The caregiver burden in lupus: findings from UNVEIL, a national online lupus survey in the United States.

OBJECTIVES: Lupus imposes a substantial burden on patients; however, little is known about its impact on those caring for patients with the disease. In this study, we examined the impact 'caring for patients with lupus' has on caregivers from their own perspective. METHODS: UNVEIL was a one-time online national cross-sectional survey developed in partnership with the Lupus Foundation of America and fielded targeting the US Lupus Foundation of America constituents in 2014. Eligible caregivers were adults who self-identified as unpaid caregivers of patients with lupus. Eligible caregivers had to complete a series of sociodemographic questions as well as a series of well established outcome measures, such as the Short Form 12v2 Health Survey, the Work Productivity and Activity Index, the Caregiver Burden Inventory, and the Perceived Benefits of Caregiving Scale. RESULTS: A total of 253 caregivers completed the survey. The majority of caregivers (90.1%) were aged 60 years or younger, more than half (54.2%) were men, and more than half (59.7%) identified themselves as either a spouse or a partner to the patient with lupus they were caring for. Overall health-related quality of life was close to the norm mean of the general US population. Caregivers who were employed missed an average of 12.8% of paid work time due to caregiving responsibilities and reported a 33.5% reduction in on-the-job effectiveness. Nearly half of the caregivers surveyed (49.4%) indicated that their caregiving responsibilities impacted their ability to socialize with friends, and almost all caregivers (97.6%) reported experiencing increased anxiety and stress in relation to their caregiving role. CONCLUSIONS: Caregiving for patients with lupus has a substantial impact on the work productivity and the social and emotional functioning of caregivers. Healthcare professionals and policymakers should continually assess the impact of healthcare decisions on the well-being of those caring for patients with lupus.

Osteoporosis Assessment Questionnaire-Physical Function (OPAQ-PF): a psychometrically validated osteoporosis-targeted patient reported outcome measure of daily activities of physical function.

UNLABELLED: The purpose of this study was to evaluate the measurement properties of the Osteoporosis Assessment Questionnaire-Physical Functioning (OPAQ-PF). Based on this study, the OPAQ-PF has confirmed unidimensionality and acceptable reliability, construct validity, and sensitivity to change in a recent fracture/no recent fracture osteoporosis sample. METHODS: Dimensionality was established through exploratory and confirmatory factor analysis. Patients completed three patient reported outcome (PRO) measures and four performance-based measures (PBMs) at baseline to enable an evaluation of construct validity. Patients without a recent fracture completed the OPAQ-PF 2 weeks after baseline to enable an evaluation of test-retest reliability. Ability to detect change and interpretation of change were investigated following completion of the OPAQ-PF 12 and 24 weeks postbaseline by patients with a recent fracture. RESULTS: A prospective psychometric validation study in 144 postmenopausal women, with moderate to severe osteoporosis, 37 of whom had experienced a recent fragility fracture (<6 weeks). Unidimensionality was established for the OPAQ-PF by factor analysis. The OPAQ-PF had good internal consistency (α = 0.974) and test-retest reliability (mean intraclass correlation coefficient (ICC) 0.993. The OPAQ-PF differentiated between patients with/without recent fracture, and by severity of osteoarthritis; it correlated strongly with hypothesized-related scales and PBMs (r > 0.3, p < 0.001). Ability to detect change was established with high correlations between changes in OPAQ-PF score and changes in global concept scores in recent fracture patients (r ≥ 0.6, 24-week change). Effect size of change on OPAQ-PF score increased by level of global change (p < 0.001). Anchor-based methods identified an OPAQ-PF change of 10 at an individual patient level and 20 at a group level as meaningful to patients. CONCLUSIONS: The OPAQ-PF has confirmed unidimensionality and acceptable reliability, construct validity, and sensitivity to change in a recent fracture/no recent fracture osteoporosis sample.

Effects of an exercise and hypocaloric healthy eating program on biomarkers associated with long-term prognosis after early-stage breast cancer: a randomized controlled trial.

