A framework for the conceptual modelling of assistive technology device outcomes.

PURPOSE: A key step in planning assistive technology outcomes research is formulation of a conceptual model, specific to a particular type of device, that provides a rationale for the expected outcomes. This paper reflects the conviction that the development of device-specific causal models will be facilitated by having available an overarching framework that is potentially applicable to multifarious types of devices and their outcomes. METHOD: A literature review identified the critical, unmet needs for a conceptual framework. The assumptions underlying the framework were specified preparatory to describing it and discussing its implications. RESULTS: The outcomes of assistive technology devices are depicted as resulting from the interaction among characteristics of a specific device-type, its users, and their environment. Initial junctures include procurement of a type of device and a period of introductory use that, interacting with various moderating co-factors, result in a variety of shorter-term outcomes, possible longer-term use, and its outcomes. CONCLUSIONS: The framework has the potential of facilitating the development of device-specific causal models. It also may contribute to developing a research agenda for assistive technology outcomes research by highlighting measures that need to be developed and by identifying testable hypotheses concerned, for example, with the manner and duration of devices' usage.

Assistive technology outcomes research: challenges met and yet unmet.

This article highlights the special requirements, achievements, and yet unmet challenges of assessing the outcomes of assistive technology services. The current status of this research is considered from the standpoint of developmental stages that seem to characterize many areas of outcomes research. Those stages include exhortation, sober appraisal, infrastructure building, and "getting on with it." The status of measuring assistive technology outcomes is described, and efforts to develop new measures are critically reviewed. Three as yet unmet challenges are discussed that are faced alike by assistive technology outcomes research and by rehabilitation outcomes research in general. They are as follows: (1) operationalizing a multiple-stakeholder approach to outcomes research; (2) formulating adequate treatment theories; and (3) creating shared databases.

Federal agency management practices for prioritizing and funding rehabilitation-related research.

This article focuses on the processes by which priorities are established and research is funded by three organizational entities that finance the preponderance of this country's rehabilitation-related research: the National Institute on Disability and Rehabilitation Research, the National Center for Medical Rehabilitation Research (the focal point of rehabilitation research at the National Institutes of Health), and the National Institutes of Health in aggregate (i.e., the several institutes that support rehabilitation-related research). Two perspectives are emphasized: the stakeholders' opportunities to influence deliberations at key steps in setting priorities and reaching funding decisions and the extent to which these management practices are explicitly conceptualized, transparent, and evidence-based. Those perspectives are brought to bear on three pivotal considerations: the agencies' commitment to directed vs. nondirected research, the role they assign to strategic planning, and their approach to reviewing applications for funding.

Subjectifying quality of life as a medical rehabilitation outcome.

In the literature of health-status assessment, it has been argued that quality of life has distinct meaning only if it is conceptualized and assessed according to a subjective perspective. This paper applies that viewpoint to the conceptual components of disablement and to assessing subjective well-being (i.e. subjective quality of life) as medical rehabilitation outcomes. The definition and measurement of subjective well-being are discussed, and its correlates for people generally are reviewed. Findings for people with disabilities are summarized, and several substantive and methodological issues are highlighted that require additional investigation.

Pressure ulcer risk in spinal cord injury: predictors of ulcer status over 3 years.

OBJECTIVE: To identify predictors of pressure ulcers in men with spinal cord injury over a 3-year period. DESIGN: Longitudinal, two-panel, cohort. SETTING: Community. PARTICIPANTS: One hundred eighteen men with spinal cord injury. MEASURES: Interviews, questionnaires, and physical examinations were completed in two phases, 3 years apart. Information obtained included demographic and spinal cord injury characteristics; ulcer history; health beliefs and practices; measures of impairment, disability, and handicap; and skin integrity. RESULTS: Thirty-one percent of the participants reported having a pressure ulcer in the 12 months before Phase 2. Some Phase 1 predictors of self-reported ulcers in the year before Phase 2 were a younger age at onset of spinal cord injury, previous pressure ulcer surgery, and the presence of a pressure ulcer in the year before Phase 1. On examination at Phase 2, 59% presented with an ulcer. Phase 1 predictors of ulcer presence at Phase 2 examination were similar to predictors for self-reported ulcers. CONCLUSION: Individuals with the identified predictive characteristics are at greater risk for developing pressure ulcers. These individuals should receive additional interventions to reduce that risk. Potential interventions include more systematic and frequent follow-up, frequent review of pressure ulcer prevention and management strategies, and provision of needed personal assistance and relevant equipment.

