Healthcare Utilization Among Women With Physical Disabilities (Medscape Women’s Health eJournal)
Healthcare Utilization Among Women With Physical Disabilities
By Catherine P. Coyle, PhD, Mayra C. Santiago, PhD, FACSM
Originally published in Medscape Women’s Health eJournal 7(4), 2002
Abstract and Introduction
Abstract
Background: Current published data indicate barriers and deficiencies in healthcare for women with physical disabilities. Yet, information regarding the influence of secondary conditions and demographic variables on the actual utilization of general health and rehabilitative services is limited.
This research examined this issue.
Design: Survey research Setting: Metropolitan Philadelphia region Participants: 170 women between 21 and 65 years of age with physical disabilities Results: Most (96%) women had seen a general healthcare provider (eg, personal physician or gynecologist) in the past 6 months, with 60% reporting seeing such a provider 3 or more times. Despite this high frequency, many women had not had routine preventive gynecologic cancer screening services in the past 5 years. Additionally, respondents reported experiencing on average 12 secondary complications in the past year that moderately impaired their functioning. Many of these complications (fatigue, spasticity, deconditioning, joint pain, depression, social isolation) are preventable. Despite these complications, only about half of the women had seen a rehabilitative service provider (eg, physical therapist, mental health worker) in the past 6 months. Women who saw their general healthcare provider most frequently were more likely to also be receiving services from a rehabilitative service provider.
Conclusion: General healthcare providers are frequently seeing women with physical disabilities. Healthcare providers have the ability and opportunity to enhance the health and wellness of this population. Particular attention should be focused on providing preventive healthcare services, including gynecologic cancer screenings and prevention and management of secondary conditions that accompany disability.
Introduction
Women with disabilities constitute a large subset of the US population. There are approximately 28.6 million women with disabilities, comprising approximately 21% of the female population and 53% of the disabled population in the United States.1 However, only recently have publications and research emerged that focus on the healthcare needs and use of healthcare resources by women with physical disabilities.2-10
Existing studies about health-seeking behaviors of people with disabilities indicate that access to health and rehabilitative services is insufficient, especially for women with physical disabilities. Access problems result from a variety of barriers that include lack of health insurance coverage, lack of knowledge and/or negative attitudes of healthcare providers toward the disabled, low income, low educational level, inaccessible equipment and/or facilities, and transportation problems.2,7,11
Veltman and colleagues11 describe the physical barriers impeding access to healthcare among persons with physical disabilities. In their survey, more than 30% of the respondents indicated that they had difficulty in physically accessing their doctor’s office, equipment, and/or washrooms. In addition, 19% felt that they were receiving inadequate primary healthcare, and 22% felt that their disability was preventing them from accessing adequate primary healthcare services.
Women in the United States with physical disabilities were less likely to receive preventive healthcare services for breast and cervical cancer than women without physical disabilities.7 A Canadian survey of people with physical disabilities indicated that some health promotion and preventive services (eg, cholesterol, mammogram, pelvic exam, Pap test, rectal exam) were not offered to the majority of female respondents.12 Surveyed women indicated that their healthcare providers more often than not failed to mention or inquire about such topics as diet, exercise, pain, sleep, and changes in functional status.
Understanding the status of healthcare service utilization among women with physical disabilities and its relationship to the occurrence of secondary conditions is in line with the national health goals addressed in Healthy People 2010.13 These goals are: (1) to promote the health of people with disabilities; (2) to prevent secondary conditions in people with disabilities; and (3) to eliminate health disparities between people with and without disabilities in the US population. According to the Healthy People 2000 Progress Review: People With Disabilities,14 most of the national health objectives relevant to people with disabilities have not been met, and disparity continues to exist between the disabled and nondisabled populations with regard to healthcare. For example, 69% of adult women with disabilities reported having Pap tests as compared with 77% of women without disabilities; 50% of women with disabilities aged >/= 50 years reported having breast exams and mammograms vs 56% of women without disabilities in the same age group.
