivity and specificity (TC group) or the test's sensitivity and specificity with their definitions (TCD group). MAIN OUTCOME MEASURES: Estimated post-test probability (PTP) of pertussis, PTP of 0.50, "nearly correct" PTP (+/-5%), intended erythromycin management and intended hospital disposition. ANALYSES: Chi2 and t tests. RESULTS: Despite the negative DFA result, 67% of the 635 (49.7%) participants who responded estimated a PTP higher than the pretest probability of 30%; the overall mean estimated PTP was 0.41 (SD 0.26) (correct answer: 0.18). The TCD group's mean PTP was significantly higher than controls' mean PTP (0.45 vs 0.38, p<0.001), while the TC and control groups' mean PTP did not differ significantly (0.41 vs 0.38, p = 0.16). With decision support significantly more TC and TCD participants compared to controls estimated the PTP as 0.50 (38% vs 17%, p<0.001; 41% vs 17%, p<0.001, respectively) and also estimated a nearly correct PTP more often (20% vs 13%, p = 0.06; 19% vs 13%, p = 0.08, respectively). The mean PTP of participants intending to discontinue erythromycin therapy or discharge the patient home was significantly lower than that of participants who intended continuing erythromycin or hospitalisation (0.20 vs 0.43, p<0.001; 0.40 vs 0.49, p = 0.005, respectively). CONCLUSIONS: Paediatricians differed in their response to information about test characteristics. For many, it increased errors in estimating post-test probability; for others, it reduced errors. Estimated post-test probability was logically associated with intended clinical management.

Workers' risk of unemployment after traumatic brain injury: a normed comparison.

We examined, among those persons working preinjury, the risk of unemployment 1 year after traumatic brain injury (TBI) relative to expected risk of unemployment for the sample under a validated risk-adjusted econometric model of employment in the U.S. population. Results indicate that 42% of TBI cases were unemployed versus 9% expected, relative risk (RR) = 4.5, 95% confidence interval (CI) (4.12, 4.95). The relative risk for unemployment was higher among males, those with higher education, persons with more severe injuries, and more impaired early neuropsychological or functional status. Difference in unemployment rates gave similar results for gender, severity of injury, and early neuropsychological and functional status. However, for education, the excess was smaller among those more highly educated, but the unemployment rate in the more highly educated in the general population was sufficiently small to yield a larger relative risk. In conclusion, after accounting for underlying risk of unemployment in the general population, unemployment is substantially higher after TBI for people who were employed when they were injured. The differential employment status varies depending on demographics, severity of brain injury, early functional outcome, and neurobehavioral indicators. For characteristics such as education, associated with rates of unemployment in the general population, different methods used to compare the rates may yield different results.

Clinician judgments of functional outcomes: how bias and perceived accuracy affect rating.

OBJECTIVE: To evaluate the accuracy of clinician judgments of patient function, the susceptibility of judges to bias, and the relation between a judge's degree of belief in his/her accuracy of classification to observed accuracy when using the FIM instrument. PARTICIPANTS: Fifty rehabilitation professionals. SETTING: 3 urban medical centers. DESIGN: Four randomized experiments among subjects to examine the effect of potentially biasing information on FIM ratings of patient vignettes. Participants answered 60 true/false questions regarding patient function and FIM score and indicated confidence in the accuracy of their answers. INTERVENTIONS: Manipulation of patient information. MAIN OUTCOME MEASURES: The standard FIM 7-point scale, observed proportion of correct responses to the 60 true/false questions, and a 6-category confidence scale for each of the 60 questions were used as dependent measures. RESULTS: FIM ratings assigned to others biased participants' FIM ratings of patient vignettes. Functional ability was overestimated when ratings in other domains were high and underestimated when they were low. Participants were overconfident in their ability to answer FIM questions accurately across all professional disciplines. CONCLUSION: Bias and poor judgment of level accuracy play a significant role in clinician ratings of patient functioning. Blind ratings and training in debiasing are potential solutions to the problem.

Virtual reality as an adjunctive pain control during burn wound care in adolescent patients.