Excess body weight at diagnosis and weight gain after breast cancer are associated with poorer long-term prognosis. This study investigated the effects of a lifestyle intervention on body weight and other health outcomes influencing long-term prognosis in overweight women (BMI > 25.0 kg/m(2)) recovering from early-stage (stage I-III) breast cancer. A total of 90 women treated 3-18 months previously were randomly allocated to a 6-month exercise and hypocaloric healthy eating program (n = 47, aged 55.6 ± 10.2 year) or control group (n = 43, aged 55.9 ± 8.9 year). Women in the intervention group received three supervised exercise sessions per week and individualized dietary advice, supplemented by weekly nutrition seminars. Body weight, waist circumference, waist/hip ratio [WHR], cardiorespiratory fitness, blood biomarkers associated with breast cancer recurrence and cardiovascular disease risk, and quality of life (FACT-B) were assessed at baseline and 6 months. Three-day diet diaries were used to assess macronutrient and energy intakes. A moderate reduction in body weight in the intervention group (median difference from baseline of -1.09 kg; IQR -0.15 to -2.90 kg; p = 0.07) was accompanied by significant reductions in waist circumference (p < 0.001), WHR (p = 0.005), total (p = 0.021) and saturated fat (p = 0.006) intakes, leptin (p = 0.005), total cholesterol (p = 0.046), and resting diastolic blood pressure (p = 0.03). Cardiopulmonary fitness (p < 0.001) and FACT-B quality of life (p = 0.004) also showed significant improvements in the intervention group. These findings suggest that an individualized exercise and a hypocaloric healthy eating program can positively impact upon health outcomes influencing long-term prognosis in overweight women recovering from early-stage breast cancer.

One sensor fits all--a new approach in monitoring brain physiology.

Oxygen plays a pivotal role as a nutrient to the brain. Monitoring partial pressure of oxygen (ptO2) has been shown to correlate with outcome after brain injury if certain tissue-ptO2-goals can be achieved. Oxford Optronix has recently developed a new fiber-optic based sensor (MPBS) with a large tissue sampling volume and long-term stability up to 10 days. Direct comparison of the MPBS sensor with the Licox system was performed using an in-vitro and in-vivo model. No statistically significant differences between the MPBS and the Licox sensor in different settings were found. The response times to a sudden drop in ptO2 was faster for the MPBS than for the Licox probes (time of 80% signal change; 65 +/- 11 vs 110 +/- 14 s; p<0.05).

THE GERMAN DOSE RATE MONITORING NETWORK AND IMPLEMENTED DATA HARMONIZATION TECHNIQUES.

Environmental radiation monitoring networks have been established in Europe and world-wide for the purpose of protecting population and environment against ionizing radiation. Some of these networks had been established during the cold war period and were improved after the Chernobyl accident in 1986. Today, the German Federal Office for Radiation Protection (BfS) operates an early warning network with roughly 1800 ambient dose equivalent rate (ADER) stations equally distributed over the German territory. The hardware and software of all network components are developed in-house allowing the continuous optimization of all relevant components. A probe characterization and quality assurance and control program are in place. Operational and technical aspects of the network and data harmonization techniques are described. The latter allows for calculating of the terrestrial and net ADER combined with uncertainties mainly from site specific effects. Harmonized data are finally used as input to the German emergency management system and the European radiological data exchange platform.

Risk factors for anorexia nervosa: three integrated case-control comparisons.

BACKGROUND: Many risk factors have been implicated in the development of anorexia nervosa. Little is known about their relative contributions, nor in most cases is it clear whether they are specific to anorexia nervosa or risk factors for all eating disorders or for psychiatric disorder in general. METHODS: We used a case-control design involving the comparison of 67 female subjects with a history of anorexia nervosa with 204 healthy control subjects, 102 subjects with other psychiatric disorders, and 102 subjects with bulimia nervosa. A broad range of risk factors was assessed by interview. RESULTS: The subjects with anorexia nervosa and the healthy controls differed in their exposure to most of the putative risk factors. There was no greater exposure to factors that increased the likelihood of dieting, once the influence of other classes of risk factors had been taken into account. Premorbid perfectionism and negative self-evaluation were especially common and more so than among the general psychiatric controls. Parental obesity and an early menarche, together with parental psychiatric disorder, distinguished those with bulimia nervosa from those with anorexia nervosa. CONCLUSIONS: There appears to be a broad range of risk factors for anorexia nervosa and bulimia nervosa, some of which are shared with other psychiatric disorders. Factors that increase the likelihood of dieting seem to have more important influence as risk factors for bulimia nervosa than anorexia nervosa. Perfectionism and negative self-evaluation appear to be particularly common and characteristic antecedents of both eating disorders.