Although current published data indicate that there is a deficiency in health services for women with physical disabilities, information regarding the actual utilization of general health and rehabilitative services among this population is limited. In an effort to add information regarding the status of healthcare and rehabilitation services for women with physical disabilities, this article reports the findings on this topic from a Health Wellness Needs Assessment Survey for Women with Physical Disabilities, conducted as part of larger research project examining health and wellness issues relevant to women with physical disabilities. The following research questions were evaluated:
- What is the frequency of use of general healthcare services by women with physical disabilities?
- Are there any differences between demographic characteristics and use of general healthcare services and providers?
- What is the frequency of use of rehabilitation services among women with physical disabilities?
- Are there any differences between demographic characteristics and the use of rehabilitation services and providers?
- Are there any differences between health insurance coverage and the use of general healthcare or rehabilitative services among women with physical disabilities?
In addition, the nature of the relationship between secondary conditions associated with the primary disability and the use of general and rehabilitative services was examined. Data on the types of preventive health services received by women with disabilities were also examined.
Methods
Participant Recruitment
Women with physical disabilities between the ages of 21 and 65 living in an urban, metropolitan area comprised the target population for this study. Potential participants were randomly selected from the current service lists of 3 major organizations providing services for individuals with disabilities (ie, a Chapter of the National Multiple Sclerosis Society and 2 Independent Living Centers). Media notices in local newspapers and radio stations were also used to recruit additional volunteer participants.
The analyses in this article are limited to 170 women with physical disabilities, between the ages of 21 and 65, who returned the survey instrument with complete information. Women in the study had been diagnosed with different types of physical disabilities, including, but not limited to, multiple sclerosis (MS), cerebral palsy (CP), polio, brain injury, and spinal cord injury.
Data Collection Procedures
To conduct the study, approval of the research design for the use of human subjects was obtained from an Institutional Review Board. Survey packets containing an informational cover letter, the instrument booklet, and a self-addressed, stamped envelope were mailed by each agency to a total of 700 randomly selected participants. Instructions about how to contact research staff for further assistance were provided in the event that participants had questions or needed help in completing the survey instrument. Because this is a difficult population to contact, and in order to enhance return rates, follow-up reminders were placed in the newsletters of the 3 agencies aiding in recruitment of participants. In all, 208 surveys were returned, representing a 30% response rate. This percentage may actually underestimate the true response rate, as many of the mailing lists used to solicit participants also included names of women without disabilities. Likewise, because of confidentiality issues with the mailing lists, it was not possible to ascertain how many women received duplicate surveys. Of the 208 returned surveys, 38 were unusable because of incomplete data or the respondents being older than the age criterion established for the study.
The Survey
The survey queried respondents about basic demographic data (ie, age, race, educational level, employment status, income, etc). Information was also obtained on respondents’ primary disability, health service usage, functional status, and occurrence and severity of secondary conditions.
Health service usage. Respondents were provided with a list of healthcare providers (including general practitioner, gynecologist, mental health professional, occupational therapist, personal physician, physical therapist, speech therapist, and recreation therapist) and asked to indicate how often they visited each type of provider in the past 6 months. In addition, women were asked to indicate if they had received a Pap smear, breast exam, or a mammogram when visiting a physician within the past 5 years.
Functional status. To obtain a measure of functional status, respondents were asked to rate how severely their disability affected their functioning when performing 14 basic tasks (eg, transferring from a bed or chair, eating, walking 10 steps without rest, dressing, preparing meals, handling money). The 14 items that were used were taken from the Third National Health and Nutrition Examination survey15 and are detailed in a previous publication by Coyle and colleagues.3 Raw data were transformed into a functional status score by computing the average rating across the 14 items. Higher scores on this variable indicated less functional independence.
