Early ambulation impacts on quality-of-life outcomes positively after lower limb burn injury: A group trajectory analysis.

INTRODUCTION: Despite the challenges of providing burn care throughout the 2.5MKm2 jurisdiction of Western Australia, early intervention after injury remains a key premise of the multidisciplinary model of care applied by the State Adult Burn Unit (SABU) team. In particular, contemporary guidelines support the facilitation of early ambulation after lower limb burn and skin grafting. Thus, this study aimed to evaluate the association between the timing of ambulation after burn and surgery on quality of life (QoL) outcomes. METHODS: Data from 1707 lower limb burn patients aged ≥ 18, admitted to the SABU between February 2011- December 2019, were included. Self-reported QoL longitudinal outcomes were assessed using the Short Form 36 and Burn Specific Health Scale Brief. Three recovery trajectories were defined according to their QoL outcome responses, mapped out to one year. Early ambulation was defined as occurring within 48 h of acute burn or surgery, as per SABU routine practice. RESULTS: Early ambulation was shown to have a positive association to the higher QoL trajectory group (>75% of cohort), though not statistically significant for the Physical Component (PCS) and Mental health Component (MCS) summary scores of the SF36; however, ambulation pathway was associated with adjusted long-term BSHS-B QoL outcomes. The least favorable trajectory of long-term recovery of the physical aspects of QoL was seen in those with higher TBSA and complications and increasing age and comorbidities. In contrast, the mental health components of QoL were robust to all those factors, apart from pre-existing comorbidities. CONCLUSION: Early ambulation after lower limb burn, and surgery, was positively associated with early and long-term QoL outcomes. Recovery trajectory is strongly indicated by where the patient journey begins after early acute care. The optimal physical QoL recovery trajectory was shared by those who were younger with reduced TBSA; complications; and, comorbidities whereas the mental health QoL trajectories were only impacted by comorbidities.

Functional disability and health-related quality of life among systemic sclerosis patients in Bangladesh.

OBJECTIVE: To assess the relationship between functional disability and health-related quality of life (HRQoL) among systemic sclerosis (SSc) patients. METHODOLOGY: This cross-sectional study was carried out on 78 adults who met the classification criteria for SSc defined by the American College of Rheumatology/European League of Rheumatology (ACR/EULAR)-2013. The Bangla version of Short Form 36 (SF-36) and Health Assessment Questionnaire-Disability Index (HAQ-DI) were used to measure HRQoL and functional disability in SSc patients. RESULTS: The patients' median [IQR] HAQ-DI was 1.4 [0.6-2.1], with 37.2% having a mild functional disability, 33.3 percent having a moderate functional disability, and 29.5 percent having a severe functional disability. The hygiene and activity domains of the HAQ-DI obtained the highest scores, 2.0 [0.0-3.0] and 2.0 [1.0-3.0], respectively. The Physical Component Summary (PCS) and Mental Component Summary (MCS) of the SF-36 had median [IQR] values of 26.2 [15.0-58.1] and 42.0 [19.6-60.6]. The highest score was 50.0 [25.0-75.0] in social functioning. The PCS of the SF-36 was moderately correlated with the HAQ-DI (rs = - 0.629, P < 0.001) and the MCS of the SF-36 was weakly correlated with the HAQ-DI ((rs = - 0.344, P < 0.001). Age, female sex, and incomplete fist closure substantially influenced functional status. Calcinosis, Raynaud's Phenomenon, and flexion contracture significantly diminished the quality of life. CONCLUSIONS: Functional disability negatively affects health-related quality of life. Age, Musculoskeletal, and skin involvement are significantly associated with poor quality of life and functional disability. Therefore, treatment strategies should be aimed at reducing functional disability, which will enhance the HRQoL of SSc patients.

Mediators of suicidality 12 years after bariatric surgery relative to a nonsurgery comparison group.

BACKGROUND: Individuals undergoing bariatric surgery report higher levels of suicidality than the general population, but it is unknown what mediates this phenomenon or how this compares with individuals with severe obesity not receiving surgery. OBJECTIVES: We evaluated suicidality in 131 individuals 12 years post surgery compared with 205 individuals with severe obesity who did not undergo surgery. Changes in health-related quality of life (HRQOL) and metabolic health were assessed as mediators of suicidality. SETTING: University. METHODS: Suicidality was assessed with the Suicide Behaviors Questionnaire-Revised at 12 years. Metabolic health and HRQOL (Short Form-36 [SF-36] Mental Component Summary score, Physical Component Summary score, and Impact of Weight on Quality of Life-Lite) were assessed at baseline and 2 and 6 years. The effects of bariatric surgery on suicidality at 12 years were assessed through univariate and multivariate sequential moderated mediation models, with changes in metabolic health and HRQOL from 0-2 years and 2-6 years as mediators. RESULTS: Suicidality was higher in the surgery group versus the nonsurgery group (estimate [est.] = .708, SE = .292, P < .05). Only the indirect pathways at 2 years after surgery for SF-36 Mental Component Summary in the univariate models (est. = -.172, SE = .080, P < .05) and for SF-36 Physical Component Summary in the multivariate model (est. = .593, SE = .281, P < .05) were significant. CONCLUSION: Individuals undergoing bariatric surgery reported higher levels of suicidality at 12 years, which was mediated by less improvement in the mental and physical components of HRQOL in the first 2 years after surgery, suggesting the need for additional clinical monitoring.