Facilitating patient learning during medical rehabilitation: a research agenda.

Although patient learning is widely acknowledged to be an integral part of many medical rehabilitation practices, it has been the subject of little systematic research. A workshop conducted August 18 to 19, 1997, was organized by the National Center for Medical Rehabilitation Research (National Institute of Child Health and Human Development, National Institutes of Health) and several co-sponsoring organizations to formulate recommendations concerning learning-oriented rehabilitation practices. The recommendations and their supporting rationale are summarized in the topic areas of motor learning and control, cognitive learning, recovery of functioning, generalization and transfer of training, and applications for patients with strokes, traumatic brain injury, amputations, and infants and children.

Chronic pain in a community-based sample of men with spinal cord injury: prevalence, severity, and relationship with impairment, disability, handicap, and subjective well-being.

OBJECTIVE: To assess the prevalence, severity, and correlates of chronic pain in a community-based sample of men with spinal cord injury (SCI). DESIGN: Survey. SETTING: Community. PARTICIPANTS: Seventy-seven men with SCI randomly selected from a sampling frame solicited from the community. METHOD: Participants completed standardized questionnaires assessing many areas of life, were interviewed in their homes, and underwent a physical examination at a hospital. There they were interviewed by an anesthesiologist regarding chronic pain, and a nurse administered objective pain measures. RESULTS: Seventy-five percent of the men reported chronic pain. Chronic pain was associated with more depressive symptoms, more perceived stress, and poorer self-assessed health. Greater intensity of pain was related to less paralytic impairment, violent etiology, and more perceived stress. Area of the body affected by pain was related to independence and mobility. CONCLUSIONS: Because of the high prevalence of chronic pain in the population with SCI and its relation to disability, handicap, and quality of life, health care providers need to give this issue the same priority given to other SCI health issues. Analysis of individual pain components provides better information than assessing overall pain. It is futile to treat SCI pain without giving full attention to subjective factors.

Reported pressure ulcer prevention and management techniques by persons with spinal cord injury.

OBJECTIVE: The purpose of this study was to identify factors that resulted in severe pressure ulcers in a community-based sample of 23 persons with spinal cord injury (SCI). DESIGN: A correlational design was used. SUBJECTS: Twenty men and three women, 57% with tetraplegia and 43% with paraplegia, participated. Adult participants with an ulcer of 12 weeks' duration or less were recruited from the plastic surgery clinic of a regional SCI center. MEASURES: A structured survey assessed demographic, SCI and ulcer characteristics; detection method; immediacy and appropriateness of action; time from detection to clinic visit; number of prior ulcers; and knowledge and practice of ulcer prevention techniques. Ulcer characteristics (ie, location, size, and stage) were assessed by examination and compared with participants' descriptions of their ulcers. RESULTS: Severe ulcers and ulcers that progressed in severity after initial detection were less accurately described by participants. Individuals who waited longer to come to the clinic presented with more severe ulcers. Taking immediate or appropriate action when an ulcer was detected was related to reported performance of more preventive behaviors. Contrary to expectation, immediacy and appropriateness of action, and knowledge and practice of preventive behaviors were unrelated to severity, progression of severity, and time from detection to the clinic visit. The findings suggest that educational programs should emphasize more strongly immediate visits to a physician upon detection of an ulcer. Furthermore, such educational models should be assessed for their effectiveness in reducing ulcers and preventing progression in severity once persons with SCI return to the community.

Educational interests of individuals with spinal cord injury living in the community: medical, sexuality, and wellness topics.

As a component of Baylor College of Medicine study of the life status of people with spinal cord injury (SCI), this study determined the educational topics of interest to a cohort of 590 adults with SCI living in the community. Thirty-five items in nine topic areas were included in the inventory. Three topic areas--medical, sexuality, and wellness--are discussed in this article. Across the three topic areas, the five topics of greatest interest were exercise programs, testing of nerve and muscle function, bladder or kidney problems, pain, and sexuality issues. Information about smoking cessation and alcohol or drug abuse was of interest to very few participants. Ten grouping variables were analyzed and individual differences, such as educational level and whether an individual had paraplegia or quadriplegia, were found to account for differences in the topics of interest. The results of this study can be used in setting priorities for the development of educational activities and learning experiences for individuals with SCI living in the community.

