Study of tuberculosis and AIDS stigma as barriers to tuberculosis treatment adherence using validated stigma scales.

BACKGROUND: Adherence to tuberculosis (TB) treatment is important for TB control. The effect of stigma on adherence has not been well quantified. OBJECTIVE: To identify the effects of TB and acquired immune-deficiency syndrome (AIDS) stigma on missed doses during TB treatment. DESIGN: Validated TB and AIDS stigma scales assessing perceived and experienced/felt stigma were administered in a prospective cohort of 459 TB patients at TB treatment initiation and after 2 months. Repeated measures and multivariable models estimated the effects of stigma on the rate of missed doses. RESULTS: Fifty-six per cent of patients missed no doses, and associations between stigma and missed doses were minimal. Heterogeneity of effects was observed, how- ever, with higher experienced and felt TB stigma increasing missed doses among women (adjusted RR 1.22, 95%CI 1.10-1.34) and human immunodeficiency virus (HIV) co-infected patients (aRR 1.39, 95%CI 1.13-1.72). Experienced and felt AIDS stigma also increased missed doses among HIV co-infected patients (aRR 1.43, 95%CI 1.31-1.56). CONCLUSION: Stigma has a minimal effect in this population with good adherence. Among women and HIV co-infected patients, however, experienced and felt stigma, and not perceived stigma, increased the rate of missed doses. Further research is needed to determine if stigma or coping interventions among these subgroups would improve adherence.

Tuberculosis and AIDS stigma among patients who delay seeking care for tuberculosis symptoms.

BACKGROUND: Delay in presentation to a health facility is an important concern for tuberculosis (TB) control. The effect of stigma on delay in seeking care for TB symptoms is not well studied, especially in the context of the human immunodeficiency virus (HIV) co-epidemic. OBJECTIVE: To estimate the association of TB and acquired immune-deficiency syndrome (AIDS) stigma on delay in seeking care for TB symptoms. METHODS: For 480 newly diagnosed patients with TB, time from first TB symptom to the first visit to a qualified provider was calculated. Stigma scales were administered to each patient to obtain a stigma score. RESULTS: Among men, those with higher TB stigma had a small increase in delay times, while women had a small decrease in delay. Among patients presenting with hemoptysis, higher TB stigma was associated with a small increase in delay, while among patients presenting with fever or extra-pulmonary symptoms only, higher TB and AIDS stigma resulted in shorter delay times. CONCLUSION: In a population with a relatively short median delay (26 days), the impact of TB and AIDS stigma translates into a minimal change in delay time. This suggests that stigma does not have a clinically relevant effect on TB patient delay in southern Thailand.

What is community? An evidence-based definition for participatory public health.

Increased emphasis on community collaboration indicates the need for consensus regarding the definition of community within public health. This study examined whether members of diverse US communities described community in similar ways. To identify strategies to support community collaboration in HIV vaccine trials, qualitative interviews were conducted with 25 African Americans in Durham, NC; 26 gay men in San Francisco, Calif; 25 injection drug users in Philadelphia, Pa; and 42 HIV vaccine researchers across the United States. Verbatim responses to the question "What does the word community mean to you?" were analyzed. Cluster analysis was used to identify similarities in the way community was described. A common definition of community emerged as a group of people with diverse characteristics who are linked by social ties, share common perspectives, and engage in joint action in geographical locations or settings. The participants differed in the emphasis they placed on particular elements of the definition. Community was defined similarly but experienced differently by people with diverse backgrounds. These results parallel similar social science findings and confirm the viability of a common definition for participatory public health.

The role of community advisory boards: involving communities in the informed consent process.

Ethical research involving human subjects mandates that individual informed consent be obtained from research participants or from surrogates when participants are not able to consent for themselves. The existing requirements for informed consent assume that all study participants have personal autonomy; fully comprehend the purpose, risks, and benefits of the research; and volunteer for projects that disclose all relevant information. Yet contemporary examples of lapses in the individual informed consent process have been reported. The authors propose the use of community advisory boards, which can facilitate research by providing advice about the informed consent process and the design and implementation of research protocols. These activities could help reduce the number of individual informed consent lapses, benefiting study participants and the scientific integrity of the research in question.

