- Email: [email protected]
The health status of women with cerebral palsy
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The Health Status of Women With Cerebral Palsy Margaret A. Turk, MD, Cynthia A. Geremski, MPA, Paula F. Rosenbaum, MS, Robert J. Weber, MD ABSTRACT. Turk MA, Geremski CA, Rosenbaum PF, Weber RJ. The health status of women with cerebral palsy. Arch Phys Med Rehabil 1997;78 Suppl 5:S-10-S-17. Objective: To determine preliminary associations between collected health status variables of women with cerebral palsy (CP) residing in the community. Design: Cross-sectional study using survey research. Participants: Sixty-three women residing in the community were administered the Telephone Questionnaire when contacted to arrange their visit to the study site located within the medical clinic of a local developmental services office. During the course of their visit to the study site, all 63 women completed the CP Study Protocol, in addition to the Mail-in Questionnaire upon completion of study participation. The women ranged in age from 20 to 74 years. Main Outcome Measures: Health status, consisting of four elements: (1) self-reported health status; (2) associated conditions; (3) secondary conditions; and (4) health behaviors (alcohol and tobacco use, physical activity, diet, and health care visit). Results: Women with CP residing in community living arrangements perceived themselves as healthy. The majority of women did not smoke (98%), had not consumed alcohol in the previous month (95%), and ate a balanced diet (52%). Participants also reported engaging in common physical activities (83%) and stretching and doing range-of-motion exercises in the previous week (43%), and participation in aerobic exercise in the previous week (43%). Sixty-eight percent (41 of 60) of the women walked, and more than 50% of the women did not require assistance with activities of daily living. The ability to walk and the use of a wheelchair were associated with participation in the common physical activities. The women reported associated conditions of mental retardation (34%), learning disabilities (26%), and a seizure history (40%). Additionally, the women in the sample reported the occurrence of several secondary conditions common among individuals with CP, including pain (84%), hip and back deformities (59%), bowel problems (56%), bladder problems (49%), poor dental health (43%), and gastroesphageal reflux (28%). Poor dental health was associated with a history of seizures, and associations were also found between pain and mental retardation, and between gastroesophageal reflux and mental retardation. Conclusions: Women with CP residing in the community perceived themselves as healthy, and the observed health status measures (eg, self-reported health, associated conditions, secondary conditions, and selected health behaviors) support this concept. For the most part, independent relationships were found between several of these measures indicating no significant association among the variables. Where associations were found, however, such as between walking and participation in From the Department of Physical Medicine and Rehabilitation, State University of New York (SUNY) Health Science Center at Syracuse, NY. Supported by grant R04/CCR208516, Centers for Disease Control and Prevention, Atlanta, GA. Reprint requests to Margaret A. Turk MD, Department of Physical Medicine & Rehabilitation, SUNY Health Science Center, 750 East Adams Street, Syracuse, NY 13210. © 1997 by the American Congress of Rehabilitation Medicine 0003-9993/97/7812-000353.00/0
Arch Phys Med Rehabil Vol 78, December 1997
physical activity, further investigation is warranted for a better understanding of their ramifications in the design of health promotion activities for women with CP.
© 1997 by the American Congress of Rehabilitation Medicine HE PUBLIC HEALTH enterprise is dedicated to achieving optimal health status for the maximal number of citizens, including persons with disabilities.1 A challenge that public health officials face in implementing this goal is understanding the myriad of perceptions of what constitutes "good" health. Illness, or the absence of health, often figures prominently in traditional medical definitions of health. Other definitions portray "healthy" as a state of paramount wellness, such as the United Nations World Health Organization defining health as "the state of complete physical, mental, and social well-being and not merely the absence of disease. ''2 The definition of health as a bipolar entity of "have" or "do not have" is problematic in health status assessment? It does not allow for a gradation of illness and wellness in a person's experience.4 An examiner may label a person "healthy" or "not healthy" on the basis of what he or she deems as complete well-being. Persons with disabilities have historically been portrayed as not healthy for this reason. 5 An important, but only newly investigated, topic in rehabilitation is the determination of health status in persons with disabilities. Research in this area routinely has been limited to the study of the effect of impairment on functional ability. This narrow perspective ignores the fact that persons with disabilities are subject to the same health risks as those without disabilities in society, such as dietary indiscretions, physical inactivity, drug abuse, and stressJ Keith6 notes that health status incorporates all indicators of health, including, but not limited to functional status. In a study by Stuifbergen and colleagues,7 the majority of 135 adults with disabilities reported that they were in good health despite their disabilities and the functional impact of those disabilities. There is little evidence on what elements of health status are important considerations for persons with disabilities. Similarly, no literature exists on the effects of race, class, and gender on health status of persons with disabilities. It can be surmised that the health status of women with disabilities is affected by issues of gender. As with all women, they often face general health care that is not specific to the particular needs of female patients, such as appropriate birth control counseling. As persons with disabilities, they must also contend with segregated, inaccessible, and sometimes inappropriate health services. 8 In addition to lack of access to preventive medical care, women with disabilities often lack the financial means and social support to effectively utilize community health promotion resources, such as gyms, psychological counseling, and weight loss centers. Little is known about the health behaviors of women with disabilities, or how women with disabilities perceive their own health status. Professionals in the fields of rehabilitation, nursing, public health, and social work have written about the importance of health promotion for persons with disabilities,9-j4 particularly for the prevention of secondary conditions, FS-18yet only a few
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HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
preliminary investigations have focused on women with disabilities. 19"2°Secondary conditions are compromising to the health status of all persons with disabilities, depending on the frequency and magnitude of their occurrence.2~-23 A secondary condition is a disease, injury, functional limitation, disability handicap, or impairment that occurs at any point of one's lifespan when the primary disability either is a risk factor for that secondary condition or alters the standard intervention for prevention or treatment of any health condition.24 Secondary conditions common in cerebral palsy (CP) include pain, various musculoskeletal deformities, bowel and bladder problems, poor dental health, and gastroesphageal refluxY "26 Women with disabilities often experience unique secondary conditions related to their reproductive health, as is the case for women with CP, who may have increased spasticity and/or incontinence during menstruation. Other physiologic considerations of health status include the presence of associated conditions and comorbidities. Associated conditions are the residual effects of an injury or pathology. Persons with CP may experience associated conditions such as seizures, mental retardation, learning disabilities, and various sensory problems resulting from the insult to the central nervous system, the pathology from which the primary disabling condition is derived. Comorbidities are disease processes unrelated to the primary disability. For example, a woman with CP may have diabetes, which would affect her health status and is unrelated to CP. Women with CP also experience the age-related changes that everyone expects with increasing age, yet may notice such changes earlier in life than their nondisabled peersY Psychosocial determinants of health and functional status include the perception of "health," health behavior practice, and access to health resources. The interaction of these elements are central in determining the health and functional status of women with CP (fig 1). The purpose of this investigation was both to establish a preliminary description and to examine associations between the health status elements of self-reported health, associated conditions, secondary conditions, and health behavior variables of women with CP residing in community living arrangements who participated in the Adults with Cerebral Palsy Study. METHODS
Background The Seconda~. Conditions of Adults with Cerebral Palsy" Study was designed to ascertain the health and functional status of men and women (20 years of age and older) with CP and to document common secondary conditions. It consisted of two phases of data collection. In phase one, 95 adults with CP who resided in the developmental center were physically examined by the principal investigator, in addition to undergoing a functional assessment with a physical therapist, and completing a
Health Perception
Secondary Conditions
Health & Health Behavior-.
-- - Co-Morbidities
Function
/ L
Health Resources
l
Associated Conditions
Aging Fig 1. Determinants of health and functional status.
