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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.

Individuals with spinal cord injury (SCI) have an increased risk of secondary conditions. In our study of 91 midwestern veterans with SCI, spasms were the most common secondary condition (70.3%) over 12 months and had the highest percentage of chronic frequency (93.8%). Other secondary conditions reported by at least 50% of participants were repetitive stress injury (51.6%) and fatigue (50.5%). When veterans reported secondary conditions, bowel problems and respiratory infections ranked highest for their interference with important activities. Prevention of secondary conditions is important to participation, which conforms to the new international classification of functioning and disability (ICIDH-2) model.

Objective: To present preliminary data on the health-related consequences for people with spinal cord injury (SCI) of participation in a prepaid, risk-based, managed care plan. Design: Baseline data from a longitudinal interview survey. Setting: Massachusetts. Participants: Subjects were 114 independently living adults with SCI recruited from 6 independent living centers and 2 managed care plans; 45 received care from a risk-based prepaid managed care plan and 69 from other sources. Main Outcomes: Self-reports of use of health services; self-assessments of health, health at interview versus 12 months earlier; hospital admissions; numbers of secondary conditions, and experiences of specific secondary conditions (eg, pressure ulcers, depression, fatigue, and chronic pain). Results: Persons in the managed care plan do not differ from their counterparts in terms of age, gender, education, level of SCI, number of comorbid conditions, activity of daily living profiles, household composition, and reliance upon health maintenance programs and routines (eg, bowel and bladder care). In terms of processes of care, they appear generally better-served. There also are a few differences in outcome that are statistically significant, or approach significance, and generally favor the managed care plan. Conclusion: Preliminary data suggest that thoughtfully and sensitively designed and implemented risk-based managed care may improve both access and outcomes.

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.

Disability and dependency are universal problems that every society has made at least some effort to resolve. Traditionally, we have studied these efforts in terms of national or state policies and programs, or individual ethnic, national, or religious groups' treatments of the aged, dependent, or chronically ill. As less-developed countries' populations age, they, too, will bear an increasing burden of chronic illness and disability. As this happens, they will compete with industrial countries for the human resources to meet these needs. This paper is an effort to describe disability, dependency, and disability relief as global problems, the expressions of which in one country are closely, perhaps inextricably, related to their expressions in other countries and which invite supranational solutions.

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.

This study compares police officers' reported alcohol use with similar reports from age- and gender-matched samples from the general driving population (GDP) and drivers recruited at high-risk hours who are most likely to drink and drive (roadside drivers).Data were derived from interviews with 239 police officers who spent at least 5% of their time on alcohol or traffic enforcement; 243 subjects from the GDP, selected by random-digit dialing; and 249 drivers recruited at roadside on Friday and Saturday nights between 10:00 PM and 3:00 AM.Officers report drinking less frequently and in smaller quantities than either of the driver samples. Differences between police and general drivers are modest: e.g., usual frequency of drinking (1 to3 vs 3 or 4 times/month; por = .001) and number of days/average month withor = 2 drinks/day (mean = 2.5 [+/- 3.4] vs 4.9 [+/- 6.5]; por = .001). There are greater differences between police officers and roadside drivers: e.g., 14.2% and 2.4%, respectively, abstain (vs 15.6% of general drivers; police vs general drivers; NS; police and general drivers vs roadside drivers, por = .001).The data suggest that officers' drinking differs significantly from that of drivers most likely to be driving under the influence of alcohol (DUI). If this is so, police training programs pertaining to DUI and other alcohol-related offenses should pay explicit attention to the effects of alcohol and not assume that all officers have experienced them.

Basing himself on Arab and European historical sources, Allan Meyers, who teaches in the School of Public Health at Boston University, explores the issue raised in the previous chapter, the position of Jews under Muslim rule, focusing on pre-colonial Morocco. In that context, Meyers argues, different relationships obtained in different parts of the country. The crucial factors were the degree of power which local potentates and the central government wielded respectively. Communal protection obtained where the government was strong, and individual patrol—client relationships were forged where local strongmen ruled.

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.