The natural course of bulimia nervosa and binge eating disorder in young women.

BACKGROUND: Little is known about the relative course and outcome of bulimia nervosa and binge eating disorder. METHODS: Two community-based cohorts were studied prospectively over a 5-year year period. One comprised 102 participants with bulimia nervosa and the other 48 participants with binge eating disorder (21% [9/42] of whom had comorbid obesity). All participants were female and aged between 16 and 35 years at recruitment. The assessments were at 15-month intervals and addressed eating disorder features, general psychiatric symptoms, and social functioning. RESULTS: Both cohorts showed marked initial improvement followed by gradual improvement thereafter. Between half and two thirds of the bulimia nervosa cohort had some form of eating disorder of clinical severity at each assessment point, although only a minority continued to meet diagnostic criteria for bulimia nervosa. Each year about a third remitted and a third relapsed. The outcome of the binge eating disorder cohort was better, with the proportion with any form of clinical eating disorder declining to 18% (7 of 40) by the 5-year follow-up. The relapse rate was low among this cohort. There was little movement of participants across the 2 diagnostic categories and few sought treatment. Both groups gained weight, with 39% of the binge eating disorder cohort (14 of 36) meeting criteria for obesity at 5-year follow-up. CONCLUSIONS: These findings suggest that, among young women in the community, bulimia nervosa and binge eating disorder have a different course and outcome. Whereas the prognosis of those with bulimia nervosa was relatively poor, the great majority of those with binge eating disorder recovered.

Risk factors for bulimia nervosa. A community-based case-control study.

BACKGROUND: Many apparently disparate risk factors have been implicated as causes of eating disorders. This study was designed to test the hypothesis that 2 broad classes of risk factors exist for bulimia nervosa: those that increase the risk for development of a psychiatric disorder in general and those that increase the risk of dieting. It was predicted that the latter are especially common among persons with bulimia nervosa. METHODS: A case-control design was used involving 2 integrated comparisons. First, 102 subjects with bulimia nervosa were compared with 204 healthy control subjects without an eating disorder. Second, the same 102 subjects with bulimia nervosa were compared with 102 subjects with other psychiatric disorders. To reduce sampling bias, the subjects were recruited directly from the community. A broad range of putative risk factors was assessed. RESULTS: The subjects with bulimia nervosa and the healthy control subjects differed in their rates of exposure to most of the putative risk factors. Far fewer differences were evident between the subjects with bulimia nervosa and the control subjects with other psychiatric disorders, although exposure to factors that were likely to increase the risk of dieting and to negative self-evaluation and certain parental problems (including alcohol use disorder) were substantially more common among those with bulimia nervosa. CONCLUSIONS: The findings support the hypothesis that bulimia nervosa is the result of exposure to general risk factors for psychiatric disorder and risk factors for dieting. An unexpected finding was the particularly high rates of premorbid negative self-evaluation and certain parental problems among those with bulimia nervosa.

A prospective study of outcome in bulimia nervosa and the long-term effects of three psychological treatments.

BACKGROUND: Little is known about the longer-term outcome of bulimia nervosa and the distal effects of treatment. METHODS: Prospective follow-up of subjects from two randomized controlled trials, involving a comparison of cognitive behavior therapy, behavior therapy, and focal interpersonal therapy. RESULTS: Ninety percent (89/99) underwent reassessment by interview (mean [+/- SD] length of follow-up, 5.8 +/- 2.0 years). Almost half (46%) had a DSM-IV eating disorder; 19%, bulimia nervosa; 3%, anorexia nervosa; and 24%, eating disorder not otherwise specified. There was a low rate of other psychiatric disorders. Premorbid and paternal obesity predicted a poor outcome. While the three treatments did not differ with respect to the proportion of subjects with anorexia nervosa or bulimia nervosa at follow-up, they did differ once all forms of DSM-IV eating disorder were considered together. Those who had received cognitive behavior therapy or focal interpersonal therapy were doing markedly better than those who had received behavior therapy. CONCLUSIONS: The longer-term outcome of bulimia nervosa depends on the nature of the treatment received. Patients who receive a treatment such as behavior therapy, which only has a short-lived effect, tend to do badly, whereas those who receive treatments such as cognitive behavior therapy or focal interpersonal therapy have a better prognosis.