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Table 1: Selected Variables for Analysis Demographics Age, marital status, educational level. CP Type Spastic diplegia, spastic hemiplegia, spastic quadriplegia, dyskinesia/ posturing, and other: ataxia, hypotonia, and mixed. Associated Conditions Mental retardation, learning disabilities, seizure history. Mobility and Functional Independence Ambulation, wheelchair use, self propulsion. Secondary Conditions Pain, bowel problems, bladder problems, hip and back deformities, poor dental health, gastroesophageal reflux, reproductive health issues. Health Behaviors Diet, alcohol use, smoking, exercise. Health Care Hospital stays, emergency room visits, doctor visits, gynecologic and breast examinations. Health Status Self-reported health status, concerns and worries about health, interference with activity.
nutrition section with a study staff member. 27 The institutional medical records of all participants were also reviewed for selected diagnostic testing and medical history information. Phase two of the project involved collecting data on 120 men and women with CP who resided in a variety of residential settings within the community. All participants underwent a physical exam, functional assessment, and completed nutritional information as in phase one. Two new questionnaires were constructed for use with the community group to obtain information on health behaviors, self-perception, and community integration. Medical records for community participants were also reviewed and selected diagnostic testing and medical history information collected. These records were available for 107 of 120 (89%) of the community participants. This paper reports the analysis of selected study variables on the health and functional status of 63 women with CP residing in the community (table 1). The sample was limited to female community residents as the health behavior and health perception variables were collected only on community (phase two) participants. Additionally, women in the community experienced less severe levels of CP and fewer associated conditions than women residing in the developmental center, allowing for an analysis of women who were generally independent in their self care. For example, 100% (45/45) of women in the developmental center were diagnosed with mental retardation; 87% (39 of the 45 women) do not walk. Comparisons have been drawn between the 63 women in the community and the 45 women residing at the center where an association with residence may be useful in better understanding an aspect of health and function of women with CP.
Variables Demographic data (age, sex, race, and education) were collected on all study participants. Since 99% of the study population was white/non-Hispanic, race was not assessed as a categorical variable. The identification of type of CP (spastic diplegia, spastic hemiplegia, spastic quadriplegia, dyskinesia/posturing, and other CP) was determined by the principal investigator during the physical examination. Associated conditions (mental retardation, learning disabilities, seizure history) were self-reported by participants. Vision, heating, and communication impairments were also screened, but not reported in this paper because of both a low rate of occurrence among study community participants and a
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HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
lack of reliable ophthalmological assessment data to document extent of vision impairment. This is illustrated in the assessment by the principal investigator that 84% (53 of 63) of community women used speech and served as the primary respondent when interviewed, and 75% (47 of 63) used speech that was readily understandable by a stranger. Additionally, 1% (1 of 120) of the total community group reported using a hearing aid; and 51% (61 of 120) of the total community reported using glasses. The secondary conditions of CP included in the study protocol were based on those conditions specific to CP reported in the Seconda~' Disability Surveillance System developed by Seekins and colleagues. 26 That list was then refined to adequately document the health and functional status of adults with CP in the anticipated study population. Several secondary conditions of CP (pain, bowel problems, bladder problems, and gastroesophageal reflux) were self-reported by study participants. Pain was defined as having pain in the head, neck, back, arm, hip, leg, or feet. Bowel problems were defined as having bowel incontinence, bowel or bladder incontinence, constipation, or diarrhea. Bladder problems included reports of urinary incontinence and bladder/bowel incontinence. Gastroesophageal reflux was recorded if the participant reported regular "heartburn" before or after a meal. Other secondary conditions were documented through study examiner observation (poor dental health, skin breakdown, musculoskeletal deformities). Musculoskeletal deformities included various hip and/or back deformities in addition to contracture development. The combination of both hip and back deformities (hip and back deformity variable) was also assessed in the analyses. Skin breakdown was noted but not included in this report because of the low rate of occurrence in the community group (2 of 120). Similarly, osteoporosis was noted for only 5% of the entire study population (ll of 215) and was not explored. Frequencies on gender-specific secondary conditions, such as increased spasticity during menstruation, were collected on all participants. Additionally, participants were asked an open-ended question regarding concerns or worries about their health in the past year, and their inability to proceed with planned activities because of health problems. Comorbidities, such as cardiac disease, were very occasionally reported when queried in the physician-directed health interview. Such reports were collected through a review of systems by the principal investigator and documented in office-note fashion. This data has yet to be coded and is not included in this report. Mobility was assessed by a timed test of walking and/or wheelchair propulsion. Participants were asked to rate the level of assistance (none, some, a lot) that they required with activities of daily living (ADL) to ascertain their level of functional independence. Health status and health behaviors (diet, smoking, alcohol use, exercise) were recorded by study staff in a telephone interview with community participants. The number of health care visits during the past year were abstracted from the participant's medical records. Although data on the number of office visits (doctor, dentist) was collected as a continuous variable, the number of visits was collapsed to three categories (0, 1 to 4 visits, 5 to 18 visits), This was done to control for the presence of outliers that skewed the distribution to the left. The frequency of reproductive health care visits was requested as a part of the health interview with the principal investigator.
Table 2: CP Identification of Women in the Community (n = 63)
Type
n (%)
Spastic diplegia Dyskinesia/posturing Spastic hemiplegia Other (ataxia, hypotonia, mixed) Spastic quadriplegia No CP
18 (29) 16 (25) 11 (18) 10 (16) 7 (11) 1 (2)
analyses included frequencies for categorical variables and means, and standard deviations (+) for continuous variables. Cross-tabulations were also performed to assess the relationships between the types of CP, associated conditions, secondary conditions, physical activities, other health behaviors and perception of health. Pearson chi-square tests (X 2) of independence were conducted to test the associations between the variables in the cross-tabulations. The null hypothesis of independence was rejected if the p -< .05 level. The reported p values are two-sided unless otherwise indicated in the text. Use of the word "significant" in this report refers only to statistically significant findings. RESULTS
Demographics The mean age of the 63 women residing in the community was 37.7 (_+ 12.7) years. Eighty-six percent of the female participants in the community were unmarried. When queried about their highest level of education, 25 of 62 of the women (40%) reported some college attendance; 21% (13 of 62) were awarded a 4-year degree or higher. Eighteen percent (11 of 62) of the community women completed a high school education or an equivalency degree. Thirtynine percent (24 of 62) of participants reported attending special education or some type of schooling, while 3% (2 of 62) indicated that they had received no formal schooling in their past. Data on the education of one woman were missing.
CP Identification All the women in the study had been diagnosed as having CP at some point in their life. The principal investigator (a physiatrist) confirmed this diagnosis with all study participants through a physical examination. The CP identification was confirmed for the majority of women (98%). Despite being diagnosed with CP during her life, one woman was clinically determined not to have CP, but rather poor motor planning associated with limited cognitive function. All of the women met the study eligibility requirement of being diagnosed with CP sometime in their life and were kept in the analyses, with the exception of analyses that assessed CP type (as determined by the principal investigator) and its association with the associated conditions, and secondary conditions. In this case, the woman without CP was eliminated to allow for analyses that would yield the most meaningful information about the association of CP type with the other variables. Participants presented with mild to moderate CP as defined by limb involvement and quality of muscle tone (table 2). Spastic diplegia (29%) was the most frequently reported type of CP followed by dyskinesia/posturing (25%). Most women experienced some degree of spasticity (62%).
Data Analysis
Associated Conditions
Statistical analyses were carried out using the Statistical Package for the Social Sciences (SPSS). ~ Descriptive and exploratory analytical analyses were conducted. The descriptive
The associated conditions assessed in this report included mental retardation, learning disabilities, and seizure history. Forty percent (23 of 58) of the community group reported a
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HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
Table 3: Frequency of Associated Conditions of Women With CP Residing in the Community Associated Condition
n/Data Available* 1%)
Mental retardation Learning disabilities Seizure disorder
20/58 (34) 15/58 (26) 23/62 (40)
* Data were missing for mental retardation & learning disabilities (n = 5), and for seizure disorder (n = 1).
history of seizures, while 34% (20 of 62) had mental retardation and 26% (15 of 58) had learning disabilities (table 3). The associated conditions were found to be independent (p > .05) of the type of CP based on the Pearson X2 test of independence.