Quality of life and mortality after surgical treatment for vertebral osteomyelitis (VO): a prospective study.

PURPOSE: Vertebral osteomyelitis (VO) has a high mortality and leads to chronic pain and functional disability. Surgical treatment is often necessary. To date, little is known about the consequences of surgery on patient outcome. The aim of this study was to determine the quality of life (QoL) and mortality rates of surgically treated VO patients for a period of 2 years. METHODS: Patients with VO undergoing surgical treatment in a tertiary referral hospital from 2008 to 2015 were included prospectively. Data were collected before (T0) as well as 1 year (T1) and 2 years (T2) post-surgery. Within the European Spine Tango registry, prospective patient and QoL data were collected using validated outcome scores: Oswestry Disability Index, Short Form 36/EuroQol, Visual Analog Scale, and Core Outcome Measures Index. RESULTS: From 195 patients surgically treated for VO, QoL data were available from 136 patients at T0, 100 patients at T1, and 82 patients at T2, respectively. The 1- and 2-year mortality rates were 20% and 23%. Mainly all QoL outcome scores showed significant improvement at T1 and did not change significantly from T1 to T2. CONCLUSION: Surgical treatment of VO patients leads to significantly improved QoL. Nevertheless, QoL levels were below those of the general population. Our results underscore that spine disability questionnaires measuring QoL are mandatory to demonstrate comprehensively the severity of this entity. Our study confirms a high mortality and points out the role of VO as a potentially life-threatening condition.

Neuromyelitis optica spectrum disorder in China: Quality of life and medical care experience.

BACKGROUND: Neuromyelitis optica spectrum disorder (NMOSD) is considered to be the most common subset of CNS inflammatory demyelinating diseases in China. We aimed to systematically evaluate the impact of NMOSD on Chinese patients' quality of life (QoL), medical care experience, family wellness and social life. METHODS: A cross-sectional survey was performed involving 210 mostly AQP4-IgG-positive NMOSD patients from 25 provinces across China. An established survey instrument specific for NMOSD developed by The Guthy-Jackson Charitable Foundation and the Multiple Sclerosis Quality of Life-54 scale were implemented. Pearson or Spearman Correlation analysis was performed to define the significant determinants of QoL. RESULTS: More than 70% of the participants carried an initial diagnosis other than NMOSD, most of the patients were initially diagnosed with idiopathic optic neuritis (43.6%), multiple sclerosis (19.5%), gastrointestinal disorders (11.0%) and depression (10.0%). The average time elapsed between the first symptoms and accurate NMOSD diagnosis was 2.4 ± 4.9 years. Sixty-one percent of the participants reported NMOSD imposing a great negative impact on their life quality. NMOSD worsened both physical and emotional health (Short Form-36 physical health score: 37.9 ± 43.7, emotional health score: 44.8 ± 44.3). Visual impairment, pain, and bowel and bladder dysfunction were the greatest negative physical determinants of overall QoL. Worsened physical health was associated with diminished emotional health (r = 0.71, p < 0.001), and also with an interference in the ability to work (r = 0.41, p < 0.001). Only a small portion (3.3%) of the patients exhibited psychological resilience (with poor physical health but very robust emotional health). NMOSD significantly influenced the decision to have children in the study cohort, especially in the younger generation (r = -0.476, p < 0.001). Non-specific oral immunosuppressants were the most common preventive treatments, and only 13.9% received rituximab treatment. More than half (55.7%) of the patients reported dissatisfaction with current treatment options. A large proportion (88.1%) of the participants reported health insurance insufficient to pay all disease-related costs. Both concerns about treatment and about financial burden contributed to diminished QoL. CONCLUSIONS: This investigation yields novel insights into the physical, emotional, and socioeconomic impact of NMOSD on Chinese patients, which may afford potentially modifiable aspects of personal or clinical care to improve the patients' QoL, as well as serve as baseline data to reflect how future standard treatments will change patients' life quality.

Pain is a common problem in patients with ILD.

