Examining modifiable health behaviors, body weight, and use of preventive health services among caregivers and non-caregivers aged 65 years and older in Hawaii, Kansas, and Washington using 2007 BRFSS.

OBJECTIVE: To examine the associations among health behaviors, healthy body weight, and use of preventive services of adults 65 years and older using the 2007 Behavioral Risk Factor Surveillance System (BRFSS) as a function of caregiving status. METHODS: Participants (N=6,138) residing in the states of Hawaii, Kansas, and Washington completed questions about caregiving. We examined if there were any associations among body weight--having a healthy weight (body mass index 18.5-24.9 kg/m2); modifiable health behaviors--not smoking, consuming < or = 1 alcoholic beverage per day, consuming at least five fruits or vegetables daily, participating in moderate-to-vigorous physical activity during the average week; and using preventive services--receiving an annual influenza immunization, and ever receiving a pneumococcal immunization. RESULTS: The two groups did not differ significantly on the modifiable health behaviors of fruit and vegetable consumption, smoking status, or alcohol consumption, or having a healthy weight. Caregivers were significantly more likely to meet physical activity recommendations than non-caregivers (54.1%, 42.0%, respectively, p < 0.001). No significant differences were found between caregivers and non-caregivers on receiving influenza and pneumococcal immunization. CONCLUSIONS: Older adults who are caregivers are more likely than other older adults to meet government recommendations for physical activity; however, they have similar patterns of engaging in other health behaviors, including health eating and use of preventive services.

Retest reliability of surveillance questions on health related quality of life.

STUDY OBJECTIVES: Health related quality of life (HRQoL) is an important surveillance measure for monitoring the health of populations, as proposed in the American public health plan, Healthy People 2010. The authors investigated the retest reliability of four HRQoL questions from the US Behavioral Risk Factor Surveillance System (BRFSS). DESIGN: Randomly sampled BRFSS respondents from the state of Missouri were re-contacted for a retest of the HRQoL questions. Reliability was estimated by kappa statistics for categorical questions and intraclass correlation coefficients for continuous questions. SETTING: Missouri, United States. PARTICIPANTS: 868 respondents were re-interviewed by telephone about two weeks after the initial interview (mean 13.5 days). Participants represented the adult, non-institutionalised population of Missouri: 59.1% women; mean age 49.5 years; 93.2% white race. MAIN RESULTS: Retest reliability was excellent (0.75 or higher) for Self-Reported Health and Healthy Days measures, and moderate (0.58 to 0.71) for other measures. Reliability was lower for older adults. Other demographic subgroups (for example, gender) showed no regular pattern of differing reliability and there was very little change in reliability by the time interval between the first and second interview. CONCLUSIONS: Retest reliability of the HRQoL Core is moderate to excellent. Scaling options will require future attention, as will research into appropriate metrics for what constitutes important population group differences and change in HRQoL.

The behavioral spectrum of tic disorders: a community-based study.

BACKGROUND: Tourette syndrome (TS) and related tic disorders are commonly associated with obsessive-compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD). It has been argued, however, that any observed association between TS and these and other psychopathologies may be due to ascertainment bias in that individuals with multiple problems are more likely to be referred for medical evaluation. METHODS: In order to overcome the potential confounding by ascertainment bias, the authors conducted a community-based study of school children using direct interviews to determine the prevalence of tic disorders and any comorbid psychopathology. A standard psychiatric interview and standardized rating scales were utilized to diagnose childhood behavioral disorders. RESULTS: Of the 1,596 children interviewed, 339 were identified as having tics. The following psychopathologies were found more commonly (p < 0.05) in the children with tics: OCD, ADHD, separation anxiety, overanxious disorder, simple phobia, social phobia, agoraphobia, mania, major depression, and oppositional defiant behavior. CONCLUSION: The behavioral spectrum of tic disorders includes OCD, other anxiety disorders, a mood disorder, and attention-deficit and disruptive behavior disorders.

Prevalence of tics in schoolchildren and association with placement in special education.

