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INTRODUCTION: In patients with haemophilia, general psychological distress as measured by the National Comprehensive Cancer Network (NCCN) distress thermometer has been associated with pain, disability and increased healthcare utilization. AIMS: To develop and validate a measure of haemophilia-related distress. METHODS: After qualitative interviews, the Hemophilia-Related Distress Questionnaire (HRDq) was developed. To validate the HRDq, adults (≥18 years) with haemophilia were enrolled, reported demographic and clinical information, and completed the HRDq and other questionnaires that measured similar constructs. Analysis included factor analysis and assessment of internal consistency using Cronbach's α, convergent validity using Pearson's correlation coefficient, and discriminant validity by comparing subgroups of patients. Test-retest reliability was assessed using an intraclass correlation coefficient (ICC). RESULTS: Among 130 enrolled participants, 126 (median age=32.7 years) completed the 24 item HRDq in a median time of 5.4 minutes with overall HRDq scores ranging from 2 to 83 (median score=31.5; higher scores indicating higher distress). Assessment of convergent validity demonstrated a strong correlation (ρ>.60) of the HRDq total score with the NCCN Distress Thermometer, Haem-A-QoL total Score, and PROMIS-29 Profile social role domain and a mild to moderate correlation with all other questionnaire domains (.3-.59, p < .05). Distress was higher among those who had less education, were not employed, and were disabled and was not significantly different among those with severe compared with non-severe disease. Assessment of test-retest reliability demonstrated an ICC value of .84 (95% CI .71-.91) for the total score. CONCLUSIONS: The HRDq demonstrates good internal consistency, construct and discriminant validity, and retest reliability with a low responder burden.
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Hemofilia A , Adulto , Humanos , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Distress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these populations, disease-specific distress is associated with health outcomes. Haemophilia-related distress is less understood. AIM: To identify qualitative features of haemophilia-related distress among affected adults to ultimately inform the creation of a measurement tool. METHODS: Adults with haemophilia A or B associated with a large haemophilia treatment centre in the south-eastern U.S. were recruited to participate in this qualitative study. Fifteen participants completed semi-structured telephone interviews. Interviews lasted 1-2 hours and explored experiences of distress related to various aspects of haemophilia. Interviews were audio taped, transcribed and coded using NVIVO, software for organizing, managing and analysing qualitative data. Coding was deductive and inductive, and the analysis was thematic. RESULTS: Haemophilia-related distress was broadly related to feelings of isolation and vulnerability which incorporated health system factors, physical functioning, caretaker roles and psychological considerations. Specific features associated with haemophilia-related distress included lack of trust in the knowledge of haemophilia and care provided by staff in community healthcare settings, concerns about the future such as health insurance access and ageing/disability, long-standing feelings of being different from others and feeling like an outsider, treatment burdens and fear of acute bleeds. Protective factors included supportive relationships with family, friends and haemophilia care teams through which participants received practical and emotional support. CONCLUSION: Features of haemophilia-related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia.