Mobility & Functional Independence Sixty-five percent (41 of 60) of the women with CP in the community were able to walk, compared with 11% of female participants who resided in the developmental center (X2 [1] = 33.4, p < .000). Of the 19 women who reported being nonambulatory, 53% (10 of 19) indicated that they had walked sometime during their life. Twenty-nine of 63 women (46%) reported current use of a wheelchair. Nearly half (45%) of women who used a wheelchair, self-propelled. More than 50% of the women residing in the community required no assistance with eating, bathing, dressing, grooming and toileting. Table 4 describes these findings.
Secondary Conditions Women with CP residing in the community reported various secondary conditions when interviewed about their health, including those specific to reproductive health (table 5). Thirtyfive percent reported increased spasticity during menstruation (22 of 63), and 24% indicated increased urinary incontinence (15 of 63) while having their period. The most frequent secondary conditions among women with CP residing in the community was pain (84%), 53 women out the 63 reported pain in at least one area of the body. Pain limited the activities of 56% (35 of 63) of the women. Of the women that experienced pain (n = 53), the most common sites of pain were the head (28%), back (26%), and arm (23%). Musculoskeletal deformities were the second most frequently reported secondary condition of the community women with CP. Seventy-five percent (44 of 59) of the women had some type of contracture. Most contractures of this group (n = 44) were in the ankle (61%), followed by the neck (45%) and hip (43%). Twenty-five out of 62 (40%) women reported having at least one hip deformity (windblown hip, pelvic obliquity, and/ or hip contracture). Specific hip deformities reported included pelvic obliquity (27%) and windblown hip (15%). Thirty-two of 61 community women also experienced a back deformity of either kyphosis or scoliosis (53%). Lastly, leg length difference was seen in 44% (27 of 62) of the women. Additionally, 59% (35 of 59) of the women reported having both a hip and back Table 4: Frequency of Levels of Assistance With Activities of Daily Living (n 63) Activity of Daily Living Eating Bathing Dressing Grooming Toileting
Required No Assistance, n (%) 46 36 34 34 41
(73) (57) (54) (54) (65)
Required Some Assistance, n (%) 7 8 12 12 4
(11) (13) (19) (19) (6)
Required Much Assistance, n (%) 10 19 17 17 18
(16) (30) (27) (27) (29)
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Table 5: Secondary Conditions of Women With CP (n - 63) Secondary Condition
n (%)
Pain Hip and back deformities Bowel problems Bladder problems Poor dental health Increased spasticity during menstruation Gastroesophageal reflux Increased incontinence during menstruation
53 (84) 35 (59)* 35 (56) 31 (49) 26 (43) 22 (35) 17 (28) 15 (24)
* n = 59 women.
deformity. Other reported secondary conditions included: bowel problems (56%), bladder problems (49%), poor dental health (43%), and gastroesophageal reflux (28%). In the assessment of relationships between secondary conditions and other selected variables, associated conditions were found to be independent of having both hip and back deformities, and experiencing bowel or bladder disorders. A significant association was found between poor dental hygiene and seizure history (X2 [1] = 4.3, p = .03), possibly resulting from the deleterious effect of anticonvulsant medication on the health of gums and teeth. There were also significant relationships between gastroesphageal reflux and mental retardation (X2 [11 = 4.2, p = .04), pain and mental retardation (X2 [1] = 4,3, p = .037), and bladder problems and mental retardation (X: [1] = 4.9, p -- .027). The only secondary condition associated with CP type was hip deformities (X 2 [5] = 11.4, p = .029); all other secondary conditions were independent of the participant's type of CP (p > .05). Twenty-four percent (6 of 25) of the women reporting hip deformities (windblown hips, pelvic obliquities, and/or contractures) were women with spastic diplegia, and 24% (6 of 25) were women with spastic quadriplegia. Women with spastic hemiplegia experienced 16% (4/25) of hip deformities, as did those with dyskinesia/posturing (4 of 25). Gastroesophageal reflux was the only secondary condition significantly associated with age (t [581 = 3.23, p = .002).
Health Behaviors Participants generally exhibited positive health behaviors. Fifty-two percent (31 of 60) of women self-reported that they watched what they ate and tried to eat a balanced diet. Ninetyeight percent of the women did not smoke (59 of 60); similarly, 95% had not consumed alcoholic beverages in the past month (57 of 60). Fourteen of the 60 women (23%) reported that they consumed alcohol on occasion. No women drank more than three drinks on such occasions. Lastly, 83% (52 of 60) of participants reported engagement in at least one common physical activity, including swimming, walking, use of exercise equipment, and weight lifting. No physical activity information was reported on three women (table 6). Significant associations were observed between walking and participating in the above listed physical activities (X2 [1] = 6.3, p = .011), and between wheelchair use (yes/no) and participation in the common physical activities (X2 [1] = 15.6, p = .00029). Women who did not walk, or indicated that they used a wheelchair, were less likely to exercise. Engagement in at Table 6: Common Physical Activities of Women With CP [n Physical Activity
Swimming Walking for exercise Use of exercise equipment Weight lifting
60)
n (%)
38 35 28 23
(63) (58) (47) (38)
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HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
least one of the physical activities was independent (p > .05) of the CP type, and was independent of the associated conditions of mental retardation, learning disabilities, and having a history of seizures. It was found in the Pearson X2 test of independence that participation in physical activity was associated with both back deformity (X2 [1] = 7.9, p = .0047) and hip and back deformity (X2 [1] = 5.59, p = .018), but not with hip deformity alone (X2 [1] = .1 I, p = .73). Of the women with back deformities, 69% (22 of 32) engaged in one of the common physical activities, compared with 97% (28 of 29) of the women without a back deformity. Additionally, 71% (25 of 35) of women with both hip and back deformities engaged in physical activity, compared with 96% (23 of 24) of women without these deformities. In questioning further about exercise, participants were asked if they had stretched or done range-of-motion (ROM) exercises in the past week. Fifty-seven percent (34 of 60) of the women reported that they did not engage in these activities. The 43% of participants (26 of 40) who reported stretching or doing ROM exercises in the previous week had exercised for a mean of 3.8 (_+ 2.4) days during that week. Eight of the 26 women (31%) reported exercising all 7 days of the week, while four women of the 26 (15%) reported exercising for only 1 day of the previous week. Twenty-six of 60 participants (43%) also reported engaging in aerobic exercise. Of these 26 participants, 14 women (54%) reported that they exercised for 30 minutes or more. In a typical week, participants reported that they performed aerobic exercises for a mean of 3.0 (_+ 1.6) days. The associations between performing ROM exercises (no/yes) and secondary conditions were assessed. Back deformities, hip or back deformities, and gastroesophageal reflux were independent of exercising. The presence of hip deformities was associated with performing ROM (X2 [1] = 3.87, p = .049). Those with reported hip deformities were more likely to engage in ROM than those without these complaints. Reported pain and bowel disorders were not associated with ROM exercising (p > .05).
Health Care The medical records of participants were reviewed to determine the extent of health care use by adults with CP. Fortyfour women (73%) made at least one doctor visit in the past year. Of the 60 women for whom health care data was collected (abstract data missing for 3 women), the mean number of visits in the past year was 4.1 (_+ 4.5) with a median of 3.0. Only 7 women (12%) spent at least one night in the hospital, and 12 women (20%) used emergency room services in the past year. In the matter of preventive reproductive health care, 92% (58 of 63) of the women recalled having had at least one gynecological examination in their life; while 18% (11 of 63) reported having an exam in the past year. Only 22% (14 of 63) of the women reported doing a breast self-examination, or having someone do one for them, in the past month, although 58% (37 of 63) indicated that they sometimes do or have a breast examination. Thirty-seven women of 60 (62%) had made at least one trip to the dentist in the past year (abstract data missing for 3 women). Among those reporting dental visits, the mean was 2.4 (_+ 1.9) visits in the past year. Doctor visits (0, 1 to 4 visits, 5 to 18 visits) and the presence of individual secondary conditions were found to be independent in Pearson X2test of independence. Surprisingly, no statistical significant relationship was observed between a participant's dental health and the number of dentist visits. Age and doctor
Arch Phys Med Rehabil Vol 78, December 1997
visits in the past year were not significantly correlated (r = . 19, p = .068).