BACKGROUND: As it is less known about the prevalence and characteristics of pain in the patients with interstitial lung disease (ILD), this paper aims at determining the characteristics of the pain in the patients with ILD. METHODS: Subjects with ILD and health controls with the matched ages and genders completed Short Form McGill Pain Questionnaire (SF-MPQ) and part of the Brief Pain Inventory (BPI) Short Form to elicit the characteristics of the pain. The patients with ILD were also assessed through Pulmonary Function Test, Six Minutes Walking Test (6MWT), modified Medical Research Council Dyspnea Scale (mMRC) for state of the illness and measured health-related quality of life (HRQoL) by Short Form-36 (SF-36) and psychological associations by Hospital Anxiety and Depression Scale (HADS). RESULTS: A total of 63 subjects with ILD and 63 healthy controls (HC) were recruited in our study. The prevalence of the pain was 61.9% in ILD versus 25.3% in HC (P = 0.005) and the median score of the pain rank index (PRI) in ILD was higher than that in HC (P = 0.014). Chest (46.1%) accounted for the highest of overall pain locations in subjects with ILD. Associated clinical factors for pain intensity in the patients with ILD included exposure history of risk factors of ILD, with a longer distance of 6MWD (≥ 250 m), and a higher mMRC score (2-4). The patients with ILD and pain are more likely to suffer impaired HRQoL (P = 0.0014) and psychological problems (P = 0.0017, P = 0.044). CONCLUSION: The pain is common in those with ILD and the pain intensity is associated with exposure history, 6MWD, and mMRC score. The patients with ILD and pain were possibly to suffer depression, anxiety, and impaired HRQoL.

Prospective evaluation of the Quality of Life after Brain Injury (QOLIBRI) score: minor differences in patients with major versus no or mild traumatic brain injury at one-year follow up.

BACKGROUND: The Quality of Life after Brain Injury (QOLIBRI) score was developed to assess disease-specific health-related quality of life (HRQoL) after traumatic brain injury (TBI). So far, validation studies on the QOLIBRI were only conducted in cohorts with traumatic brain injury. This study investigated the longer-term residuals in severely injured patients, focusing specifically on the possible impact of major TBI. METHODS: In a prospective questionnaire investigation, 199 survivors with an injury severity score (ISS) > 15 participated in one-year follow-up. Patients who had sustained major TBI (abbreviated injury scale, AIS head > 2) were compared with patients who had no or only mild TBI (AIS head ≤ 2). Univariate analysis (ANOVA, Cohen's kappa, Pearson's r) and stepwise linear regression analysis (B with 95% CI, R, R2) were used. RESULTS: The total QOLIBRI revealed no differences in one-year outcomes between patients with versus without major TBI (75 and 76, resp.; p = 0.68). With regard to the cognitive subscore, the group with major TBI demonstrated significantly more limitations than the one with no or mild TBI (p < 0.05). The AIS head correlated significantly with the cognitive dimension of the QOLIBRI (r = - 0.16; p < 0.05), but not with the mental components of the SF-36 or the TOP. In multivariate analysis, the influence of the severity of head injury (AIS head) on total QOLIBRI was weaker than that of injured extremities (R2 = 0.02; p < 0.05 vs. R2 = 0.04; p = 0.001) and equal to the QOLIBRI cognitive subscore (R2 = 0.03, p < 0.01 each). CONCLUSIONS: Given the unexpected result of similar mean QOLIBRI total score values and only minor differences in cognitive deficits following major trauma independently of whether patients sustained major brain injury or not, further studies should investigate whether the QOLIBRI actually has the discriminative capacity to detect specific residuals of major TBI. In effect, the score appears to indicate mental deficits following different types of severe trauma, which should be evaluated in more detail. TRIAL REGISTRATION: NCT02165137 ; retrospectively registered 11 June 2014.

Assessment of health-related quality of life in spine treatment: conversion from SF-36 to VR-12.