A prospective study of 87 independently living adults with spinal cord injury (SCI) as a major disabling condition showed the following average annual health care utilization rates: 1.3 hospital admissions, 16.8 days hospitalized, 1.7 emergency room (ER) visits, and 22.4 outpatient contacts (in person or by telephone). Those hospitalized (n = 66) experienced a mean of 22.2 days hospitalized per person per year. Mean length of stay (LOS) was 11.1 days per admission. Stepwise regression analysis indicated no statistically significant (p less than or equal to .05) predictors of hospital admissions. There were three independent predictors of days hospitalized (greater age, fewer years of education, and more days hospitalized during the previous year), three predictors of days hospitalized for those hospitalized only (greater age, fewer years of education, and longer hospital LOS during the previous year), one predictor of LOS (self-assessment of health), three of emergency room (ER) visits (more unmet instrumental activities of daily living needs, lack of organizational memberships, and more ER visits during the previous year), and five predictors of outpatient contacts (greater age, less satisfaction with health care providers' expressions of concern for their health, lower frequency of leaving apartments, lower levels of life satisfaction, and nonparticipation in a managed medical care demonstration project). Many predictors of health services utilization are immutable. However, changes which facilitate social interaction and changes in the organization of health services may reduce certain types of medical care utilization by people with SCI.

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.

The incidence of and reasons for inappropriate use of hospital emergency rooms are discussed. Among the approaches considered for decreasing non-emergency use of emergency rooms are educating the public as to proper use, redesigning emergency facilities to accommodate non-emergency patients, instituting hospital-based group practices, and educating health care providers as to the reasons patients seek emergency care.

This study examined police discretionary behavior in stopping and arresting drivers suspected of drunken driving in the state of Maine (U.S.A.). A sample of 186 officers was questioned at the beginning and end of a one-year period with respect to their attitudes toward OUI (Operating Under the Influence of Alcohol) law enforcement and their discretionary behavior in regard to OUI. Significant minorities of police officers reported that they made decisions either not to apprehend (thirty-three percent) or not to arrest (forty-one percent) OUI suspects in the study year. Officers who reported discretionary decisions not to apprehend or arrest generally did so infrequently—i.e. five percent of possible apprehensions and ten percent of possible arrests. Type of police department was significantly associated with decisions not to stop OUI suspects: officers in large departments ( ≥ 20 officers) reported more discretion. Officers with longer service careers, administration responsibilities, high personal priorities on OUI enforcement, and favorable opinions of the climate of OUI enforcement were less likely not to arrest OUI suspects.

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.

There is substantial evidence of the permanent disabling effects of such conditions as spinal cord and head injuries, cerebral palsy, paralytic polio, and such degenerative neurologic conditions as multiple sclerosis and muscular dystrophy.1 There is also considerable evidence that people with these conditions require extraordinary amounts of acute hospital care.1-7 However, there are few data on temporary morbidity or disability among those with major disabling conditions, particularly those who live independently in the community rather than in institutions.

On April 16, 1979, Massachusetts raised its legal drinking age from 18 to 20 years. Massachusetts was compared with New York State, exclusive of New York City and Nassau County. New York State retained an 18-year-old drinking age. Random telephone surveys with approximately 1,000 16-19 year olds in each state were undertaken prior to the law's enactment and twice at yearly intervals after the law to assess the law's impact on teenage drinking, driving after drinking, and non-fatal accident involvement. Fatal crash data reported to the US Department of Transportation by each state from April 16, 1976-April 15, 1981 were also analyzed. After the law, although the modes of procuring alcohol changed. No significant changes were observed in Massachusetts relative to New York in the proportion of surveyed teenagers who reported that they drank or in the volume of their consumption. The proportion of teenagers who drove after drinking heavily (six or more drinks at one time) did not decline in Massachusetts relative to New York. However, the frequency that teenagers reported driving after any drinking declined significantly in Massachusetts. Frequency of teenage driving after marijuana use and non-fatal teenage accidents declined at comparable rates in both states. The numbers of teenage nighttime single vehicle fatal accidents declined more in Massachusetts than New York, in the 18-19 year age group. Overall fatal accident trends among 16-19 year olds in the two states were similar.