Self-Reported Health Status Community participants were queried about selected health behaviors and also asked to report on their perceived health status. When asked, 52 of 60 (87%) women with CP in the community group affirmed that they considered themselves healthy despite their disability. Six women (10%) believed that they were somewhat healthy, and one woman did not think of herself as healthy. Self-reported health was not collected on three women in the community. Although 87% (52 of 60) of women in the community with CP perceived themselves as healthy despite their disability, 39 of the 63 (62%) community women still reported concerns and worries about their health during the past year. Sixty-seven percent (42 of 63) of the women were able to articulate a specific problem or issue that was causing them distress. There were few anecdotal reports of common medical problems not associated with CP (comorbidities), such as cardiac disease, diabetes, hypertension, or cancer. The complaints that participants recalled in the health interview were primarily musculoskeletal in origin or concerned health behaviors or lifestyle, such as weight control and medication use. The presence of a secondary condition was independent of self-reported health status based on Pearson X2 test of independence (p > .05). Women were also asked if their participation in planned activities was limited because of health problems. Twenty-three of 63 (37%) women affirmed that health problems had interfered with their planned activities in the past year. Seventeen of 63 (27%) women were able to recall the problems or events that were disruptive, such as hospitalizations, accidents, and pain. DISCUSSION The findings of this study reflect the health status and health behaviors of women with mild to moderate CP living in a variety of residential arrangements within the community. These women perceive themselves as healthy despite their disability (87%), and did not report comorbidities as health concerns in the past year. Similarly, 87% of the general population surveyed across the United States rated their health as good to excellent as recorded by the 1993 Behavioral Risk Factors Surveillance System. 2s These findings support the conclusions that adults with disabilities, or chronic conditions, define health as more than their functional level and primary disabling condition.9.29 This study showed that there were significant relationships between the examined health status elements of self-reported health status, associated conditions, secondary conditions, and health behaviors. The associated conditions of women in the community were independent of the type of CP that they were identified by in the study. This may be the result of the high functional status of women in this report in which residual effects of the CP are minimal. Conversely, women in the developmental center experienced more associated conditions, which supports this conclusion. Women with CP living in the community experience various secondary conditions. Pain is the condition reported by most women in this sample, and back and hip deformities are the second most common secondary condition. Other studies looking at secondary conditions of adults with CP also report pain, musculoskeletal problems, and related mobility concerns as common secondary conditions in this population.3°31 Osteoporosis (ie, secondary osteoporosis of immobilization) is a common secondary condition among persons with mobility impairments, yet was only reported in 5% of the entire study group
HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
(n = 215), and usually only after an extremity fracture was found. Women with CP need to be queried about secondary conditions during routine office visits and informed of their risk for secondary condition development, especially those conditions relating to potential orthopedic complications. The significant relationship between poor dental health and having a seizure history supports the hypothesis that anticonvulsant medication has a negative effect on dental and oral health. Such a relationship highlights the importance of informing both consumers and dental practitioners about the effects of medication on the dental health of persons with disabilities. Steifel et a132 question whether persons with severe disabilities also have a lower resistance to periodontal irritants because of issues related to compromised health. Further exploration of the dental health of adults with CP is needed, particularly regarding lifelong medication use. The significant associations noted between mental retardation and pain, mental retardation and gastroesophageal reflux, in addition to mental retardation and bladder problems, may suggest a relationship between the ability to report a medical condition or problem and the actual presence of a secondary condition, although further assessment must be done to assure that such relationships are not spurious. There is also the traditionally held belief that the presence of mental retardation negates the self-report of a medical problem or condition. The self-report of medical issues by any population, however, may be wrought with reliability and validity problems. 33 Regarding the issues of cognitive impairment, Kaplan and colleagues34 write that often persons with mental retardation or dementia are assumed to be incompetent in medical decision-making. They suggest that diagnosis is not the critical factor in determining competence, but that each case needs to be reviewed individually. The self-reports by women with CP and mental retardation in this study were viewed as representative of their experiences based on the appropriateness of responses in the physical examination, as determined by the principal investigator. Additionally, proxy respondents were used by respondents for whom difficulty in answering study questions was acknowledged before their visit to the study setting. The finding of independent relationships between self-reported health status and secondary conditions indicates the complexity of health status assessment. Although a woman with CP may have a secondary condition, she may not necessarily report that she is in poor or failing health. Women in this study engaged in health-promoting behaviors such as abstinence from smoking and from consuming alcoholic beverages in the past month, eating a balanced diet, and engaging in physical activity. The protective effect of such health-promoting behaviors on the health and function of women with CP and other disabilities has yet to be adequately documented in the medical literature. The determinants for engagement in health-promoting behaviors have been investigated for typical populations of women,3538 but is only in the preliminary stage of investigation for women with disabilities.19'2° The significant association of the ability to walk and participation in physical activity, and of wheelchair use (yes/no) and physical activity participation, show the importance of physical function in exercise-based health promotion activities. These findings suggest that the use of mobility devices and other adaptive equipment are important considerations in designing exercise interventions. The significant association between stretching and/or doing ROM exercises and hip deformity may be suggestive of the therapeutic need for stretching in the management of a hip deformity. The subsequent reinforcement of this
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need may occur through the encouragement of a physical therapist or by personally observed benefit from engaging in the behavior. Similarly, the significant relation between musculoskeletal deformity and engagement in physical activity, such as with back deformity, may indicate the importance of general physical activity as a therapeutic intervention for certain musculoskeletal deformities. It is also noteworthy that 43% of the women in this study reported engagement in either stretching/ROM or aerobic exercise. This is similar to the 46% of disabled women who reported exercising in the study by Nosek et al. 2° Henderson and Bendini39 determined that women with mobility impairments held different attitudes toward physical activity involvement. Further investigation of the reasons why women with physical disabilities engage in physical activity would assist in the design of interventions that facilitate life-long adherence to exercise behavior. Some initial trends in health care use by women with CP who reside in the community were observed in these findings. Health care utilization data allow for determination of who receives medical care, the reasons for seeking care, and the quantity and type of medical care consumed by a population,m° For example, the 1995 National Ambulatory Care Survey 41 reports that females made 3.1 office visits to doctors in 1995, while males made 2.2. visits. Similarly we found that the women in our study made a median of 3.0 doctor visits in the past year. This finding is seemingly contrary to a recent report of persons with chronic conditions, including both impairments and chronic disease, consuming high quantities of health care services and substantially contributing to rising health care expenditures in this country.42 Additionally, it is notable that associated conditions and secondary conditions of CP were independent of doctor visits. These relationships are counter to the presumption that the frequency of either associated conditions, or secondary conditions, would have an impact on health care utilization. The unforeseen nature of these findings calls for future study of the reasons why women with CP seek routine health care. Preventive health care is an important facet of routine health care. The 1988 National Survey of Family Growth 43 found that 67% of the women (18 to 44 years of age) who completed the survey had a Pap test or pelvic examination in the past 12 months; the same number also had a breast examination in the past 12 months. This stands in contrast to the 18% of women with CP in this small sample who recalled having a gynecological exam in the past year and the 22% who had a breast examination in the past month. Although 92% of the women in the community group recalled having at least one gynecological exam ever, the need for routine preventive gynecological health care cannot be underestimated for women with CP. The cause of low recall of annual gynecological exams warrants further investigation, particularly if barriers exist to the access of these services that prevent women from receiving needed annual examinations. Nosek s identifies five categories of primary care issues of women with severe physical disabilities: physical access to services, information, attitudes, finances, and personal assistance. These areas represent entry points into a service delivery system; a deficit in any one area constitutes a barrier to service. Barriers may be either individual or structural, and often there may be an intersection between the two types.44 Physical or architectural harriers in the structural category that are commonly cited by women with physical disabilities include lack of adequate ramps into health care facilities and improper examining tables, especially for gynecological examinations. Other