BACKGROUND CONTEXT: Health-related quality-of-life outcomes have been collected with the Medical Outcomes Study (MOS) Short Form 36 (SF-36) survey. Boston University School of Public Health has developed algorithms for the conversion of SF-36 to Veterans RAND 12-Item Health Survey (VR-12) Physical Component Summary (PCS) and Mental Component Summary (MCS) scores. PURPOSE: The purpose of the present study is to investigate the conversion of the SF-36 to VR-12 PCS and MCS scores. STUDY DESIGN: Preoperative and postoperative SF-36 were collected from patients who underwent lumbar or cervical surgery from a single surgeon between August 1998 and January 2013. METHODS: Short Form 36 PCS and MCS scores were calculated following their original instructions. The SF-36 answers were then converted to VR-12 PCS and MCS scores following the algorithm provided by the Boston University School of Public Health. The mean score, preoperative to postoperative change, and proportions of patients who reach the minimum detectable change were compared between SF-36 and VR-12. RESULTS: A total of 1,968 patients (1,559 lumbar and 409 cervical) had completed preoperative and postoperative SF-36. The values of the SF-36 and VR-12 mean scores were extremely similar, with score differences ranging from 0.77 to 1.82. The preoperative to postoperative improvement was highly significant (p<.001) for both SF-36 and VR-12 scores. The mean change scores were similar, with a difference of up to 0.93 for PCS and up to 0.37 for MCS. Minimum detectable change (MDC) values were almost identical for SF-36 and VR-12, with a difference of 0.12 for PCS and up to 0.41 for MCS. The proportions of patients whose change in score reached MDC were also nearly identical for SF-36 and VR-12. About 90% of the patients above SF-36 MDC were also above VR-12 MDC. CONCLUSIONS: The converted VR-12 scores, similar to the SF-36 scores, detect a significant postoperative improvement in PCS and MCS scores. The calculated MDC values and the proportions of patients whose score improvement reach MDC are similar for both SF-36 and VR-12.

Comparison of Quality of Life in Patients with ß-Thalassemia Intermedia and ß-Thalassemia Major in Southern Iran.

Increased life expectancy in patients with ß-thalassemia (ß-thal) requires healthcare professionals to give greater attention to improving their quality of life (QoL). We aimed to evaluate health-related QoL (HRQoL) and its determinants in patients with ß-thal intermedia (ß-TI) compared with ß-thal major (ß-TM). In this cross sectional study, 118 patients with ß-TI, referred to the Thalassemia Clinic of Shiraz University of Medical Sciences, Shiraz, Iran, were investigated by convenience sampling from January to June 2014 in southern Iran. A Short Form-36 (SF36) questionnaire was used. We had previously conducted a similar study in 101 patients with ß-TM (12 to 38 years). Compared data of the two studies were analyzed. Mean age was 26.5 ± 6.5 (12 to 48) years in ß-TI and 19.5 ± 4.4 (12-38) years in the ß-TM group. The best scales of HRQoL were physical functionin (PF) (76.8 ± 26.6) and bodily pain (BP) (70.1 ± 24.8) in the ß-TI group. Males had significantly better score only in vitality dimension compared to females (p = 0.020). Higher education (p = 0.023) in univariate analysis and age ≤20 years (B coefficient = 13, p = 0.008) in multivariate analysis showed significant relationships with higher total HRQoL score in ß-TI. Comparison of ß-TI and ß-TM, after adjusting for covariates, total HRQoL was similar between the two groups. In evaluating the subscales, only PF showed a better condition in patients with ß-TM [adjusted mean difference = 12.5, 95% confidence interval (95% CI): 5.6-19.3, p < 0.0001]. Contrary to our expectations, QoL in patients with ß-TI were not better than ß-TM. Training programs and psychosocial support of all patients with ß-TI and ß-TM as well as their care providers with more focus on older patients, females and the patients with lower educational degree should be taken into account.

Quality of life correlates with muscle strength in patients with dermato- or polymyositis.

The aim of this study was to compare health-related quality of life (HQoL) in adults with dermatomyositis (DM) or polymyositis (PM) with a healthy control group and to assess whether muscle strength was associated with HQoL in patients with DM or PM. A cross-sectional study was performed and included 75 patients with DM or PM and 48 healthy controls. HQoL was assessed by the Short Form 36 questionnaire (SF-36). Muscle strength of the patients was assessed using the Manual Muscle Test-8 (MMT8). Covariables and possible confounding factors were collected by validated tools. Associations were determined in multiple linear regression models. The patients had significantly lower HQoL than the control group in both the physical component summary score (PCS) and the mental component summary score (MCS). Thus, the PCS-difference between groups was 32% (p < 0.001), whereas the MCS-difference was 14% (p < 0.001). Muscle strength was associated with one domain in the patients; Physical Function (ß = 1.2; 95% confidence interval 0.37 to 2.1). No statistically significant associations were found between muscle strength and HQoL in the remaining domains. Patients with DM or PM have reduced HQoL compared to healthy controls. Notably, muscle strength was associated with scores of the domain reflecting perceived physical function in patients. These findings corroborate the validity of including selected patient reported outcomes in the evaluation and monitoring of patients with DM or PM.

Determinants of Quality of Life in High-Dose Benzodiazepine Misusers.