Risk factors for binge eating disorder: a community-based, case-control study.

BACKGROUND: Many risk factors have been implicated for eating disorders, although little is known about those for binge eating disorder. METHODS: A community-based, case-control design was used to compare 52 women with binge eating disorder, 104 without an eating disorder, 102 with other psychiatric disorders, and 102 with bulimia nervosa. RESULTS: The main risk factors identified from the comparison of subjects with binge eating disorder with healthy control subjects were certain adverse childhood experiences, parental depression, vulnerability to obesity, and repeated exposure to negative comments about shape, weight, and eating. Compared with the subjects with other psychiatric disorders, those with binge eating disorder reported more childhood obesity and more exposure to negative comments about shape, weight, and eating. Certain childhood traits and pronounced vulnerability to obesity distinguished the subjects with bulimia nervosa from those with binge eating disorder. CONCLUSIONS: Binge eating disorder appears to be associated with exposure to risk factors for psychiatric disorder and for obesity. When compared with the wide range of risk factors for bulimia nervosa, the risk factors for binge eating disorder are weaker and more circumscribed. Pre-morbid perfectionism, negative self-evaluation, and vulnerability to obesity appear especially to characterize those in whom bulimia nervosa subsequently develops.

Non-invasive electromagnetic measurement of the peripheral pulsatile blood flow: experimental study and clinical applications.

The non-invasive electromagnetic blood flowmeter described in this paper allows us to measure pulsatile flow through a limb. The limb is placed in a magnetic field and the blood flow rate induces electromagnetic forces which are detected at the skin surface with ECG electrodes (Faraday's law). A special computer technique is necessary to isolate the signal from artefacts (local ECG, BCG, EMG). In vitro calibration is performed using a circulatory model and in vivo using mongrel dogs. Its validity is assessed by comparing the results with the responses obtained from the invasive electromagnetic flowmeter. Sources of error in the measurement such as blood composition (Na+, K+), haematocrit (45% to 29%), and venous flow are reported here. The results indicate that the method is reliable, easy to utilise and offers a unique non-invasive way of measuring true pulsatile blood flow rate in humans. Various clinical applications are discussed for possible use of the device.

Bias and bulimia nervosa: how typical are clinic cases?

OBJECTIVE: Since patients being treated for bulimia nervosa constitute only a minority of persons with the disorder, the cases seen in clinics may be subject to sampling bias. The aim of this study was to investigate sampling bias as it affects secondary referrals for bulimia nervosa. METHOD: The personal and family characteristics of a consecutive series of 60 women with secondary referrals for bulimia nervosa (clinic subjects) were compare with those of 83 subjects with bulimia who were recruited directly from the community. Most of the data were collected by interview. RESULTS: The demographic characteristics of the two groups were similar. The clinic subjects had a more severe eating disorder and much greater impairment of social functioning. There was no difference between the groups in duration of the eating disorder or level of general psychiatric disturbance. The community subjects were heavier and had stronger family histories of obesity. CONCLUSIONS: There is sampling bias among secondary referrals for bulimia nervosa. The relative absence of persons prone to obesity among secondary subjects is important, since there is evidence that vulnerability to obesity is a poor prognostic feature as well as being a risk factor for the development of bulimia nervosa. The greater social impairment among the clinic subjects is suggestive of greater personality disturbance in this group. Caution is warranted when generalizing from clinic cases to the disorder as a whole.

Skin cancers in renal-transplant recipients occur more frequently than previously recognized in a temperate climate.