For daily burn wound care procedures, opioid analgesics alone are often inadequate. Since most burn patients experience severe to excruciating pain during wound care, analgesics that can be used in addition to opioids are needed. This case report provides the first evidence that entering an immersive virtual environment can serve as a powerful adjunctive, nonpharmacologic analgesic. Two patients received virtual reality (VR) to distract them from high levels of pain during wound care. The first was a 16-year-old male with a deep flash burn on his right leg requiring surgery and staple placement. On two occasions, the patient spent some of his wound care in VR, and some playing a video game. On a 100 mm scale, he provided sensory and affective pain ratings, anxiety and subjective estimates of time spent thinking about his pain during the procedure. For the first session of wound care, these scores decreased 80 mm, 80 mm, 58 mm, and 93 mm, respectively, during VR treatment compared with the video game control condition. For the second session involving staple removal, scores also decreased. The second patient was a 17-year-old male with 33.5% total body surface area deep flash burns on his face, neck, back, arms, hands and legs. He had difficulty tolerating wound care pain with traditional opioids alone and showed dramatic drops in pain ratings during VR compared to the video game (e.g. a 47 mm drop in pain intensity during wound care). We contend that VR is a uniquely attention-capturing medium capable of maximizing the amount of attention drawn away from the 'real world', allowing patients to tolerate painful procedures. These preliminary results suggest that immersive VR merits more attention as a potentially viable form of treatment for acute pain.

Weighted health status in the Medicare population: development of the Weighted Health Index for the Medicare Current Beneficiary Survey (WHIMCBS).

We present an approach to constructing an aggregate index of health at the population level with data from Medicare beneficiaries using the 1991 (N = 12,667), 1995 (N = 15,590), and 1997 (N=17,058) Medicare Current Beneficiary Survey (MCBS). Similar to other work with survey data, we develop a weighted health status index from which one can calculate a point in time health status score for any beneficiary. Scores range from 1.0, representing "excellent health and no activity limitation", to 0.0, representing deceased. Sequences of numerically weighted health states experienced over time can be summed to calculate years of healthy life for beneficiaries. We test both the stability of the scoring system when developed on independent samples, as well as the sensitivity of years of healthy life calculations to changes in scoring assumptions. Findings suggest that, in addition to mortality, morbidity appears to play a significant role in the years of healthy life accrued by Medicare beneficiaries since entry into the Medicare program. Further, the index scoring system is highly stable when derived on independent samples. Finally, calculations of years of healthy life are robust to changes in scoring assumptions. The weighted health index for Medicare current beneficiaries (WHIMCBS) is a stable overall index of health and may be a useful ongoing indicator of health within the Medicare population.

Do Medicare patients with disabilities receive preventive services? A population-based study.

OBJECTIVE: To compare health maintenance procedure rates of Medicare patients with different levels of disability. STUDY DESIGN: Observational study analyzing data from the 1995 Medicare Current Beneficiary Survey (MCBS, n = 15,590). Self-reported Pap smears, mammograms, and influenza and pneumococcal vaccinations were compared between groups with different levels of health-related difficulties in six activities of daily living (ADL). RESULTS: Compared to those without disabilities, the most severely disabled women (limitations in 5 or 6 ADL) reported fewer Pap smears (age < or =70, 23% vs 41%, p < .001) and mammograms (age > or = 50, 13% vs 44%, p < .001). In a controlled analysis, individuals with this high level of disability were 57% (95% confidence interval [CI], 33% to 72%) and 56% (95% CI, 43% to 76%) less likely to report receiving Pap smears and mammograms, respectively, compared with able-bodied women, regardless of their age, whether they were in an HMO, or whether they lived in a long-term care facility. Functional limitations were not a deterrent to receiving vaccinations. In general, patients in HMOs reported more procedures than those in fee-for-service, while those in long-term care facilities reported fewer procedures than those living in the community. CONCLUSIONS: Disability among Medicare patients is a significant, independent risk factor for not receiving mammograms and Pap smears. Efforts should be made to identify the most severely disabled because they are at particular risk.

Recovery after treatment and sensitivity to base rate.

