Measuring activity limitation outcomes in youth with spinal cord injury.

STUDY DESIGN: A cross-sectional study. OBJECTIVES: The Pediatric Spinal Cord Injury Activity Measure (PEDI-SCI AM), which includes calibrated item banks (child and parent versions) for general mobility, daily routines, wheeled mobility and ambulation, can be administered using computerized adaptive tests (CATs) or short forms (SFs). The study objectives are as follows: (1) to examine the psychometric properties of the PEDI-SCI AM item banks and 10-item CATs; and (2) to develop and evaluate the psychometric properties of PEDI-SCI AM SFs. SETTING: US Shriners Hospitals for Children (California, Illinois and Pennsylvania). METHODS: Calibration data from a convenience sample of 381 children and adolescents with SCI and 322 parents or caregivers were used to examine PEDI-SCI AM item banks, 10-item CATs and SF scores. We calculated group reliability, internal consistency (Cronbach's alpha) and interclass coefficients (ICCs) to assess agreement between 10-item CATs, SFs and item banks. The percent of the sample with highest (ceiling) and lowest (floor) scores was also determined. An expert panel selected items for 14 SFs. RESULTS: PEDI-SCI item banks, 10-item CATs and SFs demonstrate acceptable group reliability (0.73-0.96) and internal consistency (0.77-0.98). ICC values show strong agreement with item banks for 10-item CATs (0.72-0.99) and SFs. Floor effects are minimal (<15%). Ceiling effects are minimal for children with tetraplegia but high in children with paraplegia for general mobility (13.41-26.05%) and daily activities (12.99-32.71%). CONCLUSIONS: The PEDI-SCI AM exhibited strong psychometric properties for children with tetraplegia. Replenishment of the general mobility and daily routine item banks is needed to reduce ceiling effects noted for youth with paraplegia.

The Pediatric Measure of Participation (PMoP) short forms.

STUDY DESIGN: Multi-center cross-sectional cohort study. OBJECTIVES: The objectives of this study were to develop and validate short forms (SFs) of participation for child- and parent-reported outcomes following spinal cord injury (SCI). SETTING: Three pediatric orthopedic hospitals in the United States. METHODS: The expert panel used calibration data from the pediatric computerized adaptive test (CAT) development study (convenience sample of 381 children and adolescents with SCI and 322 parents or caregivers) to select SF items. The panel selected items for two domains (participation self-relevant to what I want to do; participation friends-relevant to what my friends do), with parent and child versions for each domain. Psychometric analyses included group reliability, Cronbach's alpha, agreement (SFs and item banks), percent of sample with highest (ceiling) and lowest (floor) scores by level of lesion (paraplegia/tetraplegia), and test information function. RESULTS: Group reliability and Cronbach's alpha values are acceptable (0.74-0.92) and agreement (intraclass correlation coefficients for SFs and total item banks) is strong (0.89-0.95). Floor effects were minimal for people with tetraplegia and paraplegia (0-1.19%). Ceiling effects were minimal for people with tetraplegia (0-3.13%) and slightly higher, but acceptable, for people with paraplegia (8.06-14.02%). Test information function for the SFs was sufficiently high over the range of scores for the majority of the sample. CONCLUSION: Pediatric Measure of Participation (PMoP) SFs are acceptable for use when CATs are not feasible. SPONSORSHIP: The study was funded by the Shriners Hospitals for Children Research Grant 79142 (Mulcahey, PI) and the Boston ROC Grant 5R24HD065688-05 (Jette, PI).

Developing a contemporary functional outcome measure for spinal cord injury research.

STUDY DESIGN: This study used qualitative analysis of focus group discussions. OBJECTIVE: The primary objective was to select functional activities to include in an item pool, which is the first step in developing a spinal cord injury computer adaptive test (SCI-CAT). SETTING: This multisite study was conducted at six US National Spinal Cord Injury Model Systems Programs. METHODS: Focus group discussions, which included persons with tetraplegia and paraplegia and clinicians, were conducted. Transcripts were analyzed using a grounded theory approach. Functional activities were identified, binned, winnowed, written as functional items, and cognitively tested. RESULTS: Focus group discussion analysis identified 326 functional activity items that fit into categories outlined in the International Classification of Functioning, Disability and Health (ICF) framework: Mobility (193 items), including assessment of functioning in a manual (44 items) and power wheelchair (19 items); self-care (109 items); and communication (19 items). Items related to sexual function were also identified (5 items). CONCLUSION: The SCI-CAT item pool includes items that assess functional activities important to persons with SCI. Items cover a wide range of functional ability and reflect most ICF categories. The SCI-CAT pool is currently being field tested to develop a calibrated item bank. Further development will yield a CAT of functional activities appropriate for SCI research.