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Hemofilia A/psicologia , Hemofilia B/psicologia , Estresse Psicológico/epidemiologia , Adolescente , Adulto , Estudos de Coortes , Feminino , Hemofilia A/complicações , Hemofilia B/complicações , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Estresse Psicológico/complicações , Adulto JovemRESUMO
BACKGROUND: A cohort of male lead-exposed workers with past blood lead levels, previously followed for mortality over 12 years, has now been followed for an additional 10 years. This has doubled the number of deaths and allowed for examination of mortality outcomes across a wide range of blood lead levels. OBJECTIVE: Evaluate association between lead exposure and 16 causes of death. METHODS: The cohort included male workers from 11 U.S. states enrolled in a U.S. lead surveillance program. Maximum blood lead level for each worker was abstracted from surveillance records. Mortality was assessed using the National Death Index. We conducted internal analyses via Cox regression adjusting for age, calendar time, and race. External analyses compared cohort mortality rates with those of the U.S. POPULATION: Blood lead categories were defined as 0-<5, 5-<25, 25-<40, and ≥40⯵g/dL with the two lower categories combined for outcomes with <5 deaths in the 0-<5 group. RESULTS: The cohort (nâ¯=â¯58,368) was followed for a median of 19 years and experienced 6,527 deaths. Average maximum blood lead was 25.9⯵g/dL and mean year of first blood lead test was 1997. Strong associations were found between blood lead level with larynx and lung cancer mortality. For these outcomes, hazard ratios and 95% confidence intervals across blood lead categories were 1.0 (ref), 1.1 (0.4-3.2), 3.4 (1.3-9.1) for larynx and 1.0 (ref), 1.6 (1.0-2.5), 2.0 (1.3-3.1), 2.9 (1.9-4.5) for lung (trend p-valuesâ¯=â¯0.08 andâ¯<â¯0.01, respectively). Positive significant trends were also seen for mortality from brain cancer, chronic obstructive pulmonary disease, ischemic heart disease, and non-hodgkin's lymphoma. Findings suggested associations with chronic renal disease and rectal cancer mortality, although trends were not statistically significant. CONCLUSIONS: The additional follow up confirmed previous relationships between lead and mortality and also detected new associations.
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Poluentes Ambientais , Chumbo , Exposição Ocupacional/estatística & dados numéricos , Estudos de Coortes , Seguimentos , Humanos , Masculino , Neoplasias , Modelos de Riscos Proporcionais , Estados UnidosRESUMO
OBJECTIVE: Study carcinogenicity of inorganic lead, classified as 'probably carcinogenic' to humans by the International Agency for Research on Cancer (brain, lung, kidney and stomach). METHODS: We conducted internal and external analyses for cancer incidence in two cohorts of 29 874 lead-exposed workers with past blood lead data (Finland, n=20 752, Great Britain=9122), with 6790 incident cancers. Exposure was maximum measured blood lead. RESULTS: The combined cohort had a median maximum blood lead of 29 µg/dL, a mean first blood lead test of 1977, and was 87% male. Significant (p<0.05) positive trends, using the log of maximum blood lead, were found for brain cancer (malignant), Hodgkin's lymphoma, lung cancer and rectal cancer, while a significant negative trend was found for melanoma. Borderline significant positive trends (0.05≤p≤0.10) were found for oesophageal cancer, meningioma and combined malignant/benign brain cancer. Categorical analyses reflected these trends. Significant interactions by country were found for lung, brain and oesophageal cancer, with Finland showing strong positive trends, and Great Britain showing modest or no trends. Larynx cancer in Finland also showed a positive trend (p=0.05). External analyses for high exposure workers (maximum blood lead >40 µg/dL) showed a significant excess for lung cancer in both countries combined, and significant excesses in Finland for brain and lung cancer. The Great Britain data were limited by small numbers for some cancers, and limited variation in exposure. CONCLUSIONS: We found strong positive incidence trends with increasing blood lead level, for several outcomes in internal analysis. Two of these, lung and brain cancer, were sites of a priori interest.
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Chumbo/efeitos adversos , Chumbo/sangue , Neoplasias/epidemiologia , Doenças Profissionais/epidemiologia , Exposição Ocupacional/efeitos adversos , Estudos de Coortes , Feminino , Finlândia/epidemiologia , Humanos , Incidência , Masculino , Neoplasias/sangue , Doenças Profissionais/sangue , Modelos de Riscos Proporcionais , Reino Unido/epidemiologiaRESUMO
PURPOSE: Previous studies provided evidence for the validity of the PROMIS Pediatric measures in cross-sectional studies. This study evaluated the ability of the PROMIS Pediatric measures to detect change over time in children and adolescents with cancer, nephrotic syndrome (NS), or sickle cell disease (SCD). METHODS: Participants (8-17 years) completed measures of fatigue, pain interference, anger, anxiety, depressive symptoms, mobility, upper extremity, and peer relationships at three or four time points (T1-T4). Between T1 and T2, children with cancer received chemotherapy and children with SCD experienced a pain exacerbation. Children with NS were first assessed during active disease (T2), with T3 and T4 conducted at disease remission. For the primary analysis of responsiveness, we expected better scores at T3 (recovery) compared to T2 (event) for all diseases. T1 and T4 are also expected to have better scores than T2. Linear mixed models were used and adjusted for time, gender, age, race/ethnicity, education, comorbid conditions, and disease. RESULTS: Enrolled were 96 children with cancer, 121 children with SCD, and 127 children with NS. Fatigue, pain interference, mobility, and upper extremity scores worsened from T1 (baseline) to T2 (event) (p < 0.01), and significantly improved from T2 to T3 and T4 (p < 0.01). Similarly, anxiety and depressive symptoms significantly improved from T2 to T3 and T4 (p < 0.01). CONCLUSIONS: This study provides evidence for the responsiveness of seven PROMIS Pediatric measures to clinical disease state in three chronic illnesses. The findings support use of PROMIS Pediatric measures in clinical research.