BACKGROUND: Based on the knowledge that Tourette's syndrome (TS) is associated with several clinical features that can impair school function and growing evidence that the disorder is much more common than previously thought, the authors hypothesized that TS and related tic disorders would be associated with school problems in the childhood population at large. METHODS: Direct, blinded (to educational placement) interviews of 1,596 schoolchildren in Monroe County, Rochester, NY, were conducted. RESULTS: Twenty-seven percent of 341 students classified as receiving special education (SpEd) had tics compared with 19.7% (p = 0.008) of 1,255 students in regular classroom programs (RegEd). The weighted prevalence estimates for tics were 23.4% in SpEd and 18.5% in RegEd. A higher percentage of students in SpEd (7.0%) met diagnostic criteria for TS than students in RegEd (3.8%; p = 0.01). CONCLUSIONS: Although possibly influenced by selection bias, our results indicate that tic disorders are common in children and are highly associated with school dysfunction. Tics may represent an identifiable sign of an underlying brain developmental disorder that contributes to academic difficulties.

Proxy reliability: health-related quality of life (HRQoL) measures for people with disability.

OBJECTIVES: Research and surveillance activities sometimes require that proxy respondents provide key exposure or outcome information, especially for studies of people with disability (PWD). In this study, we compared the health-related quality of life (HRQoL) responses of index PWD to proxies. METHODS: Subjects were selected from nursing home, other assisted living residences, and from several clinic samples of PWD. Each index identified one or more proxy respondents. Computer-assisted interviews used a random order of measures. Proxy reliability was measured by intraclass correlation (ICC) and kappa statistics. HRQoL measures tested included the surveillance questions of the Behavioral Risk Factor Surveillance System (BRFSS), basic and instrumental activities of daily living (ADLs and IADLs), medical outcomes study short-form 36 and 12 (SF-36 and SF-12). RESULTS: A total of 131 index-proxy sets were completed. In general, agreement and reliability of proxy responses to the PWD tended to be best for relatives, with friends lower, and health care proxies lowest. For example, the ICC for the physical functioning scale of the SF-36 was 0.68 for relatives, 0.51 for friends, and 0.40 for healthcare proxies. There was a tendency for proxies to overestimate impairment and underestimate HRQoL. This pattern was reversed for measures of pain, which proxies consistently underestimated. The pattern among instruments, proxy types, and HRQoL domains was complex, and individual measures vary from these general results. CONCLUSIONS: We suggest caution when using proxy respondents for HRQoL, especially those measuring more subjective domains.

Disability outcomes research: why this supplement, on this topic, at this time?

The objective of this supplement is to define disability outcomes research and to describe the issues facing this new discipline. Drawing on the scientific, English-language literature, this group of articles reviews and comments on the current methods and measures of disability outcomes research, with an eye on providing insights into future directions for disability outcomes research. The future includes expansion of the framework that defined disability and evolution of the methods for the research itself.

Criteria for assessing the tools of disability outcomes research.

To recommend instrument assessment criteria, deriving from psychometric textbooks and articles and disability and research experts, for reviewing and assessing surveys and questionnaires for disability outcomes research. Traditional criteria are recommended, including psychometric properties of validity, reliability, and sensitivity to change, as are newer statistical methods for assessing scaling properties, such as Rasch analysis. Special consideration is needed for generic instruments that may be poorly scaled for disability research. Pragmatic aspects of data collection, including acceptability and disability accommodation, also are recommended.

Health-related quality of life outcomes measures.

OBJECTIVE: To review critically the features of measures of generic health-related quality of life (HRQOL) for disability outcomes research. DATA SOURCES: A search of electronic databases, summary reviews, books, and government documents was performed. Comment and experiences from participants of a conference on outcomes research were also incorporated. STUDY SELECTION: English language literature from scientists from a broad range of disciplines and research settings, including medicine, nursing, social science, and public health, and health services research and practice. DATA EXTRACTION: A critical review of measures that have been or might be used to measure disability outcomes. DATA SYNTHESIS: Commonly used generic measures of HRQOL can be applied to disability outcomes research with some caveats. Three common tools are the Medical Outcomes Study Short-Form Health Survey (SF-36), Sickness Impact Profile (SIP), and Quality of Well-Being (QWB) scale. The SF-36 and SIP have been used with some success in research with people with disability. The QWB scale has been used less frequently. CONCLUSION: Most studies using generic HRQOL tools are of groups with specific impairments rather than heterogeneous groups of people with disability. None of the tools appears to measure HRQOL without some potential biases (eg, inappropriate wording) for people with disability, but more specific testing of these problems is needed. Also needed are studies to determine whether these tools can measure meaningful longitudinal changes.

Enabling our instruments: accommodation, universal design, and access to participation in research.

The objective of this article is to discuss problems related to full participation of people with disabilities in health services and health outcomes research. To show the problems and to suggest solutions, we offer examples from personal research experiences (ours and colleagues'), as well as from published literature, requirements of research agencies, web and news sources, and research participants' feedback. A combination of formal and informal processes can be used to enable future instruments and methods. There are ethical, legal, and methodologic imperatives for research participation enablement.