Cardiac disability. The impact of coronary heart disease on patients' daily activities.

We studied 100 men with clinically stable coronary heart disease. Their capacity for exertion as defined by treadmill test was compared with the physical and social avocational activities they carried out in their daily routine, as reported by them. Exercise capacity (treadmill time) was strongly correlated with a physician's independent assessment of symptomatic status (anginal history). Although participation in some relatively strenuous elective activities was related slightly to exercise capacity, participation in many household duties and social undertakings bore no relationship to exercise capacity or to other measures of the severity of the underlying heart disease. The patients' own perceptions of their cardiac limitation varied for different activities and for some activities it was determined as much by their own concern and outside advice as by cardiac symptoms. Decreased capacity for exertion seems to exert surprisingly little influence on a cardiac patient's daily routine and interventions aimed at altering one of these measures of performance will not necessarily affect the other.

The Framingham Disability Study: physical disability among community-dwelling survivors of stroke.

The relationship between stroke and physical disability was examined in a cohort of adult, Framingham, Massachusetts, residents who, between 1948 and 1951, were assembled for a longitudinal examination of cardiovascular disease. Multivariate analyses examined the amount of residual disability attributable to stroke among 2540 community-dwelling survivors, 27 years after their initial examination, after controlling for age, cardiovascular risk factors, other cardiovascular diseases, and eight general health conditions related to physical disability. Among men living in the community, a history of stroke explained 12% of the variance in physical disability. Suffering a stroke, however, was not as strongly related to physical disability among women living in the community, accounting for only 3% of the variance. Results suggest that although older men and women die from the same major causes, they may not be disabled by the same conditions.

The Physical Activity Scale for the Elderly (PASE): development and evaluation.

A Physical Activity Scale for the Elderly (PASE) was evaluated in a sample of community-dwelling, older adults. Respondents were randomly assigned to complete the PASE by mail or telephone before or after a home visit assessment. Item weights for the PASE were derived by regressing a physical activity principal component score on responses to the PASE. The component score was based on 3-day motion sensor counts, a 3-day physical activity dairy and a global activity self-assessment. Test-retest reliability, assessed over a 3-7 week interval, was 0.75 (95% CI = 0.69-0.80). Reliability for mail administration (r = 0.84) was higher than for telephone administration (r = 0.68). Construct validity was established by correlating PASE scores with health status and physiologic measures. As hypothesized, PASE scores were positively associated with grip strength (r = 0.37), static balance (r = +0.33), leg strength (r = 0.25) and negatively correlated with resting heart rate (r = -0.13), age (r = -0.34) and perceived health status (r = -0.34); and overall Sickness Impact Profile score (r = -0.42). The PASE is a brief, easily scored, reliable and valid instrument for the assessment of physical activity in epidemiologic studies of older people.

Hospital readmissions among the elderly.

This paper investigates the six-month hospital readmission rates among 444 patients 65 years of age or older admitted to a large metropolitan teaching hospital who had a primary discharge diagnosis of cerebrovascular disease, hip fracture, or congestive heart failure. Twenty-four percent were readmitted to the same institution one or more times during the six-month follow-up. Striking variability was observed in use of hospitals across these diagnostic groups. Patients with a primary diagnosis of congestive heart failure were at highest risk of hospital readmission (36%). Multiple readmissions among the congestive heart failure group were prevalent. These preliminary data suggest that hospital readmission among the aged is a complex multifaceted phenomena.

Oral disease and physical disability in community-dwelling older persons.