Secondary conditions. The survey also included data on the prevalence and severity of 32 secondary conditions among women with physical disabilities. This portion of the survey used a revised version of the questionnaire created by Seekins, Clay, and Ravesloot[16] for a surveillance study on secondary conditions in the state of Montana. As a measure of the level of severity of secondary conditions, respondents were asked to rate the degree to which each secondary condition affected their activity and independence during the past 12 months. Further details on the severity scale are described in the publication by Coyle and colleagues previously cited.3
Data Analyses
Data were analyzed with the Statistical Package for the Social Sciences (SPSS) version 10.0. Statistics describing the demographic and healthcare utilization profile of the sample were generated. General healthcare visits were calculated by summing the number of visits to a general practitioner, gynecologist, and/or personal physician over the past 6 months for each respondent. Rehabilitative service usage was calculated in a similar manner, differing only with regard to the type of providers included (ie, mental health professional [psychologist or psychiatrist], occupational therapist, physical therapist, speech therapist, or recreation therapist).
Comparisons using analysis of variance (ANOVA) were conducted to detect differences in general and rehabilitative healthcare service utilization according to demographic variables. An additional ANOVA was performed to detect differences in the use of these healthcare services by health insurance coverage. For all ANOVA analyses, the educational level and employment status variables were recoded. Educational level was recoded to reflect 3 categories: those with a high school diploma (n = 59), those with some college (n = 51), and those with a baccalaureate degree or higher (n = 58). Employment was recoded so that women employed on a full or part-time basis comprised 1 category of respondents (n = 50). Other categories compared in the analyses were women who reported they were unable to work (n = 77), women reporting that they were unemployed (n = 17), and women reporting some other type of occupational status, such as being retired, a student, or a housewife (n = 23).
Pearson product moment correlations were also calculated between the number of general and rehabilitative service visits, functional status scores, total number of secondary conditions endorsed, and severity rating for secondary conditions.
Results
Demographics
Most of the survey respondents were white (78.2%) (Table 1). Other ethnic groups included African American (15.3%) and other (4.1%), leaving 2.4% of the respondents not reporting ethnicity. This sample of women was well educated, with the majority (64.2%) reporting some college and university course work. The average household income ranged from below $20,000 (36.5%) to $41,000 and above (25.3%). The average age of respondents was 46.5 years (SD = 9.1).
The majority of respondents (45.3%) indicated that they were unable to work as a result of their disability or illness. Another 29.5% were employed on a full- or part-time basis. Seventeen respondents (10.0%) indicated that they were unemployed, and 23 (13.5%) identified some other type of employment status (eg, volunteer, retired, homemaker, student).
Most of the women (92.4%) lived in their own home either independently (65.3%) or with the aid of a personal assistant (27.1%). Thirteen women (7.6%) reported other living arrangements such as a nursing home or residential institution.
Most of the women indicated that their healthcare bills were covered by private healthcare insurance (55.3%) or some type of government subsidized insurance such as Medicare (30.6%), and/or Medicaid (15.3%). Nine women (5.3%) were without any healthcare insurance.
Disabling Conditions
Various types of disabling conditions were represented in the sample, including neurologic impairment, neuromuscular disorders, brain dysfunction, sensory disabilities, arthritic conditions, spinal cord dysfunction, pain syndromes, orthopaedic conditions, and debility (for a complete list, see Table 2). These categories were largely based on the impairment group codes from the Uniform Data System for Medical Rehabilitation.[17] The average length of time respondents had their disability was 20.7 years (SD = 14.3). Among the top 5 primary disabling conditions reported by survey respondents, neurologic disorders were most often identified as the primary disability, with MS being the most frequently identified condition in this category. The second most common category was sensory disabilities. With regard to secondary conditions associated with their disability, the women in this sample reported on average experiencing 12 secondary problems (SD = 6.05) in the past year. Women indicated that these conditions were moderate problems that limited their activity to about 6 to 10 hours a week (mean = 1.86, SD = .47). The most frequently experienced secondary conditions were fatigue, mobility problems, physical deconditioning, spasticity, and joint pain (Table 3).