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HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
structural barriers to service include transportation, time, distance, availability and organization of health services, discrimination, and the provider-consumer relationship. 7'8'42'43Individual barriers include education, income, age, values, motivation, ability, self-worth, social support, cultural background, and family characteristics. 7"45 The determination of the relationship between health status and barriers experienced by w o m e n with CP would be useful to better understand the health behaviors of w o m e n with CP, but was not under the purview of this study. Another limitation of this study is the small sample size. It would be advantageous to have a larger sample of the population of w o m e n with CP to draw more generalizable conclusions about the data. A second concern regarding the utility of these study data is that only a small n u m b e r of questions were asked about health promotion practices and beliefs of participants, and these questions were primarily descriptive in orientation. Therefore, the findings of this report provide a basic understanding of the health promotion issues of w o m e n with CP and a starting point for future research on the topic. This study is an important contribution to the literature on w o m e n with disabilities. It offers a preliminary profile of the positive health status of w o m e n with CP and initial trends in their health behaviors and secondary conditions. Further analyses are warranted to more clearly determine the nature of the factors, and their interactions, that comprise the health status of w o m e n with CP. Additionally, health care utilization and other interventions that affect the health status of w o m e n with CP should be examined to better understand why w o m e n with CP may not participate in necessary health promotion activities that could ameliorate the development of secondary conditions. The fundamental issue of barriers to health care and health promotion activities must continue to be addressed by service providers and researchers if any strides are to be made toward improving the health status of all w o m e n with CP. References
1. US Department of Health & Human Services. Healthy people 2000: national health promotion and disease prevention objectives. DHHS Pub No. (PHS) 91-50213. Washington (DC): Government Printing Office; 1991. 2. Mausner JS, Kramer S. Epidemiology: an introductory text. Philadelphia (PA): WB Saunders; 1985. 3. Trieschmann RB. Aging with a disability. New York: Demos Publications; 1987. 4. Murray RB, Zenter JP. Nursing concepts for health promotion. Englewood (N J): Prentice Hall, Inc; 1985. 5. Phillips MJ. Damaged goods: oral narratives of the experience of disability in American culture. Soc Sci Med 1990;30:849-57. 6. Keith RA. Functional status and health status. Arch Phys Med Rehabil 1994;75:478-83. 7. Stuifbergen AK, Becker H, Sands D. Barriers to health promotion for individuals with disabilities. Fam Community Health 1990; 13: 11-22.
8. Nosek MA. Point of view: primary care issues for women with severe physical disabilities. J Women Health 1992;1:245-8. 9. Stuifbergen AK, Becker HA, Ingalsbe K, Sands D. Perceptions of health among adults with disabilities. Health Values 1990; 14:1825. 10. Brandon JE. Health promotion and wellness in rehabilitation services. J Rehabil 1985;Oct-Dec:54-8. 11. Teague ML, Cipriano RE, McGhee VL. Health promotion as a rehabilitation service for persons with disabilities. J Rehabil 1990; Jan-Mar:52-6. 12. Brooks NA. Opportunities for health promotion: including the chronically ill and disabled. Soc Sci Med 1984;9:405-9. 13. Stuifbergen AK, Becker HA. Predictors of health-promoting lifestyles in persons with disabilities. Res Nurs Health 1994; 17:3-13.
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14. Becker HA, Schaller J. Perceived health and self-efficacy among adults with cerebral palsy. J Rehabil 1995;Apr-June:36-42. 15. Patrick DL. Rethinking prevention for people with disabilities part I: a conceptual model for promoting health. Am J Health Promot 1997; 11:257-60. 16. Patrick DL, Richardson M, Starks HE, Rose MA, Kinne S. Rethinking prevention for people with disabilities part II: A framework for designing interventions. Am J Health Promot 1997; 11:261-3. 17. Marge M. Health promotion for persons with disabilities: moving beyond rehabilitation. Am J Health Promot 1988;2:29-44. 18. Pope A. Preventing secondary conditions. Ment Retard 1992;30: 347-54. 19. Turk MA, Weber RJ, Geremski CA, Pavin M, Brown C, Segore S. Health and functional characteristics of women with cerebral palsy [abstract]. Dev Med Child Neurol 1996;38 Suppl 74:19. 20. Nosek MA, Rintala DH, Young ME, Foley CC, Howland C, Chanpong GF, et al. National study of women with physical disabilities (draft report). Houston (TX): Baylor College of Medicine; 1996. 21. Institute of Medicine. Pope AM, Tarlov AR, editors. Disability in America: towards a national agenda for prevention. Washington (DC): National Academy Press; 1991. 22. Institute of Medicine. Brandt EN, Pope AM, editors. Enabling America: assessing the role of rehabilitation science and engineering. Washington (DC): National Academy Press; 1997. 23. Turk MA. Attaining and retaining mobility: clinical issues. In: Lollar DJ, editor. Preventing secondary conditions associated with spina bifida or cerebral palsy: proceedings & recommendations of a symposium. Washington (DC): US Department of Health & Human Services & Spina Bifida Association of America; 1994. p. 42-53. 24. Turk MA, Geremski CA, Pavin M. What you need to know about the cerebral palsy secondary condition project (Brochure). Syracuse (NY): SUNY Health Science Center at Syracuse; 1994. 25. Turk MA, Overeynder JC, Janicki MP, editors. Uncertain futures-aging & cerebral palsy: Clinical concerns. Albany (NY): New York State Developmental Disabilities Planning Council; 1995. 26. Seekins T, Smith N, McCleary T, Clay J, Walsh J. Secondary disability prevention: Involving consumers in the development of a public health surveillance instrument. J Disabil Pol Stud 1990;1: 21-36. 27. Turk MA, Geremski CA, Rosenbaum PF. Secondary conditions of adults with cerebral palsy (final report). Syracuse (NY): SUNY Health Science Center at Syracuse; 1997. 28. 1993 Behavioral risk factors surveillance system. MMWR Morbid Mortal Wkly Rep 1995;44:195-200. 29. Williams R. Concepts of health: an analysis of lay logic. Sociology 1983; 17:185 -205. 30. Murphy K, Molnar GE, Lankasky K. Medical and functional status of adults with cerebral palsy. Dev Med Child Neurol 1995; 37:107584. 31. Seekins T, Smith N, McCleary T, Clay J, Walsh J. Secondary disability surveillance report for 1989: cerebral palsy. Bozeman (MT): University of Montana; 1989. 32. Steifel DJ, Truelove EL, Persson RS, Chin MM, Mandel LS. A comparison of oral health in spinal cord injury and other disability groups. Spec Care Dentistry 1993;13:229-235. 33. McDowell I, Newell C. Measuring health: a guide to rating scales and questionnaires. New York: Oxford University Press; 1996. 34. Kaplan KH, Strang JP, Ahmed I. Dementia, mental retardation and competency to make decisions. Gen Hosp Psychiatr 1988; 10:3858. 35. Duffy ME. Determinants of health promotion in midlife women. Nurs Res 1988;36:358-62. 36. Ebrahim S, Rowland L. Towards a new strategy for health promotion for older women: determinants of physical activity. Psychol Health Med 1996; 1:29-40. 37. Gillis A, Perry A. The relationships between physical activity and health-promoting behaviours in midlife women. J Adv Nurs 1991; 16:299-310. 38. Gill AA, Veigl VL, Shuster JJ, Notelovitz M. A well woman's health maintenance study comparing physical fitness and group support programs. Occup Ther J Res 1984;4:287-308. 39. Henderson KA, Bedini KA. "I have a soul that dances like Tina
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Turner but my body can't": physical activity and women with mobility impairments. Res Q Exerc Sport 1995; 66:151-61. 40. Aday L. Indicators and predictors of health services utilization. In: Williams S J, Torrens PR, editors. Introduction to health services. Albany (NY): Delmar Publishers Inc.; 1993. p. 46-70. 41. Woodell DA. National ambulatory medical care survey: 1995 summer. Advance Data 286, National Center for Health Statistics: May 8, 1997. Hyattsville (MD): National Center for Health Statistics; 1997. 42. Hoffman C, Rice D, Sung H. Persons with chronic conditions: their prevalence and costs. JAMA 276:1473-9.