This article examines discretionary leniency in police enforcement of two laws against drinking and driving in the state of Maine: a criminal law against operating under the influence of alcohol (OUI; BAC ≥ .10) and a law making it an administrative offense for teenagers to drive with BACs ≥ .02. A telephone survey of 200 randomly selected police officers showed that in the year before the survey twenty-one percent reported decisions not to apprehend and forty-two percent not to arrest drivers suspected of OUI. Nine percent of officers reported decisions not to apprehend, thirty-five percent not to request BAC tests, and thirty-five percent not to cite teenaged drivers suspected of having BACs ≥ .02. Those who reported discretionary OUI decisions did so in a mean of nineteen percent of possible apprehensions and twenty-four percent of possible arrests. Those who reported .02 discretion did so in twenty-six percent of apprehensions, fifty-one percent of possible breath tests, and fifty-two percent of possible citations. Stepwise logistic regression analysis showed three predictors of decisions not to apprehend OUI suspects: beliefs that officers may have higher police priorities, that OUI jail sentences should be longer, and that OUI cases are difficult to prosecute. There were no predictors of decisions not to arrest. Officers who favored the .02 law were less likely to exercise discretionary leniency in .02 apprehensions, as were those who believed that OUI cases take too long to come to trial and those with longer police careers. Officers who felt that penalties were too severe were more likely to report discretionary decisions not to request breath tests, as were those with shorter service careers. Officers with shorter service careers reported more discretionary decisions not to cite, as did those who reported that penalties for teenaged OUI offenders are too severe.

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 prospective study of the medical care utilization experience of 205 severely-disabled independently-living adults in Eastern Massachusetts shows that there was a mean of 0.83 ± 1.26 hospital admissions, 9.9 ± 22.7 hospital days, 1.5 ± 2.31 emergency room (ER) visits, and 26.88 ± 44.4 outpatient contacts per person per year. Among those hospitalized, the mean experience was 16.2 ± 27.1 days per person per year; mean length-of-stay was 9.3 ± 14.7 days per admission. Regression analysis indicates that those with spinal cord injuries as major disabling conditions were significantly more likely to be hospitalized. So were those with lower self-assessments of health, higher levels of depressions, and more baseline ER visits. Self-assessment of health is a significant predictor of hospital days for the total cohort (including those with no admissions); so are age at onset of disability (greater age; higher risk), and bed disability days in the month before the baseline survey (more disability days; higher risk). Among those hospitalized, the total number of days hospitalized is significantly related to both age at onset of disability (later onset; more days) and baseline days hospitalized (greater number; more days). Lengths-of-stay are significantly related to two factors; age and age at onset of disability (in both cases, greater age associated with longer stays). Prior ER visits are a significant predictor of subsequent ER visits (more baseline; more subsequent); so are respondents' reported satisfaction with their participation in their medical care (lower reported satisfaction; more ER visits), organizational affiliations, and frequencies of contacts with friends or relatives. Higher levels of social interaction (.e. organizational affiliation and more frequent social contacts) were associated with more ER visits. Prior contacts with physicians, nurse-practitioners, or physician-assistants was the most powerful predictor of subsequent outpatient contacts (more baseline;,more subsequent). There were also significant relationships between subsequent contacts and respondents' assessments of their health relative to others with similar disabilities (relatively worse health; more contacts), age (greater age; more contacts), and baseline ER visits (more visits; more contacts).

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.

The role and responsibility of the practicing physician with respect to patients with alcoholism is fraught with medical, legal, and philosophical quandaries. When does a physician’s concern for the welfare of the patient become paternalistic at the expense of the patient’s autonomy? When, if ever, can physicians draw blood-alcohol levels (BALs) on a patient without his consent? Who should have access to patients’ records with regard to alcoholism? Does concern for the public’s safety ever override the commitment to patient confidentiality? How certain must a physician be of a diagnosis of alcoholism before taking action to protect the patient or the public? What are the limits, implications, and justifications for such actions? Who establishes the rules for the doctor-patient relationship, and what are the goals of that interaction?

We conducted an 18-month longitudinal evaluation of a model-managed medical care program for severely disabled, independently living adults. Regression analyses using an additive model (no interaction effects) suggest that persons in the study group did not have statistically significantly different utilization experiences than members of the comparison group. Regression analyses that include interaction effects suggest that, for certain segments of the cohort, the study group's utilization experience was significantly lower than that of members of the comparison group. Persons in the study group with higher baseline emergency room (ER) utilization had significantly fewer hospital admissions (P = 0.0055). The participants with better self-assessments of health experienced significantly fewer hospital days per person (P = 0.0075) and days per person hospitalized (P = 0.0056), and persons with organizational affiliations reported significantly fewer ER visits (P = 0.0264).

Data from an 18-month prospective study of 205 adults with major disabling conditions revealed that there is a positive but not statistically significant association (p greater than .10) between respondents' scores on a scale which measures both numbers and amounts of substances (alcohol, tobacco, and cannabis) used and bed disability days. There are also nonsignificant positive relationships between scale scores and five of six measures of utilization of medical care.

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.