Depression measures in outcomes research.

OBJECTIVE: To review critically the measures used to screen for depression for disability outcomes research and to recommend measures and needed research. DATA SOURCES: Review of literature pertaining to the development, testing, and use of depression measures for outcomes research. STUDY SELECTION: English language literature from scientists from a broad range of disciplines and research settings, focusing mainly on the Brief Symptom Inventory and the Center for Epidemiology Study-Depression scale. DATA EXTRACTION: A literature review was completed through MEDLINE. Based on the review, instruments were selected according to their use among people with disability and the reliability and validity of the instrument. Two instruments were selected for a complete review, and 5 instruments were selected for a brief review. DATA SYNTHESIS: A critical review of measures that have been and may be used to measure depressive symptomatology among people with disability. CONCLUSIONS: Screening measures of depression are easy to administer and score. Almost all have low respondent burden and good face validity, thereby contributing to a high participation rate for most studies. Some problems exist with the application of these instruments to people with disability (ie, overlap of symptoms of depression and indicators of physical impairment).

A model of outcomes research: spinal cord injury.

OBJECTIVE: To use spinal cord injury (SCI) care and research as a paradigm to illustrate how the principles and practices of outcomes research have been and can be applied to the sequelae of a specific disability. DATA SOURCES: Review of data sources and literature pertaining to outcomes of SCI. STUDY SELECTION: English language literature, health status and health services research agencies, academic and governmental research, and surveillance settings. DATA EXTRACTION: A critical review of measures that have been and may be used to measure the outcomes of SCI. Special attention was paid to data sources; the need for methodologic accommodations: the research balance between generic and condition-specific methods; and the measurement outcomes that are highly relevant to people with SCIs. DATA SYNTHESIS: There is a substantial research record related to the natural history, rehabilitation, survival, and long-term social reintegration of people with SCI, but relatively less addressing widely used generic health outcomes. CONCLUSION: Contemporary outcomes research is relevant to people with SCI and those who provide treatment. One area of special attention is the occurrence of secondary conditions. To a large extent, SCI outcomes research can use conventional methods and generic instruments. There also is a need to modify research methods and to refine and apply some measures specific to people with SCI.

Reliability and validity of disability questions for US Census 2000.

OBJECTIVES: We investigated the validity and proxy reliability of 7 new disability questions from the 2000 US census ("Census 2000"). METHODS: A total of 131 people with disabilities and their proxies from St Louis, Mo, and Massachusetts were interviewed, and responses were compared for concordance. Responses also were compared with responses to questions from the Behavioral Risk Factor Surveillance System (BRFSS) and the Activities of Daily Living (ADL) instrument. RESULTS: Overall, proxies reported more impairment than did people with disabilities, and agreement was low (kappa = 0.24-0.55). Concordance was moderate between the census questions and their BRFSS and ADL counterparts. CONCLUSIONS: The Census 2000 questions may not provide an accurate profile of disability in America.

Disability and health status: ethnic differences among women in the United States.

STUDY OBJECTIVES: There are few data describing disability and health status for ethnic groups. The disablement process involves social influences, which may include minority status. Cross sectional data were examined to investigate the relation of ethnicity to disability. DESIGN: A stratified random digit dialled sample of women aged 40 and older. Disability and health status were measured as functional and activity limitations, work disability, and days of poor physical and mental health. SETTING: United States. PARTICIPANTS: Women interviewed by telephone included 774 white, 749 African-American, 660 Hispanic, and 739 Native American women. MAIN RESULTS: The prevalence of disability was higher among minority women when classified by general health status, and the need for personal care assistance. There was a striking excess of work disability: 3.5% of white women compared with 7.1% to 10.3% for minority women. The differences were reduced when adjusted for other risk factors and socioeconomic status. White and minority women reported more similar disability when it was defined by poor mental and physical health days. CONCLUSIONS: Disability is correlated with social and demographic characteristics as well as medical diagnoses. Ethnicity also is associated with disability and may be part of a social context for disablement. Future research should concentrate on the temporal sequence of disability. Consistent definitions of disability will facilitate this research.

Limitations of the SF-36 in a sample of nursing home residents.