43. Wilcox LS, Mosher WD. Factors associated with obtaining health screenings among women of reproductive age. Public Health Reports 1993;76-86. 44. Melnyk KAM. Barriers: a critical review of recent literature. Nurs Res 1988;37:196-201. 45. DeJong G. Primary care for persons with disabilities: an overview of the problem. Am J Phys Med Rehabil 1997:76 Suppl:S2-S8.
Supplier a. SPSS, Inc., 44 N. Michigan Avenue, Chicago, IL 60611.
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The Health Status of Women With Cerebral Palsy Margaret A. Turk, MD, Cynthia A. Geremski, MPA, Paula F. Rosenbaum, MS, Robert J. Weber, MD ABSTRACT. Turk MA, Geremski CA, Rosenbaum PF, Weber RJ. The health status of women with cerebral palsy. Arch Phys Med Rehabil 1997;78 Suppl 5:S-10-S-17. Objective: To determine preliminary associations between collected health status variables of women with cerebral palsy (CP) residing in the community. Design: Cross-sectional study using survey research. Participants: Sixty-three women residing in the community were administered the Telephone Questionnaire when contacted to arrange their visit to the study site located within the medical clinic of a local developmental services office. During the course of their visit to the study site, all 63 women completed the CP Study Protocol, in addition to the Mail-in Questionnaire upon completion of study participation. The women ranged in age from 20 to 74 years. Main Outcome Measures: Health status, consisting of four elements: (1) self-reported health status; (2) associated conditions; (3) secondary conditions; and (4) health behaviors (alcohol and tobacco use, physical activity, diet, and health care visit). Results: Women with CP residing in community living arrangements perceived themselves as healthy. The majority of women did not smoke (98%), had not consumed alcohol in the previous month (95%), and ate a balanced diet (52%). Participants also reported engaging in common physical activities (83%) and stretching and doing range-of-motion exercises in the previous week (43%), and participation in aerobic exercise in the previous week (43%). Sixty-eight percent (41 of 60) of the women walked, and more than 50% of the women did not require assistance with activities of daily living. The ability to walk and the use of a wheelchair were associated with participation in the common physical activities. The women reported associated conditions of mental retardation (34%), learning disabilities (26%), and a seizure history (40%). Additionally, the women in the sample reported the occurrence of several secondary conditions common among individuals with CP, including pain (84%), hip and back deformities (59%), bowel problems (56%), bladder problems (49%), poor dental health (43%), and gastroesphageal reflux (28%). Poor dental health was associated with a history of seizures, and associations were also found between pain and mental retardation, and between gastroesophageal reflux and mental retardation. Conclusions: Women with CP residing in the community perceived themselves as healthy, and the observed health status measures (eg, self-reported health, associated conditions, secondary conditions, and selected health behaviors) support this concept. For the most part, independent relationships were found between several of these measures indicating no significant association among the variables. Where associations were found, however, such as between walking and participation in From the Department of Physical Medicine and Rehabilitation, State University of New York (SUNY) Health Science Center at Syracuse, NY. Supported by grant R04/CCR208516, Centers for Disease Control and Prevention, Atlanta, GA. Reprint requests to Margaret A. Turk MD, Department of Physical Medicine & Rehabilitation, SUNY Health Science Center, 750 East Adams Street, Syracuse, NY 13210. © 1997 by the American Congress of Rehabilitation Medicine 0003-9993/97/7812-000353.00/0
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physical activity, further investigation is warranted for a better understanding of their ramifications in the design of health promotion activities for women with CP.
© 1997 by the American Congress of Rehabilitation Medicine HE PUBLIC HEALTH enterprise is dedicated to achieving optimal health status for the maximal number of citizens, including persons with disabilities.1 A challenge that public health officials face in implementing this goal is understanding the myriad of perceptions of what constitutes "good" health. Illness, or the absence of health, often figures prominently in traditional medical definitions of health. Other definitions portray "healthy" as a state of paramount wellness, such as the United Nations World Health Organization defining health as "the state of complete physical, mental, and social well-being and not merely the absence of disease. ''2 The definition of health as a bipolar entity of "have" or "do not have" is problematic in health status assessment? It does not allow for a gradation of illness and wellness in a person's experience.4 An examiner may label a person "healthy" or "not healthy" on the basis of what he or she deems as complete well-being. Persons with disabilities have historically been portrayed as not healthy for this reason. 5 An important, but only newly investigated, topic in rehabilitation is the determination of health status in persons with disabilities. Research in this area routinely has been limited to the study of the effect of impairment on functional ability. This narrow perspective ignores the fact that persons with disabilities are subject to the same health risks as those without disabilities in society, such as dietary indiscretions, physical inactivity, drug abuse, and stressJ Keith6 notes that health status incorporates all indicators of health, including, but not limited to functional status. In a study by Stuifbergen and colleagues,7 the majority of 135 adults with disabilities reported that they were in good health despite their disabilities and the functional impact of those disabilities. There is little evidence on what elements of health status are important considerations for persons with disabilities. Similarly, no literature exists on the effects of race, class, and gender on health status of persons with disabilities. It can be surmised that the health status of women with disabilities is affected by issues of gender. As with all women, they often face general health care that is not specific to the particular needs of female patients, such as appropriate birth control counseling. As persons with disabilities, they must also contend with segregated, inaccessible, and sometimes inappropriate health services. 8 In addition to lack of access to preventive medical care, women with disabilities often lack the financial means and social support to effectively utilize community health promotion resources, such as gyms, psychological counseling, and weight loss centers. Little is known about the health behaviors of women with disabilities, or how women with disabilities perceive their own health status. Professionals in the fields of rehabilitation, nursing, public health, and social work have written about the importance of health promotion for persons with disabilities,9-j4 particularly for the prevention of secondary conditions, FS-18yet only a few
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HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
preliminary investigations have focused on women with disabilities. 19"2°Secondary conditions are compromising to the health status of all persons with disabilities, depending on the frequency and magnitude of their occurrence.2~-23 A secondary condition is a disease, injury, functional limitation, disability handicap, or impairment that occurs at any point of one's lifespan when the primary disability either is a risk factor for that secondary condition or alters the standard intervention for prevention or treatment of any health condition.24 Secondary conditions common in cerebral palsy (CP) include pain, various musculoskeletal deformities, bowel and bladder problems, poor dental health, and gastroesphageal refluxY "26 Women with disabilities often experience unique secondary conditions related to their reproductive health, as is the case for women with CP, who may have increased spasticity and/or incontinence during menstruation. Other physiologic considerations of health status include the presence of associated conditions and comorbidities. Associated conditions are the residual effects of an injury or pathology. Persons with CP may experience associated conditions such as seizures, mental retardation, learning disabilities, and various sensory problems resulting from the insult to the central nervous system, the pathology from which the primary disabling condition is derived. Comorbidities are disease processes unrelated to the primary disability. For example, a woman with CP may have diabetes, which would affect her health status and is unrelated to CP. Women with CP also experience the age-related changes that everyone expects with increasing age, yet may notice such changes earlier in life than their nondisabled peersY Psychosocial determinants of health and functional status include the perception of "health," health behavior practice, and access to health resources. The interaction of these elements are central in determining the health and functional status of women with CP (fig 1). The purpose of this investigation was both to establish a preliminary description and to examine associations between the health status elements of self-reported health, associated conditions, secondary conditions, and health behavior variables of women with CP residing in community living arrangements who participated in the Adults with Cerebral Palsy Study. METHODS
Background The Seconda~. Conditions of Adults with Cerebral Palsy" Study was designed to ascertain the health and functional status of men and women (20 years of age and older) with CP and to document common secondary conditions. It consisted of two phases of data collection. In phase one, 95 adults with CP who resided in the developmental center were physically examined by the principal investigator, in addition to undergoing a functional assessment with a physical therapist, and completing a
Health Perception
Secondary Conditions
Health & Health Behavior-.