Accurate classification of patients as having recovered after psychotherapy depends largely on the base rate of such recovery. This article presents methods for classifying participants as recovered after therapy. The approach described here considers base rate in the statistical model. These methods can be applied to psychotherapy outcome data for 2 purposes: (a) to determine the robustness of a data set to differing base-rate assumptions and (b) to formulate an appropriate cutoff that is beyond the range of cases that are not robust to plausible base-rate assumptions. Discussion addresses a fundamental premise underlying the study of recovery after psychotherapy.

The contribution of job satisfaction to the transition from acute to chronic low back pain.

OBJECTIVE: To determine the extent to which job satisfaction predicts pain, psychological distress, and disability 6 months after an initial episode of low back pain (LBP). DESIGN: A longitudinal design was used to follow an inception cohort experiencing first-episode low back pain with assessment at 2 and 6 months after pain onset. SETTING: Urban medical center outpatient orthopedic clinic. PATIENTS: The consecutive sample was comprised of 82 men with initial-onset acute LBP (T6 or below, daily pain for 6 to 10 weeks). INTERVENTION: Usual orthopedic care. MAIN OUTCOME MEASURES: The primary study outcomes were pain (Descriptor Differential Scale, Visual Analog Scales); disability (Sickness Impact Profile, Quality of Well-Being); and psychological distress (Beck Depression Inventory, Hamilton Rating Scale for Depression, Automatic Thoughts Questionnaire); predictor variables were orthopedic impairment (Waddell Physical Impairment Index) and job satisfaction (Job Descriptive Index, Work APGAR). RESULTS: Measures of job satisfaction, pain, disability, and psychological distress at baseline and 6 months after pain onset were separately reduced into factors using principle components factor analysis. In hierarchical multiple regression analyses, baseline job satisfaction significantly predicted variance in outcome scores at 6 months after pain onset, beyond the variance explained by control factors (demographics; baseline pain, mood, and disability; orthopedic impairment). Zero-order correlations between job satisfaction and orthopedic impairment were small and nonsignificant, suggesting that these two variables act independently in predicting outcome. Although type of work performed (desk work or work requiring light, moderate, or heavy lifting) and social position were correlated with job satisfaction at baseline, neither contributed to the prediction of outcome at 6 months. CONCLUSIONS: Satisfaction with one's job may protect against development of chronic pain and disability after acute onset back pain and, alternatively, dissatisfaction may heighten risk of chronicity. Vocational factors should be considered in the rehabilitation of acute back injury.

The 1997 Clinical Research Award. Health outcome for burn survivors.

Little is known concerning health outcome for patients who survive burn injuries, and how their health outcome compares with that of other medical populations. Such information is important given that the current direction of health care policy decision making is toward outcomes-driven decision models. We compared the health status of 91 patients 1 month after severe burn injury with the published reports of the health status of 39 medical comparison samples, and two reports of health status for the general population. Additionally, we collected longitudinal data on a subsample of our surviving patients with burn injuries at 1 year. Our findings suggest that people who survive a severe burn experience a stable and relatively good health status after their injury compared with other medical samples. However, their health status remains worse than that of the general population over time. Further, people who survive a major burn indicate that the areas of vocational and psychosocial functioning are often the most troublesome for them.

The clinical significance of behavioral treatment for chronic low back pain: an evaluation of effectiveness.

The clinical effectiveness of behavioral treatment for chronic low back pain (CLBP) was evaluated using an empirical strategy to quantify individual patient change. Patients with CLBP (n = 17) presenting to an outpatient pain clinic were evaluated at baseline and six months posttreatment on variables of pain, disability and distress. Similar patients receiving usual medical care (n = 17) were evaluated on the same outcome measures and time line for purposes of descriptive comparison. Validated and widely-used measures of pain (McGill Pain Questionnaire), disability (Sickness Impact Profile), and depression (Beck Depression Inventory) served as outcome measures. Forty-seven percent of patients receiving behavioral treatment evidenced clinically significant improvement in at least one of the dimensions of pain, disability and depression associated with CLBP. However, clinically significant improvement across all three measures was rare. These findings are discussed in terms of the viability of behavioral treatment for CLBP, the need to enhance the degree of clinically significant outcome associated with behavioral treatments, and the value of empirical evaluation of clinically significant improvement following treatment interventions.