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Anemia Falciforme/diagnóstico , Neoplasias/diagnóstico , Síndrome Nefrótica/diagnóstico , Qualidade de Vida/psicologia , Adolescente , Anemia Falciforme/patologia , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Neoplasias/patologia , Síndrome Nefrótica/patologia , Autorrelato , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To investigate further whether inorganic lead is a carcinogen among adults, or associated with increased blood pressure and kidney damage, via a large mortality study. METHODS: We conducted internal analyses via Cox regression of mortality in three cohorts of lead-exposed workers with blood lead (BL) data (USA, Finland, UK), including over 88 000 workers and over 14 000 deaths. Our exposure metric was maximum BL. We also conducted external analyses using country-specific background rates. RESULTS: The combined cohort had a median BL of 26 µg/dL, a mean first-year BL test of 1990 and was 96% male. Fifty per cent had more than one BL test (mean 7). Significant (p<0.05) positive trends, using the log of each worker's maximum BL, were found for lung cancer, chronic obstructive pulmonary disease (COPD), stroke and heart disease, while borderline significant trends (0.05≤p≤0.10) were found for bladder cancer, brain cancer and larynx cancer. Most results were consistent across all three cohorts. In external comparisons, we found significantly elevated SMRs for those with BLs>40 µg/dL; for bladder, lung and larynx cancer; and for COPD. In a small subsample of the US cohort (n=115) who were interviewed, we found no association between smoking and BL. CONCLUSIONS: We found strong positive mortality trends, with increasing BL level, for several outcomes in internal analysis. Many of these outcomes are associated with smoking, for which we had no data. A borderline trend was found for brain cancer, not associated with smoking.
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Neoplasias Laríngeas/mortalidade , Chumbo/efeitos adversos , Neoplasias Pulmonares/mortalidade , Doenças Profissionais/mortalidade , Exposição Ocupacional/efeitos adversos , Doença Pulmonar Obstrutiva Crônica/mortalidade , Neoplasias da Bexiga Urinária/mortalidade , Idoso , Neoplasias Encefálicas/sangue , Neoplasias Encefálicas/etiologia , Neoplasias Encefálicas/mortalidade , Causas de Morte , Estudos de Coortes , Feminino , Finlândia , Humanos , Neoplasias Laríngeas/sangue , Neoplasias Laríngeas/etiologia , Chumbo/sangue , Neoplasias Pulmonares/sangue , Neoplasias Pulmonares/etiologia , Masculino , Pessoa de Meia-Idade , Doenças Profissionais/sangue , Doenças Profissionais/etiologia , Doença Pulmonar Obstrutiva Crônica/sangue , Doença Pulmonar Obstrutiva Crônica/etiologia , Fumar/sangue , Reino Unido , Estados Unidos , Neoplasias da Bexiga Urinária/sangue , Neoplasias da Bexiga Urinária/etiologiaRESUMO
BACKGROUND: The Patient Reported Outcomes Measurement Information System (PROMIS®) has developed pediatric self-report scales measuring several unidimensional health attributes (domains) suitable for use in clinical research, but these measures have not yet been validated in sickle cell disease (SCD). PROCEDURE: A convenience sample of SCD children, aged 8-17 years, from two sickle cell programs was recruited at routine clinic visits, including some for hydroxyurea monitoring or monthly transfusions. Children completed PROMIS pediatric items using an online data collection platform, the PROMIS Assessment Center Web site. RESULTS: A total of 235 participants (mean age 12.5 ± 2.8 years, 49.8% female) participated in the study. Adolescents (ages 12-17 years) reported significantly higher pain interference and depressive symptoms, and worse lower extremity physical functioning domain scores compared to younger children (ages 8-11 years). Female participants reported significantly higher pain interference, fatigue, and depressive symptoms, and worse lower extremity physical functioning domain scores compared with their male counterparts. Participants with hip or joint problems that limited usual activities reported significantly higher pain, fatigue, and depressive symptoms scores, and worse upper/lower extremity physical functioning scores as did participants who had experienced sickle pain in the previous 7 days. CONCLUSIONS: PROMIS pediatric measures are feasible in a research setting and identify expected differences in known group comparisons in a sample of SCD children. The large domain score differences between those with or without SCD-related complications suggest the potential usefulness of these measures in clinical research, but further validation studies are needed, particularly in clinical practice settings.