-- - Co-Morbidities
Function
/ L
Health Resources
l
Associated Conditions
Aging Fig 1. Determinants of health and functional status.
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Table 1: Selected Variables for Analysis Demographics Age, marital status, educational level. CP Type Spastic diplegia, spastic hemiplegia, spastic quadriplegia, dyskinesia/ posturing, and other: ataxia, hypotonia, and mixed. Associated Conditions Mental retardation, learning disabilities, seizure history. Mobility and Functional Independence Ambulation, wheelchair use, self propulsion. Secondary Conditions Pain, bowel problems, bladder problems, hip and back deformities, poor dental health, gastroesophageal reflux, reproductive health issues. Health Behaviors Diet, alcohol use, smoking, exercise. Health Care Hospital stays, emergency room visits, doctor visits, gynecologic and breast examinations. Health Status Self-reported health status, concerns and worries about health, interference with activity.
nutrition section with a study staff member. 27 The institutional medical records of all participants were also reviewed for selected diagnostic testing and medical history information. Phase two of the project involved collecting data on 120 men and women with CP who resided in a variety of residential settings within the community. All participants underwent a physical exam, functional assessment, and completed nutritional information as in phase one. Two new questionnaires were constructed for use with the community group to obtain information on health behaviors, self-perception, and community integration. Medical records for community participants were also reviewed and selected diagnostic testing and medical history information collected. These records were available for 107 of 120 (89%) of the community participants. This paper reports the analysis of selected study variables on the health and functional status of 63 women with CP residing in the community (table 1). The sample was limited to female community residents as the health behavior and health perception variables were collected only on community (phase two) participants. Additionally, women in the community experienced less severe levels of CP and fewer associated conditions than women residing in the developmental center, allowing for an analysis of women who were generally independent in their self care. For example, 100% (45/45) of women in the developmental center were diagnosed with mental retardation; 87% (39 of the 45 women) do not walk. Comparisons have been drawn between the 63 women in the community and the 45 women residing at the center where an association with residence may be useful in better understanding an aspect of health and function of women with CP.
Variables Demographic data (age, sex, race, and education) were collected on all study participants. Since 99% of the study population was white/non-Hispanic, race was not assessed as a categorical variable. The identification of type of CP (spastic diplegia, spastic hemiplegia, spastic quadriplegia, dyskinesia/posturing, and other CP) was determined by the principal investigator during the physical examination. Associated conditions (mental retardation, learning disabilities, seizure history) were self-reported by participants. Vision, heating, and communication impairments were also screened, but not reported in this paper because of both a low rate of occurrence among study community participants and a
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HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
lack of reliable ophthalmological assessment data to document extent of vision impairment. This is illustrated in the assessment by the principal investigator that 84% (53 of 63) of community women used speech and served as the primary respondent when interviewed, and 75% (47 of 63) used speech that was readily understandable by a stranger. Additionally, 1% (1 of 120) of the total community group reported using a hearing aid; and 51% (61 of 120) of the total community reported using glasses. The secondary conditions of CP included in the study protocol were based on those conditions specific to CP reported in the Seconda~' Disability Surveillance System developed by Seekins and colleagues. 26 That list was then refined to adequately document the health and functional status of adults with CP in the anticipated study population. Several secondary conditions of CP (pain, bowel problems, bladder problems, and gastroesophageal reflux) were self-reported by study participants. Pain was defined as having pain in the head, neck, back, arm, hip, leg, or feet. Bowel problems were defined as having bowel incontinence, bowel or bladder incontinence, constipation, or diarrhea. Bladder problems included reports of urinary incontinence and bladder/bowel incontinence. Gastroesophageal reflux was recorded if the participant reported regular "heartburn" before or after a meal. Other secondary conditions were documented through study examiner observation (poor dental health, skin breakdown, musculoskeletal deformities). Musculoskeletal deformities included various hip and/or back deformities in addition to contracture development. The combination of both hip and back deformities (hip and back deformity variable) was also assessed in the analyses. Skin breakdown was noted but not included in this report because of the low rate of occurrence in the community group (2 of 120). Similarly, osteoporosis was noted for only 5% of the entire study population (ll of 215) and was not explored. Frequencies on gender-specific secondary conditions, such as increased spasticity during menstruation, were collected on all participants. Additionally, participants were asked an open-ended question regarding concerns or worries about their health in the past year, and their inability to proceed with planned activities because of health problems. Comorbidities, such as cardiac disease, were very occasionally reported when queried in the physician-directed health interview. Such reports were collected through a review of systems by the principal investigator and documented in office-note fashion. This data has yet to be coded and is not included in this report. Mobility was assessed by a timed test of walking and/or wheelchair propulsion. Participants were asked to rate the level of assistance (none, some, a lot) that they required with activities of daily living (ADL) to ascertain their level of functional independence. Health status and health behaviors (diet, smoking, alcohol use, exercise) were recorded by study staff in a telephone interview with community participants. The number of health care visits during the past year were abstracted from the participant's medical records. Although data on the number of office visits (doctor, dentist) was collected as a continuous variable, the number of visits was collapsed to three categories (0, 1 to 4 visits, 5 to 18 visits), This was done to control for the presence of outliers that skewed the distribution to the left. The frequency of reproductive health care visits was requested as a part of the health interview with the principal investigator.
Table 2: CP Identification of Women in the Community (n = 63)
Type
n (%)
Spastic diplegia Dyskinesia/posturing Spastic hemiplegia Other (ataxia, hypotonia, mixed) Spastic quadriplegia No CP
18 (29) 16 (25) 11 (18) 10 (16) 7 (11) 1 (2)
analyses included frequencies for categorical variables and means, and standard deviations (+) for continuous variables. Cross-tabulations were also performed to assess the relationships between the types of CP, associated conditions, secondary conditions, physical activities, other health behaviors and perception of health. Pearson chi-square tests (X 2) of independence were conducted to test the associations between the variables in the cross-tabulations. The null hypothesis of independence was rejected if the p -< .05 level. The reported p values are two-sided unless otherwise indicated in the text. Use of the word "significant" in this report refers only to statistically significant findings. RESULTS
Demographics The mean age of the 63 women residing in the community was 37.7 (_+ 12.7) years. Eighty-six percent of the female participants in the community were unmarried. When queried about their highest level of education, 25 of 62 of the women (40%) reported some college attendance; 21% (13 of 62) were awarded a 4-year degree or higher. Eighteen percent (11 of 62) of the community women completed a high school education or an equivalency degree. Thirtynine percent (24 of 62) of participants reported attending special education or some type of schooling, while 3% (2 of 62) indicated that they had received no formal schooling in their past. Data on the education of one woman were missing.
CP Identification All the women in the study had been diagnosed as having CP at some point in their life. The principal investigator (a physiatrist) confirmed this diagnosis with all study participants through a physical examination. The CP identification was confirmed for the majority of women (98%). Despite being diagnosed with CP during her life, one woman was clinically determined not to have CP, but rather poor motor planning associated with limited cognitive function. All of the women met the study eligibility requirement of being diagnosed with CP sometime in their life and were kept in the analyses, with the exception of analyses that assessed CP type (as determined by the principal investigator) and its association with the associated conditions, and secondary conditions. In this case, the woman without CP was eliminated to allow for analyses that would yield the most meaningful information about the association of CP type with the other variables. Participants presented with mild to moderate CP as defined by limb involvement and quality of muscle tone (table 2). Spastic diplegia (29%) was the most frequently reported type of CP followed by dyskinesia/posturing (25%). Most women experienced some degree of spasticity (62%).
