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Public health researchers and practitioners have begun to recognize the dynamic nature of disability, promote the health of people with disabilities, and develop strategies to prevent secondary conditions among them. To understand the epidemiology of secondary conditions, the authors developed the Massachusetts Survey of Secondary Conditions, a longitudinal study of adults with major disabilities (n = 656) based on a conceptual framework linking disability, mediating factors, and health outcomes. This paper reports baseline data on the number of secondary conditions experienced by survey respondents. Respondents experienced a mean of 5.3 of 17 secondary conditions. More numerous secondary conditions were associated with fair or poor general health and number of days unable to do routine activities. Factors amenable to public health interventions included difficulty with weight and exercise maintenance, tobacco and marijuana use, and experiencing assault. Disability should be a focus in all public health research, policy, and programs.

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.

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.

A sample of 117 Massachusetts adults with predominately high-level spinal cord injuries (SCIs) report a mean of 6.5 (&#453.0) of 17 secondary conditions in the previous year. Hierarchical multiple regression based on a conceptual framework to examine possible contributing factors shows two independent predictors (P &#104 .05) of a greater number of secondary conditions: These predictors are more difficulty with instrumental activities of daily living (IADLs) and more difficulty with accessing medical care. In addition, three variables marginally predicted (P &#104 0.10) more secondary conditions: inadequate access to transportation, tobacco-smoking, and race (white). The findings highlight the importance of IADL difficulty and access to medical care in relation to secondary conditions among adults with SCI.

Boston's Community Medical Group (BCMG) was among the first primary care group practices to provide community-based continuous primary care to people with major disabling conditions, the first to rely on nurse-practitioners as primary care-givers, and one of the first to provide care on a prepaid capitated basis. With more than one thousand person-years' experience, BCMG has demonstrated that it is ethically and operationally feasible (1) to provide prepaid managed care to people with major disabling conditions; (2) to share financial risk for that care with providers; (3) to reinforce principles of independent living and consumer autonomy; (4) to assure high-quality clinical outcomes at reasonable costs.

The Commonwealth of Massachusetts has undertaken a major initiative in the development of comprehensive managed health care programs for two sets of high-risk older people: those who are frail and homebound and those who reside in nursing homes. This effort has been coordinated by the state's Department of Public Welfare (DPW; Medical Assistance [Medicaid] Program) and Executive Office of Elder Affairs, and expedited ba a set of Health Care Financy Administration (HCFA) waivers and by the state's revised Nurse Practice Act (MGS Chapter 56). Than act allows nurse-practioners and physician assistants expanded roles as primary providers in home care and nursing home settings. The managed care initiatives have supplemented other efforts (1) to coordinate health and social services for older people, (2) to provide as broad a range as possible of community-based services for older people, and (3) to enroll as many older adults as possible in Health Maintenance Organization (HMO) "Senior Plans" and other similar...

We undertook a month-long intensive pilot study of a sample of adult wheelchair-users in Boston, Massachusetts and Durham, North Carolina, USA. The study had four objectives; to: (1) measure experiences of reaching and failing to reach specific destinations; (2) measure encounters with environmental facilitators and barriers, including both those overcome and not overcome; (3) determine the frequencies of destinations, facilitators, and barriers, and (4) test for consistency between daily reports and retrospective reports. Full participation entailed baseline and exit telephone interviews, and 28 daily telephone contacts. Participants reported reaching a wide range of destinations, most notably, banks, stores and shops, friends' and relatives' homes and health professionals' offices. There was a smaller range of destinations that they could not reach, despite trying; most notably, religious buildings, friends' and relatives' homes and work-places. They encountered an array of barriers, some of which they were able to overcome and others they could not overcome. Reported barriers included personal, interpersonal, and environmental barriers. The 25 subjects completing the study reported a wide range of human, environmental, and technologic support. In general, the consistency among daily, baseline, and exit interviews was high. This study has both substantive and methodologic implications. It suggests that efforts to facilitate social participation by wheelchair-users should focus not only on the built environment, but also on interventions in personal assistance and assistive technology, health promotion and fitness, and programs that improve civility. Methodologically, the data suggest that it is possible to make reliable measures of environmental encounters without the administrative and respondent burden associated with daily interviews.