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Anemia Falciforme/complicações , Avaliação de Resultados da Assistência ao Paciente , Qualidade de Vida , Autorrelato , Adolescente , Criança , Feminino , Humanos , Masculino , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The Patient-Reported Outcomes Measurement Information System(®) (PROMIS(®) ) created pediatric self-report scales measuring a variety of health attributes (domains), but their responsiveness to changes in health status has not yet been determined in children with sickle cell disease (SCD). PROCEDURE: A convenience cohort of symptomatic SCD children, aged 8-17 years, was asked to complete PROMIS pediatric scales at an initial clinic visit, at the end of a subsequent hospitalization for sickle pain, at a subsequent clinic visit or at home 2-3 weeks after hospitalization, and at a clinic visit 1-2 years after their initial assessment. RESULTS: A total of 121 participants (mean age 12.5 ± 3.1 years, 56.2% female) participated in the study. Pain interference and fatigue domain scores were elevated at baseline, increased substantially during hospitalization, and largely returned to baseline by the recovery period, whereas the depressive symptoms, anger, and anxiety domain scores displayed a less pronounced elevation during hospitalizations and a slower return to baseline levels. The two physical functioning scales showed a substantial decline in response to hospitalization, but only modest improvements at the recovery assessment, likely representing incomplete recovery. CONCLUSIONS: Several PROMIS pediatric measures were responsive to changes in health status associated with occurrence and resolution of acute vaso-occlusive pain requiring hospitalization. The substantial differences in these domains during SCD-related pain exacerbations support their potential usefulness in clinical research or in clinical practice. Further studies to characterize variations in symptom patterns over time may provide insights into strategies for more effective management of sickle pain.
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Anemia Falciforme/complicações , Nível de Saúde , Dor/etiologia , Avaliação de Resultados da Assistência ao Paciente , Autorrelato , Adolescente , Criança , Feminino , Hospitalização , Humanos , Masculino , Dor/epidemiologia , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
AIM: Chronic liver disease (CLD) is a leading cause of death and is defined based on a specific set of underlying cause-of-death codes on death certificates. This conventional approach to measuring CLD mortality underestimates the true mortality burden because it does not consider certain CLD conditions like viral hepatitis and hepatocellular carcinoma. We measured how much the conventional CLD mortality case definition will underestimate CLD mortality and described the distribution of CLD etiologies in Connecticut. METHODS: We used 2004 Connecticut death certificates to estimate CLD mortality two ways. One way used the conventional definition and the other used an expanded definition that included more conditions suggestive of CLD. We compared the number of deaths identified using this expanded definition with the number identified using the conventional definition. Medical records were reviewed to confirm CLD deaths. RESULTS: Connecticut had 29 314 registered deaths in 2004. Of these, 282 (1.0%) were CLD deaths identified by the conventional CLD definition while 616 (2.1%) were CLD deaths defined by the expanded definition. Medical record review confirmed that most deaths identified by the expanded definition were CLD-related (550/616); this suggested a 15.8 deaths/100 000 population mortality rate. Among deaths for which hepatitis B, hepatitis C and alcoholic liver disease were identified during medical record review, only 8.6%, 45.4% and 36.5%, respectively, had that specific cause-of-death code cited on the death certificate. CONCLUSION: An expanded CLD mortality case definition that incorporates multiple causes of death and additional CLD-related conditions will better estimate CLD mortality.