OBJECTIVE: to assess test characteristics of the Medical Outcomes Study SF-36 (Short-Form 36) with residents of nursing homes. RESEARCH DESIGN: nursing home residents with 17 or more points on the Mini-Mental State Examination (MMSE) and > or = 3 months residence (128 of 552 screened) were selected randomly. Interviewers administered the SF-36 (repeated after 1 week), Geriatric Depression Scale and MMSE. We recorded activities of daily living and medication data from medical records. Data analysis included test-retest intraclass correlations, item completion, score distributions and SF-36 correlations with measures of physical and mental functioning. RESULTS: 97 nursing home residents (75.8%) consented. Test-retest intraclass correlation coefficients were good to excellent (range = 0.55 to 0.82). Convergent validity between SF-36 physical health scales and the activities of daily living index was modest (r range = -0.37 to -0.43). About 25% of residents scored zero (lowest score) on at least one SF-36 physical function measure. SF-36 mental health scales correlated strongly with the Geriatric Depression Scale (r range = -0.63 to -0.71) and modestly with bodily pain (r = -0.35). No SF-36 scales correlated strongly with the MMSE. CONCLUSION: only one in five nursing home residents met minimal participation criteria, suggesting limited utility of the SF-36 in nursing homes. Reliability and validity characteristics were fairly good. Skewed scores were noted for some SF-36 scales. The utility of the SF-36 may be limited to assessments of subjects with higher cognitive and physical functioning than typical nursing home residents. The SF-36 might benefit from modification for this setting, or by tests of proxy ratings.

Performance of health-related quality-of-life instruments in a spinal cord injured population.

OBJECTIVE: General health-related quality-of-life (HRQoL) surveys have not been well tested in populations with spinal cord injury (SCI). This study evaluated the performance of 5 such instruments. DESIGN: A cross-sectional survey with instruments administered in random order during computer-assisted interviews. SETTING: A midwestern US veteran SCI program. SUBJECTS: One hundred eighty-three veterans with SCI ranging in age from 21 to 81 yrs (mean = 50.5). MEASURES: The Behavioral Risk Factor Surveillance System (BRFSS) HRQoL modules, the Quality of Well-Being scale (QWB), the Medical Outcomes Study Short-Form 36 and Short-Form 12 (SF-36, SF-12), and instrumental activities of daily living (IADL). RESULTS: Construct validity was supported by scores from the QWB, IADL, and physical health measures of the BRFSS and SF-36 showing greater impairment for quadriplegia than paraplegia. Similar constructs on the SF-36 and BRFSS were more strongly correlated than between the IADL and QWB; eg, correlation between the SF-36 Vitality scale and the BRFSS "Days full of energy" question was r = .789 (p < .01), whereas correlation between the IADL and QWB was r = -.454 (p < .01). Longer surveys (SF-36, QWB) were rated lower in subject acceptability. CONCLUSIONS: These instruments have potential for research use among patients with SCI. More studies are needed to explore the best use of instruments with apparently different domains.

The Missouri Disability Epidemiology and Health Project.

INTRODUCTION: Estimates of disability in this country are as high as 20%. State health departments need to provide the core activities to deal with this public health problem including assessment, policy development, and assurance. A collaboration among academic institutions and the Missouri Department of Health (MDOH) is a model for providing this core. METHODS: A disability workgroup was established among bureaus of the MDOH and three universities. This group selected the disability domain of mobility impairments for initial work. Existing data from the Centers for Disease Control and Prevention's (CDC) Behavioral Risk Factor Surveillance System (BRFSS) in Missouri and data from the 1990 Census were analyzed. Dissemination of the findings involved community and consumer participation via an advisory group and a public health-sponsored conference on disability. In addition, new data collection efforts are underway using the BRFSS. Education and training activities include both public health students and public health practitioners in learning the content and methodology associated with disability epidemiology. RESULTS: Data analyses have identified rural geographic areas of the State with high levels of disability and a trend of increasing work disability since 1993. A selected key condition, arthritis, has been confirmed as having a high prevalence (28%) in Missouri. These data also demonstrate that there is a strong risk of limitations associated with arthritis [adjusted odds ratio (OR) 3.57; 95% confidence intervals 3.0, 4.2]. These results will be applied to program planning. CONCLUSIONS: The Missouri program is succeeding in providing both academic and public health practice partners with a productive experience that meets the needs of each.

Performance of a self-administered mailed version of the Quality of Well-Being (QWB-SA) questionnaire among older adults.

