A Descriptive Study of Secondary Conditions Reported by a Population of Adults with Physical Disabilities Served by Three Independent Living Centers in a Rural State

Abstract

Individuals with disabilities may be at an increased risk for a number of preventable health problems. These have recently come to be referred to as secondary conditions (Marge, 1988; Pope & Tarlov, 1991) and are receiving significant attention from the public health sector as part of a national disability prevention initiative (National Council on Disability, 1986; Houk & Thacker, 1989; Pope & Tarlov, 1991). Marge (1988) defines secondary conditions as those conditions that may be experienced by an individual after they have a primary (or first) disability. They may range from such medical complications as pressure sores and urinary tract infections to problems of psycho-social adjustment, such as depression, to environmental issues such as access problems (Seekins, Smith, McCleary, Clay & Walsh, 1991; Graitcer & Maynard, 1991). In this framework, having a disability is viewed as increasing one's risks for a variety of preventable problems that can limit health, functional capacity and independence. Secondary conditions may be particularly significant to the 11-15 million individuals with a disability living in rural areas. For example, both rural rehabilitation providers and consumers living in rural areas have reported that access to health providers knowledgeable about disability is one of their major problems (Jackson, Seekins, Dingman & Ravesloot, 1990; Zafonte, Penny & Sarr, 1992). Despite the significance of secondary conditions to rehabilitation and independent living, little is known about how often they occur or how many people with disabilities develop them. Personal reports, clinical observations and hospital records suggest that the personal and social cost of these conditions can be high. For example, Sugarman (1985) reports that approximately 50% of persons with spinal cord injury (SCI) will develop pressure sores that cost over $30,000 and require up to six months' hospitalization to treat. Few other data are available to help assess the extent and cost of such problems, however. Given the significance of these problems, this new conceptualization views further disabling consequences of a disability as part of a continuum of risk TABULAR DATA OMITTED appropriate for public health attention (Marge, 1988; Houk & Thacker, 1989). A central component of public health involves surveillance of health-related problems within defined populations (Graitcer, 1987; Thacker & Berkelman, 1988). Surveillance activities allow public health officials to measure the incidence and prevalence of health problems, target interventions to specific geographic areas or population subsets, and monitor changes over time. The purpose of this paper is to report preliminary surveillance data on the incidence of secondary conditions reported by consumers of three independent living centers in a rural state. Method Participants and Settings Respondents were selected from the current service records of three Independent Living Centers (Summit, Inc., the Montana Independent Living Project, and the Yellowstone Valley Independent Living Center) serving 39 of 56 counties in Montana. Surveys were mailed to 456 individuals selected by staff as having impairments that limited their mobility (e.g., spinal cord injuries). Procedures Data were gathered using a survey which queried consumers about various personal characteristics (e.g., age) and their experience with 40 different problems previously identified as secondary conditions (Seekins et al., 1991). Respondents were asked to rate the severity of each secondary condition on a scale of 0 to 3, where zero meant the condition had not been a problem, one meant it was a mild or infrequent problem (limits activity 1-5 hours per week), two meant it was a moderate problem (limits activity 6-10 hours per week) during the past year and 3 meant that it had been a significant/chronic problem that limited activity 11 or more hours a week. …