Developing a behavior rating scale for comparing teachers' ratings of children with and without craniofacial anomalies.

OBJECTIVE: Published psychometric tools are often insensitive to the experience of children with craniofacial anomalies (CFAs). The purposes of this study were to develop a valid and reliable assessment of behavior among children with and without CFAs and to compare teacher ratings of these two groups of children. METHODS: Teachers were asked prospectively to assess social competence and peer acceptance among 99 consecutively evaluated school-aged patients with CFAs and 99 "controls" (classmates without CFA matched by race, gender, intellectual status, general socioeconomic status, and grade). Sixth grade was the median grade of the subjects. OUTCOME MEASURE: Child Behavior Rating Scale (CBRS). RESULTS: Using oblique promax rotation, four factors emerged from the CBRS with the CFA patient group and controls. The factors explained 67% of the total variance and 69% of the variance of the two groups, respectively. The four factors were: (1) self-maintenance, (2) social adjustment, (3) independence, and (4) teasing. Cronbach alpha results averaged 0.77 for the CFA group and 0.83 for the controls; test-retest reliability estimates were .93. Results demonstrate the consistency of the factors and high level of interrelationship among the items across subject groups. Expected differences (p <.05) were found among subject groups on the total score and factor 4. CONCLUSIONS: The CBRS demonstrates psychometric worthiness. The findings indicated that patients with CFA had lower total scores on the CBRS, and they were rated as experiencing more teasing than their matched peers.

"Only skin deep": health, resilience, and craniofacial care.

The literature on psychological and social responses to cleft palate and craniofacial conditions focuses on the challenges and limitations posed by biological factors, cognitive status, and social stigma. In spite of the various challenges experienced by persons with these conditions, many individuals have rich and satisfying lives. This paper develops a theoretical perspective to elucidate factors that account for health, life success, and resiliency in persons with craniofacial conditions. Three steps are proposed to change how craniofacial conditions are envisioned by clinicians and researchers: (1) creating optimism and positivity around the time of birth and diagnosis, (2) asking children and parents new and different questions, and (3) launching a new craniofacial social science model for research built around understanding resilience and health.

Willingness to volunteer in future preventive HIV vaccine trials: issues and perspectives from three U.S. communities.

UNLABELLED: This study examined perceived risks, benefits, and desired information related to willingness to volunteer in preventive HIV vaccine trials. SAMPLE: Purposive sampling was used to select 90 participants among injecting drug users (Philadelphia, PA, U.S.A.); gay men (San Francisco, CA, U.S.A.); and black Americans (Durham, NC, U.S.A.). METHODS: A qualitative interview guide elicited perceived benefits, risks, and desired information relating to trial participation. Themes were developed from the transcribed texts and from freelists. RESULTS: Stated willingness to volunteer in a preventive HIV vaccine trial was similar across the three communities. Eight perceived benefits were reported, including self-benefits, altruism, and stopping the spread of AIDS. Seven perceived risks were reported, including negative side effects and vaccine safety issues, contracting HIV from the vaccine, and social stigmatization. Participants voiced the desire for eight types of information about issues relating to trust and confidentiality in the research process, health complications and later assistance, and vaccine trial methodology. CONCLUSIONS: In this study, many benefits as well as risks of preventive HIV vaccine trial participation were cited. Scientists conducting preventive HIV vaccine trials need to address community perceptions of risks and provide information about the research if trial enrollment is to be diverse and successful.

Factors affecting African-American participation in AIDS research.

BACKGROUND: Although African Americans are disproportionately affected by the AIDS epidemic, they are underrepresented in AIDS research, particularly in AIDS clinical trials. This study examines a multidimensional construct of distrust and other factors that may affect willingness to participate in AIDS research. METHODS: A total of 301 African Americans (aged >/=18 years) in Durham, North Carolina participated in a cross-sectional survey. In-person interviews, 20 to 25 minutes in length, were conducted with participants. Structural equation modeling was used to develop models exploring distrust and other factors affecting willingness to participate in AIDS research among African Americans. RESULTS: Distrust was the strongest inverse predictor of willingness to participate in AIDS clinical trials. Distrust was not significantly associated with willingness to participate in AIDS surveys and educational interventions. Altruism, facilitators/barriers, religiosity, and economic group membership were also significantly associated with willingness to participate in AIDS clinical trials. Only altruism was significantly associated with willingness to participate in AIDS surveys and educational interventions. CONCLUSIONS: Distrust about research institutions is a significant barrier to recruiting African Americans in AIDS clinical trials. Issues of distrust need to be acknowledged by researchers to develop better recruitment and retention strategies when conducting AIDS clinical trials in African-American communities.