Benzodiazepines (BZDs) are among the most widely prescribed drugs in developed countries, but they have a high potential for tolerance, dependence and misuse. High-dose BZD misuse represents an emerging addiction phenomenon, but data on quality of life (QoL) in high-dose BZD misusers are scant. This study aimed to explore QoL in high-dose BZD misuse. We recruited 267 high-dose BZD misusers, compared the QoL scores in those who took BZD only to poly-drug misusers, and explored the role of demographic and clinical covariates through multivariable analysis. Our data confirmed worse QoL in high-dose BZD misusers and showed that (a) QoL scores were not negatively influenced by the misuse of alcohol or other drugs, or by coexisting psychiatric disorders; (b) demographic variables turned out to be the most significant predictors of QoL scores; (c) BZD intake significantly and negatively influenced QoL. Physical and psychological dimensions of QoL are significantly lower in high-dose BZD misusers with no significant effect of comorbidities. Our data suggest that the main reason for poor QoL in these patients is high-dose BZD intake per se. QoL should be considered among outcome measures in these patients.

Comparison of Surgeon Rating of Severity of Stenosis Using Magnetic Resonance Imaging, Dural Cross-Sectional Area, and Functional Outcome Scores.

OBJECTIVE: To determine the relationship between the severity of stenosis graded using both surgeons' visual assessment of spinal stenosis as well as measurement of dural cross-sectional area on magnetic resonance imaging (MRI), with the patient's disability. METHODS: Seven fellowship-trained spine surgeons reviewed MRI studies retrospectively of 30 symptomatic consecutive patients with lumbar stenosis and graded stenosis in the central canal, the lateral recess, and the foramen at T12-L1 to L5-S1 as none, mild, moderate, or severe. Dural cross-sectional area was measured at each level from T12-L1 to L5-S1. All patients completed the questionnaires for Oswestry Disability Index (ODI), Short Form 36 (SF-36), and recorded Visual Analog Scale scores for leg and back pain, and symptom severity scale of the Zurich claudication questionnaire. RESULTS: There was positive correlation between the right leg pain Visual Analog Scale score and the mean surgeon grades for central and lateral recess stenosis at L4-L5 and lateral recess stenosis at L5-S1. Except for a positive correlation between role physical score and surgeon grade for lateral recess stenosis at L5-S1, we found no correlation between the surgeons' grading of stenosis at any level with the ODI or SF-36. We found no correlation between the dural cross-sectional area with the ODI or SF-36. We did not find any correlation between the Zurich symptom severity scale and surgeons' grading of stenosis at any level. CONCLUSIONS: Although surgeons rely on visual assessment of the severity of stenosis while making surgical decisions, we found that objective and subjective imaging parameters to grade severity of stenosis did not consistently indicate the patient's disability level.

Fifteen to twenty-five year functional outcomes of twenty-two patients treated with posterior Cotrel-Dubousset type instrumentation: a limited but detailed review of outcomes.

BACKGROUND: Long-term outcomes of patients undergoing extensive fusions for adolescent idiopathic scoliosis (AIS) have conflicting results. Moskowitz found uninstrumented scoliosis fusion patients had similar back pain as a normal age matched population. Recently, long-term outcomes of patients with Harrington rod instrumentation were reviewed and found similar functional outcome scores to non-scoliosis patients, with trending toward worse outcomes when fusions extended to L4. Our study examined long-term functional outcomes of patients treated with Cotrel-Dubousset (CD) instrumentation and determined whether distal level of instrumented fusion (L4 and L5) correlate with increased back pain or lower functional level. METHODS: Retrospective review of AIS surgeries from 1986 to 1996 was undertaken. Patient demographics and surgical data were collected via case-note audit. Patients were contacted and asked to complete a series of functional outcome questionnaires including visual analog scales (VAS) for pain, Short-Form 36 (SF-36), Scoliosis Research Society 22 (SRS-22) and Oswestry Disability Index (ODI) for function. ANOVA technique categorically compared outcome scores to most distal levels of fusion. Linear regression compared patient reported outcomes to time elapsed since surgery. Statistical significance was p < 0.05. RESULTS: One hundred twelve patients were identified, 50 patients were contacted, and 22 agreed to participation and completed a full assessment. Follow-up time since surgery ranged from 15 to 26 years and age ranged from 30 to 43 years. Six patients reported daily VAS back pain of ≥5; with a mean of 2.5. Back pain was not associated with level of distal fusion (p = 0.92). ODI was 15.36, with six patients' ODI >20. No relationship was shown between ODI and distal level of fusion (p = 0.72). SF-36 and SRS 22 values were also not related to distal level of instrumentation. Patient reported VAS back pain scores (r(2) = 0.18, p = 0.05), ODI (r(2) = 0.09, p = 0.17), and SF-36 and SRS-22 were not worse in patients with longer follow-up over time. Back pain and certain functional score subcategories of the SF-36 and SRS-22 trended toward improved results over time. CONCLUSIONS: Most patients who underwent multi-segment spinal fixation appeared to do well long-term, with minimal back pain. Lowest instrumented segment did not appear to be associated with increased back pain after 15 to 25 years follow-up.