General Healthcare Services and Providers
In this study, “general healthcare services” refers to services provided to women with physical disabilities by general practitioners, gynecologists, and/or personal physicians. Almost all of the 167 women (94%) responding to these questions had seen at least 1 general healthcare provider in the past 6 months. Approximately 71.9% (n = 120) of the women reported visiting a general practitioner in the past 6 months, 61.7% (n = 103) reported seeing their gynecologist, and 48.5% (n = 81) stated that they had visited their personal physician. However, there was great variability in the total number of general healthcare visits reported by women in this sample (mean = 4.32, SD = 4.16).
Approximately 6.0% (n = 10) reported not having a visit to a general healthcare provider in the past 6 months, 34.1% (n = 57) reported having 1 to 2 visits, 27.5% (n = 46) reported having 3 to 4 visits, and 32.3% (n = 54) had 5 or more visits. Statistically significant differences were obtained for the total number of general healthcare visits for the demographic variables of employment (F[3,160] = 3.82, P = .01, but not for education (F[3, 161] = .46, P = .71), living arrangements (F[2,164] = 2.78, P = .07) and income (F[2,133] = .50, P = .61).
Follow-up analyses indicated that those women who were unable to work reported more visits to their general healthcare providers (mean = 5.10) than those who were employed on a full or part-time basis (mean = 3.06) or were unemployed (mean = 2.76) (Table 4). Additionally, women who reported some other type of employment status, such as housewife, student, or retired, also had significantly more visits to their general healthcare provider (mean = 5.33) compared with women employed on a full- or part-time basis.Additional analyses using Pearson product moment correlations were conducted to explore the relationship between general healthcare usage, functional status (range = 1-56, mean = 13.45, SD = 1.36) and the number and severity of secondary conditions experienced in the last year (range = 0-32, mean = 11.99, SD = 6.05; range = 0-96, mean = 23.38, SD = 14.89, respectively). Analyses indicated weak but statistically significant correlations (P = .01) between general healthcare usage and the number and severity of secondary conditions (Table 5). Most of the women (n = 168) answered questions about preventive gynecologic cancer screening care. In the past 5 years, approximately 20.2% (n = 34) of the women surveyed reported that they had not had a Pap smear and 15.6% (n = 26) indicated that they had not had a physician-performed breast examination. Of the 132 women who were >/= 40 years of age, 16.7% (n = 22) reported not having a mammogram in the past 5 years.
Rehabilitative Healthcare Services and Providers
For this study, rehabilitation healthcare providers were considered to be mental health professionals, such as psychologists or psychiatrists; occupational therapists; physical therapists; speech therapists; or recreation therapists. One hundred sixty-two women responded to questions in this section of the survey. In contrast to the findings regarding visits to general healthcare providers, only about half (49.4%, n = 80) of the women had seen a rehabilitation healthcare provider in the past 6 months. About 32.1% (n = 52) of the women reported visiting a mental health provider in the past 6 months, 30.9% (n = 50) stated they had visited their physical therapist, and 16.0% (n = 26) reported using an occupational therapist. Less frequently reported were visits to a speech therapist (4.3%, n = 7) or a recreation therapist (4.3%, n = 7).
There was great variability in the total number of rehabilitative service visits reported by women in this sample. About 51% (n = 82) reported having no visits to a rehabilitation provider in the past 6 months, 5.6% (n = 9) reported having 1 to 2 visits, 7.4% (n = 12) reported having 3 to 4 visits, and 36.4% (n = 59) had 5 or more visits to a provider in the past 6 months (mean = 10.06, SD = 20.30). The number of rehabilitative service visits was not significantly correlated with functional status (r = .15, P > .05), the number of secondary conditions reported (r = .14, P > .05), or the severity of those secondary conditions (r = .07, P > .05). A weak but statistically significant correlation (r = .20, P = .01) was observed between the number of rehabilitative services and the number of general healthcare visits (Table 5).