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BACKGROUND: Perfluorooctanoic acid (PFOA) is a synthetic chemical ubiquitous in the serum of U.S. residents. It causes liver, testicular, and pancreatic tumors in rats. Human studies are sparse. OBJECTIVE: We examined cancer incidence in Mid-Ohio Valley residents exposed to PFOA in drinking water due to chemical plant emissions. METHODS: The cohort consisted of adult community residents who resided in contaminated water districts or worked at a local chemical plant. Most participated in a 2005-2006 baseline survey in which serum PFOA was measured. We interviewed the cohort in 2008-2011 to obtain further medical history. Retrospective yearly PFOA serum concentrations were estimated for each participant from 1952 through 2011. Self-reported cancers were validated through medical records and cancer registry review. We estimated the association between cancer and cumulative PFOA serum concentration using proportional hazards models. RESULTS: Participants (n = 32,254) reported 2,507 validated cancers (21 different cancer types). Estimated cumulative serum PFOA concentrations were positively associated with kidney and testicular cancer [hazard ratio (HR) = 1.10; 95% CI: 0.98, 1.24 and HR = 1.34; 95% CI: 1.00, 1.79, respectively, for 1-unit increases in ln-transformed serum PFOA]. Categorical analyses also indicated positive trends with increasing exposures for both cancers: for kidney cancer HRs for increasing exposure quartiles were 1.0, 1.23, 1.48, and 1.58 (linear trend test p = 0.18) and for testicular cancer, HRs were 1.0, 1.04, 1.91, 3.17 (linear trend test p = 0.04). CONCLUSIONS: PFOA exposure was associated with kidney and testicular cancer in this population. Because this is largely a survivor cohort, findings must be interpreted with caution, especially for highly fatal cancers such as pancreatic and lung cancer.
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Caprilatos/toxicidade , Indústria Química/estatística & dados numéricos , Exposição Ambiental/análise , Fluorocarbonos/toxicidade , Neoplasias/induzido quimicamente , Neoplasias/epidemiologia , Poluentes Químicos da Água/toxicidade , Adulto , Caprilatos/sangue , Estudos de Coortes , Fluorocarbonos/sangue , Humanos , Incidência , Modelos de Riscos Proporcionais , Poluentes Químicos da Água/sangue , West Virginia/epidemiologiaRESUMO
BACKGROUND: The SenseWear™ Armband (SWA) (BodyMedia, Inc. Pittsburgh, PA) is a physical activity and lifestyle monitor that objectively and accurately measures free-living energy balance and sleep and includes software for self-monitoring of daily energy expenditure and energy intake. The real-time feedback of the SWA can improve individual self-monitoring and, therefore, enhance weight loss outcomes. METHODS: We recruited 197 sedentary overweight or obese adults (age, 46.8 ± 10.8 y; body mass index (BMI), 33.3 ± 5.2 kg/m(2); 81% women, 32% African-American) from the greater Columbia, South Carolina area. Participants were randomized into 1 of 4 groups, a self-directed weight loss program via an evidence-based weight loss manual (Standard Care, n = 50), a group-based behavioral weight loss program (GWL, n = 49), the armband alone (SWA-alone, n = 49), or the GWL plus the armband (GWL+SWA, n = 49), during the 9-month intervention. The primary outcome was change in body weight and waist circumference. A mixed-model repeated-measures analysis compared change in the intervention groups to the standard care group on weight and waist circumference status after adjusting for age, sex, race, education, energy expenditure, and recruitment wave. RESULTS: Body weight was available for 62% of participants at 9 months (52% standard care, 70% intervention). There was significant weight loss in all 3 intervention groups (GWL, 1.86 kg, P = 0.05; SWA-alone, 3.55 kg, P = 0.0002; GWL+SWA, 6.59 kg, P < 0.0001) but not in the Standard Care group (0.89 kg, P = 0.39) at month 9. Only the GWL+SWA group achieved significant weight loss at month 9 compared to the Standard Care group (P = 0.04). Significant waist circumference reductions were achieved in all 4 groups at month 9 (Standard Care, 3.49 cm, P = 0.0004; GWL, 2.42 cm, P = 0.008; SWA-alone, 3.59 cm, P < 0.0001; GWL+SWA, 6.77 cm, P < 0.0001), but no intervention group had significantly reduced waist circumference compared to the Standard Care group. CONCLUSIONS: Continuous self-monitoring from wearable technology with real-time feedback may be particularly useful to enhance lifestyle changes that promote weight loss in sedentary overweight or obese adults. This strategy, combined with a group-based behavioral intervention, may yield optimal weight loss.