Health-related quality of life in two randomized controlled trials of phentermine/topiramate for obesity: What mediates improvement?

PURPOSE: Phentermine/topiramate combination therapy resulted in significant weight loss and improvements in cardiometabolic risk factors in patients with obesity/overweight in two published 56-week randomized, placebo-controlled trials (EQUIP and CONQUER). The purpose of the current study was to examine whether phentermine/topiramate is also associated with greater improvements in health-related quality of life (HRQOL) and whether HRQOL improvements are solely attributable to weight reduction. METHODS: Patients in EQUIP (n = 751) had a body mass index (BMI) ≥ 35 with no obesity-related comorbidity. Patients in CONQUER (n = 1623) had a BMI ≥ 27 and ≤ 45 and at least two obesity-related comorbid conditions. HRQOL was assessed with Impact of Weight on Quality of Life-Lite (IWQOL-Lite) and Medical Outcomes Study Short Form (SF-36) (CONQUER only). RESULTS: Significant improvements in both obesity-specific and physical HRQOL were observed at 56 weeks in both trials (p < .0001). In EQUIP, BMI reduction fully mediated improvements in IWQOL-Lite total score (p < .0001). In CONQUER, both BMI reduction (all p values < .0001) and change in depressive symptoms (all p values < .025) were significant mediators of improved IWQOL-Lite total score and SF-36 Physical Component Summary score. Gender, psychiatric history, and baseline triglycerides moderated these relationships. CONCLUSIONS: Both trials demonstrated that treatment with phentermine/topiramate improved HRQOL compared with placebo. Although reduction in BMI accounted for the majority of improvements in obesity-specific and physical HRQOL, decrease in depressive symptoms was also a significant mediator. Results highlight the predominance of weight reduction as a key factor in improving HRQOL in obesity.

Haemophilia A carriers experience reduced health-related quality of life.

INTRODUCTION: Haemophilia A is an X-linked recessive bleeding disorder that primarily affects males. Emerging data support evidence for increased bleeding in female haemophilia A carriers despite factor VIII activity within the normal range. AIM: Data regarding the effect of increased bleeding on health-related quality of life (HR-QOL) in haemophilia A carriers is sparse. We tested the hypothesis that haemophilia A carriers have reduced HR-QOL related to bleeding symptoms. METHODS: We conducted a cross-sectional study at Vanderbilt University. Case subjects were obligate or genetically verified haemophilia A carriers age 18-60 years. Control subjects were mothers of children with cancer who receive care at the Vanderbilt paediatric haematology-oncology clinic. Trained interviewers administered the Rand 36-Item Health Survey 1.0, a validated questionnaire evaluating eight health concepts that may affect HR-QOL, to each study participant. Mann-Whitney U-tests were used to compare median scores for the eight health domains between the case and control groups. RESULT: Forty-two haemophilia A carriers and 36 control subjects were included in analyses. Haemophilia A carriers had significantly lower median scores for the domains of 'Pain' (73.75 vs. 90; P = 0.02) and 'General health' (75 vs. 85; P = 0.01) compared to control subjects. CONCLUSION: Haemophilia A carriers in our study demonstrated significantly lower median scores on the Rand 36-item Health Survey 1.0 in the domains of 'Pain' and 'General Health' compared to women in the control group. Our findings highlight the need for further investigation of the effect of bleeding on HR-QOL in this population.

Update on Epidemiology and Clinical Assessment Tools of Cutaneous Lupus Erythematosus and Dermatomyositis.

Cutaneous Lupus Erythematosus (CLE) and Dermatomyositis (DM) are cutaneous autoimmune diseases that have been among the least systematically studied, due in part to the lack of validated outcome instruments in the past. More recent epidemiologic studies have elucidated the incidence and prevalence of these diseases and their subtypes. In addition, the advent of validated clinical outcome measures, including the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) and the Cutaneous Dermatomyositis Disease Area and Severity Index (CDASI), has led to an objective means of measuring activity and damage of the disease. These outcome measures have established the framework for evaluating responsiveness and therapeutic efficacy in clinical trials as well as longitudinal studies to study disease course.

The health of the poor: women living in informal settlements.