Alcohol and marijuana use in a community-based sample of persons with spinal cord injury.

The prevalence of self-reported alcohol and marijuana use, along with alcohol abuse as measured by the Short Michigan Alcoholism Screening Test, was assessed for a community-based sample (n = 123) of persons with spinal cord injury (SCI). Correlates of alcohol and marijuana use and alcohol abuse also were examined, including demographic variables, measures of impairment, disability, and handicap, SCI medical complications, and measures of subjective assessment such as health rating, health maintenance behaviors, depression, life satisfaction, perceived stress, pain, and social support. Prevalence of alcohol use (59%) and marijuana use (16%) in persons with SCI was less than that of comparison groups in the general population. However, prevalence of alcohol abuse (21%) exceeded that of general population studies. Participants who abused alcohol shared the following criteria: (1) perceived their overall health as worse than those who did not abuse alcohol; (2) were more depressed; and (3) experienced more stress in their lives than those who did not abuse alcohol. Participants who used marijuana were younger at the time of the study and were younger at injury. They were also more depressed and more stressed. The indications of alcohol abuse in one in five persons with SCI living in the community mandates that screening, treatment, and referrals be part of any rehabilitation treatment program.

Conference report: an agenda for medical rehabilitation outcomes research.

On August 29 to 31, 1994, a conference was conducted to develop recommendations for needed initiatives in medical rehabilitation outcomes research. Organized by the National Center for Medical Rehabilitation Research and cosponsored with the Agency for Health Care Policy and Research, the conference was entitled "An Agenda for Medical Rehabilitation Outcome Research." The resulting recommendations are presented in four areas: philosophic issues; strategy and design issues; measurement of disability and handicap; and measurement of quality-of-life and of health status.

Conference report: an agenda for medical rehabilitation outcomes research.

In August 1994, a conference was organized by the National Center for Medical Rehabilitation Research (National Institute of Child Health and Human Development, National Institutes of Health) and cosponsored by the Agency for Health Care Policy and Research to formulate recommendations for outcomes research in medical rehabilitation. Recommendations are presented in the areas of philosophical issues, strategy and design issues, measurement of disability and handicap, and measurement of quality of life and health status.

Subjective well-being: implications for medical rehabilitation outcomes and models of disablement.

Research regarding the subjective well-being (i.e., subjective quality of life as a whole) of persons with physical disabilities is considered from conceptual and methodologic perspectives. Relevant measurement scales, both single- and multiple-item, are reviewed, with special attention to measures-of-life satisfaction. Evidence about variables associated with subjective well-being is reviewed, based on studies of (1) people in general, (2) people with a variety of different disabling conditions and (3) persons with multiple sclerosis, stroke or spinal cord injury. Needed theoretic and empiric developments are discussed, including elaboration of the subjective aspects of impairments, disabilities and handicaps.

Sexual activities, concerns and interests of women with spinal cord injury living in the community.

A representative sample of 40 women selected from a community-based sampling frame of 661 men and women with spinal cord injury was studied for sexual activities, concerns and interests. Participants responded to a questionnaire and rating scales and were physically examined to establish their neurologic status. With respect to 11 other areas of life, sex life ranked tenth in importance and tenth in satisfaction. In the sample, 65% reported having had a physical relationship (not necessarily including intercourse) in the past 12 months. Areas of greatest concern were problems associated with urinary and bowel accidents and not satisfying a partner. Regarding topics of interest related to sexual activity, highest priorities were assigned to coping emotionally with changes in sexual functioning and helping a partner cope emotionally with limitations on sexual activity. Compared with a previously studied group of men with spinal cord injury, the women in the sample exhibited distinctive needs that were not being addressed sufficiently by rehabilitation professionals.

Pressure ulcers in community-resident persons with spinal cord injury: prevalence and risk factors.