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Dieta , Estilo de Vida , Atividade Motora , Obesidade/dietoterapia , Redução de Peso , Adulto , Negro ou Afro-Americano , Índice de Massa Corporal , Peso Corporal , Ingestão de Energia , Metabolismo Energético , Prática Clínica Baseada em Evidências/instrumentação , Prática Clínica Baseada em Evidências/métodos , Retroalimentação , Feminino , Seguimentos , Humanos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente , Autorrelato , Software , South Carolina , Circunferência da CinturaRESUMO
PURPOSE: To compare racial/ethnic differences and effects of HIV on body composition among antiretroviral (ART)-naïve HIV seropositive (HIV+) men to a representative sample of HIV seronegative (HIV-) men. We hypothesized that the effect of HIV infection will be uniform across all racial/ethnic groups. METHOD: A cross-sectional analysis was performed comparing HIV- (NHANES 1999-2002) and ART-naïve HIV+ men (CPCRA 061). Regional subcutaneous fat area was estimated by skinfold caliper. Total body fat (TBF), fat-free mass (FFM), and body fat index (BFI) were derived by Durnin-Womersley formula (TBF-DW, FFM-DW, BFI [TBF-DW/height(2)]). Bioelectric impedance analyses (BIA) was used to assess TBF-BIA, FFM-BIA, and body cell mass (BCM). Multivariate regression modeling adjusted for age, smoking, and hepatitis C for each measurement was performed. RESULTS: HIV+ men (n = 321) were older and more likely to be smokers than HIV- men (n = 1,996). The HIV- men were heavier in weight (+17.8 kg, p < .001) and had higher BMI (+4.3 kg/m(2), p < .001), BCM (+2.4 kg, p = .02), FFM (+5.9 kg, p < .001), TBF-DW (+5.95 kg, p < .001), BFI (+1.6 kg/m(2), p < .001), and regional fat mass than the HIV+ men. In the multivariate model, there were significant percentage differences between HIV- and HIV+ African American men for all body composition measurements (weight +15.3%; BMI +14.5%; BCM +5.2%; TBF-DW +15%; BFI 13.9%; FFM-DW 7.9%) and all circumference and skinfold measurements; all ps < .05. For Caucasian men, the following differences were significant between HIV- and HIV+: weight +14.4%; BMI +14.0%; BCM +6.0%; TBF-DW +17.7%; BFI 17.1%; FFM-DW 8.7%; and all circumference and skinfold measurements. Similarly, among Latino men the following differences were significant: weight +10.1%; BMI +12.3%; FFM-DW +7.7%; and arm, waist, and thigh circumferences and mid-arm skinfold fat area. The interaction terms for race/ethnicity were not significant across the three racial groups for weight, BMI, BCM, TBF-BIA, and BFI. CONCLUSION: Compared to HIV uninfected men, among HIV-infected ART-naïve men there was a significant effect of HIV infection itself on body composition among all racial/ethnic groups.