OBJECTIVE: The aim of this epidemiologic investigation was to determine whether poor oral health in older persons was associated with physical disability. DESIGN: The study was a cross-sectional survey involving in-home interviews and dental examinations of older persons. SETTING: A random sample of 68 cities and towns was selected from the six New England states, with stratification according to population size. PARTICIPANTS: The study sample consisted of 1,156 community-dwelling (non-institutionalized) individuals aged 70 and over, randomly selected from the Medicare beneficiary lists for each city and town. MEASUREMENTS: Oral health was assessed by three dichotomous indices: edentulism (no teeth); current caries, including either coronal or root decay; and periodontal disease, as measured by gingival pocket depth. Physical disability was indicated by the subject's self-report of difficulty in the areas of personal care (eating, bathing, dressing, and using the toilet) and mobility (walking, bed transfer, getting outside). Additional independent variables included age, sex, number of teeth, education, living alone, oral hygiene practices, and time since last dental visit. RESULTS: We found a direct association between specific areas of physical disability and current caries and edentulism. The risk of poor oral health did not increase with advancing age once the related risk factors were controlled for. Those subjects with mobility disabilities were at increased risk of tooth loss; those with personal care limitations were at increased risk of current caries. CONCLUSIONS: Physical disability should be added to the list of known risk factors for oral disease among the older population. Our findings call attention to the need for health care providers to screen for oral health problems among disabled older persons. Further gerontologic research is needed to identify the mechanisms linking physical disability with oral disease in older persons.

A home-based exercise program for nondisabled older adults.

OBJECTIVES: This paper describes a videotaped, home-based, strength training program, titled Strong-for-Life and reports on its effectiveness in improving muscle strength, psychological well-being, and health status in a sample of older persons. DESIGN AND SETTING: We enrolled 102 nondisabled, community-dwelling older people aged 66 to 87, identified from the Medicare beneficiary list, into a randomized, controlled trial. MEASUREMENTS: Effectiveness was based on change in isokinetic upper and lower extremity muscle strength, psychologic well-being, and health status. RESULTS: Results revealed several statistically significant short-term benefits after 12 to 15 weeks of exercise, especially for men. Younger older adults demonstrated a 10% improvement in knee extensor strength relative to control subjects. Older male exercisers achieved significant differences relative to controls in perceived anger, tension, and overall social functioning. Male exercisers, in general, achieved significant improvement in perceived vigor. Women did not report psychological benefits following participation in the program. CONCLUSION: Study results reveal that the Strong for Life program, designed to be widely disseminated to the nondisabled older population, has many short-term positive benefits.

Have we oversold the benefit of late-life exercise?

BACKGROUND: Increasing exercise among older adults to improve function and prevent or decrease disability is widely promoted in developed countries. This review seeks to critically evaluate the degree to which existing scientific evidence supports these claims. METHODS: A literature review was performed in Medline and Best Evidence databases for the years 1985 to 2000. Experimental and quasi-experimental aerobic and resistance exercise interventions were reviewed for impairment, function, and disability outcomes. The impact of exercise on specific impairments, functions, and disabilities was examined by summarizing the findings reported across all studies. RESULTS: Thirty-one studies were identified. Impairment and functional outcomes were reported in 97% and 81% of the studies, respectively; half of the studies examined disability outcomes. The most consistent positive effects of late-life exercise were observed in strength, aerobic capacity, flexibility, walking, and standing balance, with over half of the studies that examined these outcomes finding positive effects. Of the studies that examined physical, social, emotional, or overall disability outcomes, most found no improvements. In the five studies that reported reduced physical disability, the effect sizes ranged from .23 to .88. CONCLUSIONS: Late-life exercise clearly improves strength, aerobic capacity, flexibility, and physical function. Existing scientific evidence, however, does not support a strong argument for late-life exercise as an effective means of reducing disability. This may be due, in part, to methodological limitations in studies that have examined disability outcomes. On the other hand, the theoretical basis of interventions aimed at reducing disability may need to extend beyond exercise and address behavioral and social factors.

Interrelationships among disablement concepts.

BACKGROUND: Understanding interrelationships among disablement concepts is critical to the design of future disability treatment and prevention interventions. METHODS: This study uses cross-sectional data to examine the relationships among physiologic impairments, functional limitations, and disability in a moderately disabled sample of 207 community-dwelling older adults. RESULTS: As hypothesized, the data revealed statistically significant curvilinear relationships of upper and lower extremity strength and balance with mobility in this older sample. Multivariate analyses further clarified the hypothesized causal mechanism among the disablement concepts by demonstrating that most of the association of muscle strength and balance with disability was through the intermediary role of mobility limitations. CONCLUSIONS: The findings from this study highlight the value of clinical trials that focus on prevention or treatment of mobility limitations as a means of preventing disability; our findings underscore the need for future research that examines the effects of other variables believed to influence disablement in late life.