To further examine differences in the total number of visits to a rehabilitation healthcare provider in the past 6 months, ANOVA analyses were conducted. No statistically significant differences in the total number of rehabilitation service visits existed for the demographic variables of education (F [3,156] = .44, P = .72), employment status (F (3, 156) = .29, P = .83), or income (F [2,130] = .02, P = .98). Statistically significant differences were obtained for living arrangements (F [2,159] = 3.87, P = .02). Follow-up analyses indicated that those women residing in institutional settings received more rehabilitative services (M = 21.25) than women living independently in the community (M = 6.96) (Table 6).As can been seen from Table 7, physical therapy and mental health services were the 2 rehabilitative services provided most frequently to women with physical disabilities. Physical therapy services were the most frequent type of service provided to women in institutional settings or to women living independently in the community with a personal assistant. It was the second most frequent service provided to women with a physical disability living in the community.
Mental health services were the most frequently provided rehabilitative service to women living independently in the community and the second most frequently provided service to women living in institutions or in the community with a personal assistant. Less frequently received rehabilitative services regardless of setting included occupational therapy, recreational therapy, and speech therapy (Table 7).
Healthcare Insurance Coverage
The average number of general healthcare visits (F[3,139] = 1.24, P > .05) or rehabilitative visits (F[3,153] = 1.44, P > .05) was not statistically different based on the type of healthcare coverage. Although not statistically significant, women who had Medicare or Medicaid coverage reported having more general healthcare visits and rehabilitative visits than with those with other types of insurance coverage (Table 8).
Discussion
National health objectives, identified in Healthy People 2010,[13] highlight the need for quality healthcare and health promotion services for individuals with disabilities. To achieve these objectives for women with physical disabilities, healthcare professionals must be knowledgeable not only about general women’s health issues but also about the variety of secondary conditions that often accompany disablement. In our research, women reported experiencing numerous secondary conditions that affected their daily life, with the most prevalent concerns being conditions related to their general physical functioning (eg, fatigue, mobility, physical deconditioning, spasticity, and joint pain).
Additionally, secondary conditions related to mental health emerged as prominent for these women. Of interest is that Brannigan and colleagues[12] report that inquiries and/or counseling about functional status, exercise, emotions, and pain were largely not addressed during healthcare maintenance visits for persons with physical disabilities in Canada. Likewise, Welner[10] identifies the limited knowledge that healthcare professionals have regarding the interaction between a woman’s health and her disability as a primary barrier to obtaining and receiving regular medical care. Although the current study did not assess the knowledge of general healthcare providers, the data underscore the importance of general healthcare providers’ knowledge base about the multitude of secondary conditions that affect the lives and health of women with physical disabilities.
Given the existence and progressive nature of many of these secondary conditions, the need for health promotion services for this population is paramount. Our research findings suggest that the great majority of women with physical disabilities visit their general healthcare provider routinely. Approximately 60% of the women visit their general healthcare provider frequently (at least 3 times in the past 6 months). This high use of general healthcare providers is not atypical for women with physical disabilities,[9,11] and in this research frequency of use was positively correlated with both the number and severity of secondary conditions. Given the cross-sectional nature of this study, it is unclear whether the relationship between visits to general healthcare providers and the severity and frequency of secondary conditions resulted from care rendered for secondary conditions, repeated visits because of ineffective care for secondary conditions, or care rendered for other reasons (eg, colds). Longitudinal research would be needed to examine these issues.
What is clear is that general healthcare providers regularly provide care to women with physical disabilities who are experiencing frequent and severe secondary conditions. Irrespective of the reason for the frequency of visits, general healthcare providers are in the unique position to assist women with physical disabilities to manage these conditions once they occur and, as importantly, prevent the occurrence of many of the more preventable conditions such as fatigue, deconditioning, depression, and social isolation.
Research findings from the present study also indicate that general healthcare providers have the opportunity of facilitating access to other health-related rehabilitative services that may assist these women with their secondary conditions. Yet, while 94% of the women involved in this research project had seen a general healthcare provider in the past 6 months, only 49% had seen a rehabilitative service provider in the same time period. Of interest is that whether or not a woman saw a rehabilitative provider was not significantly related to her functional ability or secondary conditions but rather to the number of times she had seen her general healthcare provider.