OBJECTIVES: A large share of the urban population in developing countries lives in informal settlements or "slums" today. This study investigates the association between slum residence and health among adult Ghanaian women residing in the Accra Metropolitan Area. METHODS: Health data collected as part of the Women's Health Study of Accra round II (WHSA-II) was combined with data from the Household and Welfare Study of Accra (HAWS) to compare the health of female slum dwellers to the health of female non-slum dwellers living in the Accra Metropolitan Area. Group means were calculated and multivariate linear regression models were estimated to compare eight domains of health as measured by the short-form 36 (SF-36) questionnaire. RESULTS: Women living in informal settlements were found to display consistently better health. Conditional on all observable characteristics, women living in informal settlements scored higher on all self-reported health outcomes than women living in non-slum areas. The differences appear largest for general health as well as for the physical role functioning domains, and appear smallest for the social role functioning and bodily pain domains. CONCLUSIONS: The results presented suggest that slum residence does not have a negative effect on self-reported health among women in Accra. Three factors may contribute to the generally positive association between slum residence and observed outcomes: i) self-selection of individuals with strong health into informal settlements and an accordingly small impact of environmental factors on health ii) self-selection of more driven and ambitious individuals into slum neighborhoods who may have a generally more positive view of their health and iii) the geographic placement of slum neighborhoods in central neighborhoods with relatively easy access to health facilities.

Health-Related Quality of Life in Korean Patients with Rheumatoid Arthritis / 대한류마티스학회지

OBJECTIVE: The objective of this study is to assess the health-related quality of life (HRQOL), to examine the correlation among each measurement, and to identify the predictor for HRQOL in Korean patients with rheumatoid arthritis (RA). METHODS: The HRQOL and clinical and laboratory parameters were assessed by Short Form Health Survey-36 (SF-36), EuroQol5 Dimensions (EQ-5D), time trade off (TTO) and standard gamble (SG) using computer software, Centers for Epidemiologic StudiesDepression (CES-D), social support, self-efficacy scale, Korean Health Assessment Questionnaire (KHAQ), functional class, radiologic classification, morning stiffness, Ritchie index, erythrocyte sedimentation rate (ESR), and c-reactive protein (CRP) respectively from 100 outpatients with RA. And the data of the SF-36 and EQ-5D in RA patients were compared with those in 228 healthy controls. RESULTS: Of the 100 subjects with RA, 93 (93 %) were women with mean age of 51.7+/-9.8 years. The mean years of disease onset were 11.16+/-9.23. The mean scores of SF-36 global health (GH), mental component summary (MCS) and physical component summary (PCS) were 51.5+/-20.6, 61.6+/-26.6, and 47.1+/-24.1, respectively. The mean EQ-5D utility and visual analog scale (VAS) score were 0.58+/-0.3 and 61.7+/-20.5, respectively. The mean scores of the TTO and SG were 0.56+/-0.58 and 0.51+/-0.39. The SF-36 and EQ-5D scores in RA patients were significantly lower than those in healthy controls. The mean scores of 8 KHAQ disability index and visual analog pain scale were 0.83+/-0.65 and 50.0+/-23.7, respectively. The mean scores of CES-D, self-efficacy scale, social support, and social network were 9.67+/-6.76, 68.2+/-15.2, 2.37+/-0.19, and 2.19+/-0.55, respectively. The KHAQ mean score was negatively correlated with the scores of SF-36 GH, MCS, PCS, EQ-5D utility, EQ-5D VAS score, social support, social network (r=-0.62, r=-0.47, r=-0.64, r=-0.60, r=-0.39, r=-0.26, r=-0.36, respectively, all p's<0.001), and self-efficacy scale (r=-0.24, p=0.02), and positively correlated with the CES-D (r=0.61, p<0.001). In multivariate models, the predicting variables of SF-36 GH were KHAQ and self-efficacy scale. The predicting variables of SF-36 MCS were age, KHAQ, and self-efficacy scale and the predicting variables of SF-36 PCS were age, income, KHAQ, and self-efficacy scale. CONCLUSION: These results suggest that HRQOL in Korean patients with rheumatoid arthritis is significantly lower than healthy control. The age, HAQ, CES-D, self-efficacy scale were meaningful variables that was significantly correlated with HRQOL. Therefore, the efforts to improve HRQOL may be designed to improve the self-efficacy and the depression in addition to conventional treatment.