Are performance-based measures sufficiently reliable for use in multicenter trials? Musculoskeletal Impairment (MSI) Study Group.

BACKGROUND: The literature contains few reports of the test-retest reliability of performance-based measures. The purpose of this study was to determine the test-retest reliability of a battery of seven timed, performance-based measures used to assess the functional limitations of frail, older adults. METHODS: One hundred and five frail, elderly subjects were twice administered a battery of timed tests approximately 2 weeks apart: 8-foot walk, get-up-and-go test, stair climb, single and repetitive standing from a chair, and single and repetitive 10-pound lifts with the upper limbs. Agreement between the mean times recorded for accomplishing each task at the two administrations was assessed. RESULTS: Intraclass correlation coefficients ranged from .25 for the single chair stand to .79 for the 8-foot walk. Only the time taken for the single 10-pound lift was significantly greater at the first administration as compared with the second. CONCLUSIONS: Timed performance-based measures have a wide range of test-retest reliability. Performance-based protocols that reflect familiar tasks with discrete starting and ending points may achieve higher reliability than tasks that are unfamiliar to subjects or may have ambiguous elements in them.

Physician-based physical activity counseling for middle-aged and older adults: a randomized trial.

Sedentary behavior among older adults increases risk for chronic diseases. Physicians in a primary care setting can play an important role in promoting physical activity adoption among their older patients. The Physically Active for Life (PAL) project was a randomized, controlled trial comparing the efficacy of brief physician-delivered physical activity counseling to usual care on self-reported physical activity levels. The physical activity counseling was based on the Transtheoretical Model of Change and social learning theory. Twenty-four community-based primary care medical practices were recruited into the study; 12 were randomized to the Intervention condition and 12 to the Control condition. Physicians in the Intervention practices received training in the delivery of brief physical activity counseling. Subjects in the Intervention practices (n=181) received brief activity counseling matched to their stage of motivational readiness for physical activity, a patient manual, a follow-up appointment with their physician to discuss activity counseling, and newsletter mailings. Subjects in the Control practices (n=174) received standard care. Measures of motivational readiness for physical activity and the Physical Activity Scale for the Elderly (PASE) were administered to subjects in both conditions at baseline, 6 weeks following their initial appointment, and at 8 months. Results showed that at the 6-week follow-up, subjects in the Intervention condition were more likely to be in more advanced stages of motivational readiness for physical activity than subjects in the Control condition. This effect was not maintained at the 8 month follow-up and the intervention did not produce significant changes in PASE scores. Results suggest that more intensive, sustained interventions may be necessary to promote the adoption of physical activity among sedentary, middle-aged, and older adults in primary care medical practices.

The structure and reliability of health belief indices.

A wealth of research using the Health Belief Model provides empirical evidence of the model's utility in predicting health, illness, and sick role behaviors. Until recently, however, little attention has been paid to the important issues of the validity and reliability of measures used to assess various health belief dimensions. Using factor analysis, our study demonstrates that moderately reliable indices covering a wide spectrum of distinct health beliefs can be constructed and then replicated across independent samples. The factor analysis approach revealed that condition-specific measures of perception of susceptibility and severity and situation-specific measures of perceived barriers are empirically distinct from general measures of these beliefs. We therefore recommend caution in mixing general and specific questionnaire items within the same index when measuring these beliefs. A factor representing perceptions of health threat emerged, but its composition require further clarification. The degree of similarity between the factor structures in the two independent samples provides support for the existence of independent health belief dimensions.

How measurement techniques influence estimates of disability in older populations.

Measures of disability in activities of daily living (ADL) have become important indicators of the health of older persons. One fundamental decision in disability research is constructing or choosing a rating scale to measure ADL disability. Although there is growing consensus in the field on what ADLs to measure, there is little agreement on how to measure ADL disability. This study compares the effect of scales that rate the presence of difficulty, use or human assistance and use of any type of assistance to perform seven different ADLs on prevalence estimates of disability in a probability sample of 1818 adults 70 years of age and older living in the six New England states. Results reveal that different disability rating scales can have a dramatic impact on prevalence estimates of disability in older populations. Measures that used the 'difficulty' scale produced disability estimates from 1.2 to 5 times greater than estimates from the 'human assistance' scale. The effect of rating scales was associated with respondents' age, social factors, and health status. Effects also varied substantially across different ADLs. Researchers need to make careful choices of the disability ratings scales and use caution in drawing inter-study comparisons where different scaling methods were employed.