In the current study, women with physical disabilities most often accessed rehabilitative services from physical therapists and mental health providers, with women residing in institutions using rehabilitative providers to a significantly greater extent than those living in the community. The use of these services is not surprising in this population, as secondary conditions related to physical functioning and mental health were most problematic. Other research has also indicated the need for such services for women with physical disabilities.3,12 As the data from this study resulted in nonsignificant correlations between rehabilitative service usage, frequency of secondary conditions, and severity of secondary conditions, it is unclear which other factors besides frequency of contact with general healthcare provider may have influenced the referral process to a rehabilitative service provider.
Preventive healthcare services for women with physical disabilities must not be focused exclusively on disability-related concerns, such as secondary conditions. In addition to these issues, women with physical disabilities also need preventive health and gynecologic services. As for women without disabilities, they are at risk for a host of health conditions whose course can be minimized by early detection and treatment.
Data from this study indicate that preventive gynecologic cancer screening services are inadequately provided to women with physical disabilities. Whereas 61.7% of the women surveyed had seen a gynecologist in the past 6 months, 18% reported not having a PAP smear in the past 5 years. Furthermore, during this same time period, 15% of the women reported not having a physician-performed breast exam, and almost 17% of those who were 40 or older reported not having a mammogram. These findings regarding inadequate gynecologic cancer screening services for women with physical disabilities are consistent with findings from other studies.2,6-9,12,18
Environmental concerns such as inaccessible equipment and facilities or transportation difficulties may play a large role in the lack of access to preventive health care services for women with physical disabilities.7,9,10,11 It is imperative that general healthcare providers play an active role in dismantling any barriers that prevent them from fulfilling their role in enhancing the health of women with physical disabilities.
This study does have several limitations. Survey respondents self-selected to participate. They may, therefore, represent individuals for whom health and wellness issues are particularly salient or problematic. Furthermore, participants were primarily recruited from organizations serving individuals with disabilities, thus introducing the possibility of a selection bias. Women with physical disabilities who are not affiliated with any disability group may have different experiences with healthcare services that are not reflected in our results. Also, responses reflect the views of women with disabilities who resided in or near a large metropolitan area. These women may have more access to healthcare services than individuals residing in more rural areas. Finally, the research findings are limited by the accuracy and consistency with which the women who responded were able to recall their experiences with healthcare services. Inaccuracy in the actual number of times that they used a particular healthcare provider or received a particular healthcare service may exist as a function of their recall ability and/or their interpretation of the various types of healthcare providers.
Despite these limitations, the important implication of this study is that women with physical disabilities report experiencing numerous secondary conditions, with more than half reporting that they had problems with fatigue, mobility, physical deconditioning, pain, depression, and weight. Some women also report not receiving routine preventative gynecologic cancer screening services in a timely fashion. These issues underscore the importance of health promotion and preventive healthcare in this population. The routine use of general healthcare providers by women with physical disabilities observed in this study places these providers in a pivotal role in facilitating the achievement of the Healthy People 2010 goals for persons with disabilities—promoting the health of, preventing secondary conditions for, and eliminating health disparities between those with and without disabilities. Because general healthcare providers are seen so frequently in comparison to other healthcare providers, emphasis should be placed on resources and training that would assist these providers in incorporating a preventive approach into their services for persons with disabilities.