Health-related Quality of Life in Korean Patients with Osteoarthritis / 대한류마티스학회지

OBJECTIVE: In this study, we aimed to assess the health-related quality of life (HRQOL), to evaluate the relationship between HRQOL, and various factors in Korean patients with osteoarthritis (OA). METHODS: The HRQOL and clinical and laboratory parameters were assessed by Short Form Health Survey-36 (SF-36), EuroQol5 Dimensions (EQ-5D), time trade off (TTO) and standard gamble (SG) using computer software, Centers for Epidemiologic Studies Depression (CES-D), social support, self-efficacy scale, Western Ontario and McMaster Universities (WOMAC), functional class, and radiological grading, respectively, in 103 outpatients with OA. And the data of the SF-36 and EQ-5D in OA patients were compared with those in 228 healthy controls. RESULTS: Of the 103 subjects, 99 (96.1%) were women with a mean age of 61.1?6.7 years. The mean year of disease duration was 9.44+/-7.44. The mean scores of SF-36 global, mental component summary (MCS) and physical component summary (PCS) were 51.5?20.6, 61.6?26.6 and 47.1?24.1, respectively. The mean EQ-5D utility and visual analog scale (VAS) scores were 0.56+/-0.26 and 60.0+/-17.3, respectively. The mean scores of the TTO and SG were 0.74+/-0.22 and 0.60+/-0.31, respectively. The mean scores of CES-D, self-efficacy scale, social support and social network were 9.52+/-5.67, 60.6+/-16.0, 2.32+/-0.22, and 2.01+/-0.66, respectively. The mean scores of WOMAC pain, stiffness and function were 28.8+/-15.4, 6.08+/-3.79, and 2.17+/-1.92, respectively. In the correlations analysis among health-related quality of life and other variables, the cores of KWOMAC, CES-D, and self-efficacy showed the good correlation with the scores of SF-36 and EQ-5D. In multivariate models, the statistically significant variables of SF-36 global and PCS were KWOMAC, and the statistically significant variables of SF-36 MCS were marital status and KWOMAC. CONCLUSION: This study shows that HRQOL in Korean patients with osteoarthritis is significantly lower than healthy control. Among the variables, only the WOMAC was significantly correlated with HRQOL. Therefore, the efforts to improve HRQOL should be focused on controlling the disease activity and on improving the functional state.

Health-Related Quality of Life in Korean Patients with Systemic Lupus Erythematosus / 대한류마티스학회지

OBJECTIVE: To assess the health-related quality of life (HRQOL) of systemic lupus erythematosus (SLE) patient, to compare the HRQOL of SLE patients with that of healthy controls, and to identify the predicting variables on physical and mental health in Korean patients with SLE. METHODS: In this cross sectional study, the HRQOL and clinical and laboratory parameters were assessed by Short Form Health Survey-36 (SF-36), EuroQol5 Dimensions (EQ-5D), time trade off (TTO), standard gamble (SG), Centers for Epidemiologic StudiesDepression (CES-D), self-efficacy scale, social support, social network, SLE Disease Activity Index (SLEDAI) and Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) Damage Index (SDI), respectively, from 111 outpatients with SLE. And the data of the SF-36 and EQ-5D in SLE patients were compared with those in 228 healthy controls. RESULTS: 106 (95.5%) were women and 5 (4.5%) were men, with a mean (+/-SD) age of 33.2 years (+/-9.9) and mean disease duration of 7.19 years (+/-4.59). The mean scores of SF-36 global, mental component summary (MCS) and physical component summary (PCS) were 62.2 (+/-20.4), 67.5 (+/-24.6), and 65.7 (+/-24.8), respectively. The mean EQ-5D utility and visual analogue scale (VAS) score were 0.73 (+/-0.20) and 67.5 (+/-17.9). The mean scores of the TTO and SG were 0.60 (+/-0.55) and 0.59 (+/-0.45). The scores on the SF-36 global, EQ-5D utility and EQ-5D VAS in healthy controls were 77.5 (+/-13.1), 0.73 (+/-0.20) and 67.5 (+/-17.9), respectively. The mean scores of CES-D, self-efficacy scale, social support, and social network were 9.09 (+/-6.82), 66.5 (+/-17.4), 2.53 (+/-0.17) and 2.29 (+/-0.46), respectively. The mean SLEDAI and the mean SDI were 5.87 (+/-4.32) and 0.73 (+/-1.02). The SDI was negatively correlated with the scores of SF-36 global, PCS, and EQ-5D VAS (r=-0.30, p<0.001; r=-0.34, p<0.001; r=-0.28, p<0.003), and positively correlated with the CES-D (r=0.19, p<0.04). In multivariate models, the predicting variables on SF-36 global and 6 MCS was self-efficacy, and the predicting variables on SF-36 PCS were SLEDAI and self-efficacy. CONCLUSION: In this study, we observed that HRQOL in Korean patients with SLE was lower than those in healthy control. The SF-36 and the EQ-5D were valid measurements to assess HRQOL in patients with SLE. In multivariate model, self-efficacy and SLEDAI were only meaningful variables correlated with HRQOL among variables. Therefore, to improve the HRQOL in Korean patients with SLE, we should focus on a program to improve self-efficacy.