Factors associated with periodontitis in an HIV-infected southeast USA study.

OBJECTIVES: To determine the relationship of immunosuppression with measures of probing pocket depth (PPD), recession (REC), and clinical attachment level (CAL) in an HIV-infected population from North Carolina (NC), a state in the southeastern United States (USA). DESIGN: Cross-sectional study of HIV-infected adults (n = 326) treated at the University of North Carolina Hospitals. Clinical medical record review and sociodemographic interview data were collected. Median age of study participants was 37 years (range 19-67). Males comprised 78% and Blacks 60%. Analyses were limited to those who were dentate (n = 316). MAIN OUTCOME MEASURES: Main outcomes were cases vs non-cases of notable PPD, REC, and CAL. Immunosuppression measured by CD4+ cell count microL was the exposure of interest. RESULTS: Defined cases of PPD (n = 148) were 2.6 (95% CI = 1.3, 5.3) times less likely to occur at CD4+ cells < 200 than non-cases, whereas, cases of REC (n = 94) were 2.8 (95% CI = 1.2, 6.6) times more likely to occur at that level of severe immunosuppression, controlling for confounders. CONCLUSION: Sub-groups of persons with HIV experience a high burden of periodontitis where notable severity and extent of PPD, CAL, and REC were clearly evident at different stages of immunosuppression.

Maternal cigarette smoking during pregnancy and risk of oral clefts in newborns.

The results of previous epidemiologic research on the possible association between maternal smoking during pregnancy and risk of oral clefts in offspring have been inconsistent. This may be due in part to methodological limitations, including imprecise measurement of tobacco use, failure to consider etiologic heterogeneity among types of oral clefts, and confounding. This analysis, based on a large case-control study, further evaluated the effect of first trimester maternal smoking on oral facial cleft risk by examining the dose-response relationship according to specific cleft type and according to whether or not additional malformations were present. A number of factors, including dietary and supplemental folate intake and family history of clefts, were evaluated as potential confounders and effect modifiers. Data on 3,774 mothers interviewed between 1976 and 1992 by the Slone Epidemiology Unit Birth Defects Study were used. Study subjects were actively ascertained from sites in areas around Boston, Massachusetts and Philadelphia, Pennsylvania; the state of Iowa; and southeastern Ontario, Canada. Cases were infants with isolated defects--cleft lip alone (n = 334), cleft lip and palate (n = 494), or cleft palate alone (n = 244)--and infants with clefts plus (+) additional malformations: cleft lip+ (n = 58), cleft lip and palate+ (n = 140), or cleft palate+ (n = 209). Controls were infants with defects other than clefts, excluding defects possibly associated with maternal cigarette use. There were no associations with maternal smoking for any oral cleft group, except for a positive dose response among infants with cleft lip and palate+ (for light smokers, odds ratio (OR) = 1.09 (95% confidence interval (CI): 0.6, 1.9); for moderate smokers, OR = 1.84 (95% CI: 1.2, 2.9); and for heavy smokers, OR = 1.85 (95% CI: 1.0, 3.5), relative to nonsmokers). This finding may be related to the additional malformations rather than to the cleft itself.

The organization and delivery of craniofacial health services: the state of the art.

The dominant organizational structure providing care for cleft palate and other craniofacial conditions is the health care team. Various types of health care team organization are profiled, including intradisciplinary, multidisciplinary, and interdisciplinary teams. Effective team-based care delivery has the ability to address the fragmentation and dehumanization that can result when a variety of specialists and disciplines are required to provide assessment and technical care. A team's leadership and its hierarchy of professional authority can be expected to affect its ability to function effectively. Health reform and managed care are considered for their impact on the team and on the doctor-patient relationship. Trends in team regionalization, quality assurance, outcomes research, and consumer advocacy are reviewed. The cleft palate and craniofacial team is profiled as an organizational model that is being affected by the forces of health system change.