Tables
| Table 1. Demographic Profile and Type of Health Insurance Coverage (N = 170) | |
|---|---|
| Category | Total Number in Category (%) |
| Age | |
| 20-40 | 43 (25.3) |
| 41 and over | 127 (74.7) |
| Education | |
| High school | 59 (34.7) |
| Some college | 51 (30.0) |
| Bachelor degrees | 38 (22.4) |
| Graduate degrees | 20 (11.8) |
| Not reported | 2 (01.2) |
| Employment | |
| Full time | 29 (17.1) |
| Part time | 21 (12.4) |
| Unable to work | 77 (45.3) |
| Unemployed | 17 (10.0) |
| Other | 23 (13.5) |
| Not reported | 3 (01.8) |
| Income | |
| Below $20,000 | 62 (36.5) |
| $20,000-40,999 | 33 (19.4) |
| $41,000 and above | 43 (25.3) |
| Not reported | 32 (18.8) |
| Ethnic/racial background | |
| Caucasian | 133 (78.2) |
| African American | 26 (15.3) |
| Other | 7 (04.1) |
| Not reported | 4 (02.4) |
| Living arrangements | |
| Live at home independently | 111 (65.3) |
| Live at home with personal assistance | 46 (27.1) |
| Live in an institution | 13 (07.6) |
| Health insurance coverage* | |
| Medicaid | 26 (15.3) |
| Medicare | 52 (30.6) |
| Private health coverage | 94 (55.3) |
| No health insurance | 9 (05.3) |
| Other coverage | 35 (20.6) |
* Some respondents acknowledged having more than 1 type of health insurance coverage | |
| Table 2. Primary Disability Categories Based on the Uniform Data Classification System (N = 170) | |
|---|---|
| Disability Category | Total Number in Category(%) |
| Neurologic conditions MS (n = 76) CP (n = 13) Friedrich’s ataxia (n=1) | 90 (52.9) |
| Sensory disabilities Hearing (n = 6) Visual (n = 9) | 15 (08.8) |
| Neuromuscular disorders Polio (n = 6) Transverse myelitis (n = 1) Muscular dystrophy (n = 3) Brachial plexus lesion (n = 1) Epilepsy (n = 3) | 14 (08.2) |
| Brain dysfunction Traumatic head injury (n = 8) Other (Alpert’s syndrome) (n = 1) CVA stroke (n = 5) |
14 (08.2) |
| Arthritic conditions Arthritis (n = 7) Scleroderma (n = 1) | 8 (04.7) |
| Spinal cord dysfunctions Nontraumatic Spina bifida (n=2) Familial spastic paraplegia (n = 1) Traumatic (n = 5) | 8 (04.7) |
| Pain syndromes Fibromyalgia (n = 2) | 2 (01.2) |
| Orthopaedic conditions Amputation (n = 1) Other (n = 3) | 4 (02.4) |
| Debility Chronic fatigue (n = 1) | 1 (00.6) |
| Other conditions | 11 (06.5) |
| Not reported | 3 (01.8) |
| Table 3. Secondary Conditions and Severity (N = 170) | ||
|---|---|---|
| Secondary Conditions | Number Endorsing | Severity (Mean [SD]) |
| Fatigue | 133 | 1.67 (1.94) |
| Mobility problems | 116 | 1.57 (1.28) |
| Physical deconditioning | 115 | 1.52 (1.25) |
| Spasticity | 108 | 1.15 (1.11) |
| Joint pain | 105 | 1.28 (1.23) |
| Depression | 100 | 1.03 (1.06) |
| Chronic pain | 97 | 1.24 (1.26) |
| Access problems | 95 | 1.14 (1.19) |
| Weight problems | 93 | 1.07 (1.16) |
| Isolation | 88 | 1.04 (1.18) |
| Bowel dysfunction | 88 | .95 (1.11) |
| Bladder dysfunction | 86 | 1.00 (1.17) |
| Sexual dysfunction | 85 | .94 (1.93) |
| Contractures | 81 | .86 (1.07) |
| Visual problems | 80 | .94 (1.96) |
| Medication side effects | 67 | .75 (1.09) |
| Arthritis | 63 | .65 (1.00) |
| Mental health problems | 59 | .67 (1.04) |
| Urinary tract infections | 58 | .59 (0.94) |
| Postural hypotension | 52 | .47 (0.83) |
| Anemia | 37 | .34 (0.74) |
| Communication difficulties | 35 | .65 (1.00) |
| Respiratory problems | 31 | .38 (0.88) |
| Dysreflexia | 25 | .28 (0.73) |
| Osteoporosis | 24 | .25 (0.70) |