OBJECTIVES: The Quality of Well-Being questionnaire is a measure of health-related quality of life (HRQoL) that has several desirable properties. Its widespread use has been hindered because it is difficult to administer. To overcome this limitation, a new self-administered form has recently been developed. This study examined the feasibility of using the Quality of Well-Being-Self-Administered (QWB-SA) questionnaire in an older population. METHODS: The Quality of Well-Being-Self-Administered questionnaire was sent to 430 community-dwelling individuals aged 65 years and older who were randomly selected from primary care physicians' offices. Response patterns, scaling distributions, and the acceptability of the survey were examined for all respondents. The results of the QWB-SA questionnaire were compared to the Sickness Impact Profile (SIP) and the Medical Outcomes Study 36-item Short-Form Health Survey (SF-36) for those individuals who also had completed the latter two surveys approximately 10 months earlier and whose health had not changed substantially in the meantime. RESULTS: Three hundred and one older adults (70%) responded. The mean QWB-SA questionnaire score was 0.7035. The scores were not skewed, and there were no floor or ceiling effects. The mean time to complete the QWB-SA questionnaire was 14.2 minutes, which was significantly shorter than for the SIP (19.3 minutes) but significantly longer than for the SF-36 (12.5 minutes). Subjects rated their satisfaction with the QWB-SA questionnaire somewhat lower than for the SIP and similar to SF-36. Correlations between the QWB-SA questionnaire and the SIP and SF-36 were moderate and were generally stronger for measures of physical health than for other domains such as mental health. CONCLUSIONS: The self-administered QWB questionnaire was acceptable to older respondents, and it correlated with other measures of health-related quality of life. It can be considered as a candidate for some research applications among older adults.

Health-related quality of life. A guide for the health professional.

The importance of evaluating health care in terms of patients' quality of life has only recently been acknowledged in the context of outcomes research and the measurement of quality of care. As a health professional, trying to choose the appropriate health status or health-related quality of life (HRQOL) measure can be daunting, as one is faced with a bewildering array of choices. The purpose of this article is to describe the process by which professionals might make a choice about measures in outcomes research. The article includes examples and rationale for using generic or disease-specific HRQOL measures. In addition, examples are provided of HRQOL assessment in two adult chronic disease applications: asthma and congestive heart failure.

Selecting a generic measure of health-related quality of life for use among older adults. A comparison of candidate instruments.

Selecting an outcomes assessment instrument requires knowledge of their relative merits, especially head-to-head comparisons. The authors compare health-related quality-of-life (HRQOL) instruments among older adults for their psychometric properties and subject burden, specifically the Sickness Impact Profile (SIP) and Medical Outcomes Study Short-Form 36 (SF-36). Subjects were 282 of 373 eligible older adults (75.6% response) ranging in age from 65 to 96. SIP scores demonstrated a strong skew toward low (good health) scores with a mean of 11.1% (+/- SD 11.5) on the Total SIP index score. Similar components of the SIP and SF-36 were moderately to strongly correlated. The SIP suffered from a ceiling (good health) scaling effect, and the SF-36 scales also demonstrated some scaling extremes. These results demonstrate the relative scaling limits, especially the ceiling effect, of the SIP compared to the SF-36, and in general, the SF-36 is preferred for use among community-living older adults.

Test-retest performance of a mailed version of the Medical Outcomes Study 36-Item Short-Form Health Survey among older adults.

OBJECTIVES: This study reports the reliability, internal consistency, and response patterns for a mailed version of the Medical Outcomes Study 36-item Short-Form Health Survey (SF-36) among older adults. METHODS: The SF-36 surveys were mailed to patients living in the community aged 65 years and older who were enrolled in two primary care practice clinics. Comorbidity scores also were assigned to patients based on their diagnoses from computerized clinic encounter forms using Deyo et al's modification of the Charlson Index. Subjects repeated the SF-36 by mail after 1 months. RESULTS: Four-hundred twenty-two subjects were mailed surveys and 253 returned them (60.0%). Missing items further reduced the number of subjects with scores on all SF-36 scales. A total of 186 subjects completed both base-line and retest SF-36 surveys. Intraclass correlation coefficients generally were high and ranged from 0.648 to 0.868. Internal consistency of scales also was high (0.802 to 0.924). Mean SF-36 scale scores decreased significantly with increasing comorbidity levels. CONCLUSIONS: The SF-36 demonstrated good retest reliability and internal consistency among these older adults and also showed a strong relationship to an external measure of comorbidity/health status. Mailed surveys pose a problem of response among older adults, a problem not unique to the SF-36, and methods for increasing response are needed when personal interviews are not feasible.