The disablement process.

Building on prior conceptual schemes, this article presents a sociomedical model of disability, called The Disablement Process, that is especially useful for epidemiological and clinical research. The Disablement Process: (1) describes how chronic and acute conditions affect functioning in specific body systems, generic physical and mental actions, and activities of daily life, and (2) describes the personal and environmental factors that speed or slow disablement, namely, risk factors, interventions, and exacerbators. A main pathway that links Pathology, Impairments, Functional Limitations, and Disability is explicated. Disability is defined as difficulty doing activities in any domain of life (from hygiene to hobbies, errands to sleep) due to a health or physical problem. Feedback effects are included in the model to cover dysfunction spirals (pernicious loops of dysfunction) and secondary conditions (new pathology launched by a given disablement process). We distinguish intrinsic disability (without personal or equipment assistance) and actual disability (with such assistance), noting the scientific and political importance of measuring both. Disability is not a personal characteristic, but is instead a gap between personal capability and environmental demand. Survey researchers and clinicians tend to focus on personal capability, overlooking the efforts people commonly make to reduce demand by activity accommodations, environmental modifications, psychological coping, and external supports. We compare the disablement experiences of people who acquire chronic conditions early in life (lifelong disability) and those who acquire them in mid or late life (late-life disability). The Disablement Process can help inform research (the epidemiology of disability) and public health (prevention of disability) activities.

Quality of Medicare-reimbursed home health care.

We investigated the prevalence of quality of care deficiencies in 4,324 Medicare-reimbursed episodes of care provided by 47 home health agencies. The quality of care protocol consisted of a process-oriented, systematic record review by a trained nurse reviewer. Results suggest that an estimated 14.4% of home health care episodes had quality deficiencies with the potential for or actual adverse effects on the patient. Multivariate analyses revealed that the complexity of patients' needs increased the likelihood and severity of the quality problems. Agency ownership was not related to risk of a quality problem, but regional variation in agency effects was observed. Specific problem areas were identified that suggested several ways that home health care could be improved.

High-risk profiles for nursing home admission.

A statewide probability sample of 1,625 Massachusetts elderly was studied prospectively over a decade to identify risk profiles for long-term care (LTC) institutionalization. Previous admission to a LTC institution, age, basic ADL disability, and restricted outside mobility were the strongest individual predictors of institutionalization. Examining profiles of risk factors dramatically increased the ability to predict 10-year risk of admission.

Home-based resistance training: predictors of participation and adherence.

This study identified factors associated with exercise participation and adherence in a sample of 102 sedentary, functionally limited, community-dwelling adults aged 60 to 94 years who participated in a home-based resistance training program. Stepwise regression analyses revealed that baseline physical factors (i.e., higher levels of mobility, weaker muscle strength, and fewer numbers of new medical conditions) were associated with higher rates of participation in the home program. Positive attitudes and a sense of control toward exercise, lower levels of confusion and depressive moods, and the development of fewer new medical problems during the program were related to higher levels of adherence to the program. Findings revealed that although physical health variables were the primary indicators of an older person's overall participation in the program, it was the psychological factors that were most important to adherence to this home-based program.

Periodontal disease among New England elders.

Much of the existing oral epidemiologic literature is limited by having inadequate numbers of the oldest-old in their sample, having used rudimentary periodontal measures, or not having examined probability samples of community-dwelling elders. The New England Elders Dental Study (NEEDS) is the first study that documents the periodontal disease status of a probability sample of 554 adults aged 70 to 96 living within an entire U.S. Public Health Service region. The NEEDS study revealed substantially higher estimates of periodontal destruction among older adults than previous national studies would suggest. These results are consistent with several papers in the literature that suggest that periodontal disease rates are on the increase in older adults. In the coming decades dentistry should be prepared to meet the increasing need and demand for periodontal services in the growing older population.