BACKGROUND: Renal-transplant recipients are at increased risk of developing skin cancers, especially squamous cell carcinoma. We have carried out a comprehensive epidemiologic review of skin cancers occurring in a population receiving transplants in Oxford over a 21-year period, where nearly all patients have remained under the care of the Oxford Transplant Centre. METHODS: Between 1975 and 1996, 1,360 renal transplants were performed in 1,115 patients. Skin cancer data were reviewed in 979 patients from this group who remained under the care of the Oxford Transplant Centre. The lesions included in the analysis were histologically confirmed basal cell carcinoma, Bowen's disease, squamous cell carcinoma, keratoacanthoma, malignant melanoma, Merkel cell tumor, and sebaceous carcinoma. RESULTS: One hundred eighty-seven (19.1%) transplant patients developed at least one skin malignancy. The rate of skin cancer was 141 per 1,000 person years at risk. Sixty-four percent of patients with skin cancer had multiple lesions (maximum 50). Squamous cell carcinoma was the most common skin cancer to develop and the most common first skin cancer to present. The mean time to presentation of the first skin cancer was 8 years. Six patients developed nodal metastases, and two patients died secondary to skin cancer. Risk factors identified were increasing age at transplantation, recipient sex, total time of exposure to immunosuppression, increased creatinine levels at 1 year, and graft relation. The cumulative incidence of skin cancer reached 61% at 20 years after transplantation. CONCLUSION: The data from this study suggest that more patients develop skin malignancies than previously reported from Europe. It is important to advise patients before transplantation in regard to skin complications, provide regular dermatological follow-up, and tailor immunosuppressive regimen to minimum doses to be compatible with good graft function.

The Oxford Laser Prostate Trial: sensitivity to change of three measures of outcome.

OBJECTIVES: To evaluate the sensitivity to change of outcome measures in a double-blind randomized controlled trial of transurethral resection of the prostate (TURP) and contact laser prostatectomy. METHODS: A total of 152 patients were randomized to TURP or contact laser prostatectomy using the Surgical Laser Technology (SLT) system. Preoperative data were obtained using a self-administered questionnaire containing the American Urological Association (AUA-7) symptom score, the bothersome score (benign prostatic hyperplasia impact index), and the Short Form-36 health status questionnaire (SF-36). Follow-up was at 1 and 3 months. Effect size scores were calculated to indicate the extent of change from baseline to follow-up. RESULTS: Data were available on 148 patients: 72 received laser therapy and 76 received TURP. Mean change in AUA-7 score at 3 months was 7.3 in the laser arm, compared with 11.9 in the TURP arm (P < 0.05). Furthermore, substantial change was detected in both groups on the bothersome score. However, very few significant differences in SF-36 dimension scores from baseline to 3 months were detected. CONCLUSIONS: The SF-36 at both baseline and follow-up indicated a similar level of health status as that reported in the general population. Subsequently, the measure did not improve on any dimensions. Our data support the claim of some researchers that shorter disease-specific indices are vital to the evaluation of treatment regimens in clinical trials, especially when the general health of the patients is similar to that of the population.

Predictors of 12-month outcome in bulimia nervosa and the influence of attitudes to shape and weight.

Seventy-five patients with bulimia nervosa were treated with 1 of 3 short-term psychological treatments and were then entered into a closed 1-year period of follow-up. Pretreatment predictors of 3 measures of outcome were sought. Only 2 variables were significantly associated with outcome: attitudes toward shape and weight, and self-esteem. The nature of the relation between attitudinal disturbance and outcome was complex and unexpected. The data set was also used to test the major prediction of the cognitive view of bulimia nervosa, namely that among patients who have responded to treatment, the residual level of attitudinal disturbance will predict subsequent outcome. This prediction was confirmed.

Myocardial contractility: non-invasive assessment after cardiac surgery.

The shape of the carotid blood-flow signal in the assessment of myocardial contractility is important. The non-invasive electromagnetic method permits the measurement of the pulsatile carotid flow rate and thus to estimate the maximum blood flow acceleration (max. dF/dt), which is directly related to myocardial contractility. The electromagnetic flowmeter method, routinely used in the superficial arteries of arteriosclerotic patients, has been modified to record the blood flow rate in the carotid artery. Two ECG electrodes on both sides of the common carotid artery record the signal given by a small magnet located above the electrodes. Using this method, we have studied the effects of isoprenaline infusion in a normal subject. In patients after cardiac surgery we measured max. dF/dt in the region of the carotid artery and compared changes in it with parameters obtained by invasive methods such as the cardiac index, and the pulmonary and systemic pressures. The first results of blood flow recordings in the ascending aorta are presented here.

Quality of life in acute exacerbation of chronic bronchitis: results from a German population study.