Cleft palate and craniofacial teams in the United States and Canada: a national survey of team organization and standards of care. The American Cleft Palate-Craniofacial Association (ACPA) Team Standards Committee.

OBJECTIVE: This study is the first comprehensive national survey of the organization, function, and composition of cleft palate and craniofacial teams in the U.S. and Canada. Complete descriptions of cleft and craniofacial teams are not currently provided in the literature, and this study will provide an overview for health services research and policy use. Conducted by a national organization, this study examines teams in detail using a pretested and standardized methodology. DESIGN: All known (n = 296) North American cleft palate and craniofacial teams were contacted for team listing purposes using a self-assessment method developed by an interdisciplinary committee of national stature. Team clinical leaders classified their teams into several possible categories and provided data on team care. The response rate was 83.4% (n = 247). RESULTS: The distribution of listed teams was: 105 (42.5%) cleft palate teams, 102 (41.3%) craniofacial teams (including craniofacial teams that are both cleft palate and craniofacial teams), 12 (4.9%) geographically listed teams, and 28 (11.3%) other teams (including interim cleft palate teams, low-density cleft palate teams, and evaluation and treatment review cleft palate teams). Eighty-five percent of all teams systematically collected and stored clinical data on their team's patient population in the past year. Furthermore, 50% of all teams had a quality assurance program in place to measure treatment outcomes. Other findings presented include the annual number of face-to-face team meetings; new and follow-up patient censuses; and surgical rates for initial repair of cleft lip/palate, orthognathic/osteotomy procedures, and intracranial/craniofacial procedures. CONCLUSIONS: Two of five North American teams classify themselves as having the capacity to provide both cleft palate and craniofacial care. An additional two of five teams limit their primary role to cleft palate care. Issues are raised regarding the distribution of teams, the regionalization of craniofacial services, health policy, and resource allocation.

Conference summary: assessing oral health outcomes--measuring health status and quality of life.

OBJECTIVE: This paper summarises proceedings of a conference that aimed to evaluate existing measures of oral health related quality of life and to recommend new directions for their use in oral health outcomes research. METHOD: A two day conference was held in Chapel Hill, North Carolina, USA, in June 1996. Background papers, poster-discussion sessions, small group discussions and reactor papers were used to analyse 11 oral health related quality of life instruments and to evaluate their potential for use in health outcomes research. RESULTS: Speakers emphasised the need to include quality of life in multidimensional assessments of oral health outcomes. Existing instruments capture numerous quality of life dimensions using a variety of question- and response-formats. The instruments have been used primarily in cross-sectional, observational studies rather than longitudinal, intervention studies that evaluate health outcomes. There is little experience from their use in long-term follow-up studies and with some special population sub-groups. Recommendations for further research are presented in papers that follow this summary paper. CONCLUSIONS: There has been substantial development and use of quality of life measures in oral health surveys, and there is an immediate need for further research that modifies and uses those instruments in oral health outcomes research.

Oral manifestations of HIV in a southeast USA population.

OBJECTIVES: Examine variations in oral manifestations of HIV by gender, race, risk behaviors, substance use and immune status in a previously unstudied population in the southeast region of the USA. DESIGN: Cross-sectional analytic study. SETTING: Academic medical center, North Carolina, USA. SUBJECTS: First 238 HIV-infected adults (76% male; 59% Black) enrolled in an ongoing longitudinal study. METHODS: Oral examination, medical chart review, sociodemographic and behavioral interview. Descriptive, bivariate, and multivariable analyses. OUTCOMES: Presence of oral manifestations of HIV. RESULTS: 50% had recent CD4 counts < 200 cells microliters-1, 48% had one or more oral lesion. Specific lesion prevalence: hairy leukoplakia (OHL) 26.5%; candidiasis (OC) 20%; HIV-associated periodontal diseases (HIV-PD) 8.8%; aphthae 4.2%; papillomas 2.5%; herpes simplex 2.1%; HIV salivary gland disease 2.1%; Kaposi's sarcoma (KS) 1.7%; other 1.3%. In bivariate analyses, OHL was associated with being male, White, having a CD4 < 200, and men who have sex with men (MSM); OC was associated with CD4 < 200 and current smoking; HIV-PD was associated with consumption of more than seven alcohol-containing drinks per week; KS was associated with being male and MSM. Significant variables in multivariable analysis for presence of any oral lesion were White, CD4 < 200, and more than seven drinks/week; for OHL were male and CD4 < 200; and for OC were White, CD4 < 200, current smoking, and not MSM. CONCLUSIONS: MSM were at increased risk for KS and OHL, not OC, while smokers were at increased risk of OC. OC, OHL, and any oral lesion were associated with immune suppression. OHL was more likely in males independent of CD4 count.