Andresen EM, Meyers AR. Health-related quality of life outcomes measures. Arch Phys Med Rehabil 2000;81 Suppl 2:S30-S45. 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. © 2000 by the American Congress of Rehabilitation Medicine

Context In a climate of growing concern about costs of health care, professional accountability, and the effectiveness and efficiency of treatment, neurologists should understand measures of health-related quality of life (HRQoL) and appreciate both their values and their limits. Objective To provide a critical review of current concepts in the measurement of HRQoL, with particular emphasis on those pertaining to neurologic conditions. Design A selective overview of measurement strategies and specific instruments. Setting Clinical and research settings. Participants Special attention to people with such conditions as multiple sclerosis and Parkinson disease. Main Outcome Measures The utility and relevance to neurologists of available measures of HRQoL. Results There are both generic and condition- or disease-specific measures of HRQoL. Though many measures do not elicit response or are even offensive to people with such conditions as multiple sclerosis and Parkinson disease, other measures pertain directly to their circumstances and needs. Conclusions Measures of HRQoL are both meaningful and relevant to neurologists. However, they must be refined—enabled—and used in combinations to address the clinical and existential realities of many neurologic conditions.

Historically, research and practice in physical disability have emphasized the destructive and disabling consequences of illness and injury. More recently, we have begun to measure outcomes related to health, satisfaction, and quality-of-life. There has been little systematic attention to the study of happiness, felicitude, but data show that even for many of the people with most notable impairment, levels of happiness are high. The quest for felicitude requires methodological changes and, more significantly, greater professional humility to appreciate that people with both physical and intellectual impairments are able to experience and articulate their own satisfaction, pleasure, and joy. Fortified with this unpretentiousness, we can find happiness and begin to incorporate it as an outcome of clinical and public health programs.

Data from a survey of 928 older Bostonians show that there is a negative correlation between age and alcohol consumption among older adults: i.e., “old-old” people-those who are seventy-five years old or older—are more likely to abstain and less likely to drink in any quantity than the “younger-old”—those aged sixty-seventy-five years old. Since the study collected only cross-sectional data, it is not clear whether there are developmental trends in alcohol consumption-that people drink less as they grow older—or whether there are cohort or generational effects. However, several retrospective data suggest that there are cohort or generational patterns of drinking behavior by older adults. Very old respondents, who now drink less than their younger counterparts, report consistently different patterns of life-long drinking habits; they report different parental drinking habits, and they have consistently different attitudes toward the effects of alcohol consumption upon health. The survey provides no insight into the nature of the historical factors which account for the differences in alcohol use. However, Prohibition, Repeal, and the Depression are likely to have played important roles.

This article emphasizes the complexity underlying the assessment of physical function. The concept of physical function is multidimensional; individuals or groups can be assessed; the assessments can be either preintervention measures or outcome measures. Six issues of measurement are discussed: verbal report versus behavior; self-reported versus proxy-reported information; capacity versus performance; assumptions in Activities of Daily Living and Instrumental Activities of Daily Living measurement; differences between items and instruments; and the search for a summary index. Specific instruments are reviewed.

A review of studies of managed medical care demonstration programs for high-risk populations shows that, though there have been many such programs, they appear to have limited effects. Programs have often been characterized by conceptual inconsistency, about the nature of managed care, and limited goals, related mostly to cost savings. Program evaluations have often been methodologically weak. Insofar as the managed care programs have affected costs, medical care utilization patterns, or quality, the effects have been limited to subsets of the high-risk populations studied. Though managed care programs may have the same kinds of benefits for high-risk populations as they do for general working populations, they also entail substantial risk. Inferences from general to high-risk populations should be made cautiously and demonstration programs should be implemented only with careful attention to ethical, legal, and medical concerns.

A sample survey of 928 Bostonians, aged sixty years or older, indicates that there are low levels of alcohol consumption: more than half report that they are abstainers; 6 percent indicate that they have two or more drinks daily. Levels of abstinence are particularly high among women, blacks, Jews, widows and widowers, the foreign-born, those with low levels of formal education, and those aged seventy-five years or older. Among social psychological variables, locus of control is most consistently associated with drinking: those who report little influence upon their futures—in terms of work, marriage, income, and leisure activities—are more likely to abstain. There is also an association with optimisim; those who are least optimistic about their prospects for work and leisure activities are most likely to abstain. Analysis of variance shows that gender, education, ethnicity, religion, age, and locus of control regarding work are independent correlates of alcohol use. The data suggest that older people drink mainly in social contexts and to facilitate social interaction.

A study of the drinking behavior of 928 noninstitutional residents of Boston, aged 60 or older, showed that 53 per cent were abstainers; 26 per cent had less than one drink per day; 16 per cent, one to two drinks; and 6 per cent, two or more drinks. Nine subjects (1 per cent) were self-reported problem drinkers, and another 31 (3 per cent) reported that drinking had diminished the quality of their lives. Problem drinkers and those with alcohol-related problems were likely to be young-old native-born men. They were less likely to be satisfied with their relationships with family members, spouses, and close friends. All problem drinkers had long-term drinking problems. Most had sought treatment, but only one was being treated at the time of the study. The data suggest that current theories do not adequately explain late-life problem drinking and that current initiatives do not adequately address the needs of the elderly population at large.