| Hearing impairment | 23 | .24 (0.66) |
| Heart problems | 22 | .23 (0.65) |
| Heterotrophic bone ossification | 22 | .23 (0.65) |
| Pressure sores | 21 | .21 (0.60) |
| Diabetes | 18 | .24 (0.77) |
| Amputation | 5 | .08 (0.46) |
| Alcohol and drug use | 5 | .04 (0.22) |
| Table 4. Mean Comparisons of the Number of General Healthcare Visits by Employment Status | |||
|---|---|---|---|
| Variable | N | Mean | SD |
| Employment status | |||
| Full or part time employment | 42 | 3.061 | 2.39 |
| Unable to work | 67 | 5.10*,2 | 4.87 |
| Unemployed | 17 | 2.762 | 2.61 |
| Other | 20 | 5.332 | 4.65 |
| * Mean is significantly different on follow-up using Tukey HSD, P </= .01 1 Mean is significantly different on follow-up using Tukey HSD, P = .03 2 Mean is significantly different on follow-up using Tukey HSD, P = .03 | |||
| Table 5. Pearson Product Moment Correlations | |||||
|---|---|---|---|---|---|
| Variable | X1 | X2 | X3 | X4 | X5 |
| General healthcare usage (X1) | 1.00 | .11 | .35* | .33* | .20* |
| Functional status (X2) | 1.00 | -.10 | -.17 | .15 | |
| Number of secondary problems (X3) | 1.00 | .93* | .14 | ||
| Severity of secondary problems (X4) | 1.00 | .13 | |||
| Rehabilitative Services Usage (X5) | 1.00 | ||||
| * P = .01 | |||||
| Table 6. Mean Comparisons of the Number of Rehabilitative Healthcare Visits by Living Arrangements | |||
|---|---|---|---|
| Variable | N | Mean | Standard Deviation |
| Living arrangements | |||
| Independent in community | 105 | 6.96* | 14.16 |
| Independent in community with personal assistant | 45 | 12.87 | 23.43 |
| Institution | 12 | 21.25* | 34.73 |
| * Mean is significantly different on follow-up using Tukey HSD, p = .04 | |||
| Table 7. Comparison of the Number of Times Different Rehabilitation Healthcare Providers Were Seen in Past 6 Months by Living Arrangements | ||||||
|---|---|---|---|---|---|---|
| Type of Provider | Living Arrangements | |||||
| Community (n = 108) | Community With PA (n = 46) | Institutions (n = 12) | ||||
| Mean | SD | Mean | SD | Mean | SD | |
| Mental health provider | 3.53 | 7.41 | 3.43 | 9.15 | 5.33 | 9.40 |
| Occupational therapist | .78 | 6.94 | 1.43 | 3.61 | 1.15 | 2.79 |
| Physical therapist | 2.56 | 7.55 | 7.13 | 16.46 | 14.33 | 32.65 |
| Speech therapist | .01 | .68 | .80 | 3.98 | .15 | .55 |
| Recreational therapist | .24 | 2.49 | .71 | 3.22 | 1.00 | 3.32 |
| Table 8. Mean and Standard Deviations for the Number of General and Rehabilitative Healthcare Visits in the Past 6 Months by Type of Insurance Coverage | ||||
|---|---|---|---|---|
| Type of Insurance | Type of Visit | |||
| General Health Care | Rehabilitative Care | |||
| Mean | SD | Mean | SD | |
| Medicare | 6.23 | 4.78 | 19.14 | 38.47 |
| Medicaid | 5.19 | 4.78 | 11.22 | 22.03 |
| Private insurance | 4.13 | 4.36 | 8.70 | 15.46 |
| Other insurance | 3.87 | 2.97 | 5.76 | 8.77 |
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Funding Information
This article was supported in part with funds from the National Institutes of Health, National Institute of Child Health and Human Development, National Center on Medical and Rehabilitation Research, Grant # HD35059-01. The opinions expressed herein represent the authors’ and are not necessarily endorsed by the funding agency.
Catherine P. Coyle, PhD, Mayra C. Santiago, PhD, FACSM; Therapeutic Recreation and Kinesiology, Temple University, Philadelphia, Pennsylvania.