Children as income-producing assets: the case of teen illegitimacy and government transfers.

This paper develops a classical model of the teen fertility decision in the presence of public income transfers. The theoretical model predicts that welfare payments will encourage fertility, holding constant other economic opportunities, and that better economic opportunities will discourage fertility. Considering the possible simultaneity of illegitimacy rates and benefit levels, due to the collective choice process, the authors confirm the theoretical model's predictions with state-level data from 1980 through 1990. The authors find that including fixed effects in the regression to control for unobserved differences between states does not sufficiently control for endogeneity. After controlling for endogeneity, real welfare benefits are strongly and robustly related to teen illegitimacy. The point estimates of the elasticity with respect to changes in the illegitimacy rate are around +1.3 for White teens and +2.1 for Black teens. Real wages for women with a high school education or less are negatively related to teen illegitimacy for White teens, with an elasticity of around -0.4. Finally, male wages appear to have little effect on the illegitimacy rate for White teens but appear negatively correlated with the illegitimacy rate for Black teens in some model specifications.

Prevalence of HIV-associated periodontitis and chronic periodontitis in a southeastern US study group.

OBJECTIVES: This study estimates factors associated with the prevalence of HIV-associated periodontal diseases (HIV-P) and the severity and extent of periodontitis in HIV-infected adults from North Carolina (NC). METHODS: Data are derived from a cross-sectional study of HIV-infected adults (total n = 326, dentate n = 316) treated at the University of North Carolina Hospitals. Outcomes were a diagnosis of HIV-P and measures of probing pocket depth (PPD), recession (REC), and clinical attachment level (CAL). Immunosuppression was measured by peripheral blood CD4+ cells/mm3. RESULTS: In addition to persons with HIV (non-AIDS), this study included 10 percent of the AIDS cases in North Carolina. Median age was 37 years (range = 19-67); 78 percent were male and 60 percent were black. Sixty-two percent of persons had a probing pocket depth > or = 5 mm; 46% had recession > or = 3 mm, and 66 percent had attachment level > or = 5 mm in one or more sites. Cases of HIV-P (n = 15) were rare. Persons taking HIV-antiretroviral medication were one-fifth (OR = 0.20; 95% CI = 0.07, 0.63) as likely to have HIV-P as those not taking those medications, controlling for CD4+ cell counts. CONCLUSIONS: HIV-infected persons in this study group from North Carolina exhibited severe and extensive measures of adult periodontitis. A small proportion experienced a severe form of HIV-P, which was attenuated by antiretroviral therapy.

Assessing dental anxiety, dental care use and oral status in older adults.

This study examined associations between dental anxiety and dental care use and oral health status in dentate older adults. Analysis of data from the Piedmont 65+ Dental Study revealed that aspects of dental care use and oral health status were independently associated with high dental anxiety. These results suggest that measures to control dental anxiety may help to improve dental care use and oral health status in older adults.

Culture, dental professionals and oral health values in multicultural societies: measuring cultural factors in geriatric oral health research and education.

Culture has significant impacts upon professional practice and patient health behaviours, especially in multicultural societies. This paper introduces the concept of culture and examines how it may be of importance to dental health professionals. Using the Dental Impact Profile and other dental social science measures, dental researchers and students can be engaged in studying cultural values and characteristics as a way of dealing with cultural differences.