This study reports on data from a study conducted in the Federal Republic of Germany examining the quality of life (QoL) of patients with chronic bronchitis (CB) and its acute exacerbations (AECB). Data from 320 patients were collected at AECB and subsequently during a stable phase (non-AECB) utilizing the St George's Respiratory Questionnaire (SGRQ) and the Nottingham Health Profile (NHP). As expected, the QoL of CB patients was poor, even at non-AECB, with patients reporting lower scores than patients with other chronic conditions. Patients reported significantly poorer QoL at AECB than at non-AECB. After adjusting for the severity of the underlying condition, poorer QoL at AECB was significantly and independently associated with older age, unemployment, increasing BMI, increasing number of prior AECBs, and Anthonisen AECB grade. While younger subjects reported significantly greater deterioration in QoL at AECB, the factors most consistently and independently associated with relative QoL deterioration at AECB were the number of prior AECBs and exposure to air pollution at home. In conclusion, this study highlights the detrimental effect of CB, and in particular AECB, on QoL. The association between QoL and patient reports of previous AECB number and air pollution are consistent with reports from other studies.

Criterion validation of the Nottingham Health Profile: patient views of surgery for benign prostatic hypertrophy.

As part of a prospective cohort study of 388 men undergoing TURP for benign prostatic hypertrophy, the Nottingham Health Profile (NHP) was self-administered before and at 3, 6 and 12 months after surgery. By comparison of pre- and post-operative NHP scores with other patient-reported health measures the criterion validity of the Profile was examined. Before surgery, statistically significant linear trends were observed for increasing NHP score (i.e. having more health problems) with both worsening self-rated general health and increasing severity of prostatic symptoms. One year after surgery, the extent of reduction in NHP score was significantly linearly associated with a perceived favourable outcome of surgery and to a lesser extent with a reduction in prostatic symptoms. In addition, changes in NHP scores during follow-up were associated with perceived changes in operative outcome during the same period, patients with the greatest reduction in NHP score tending to report more successful surgery at 12 months than at the 3 month assessment.

Reliability of questionnaire responses as compared with interview in the elderly: views of the outcome of transurethral resection of the prostate.

Three hundred and eighty-eight men undergoing transurethral resection of the prostate for benign prostatic hypertrophy completed a presurgical questionnaire and three follow-up questionnaires 3, 6 and 12 months after surgery. The questionnaires covered details of prostatic symptoms, general health, and expectations and results of surgery. At each follow-up point 40 randomly selected patients were interviewed by two female research assistants. The response rate to the questionnaires was over 90% at each follow-up point while that for the interviews was lower at around 80%. We examine the reliability of the postal questionnaires in assessing health status by comparing questionnaire and interview responses, with a view to the wider employment of such a method in the follow-up of surgical patients. In general, and as reported elsewhere, responses to questions on easily defined topics are highly comparable between questionnaire and interview. Responses to more subjective questions are moderately reliable, but with a tendency for postal questionnaires to underestimate a patient's health problems. It is difficult to assess the reliability of the questionnaires with regard to questions of an intimate nature since such questions caused embarrassment during interview with consequent incomplete responses.

Influence of sex of general practitioner on management of menorrhagia.

BACKGROUND: There is an assumption that men and women general practitioners adopt different practice styles in the management of gynaecological disorders. However, there is little evidence to support this view. AIM: A study was undertaken to compare the practice styles of men and women general practitioners in the management of menorrhagia. METHOD: The study took place in 73 general practices in the Oxford Regional Health Authority area. A total of 348 patients who consulted 74 men general practitioners and 43 women general practitioners with a complaint of menorrhagia were recruited into the study and completed postal questionnaires nine and 18 months after entry into the study. Main outcome measures were men and women general practitioners' awareness of patients' treatment preferences, treatment received by patients, patients' involvement in treatment decisions and patients' satisfaction with treatment received. RESULTS: There were no statistically significant differences in treatment received by patients of men and women general practitioners. Fewer patients consulting women general practitioners were referred to a gynaecologist compared with patients consulting men general practitioners (56% versus 64%) and fewer underwent surgery (39% versus 47%). More patients consulting women general practitioners reported participation in treatment decisions (63% versus 53%) but more patients consulting men general practitioners were satisfied with the care they received (66% versus 55%). Again, these differences were not statistically significant. CONCLUSION: Although some indications of sex-associated differences in practice style were found in this study, the similarities in practice styles of men and women general practitioners were more striking than the differences.