The prevalence and correlates of pressure ulcers in terms of their number, severity, and anatomical location were studied in a community-based sample of 100 men and 40 women with spinal cord injury. Thirty-three percent (n = 46) presented with one or more ulcers of at least one stage I severity when visually examined. Twenty-one individuals had more than one ulcer, the maximum number of ulcers being seven. Of 87 ulcers for which severity ratings were available, 30 (34.5%) were stage I, 33 (37.9%) were stage II, and 24 (27.6%) were either stage III or IV. Individuals with an ulcer exhibited more paralysis and were more dependent on others in activities of daily living. A greater proportion of blacks had more severe ulcers (stages III and IV) than their white counterparts. Persons with more severe ulcers incurred their injury later in life, and had significantly lower mean scores on the Occupation and Mobility dimensions of the Craig Handicap Assessment and Reporting Technique. The findings suggest that factors governing initial development of a pressure ulcer differ in part from those responsible for an ulcer progressing in severity.

Depressive symptomatology in persons with spinal cord injury who reside in the community.

Depressive symptomatology was studied in a community-based sample of 100 men and 40 women with spinal cord injury. The mean for the Center for Epidemiologic Studies Depression Scale was higher than that reported previously for the general population, and the mean for women was higher than that for men. Findings from the Mobility dimension of the Craig Handicap Assessment and Reporting Technique (CHART) suggested that differences between men and women in degree of mobility within home and community partly mediate the gender difference in depressive symptomatology. Other CHART dimensions, Social Integration and Occupation, were inversely related with depression scores, although these dimensions did not differentiate men and women. A statistically significant relationship was not obtained between depression and disability, assessed by a self-report version of the Functional Independence Measure, or between depression and impairment, reflected by the ASIA Total Motor Index Score. Depression was not related with the presence of either pressure ulcers or presumptive evidence of urinary tract infection.

Sexual activities, concerns and interests of men with spinal cord injury.

A representative sample of 79 men with spinal cord injury, drawn from a sampling frame of 661 women and men who reside in the community, was studied in terms of sexual activity, concerns and interests. Participants responded to a questionnaire and rating scales and were physically examined to establish their neurologic status. With respect to eleven other areas of life, sex life ranked the lowest in terms of satisfaction and fifth in terms of importance. Of the sample, 67% reported having had a physical relationship (not necessarily including intercourse) in the past 12 months. Areas of sexual activity about which respondents were most concerned were not satisfying a partner, getting or giving a sexual disease, urinary accidents, and not getting enough personal satisfaction. From among seven topics related to sexuality, the three in which there was greatest interest were methods and techniques to achieve sexual satisfaction, helping a partner cope emotionally with limitations on sexual activity and ability to have children.

Relationship of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community.

The level and correlates of the life satisfaction of persons with spinal cord injury who are residing in the community were investigated. One hundred men and 40 women were chosen randomly from a cohort of 640 persons with spinal cord injury residing in a 13-county area in southeast Texas. The mean Life Satisfaction Index-A (LSIA-A) was lower than reported previously for persons in the general population. The LSIA-A was not correlated significantly with chronologic variables, the ASIA Total Motor Index Score, or a self-report version of the Functional Independence Measure. The LSIA-A was associated positively with self-assessed health, perceived control, and social support, as well as with the Social Integration, Occupation, and Mobility dimensions of the Craig Handicap Assessment and Reporting Technique. From the standpoint of an augmented version of the World Health Organization model of disablement, the life satisfaction of persons with spinal cord injury appears to be influenced, albeit indirectly, by selective aspects of their social role performance (handicap), but not by their degree of impairment or disability.

Relationships between independent living centers and medical rehabilitation programs.

A survey of independent living centers (ILCs) and medical rehabilitation programs (MRPs) with cooperative relationships was conducted to (1) document the extent and kinds of relationships that exist and (2) identify factors that are reported to impede or facilitate those relationships. A questionnaire was mailed to 83 ILCs that are listed in the ILRU Registry of Independent Living Programs and that reported having a relationship with one or more MRPs. Subsequently, another questionnaire was sent to the MRPs with which each ILC reported having a relationship. Usable questionnaires were received from 46 ILCs. In descending order, the most frequently reported relationships were (1) making referrals to or supplying information about MRPs, (2) providing peer counseling services, and (3) conducting training in daily living skills for medical rehabilitation patients. Mean ratings of satisfaction with the various kinds of relationships were relatively high. The three most frequently endorsed barriers to stronger relationships were conflicting approaches or styles of service delivery, funding of services, and conflicting program philosophies. Using information from a database describing ILCs, it was found that ILCs with MRP relationships served significantly more consumers than centers not having such relationships. According to results provided by 25 MRPs, patients with spinal cord injury most frequently received services by staff members of ILCs, with peer counseling being the most frequently provided service.