Data Analysis
Associated Conditions
Statistical analyses were carried out using the Statistical Package for the Social Sciences (SPSS). ~ Descriptive and exploratory analytical analyses were conducted. The descriptive
The associated conditions assessed in this report included mental retardation, learning disabilities, and seizure history. Forty percent (23 of 58) of the community group reported a
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Table 3: Frequency of Associated Conditions of Women With CP Residing in the Community Associated Condition
n/Data Available* 1%)
Mental retardation Learning disabilities Seizure disorder
20/58 (34) 15/58 (26) 23/62 (40)
* Data were missing for mental retardation & learning disabilities (n = 5), and for seizure disorder (n = 1).
history of seizures, while 34% (20 of 62) had mental retardation and 26% (15 of 58) had learning disabilities (table 3). The associated conditions were found to be independent (p > .05) of the type of CP based on the Pearson X2 test of independence.
Mobility & Functional Independence Sixty-five percent (41 of 60) of the women with CP in the community were able to walk, compared with 11% of female participants who resided in the developmental center (X2 [1] = 33.4, p < .000). Of the 19 women who reported being nonambulatory, 53% (10 of 19) indicated that they had walked sometime during their life. Twenty-nine of 63 women (46%) reported current use of a wheelchair. Nearly half (45%) of women who used a wheelchair, self-propelled. More than 50% of the women residing in the community required no assistance with eating, bathing, dressing, grooming and toileting. Table 4 describes these findings.
Secondary Conditions Women with CP residing in the community reported various secondary conditions when interviewed about their health, including those specific to reproductive health (table 5). Thirtyfive percent reported increased spasticity during menstruation (22 of 63), and 24% indicated increased urinary incontinence (15 of 63) while having their period. The most frequent secondary conditions among women with CP residing in the community was pain (84%), 53 women out the 63 reported pain in at least one area of the body. Pain limited the activities of 56% (35 of 63) of the women. Of the women that experienced pain (n = 53), the most common sites of pain were the head (28%), back (26%), and arm (23%). Musculoskeletal deformities were the second most frequently reported secondary condition of the community women with CP. Seventy-five percent (44 of 59) of the women had some type of contracture. Most contractures of this group (n = 44) were in the ankle (61%), followed by the neck (45%) and hip (43%). Twenty-five out of 62 (40%) women reported having at least one hip deformity (windblown hip, pelvic obliquity, and/ or hip contracture). Specific hip deformities reported included pelvic obliquity (27%) and windblown hip (15%). Thirty-two of 61 community women also experienced a back deformity of either kyphosis or scoliosis (53%). Lastly, leg length difference was seen in 44% (27 of 62) of the women. Additionally, 59% (35 of 59) of the women reported having both a hip and back Table 4: Frequency of Levels of Assistance With Activities of Daily Living (n 63) Activity of Daily Living Eating Bathing Dressing Grooming Toileting
Required No Assistance, n (%) 46 36 34 34 41
(73) (57) (54) (54) (65)
Required Some Assistance, n (%) 7 8 12 12 4
(11) (13) (19) (19) (6)
Required Much Assistance, n (%) 10 19 17 17 18
(16) (30) (27) (27) (29)
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Table 5: Secondary Conditions of Women With CP (n - 63) Secondary Condition
n (%)
Pain Hip and back deformities Bowel problems Bladder problems Poor dental health Increased spasticity during menstruation Gastroesophageal reflux Increased incontinence during menstruation
53 (84) 35 (59)* 35 (56) 31 (49) 26 (43) 22 (35) 17 (28) 15 (24)
* n = 59 women.
deformity. Other reported secondary conditions included: bowel problems (56%), bladder problems (49%), poor dental health (43%), and gastroesophageal reflux (28%). In the assessment of relationships between secondary conditions and other selected variables, associated conditions were found to be independent of having both hip and back deformities, and experiencing bowel or bladder disorders. A significant association was found between poor dental hygiene and seizure history (X2 [1] = 4.3, p = .03), possibly resulting from the deleterious effect of anticonvulsant medication on the health of gums and teeth. There were also significant relationships between gastroesphageal reflux and mental retardation (X2 [11 = 4.2, p = .04), pain and mental retardation (X2 [1] = 4,3, p = .037), and bladder problems and mental retardation (X: [1] = 4.9, p -- .027). The only secondary condition associated with CP type was hip deformities (X 2 [5] = 11.4, p = .029); all other secondary conditions were independent of the participant's type of CP (p > .05). Twenty-four percent (6 of 25) of the women reporting hip deformities (windblown hips, pelvic obliquities, and/or contractures) were women with spastic diplegia, and 24% (6 of 25) were women with spastic quadriplegia. Women with spastic hemiplegia experienced 16% (4/25) of hip deformities, as did those with dyskinesia/posturing (4 of 25). Gastroesophageal reflux was the only secondary condition significantly associated with age (t [581 = 3.23, p = .002).
Health Behaviors Participants generally exhibited positive health behaviors. Fifty-two percent (31 of 60) of women self-reported that they watched what they ate and tried to eat a balanced diet. Ninetyeight percent of the women did not smoke (59 of 60); similarly, 95% had not consumed alcoholic beverages in the past month (57 of 60). Fourteen of the 60 women (23%) reported that they consumed alcohol on occasion. No women drank more than three drinks on such occasions. Lastly, 83% (52 of 60) of participants reported engagement in at least one common physical activity, including swimming, walking, use of exercise equipment, and weight lifting. No physical activity information was reported on three women (table 6). Significant associations were observed between walking and participating in the above listed physical activities (X2 [1] = 6.3, p = .011), and between wheelchair use (yes/no) and participation in the common physical activities (X2 [1] = 15.6, p = .00029). Women who did not walk, or indicated that they used a wheelchair, were less likely to exercise. Engagement in at Table 6: Common Physical Activities of Women With CP [n Physical Activity
Swimming Walking for exercise Use of exercise equipment Weight lifting
60)
n (%)
38 35 28 23
(63) (58) (47) (38)
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HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
least one of the physical activities was independent (p > .05) of the CP type, and was independent of the associated conditions of mental retardation, learning disabilities, and having a history of seizures. It was found in the Pearson X2 test of independence that participation in physical activity was associated with both back deformity (X2 [1] = 7.9, p = .0047) and hip and back deformity (X2 [1] = 5.59, p = .018), but not with hip deformity alone (X2 [1] = .1 I, p = .73). Of the women with back deformities, 69% (22 of 32) engaged in one of the common physical activities, compared with 97% (28 of 29) of the women without a back deformity. Additionally, 71% (25 of 35) of women with both hip and back deformities engaged in physical activity, compared with 96% (23 of 24) of women without these deformities. In questioning further about exercise, participants were asked if they had stretched or done range-of-motion (ROM) exercises in the past week. Fifty-seven percent (34 of 60) of the women reported that they did not engage in these activities. The 43% of participants (26 of 40) who reported stretching or doing ROM exercises in the previous week had exercised for a mean of 3.8 (_+ 2.4) days during that week. Eight of the 26 women (31%) reported exercising all 7 days of the week, while four women of the 26 (15%) reported exercising for only 1 day of the previous week. Twenty-six of 60 participants (43%) also reported engaging in aerobic exercise. Of these 26 participants, 14 women (54%) reported that they exercised for 30 minutes or more. In a typical week, participants reported that they performed aerobic exercises for a mean of 3.0 (_+ 1.6) days. The associations between performing ROM exercises (no/yes) and secondary conditions were assessed. Back deformities, hip or back deformities, and gastroesophageal reflux were independent of exercising. The presence of hip deformities was associated with performing ROM (X2 [1] = 3.87, p = .049). Those with reported hip deformities were more likely to engage in ROM than those without these complaints. Reported pain and bowel disorders were not associated with ROM exercising (p > .05).
Health Care The medical records of participants were reviewed to determine the extent of health care use by adults with CP. Fortyfour women (73%) made at least one doctor visit in the past year. Of the 60 women for whom health care data was collected (abstract data missing for 3 women), the mean number of visits in the past year was 4.1 (_+ 4.5) with a median of 3.0. Only 7 women (12%) spent at least one night in the hospital, and 12 women (20%) used emergency room services in the past year. In the matter of preventive reproductive health care, 92% (58 of 63) of the women recalled having had at least one gynecological examination in their life; while 18% (11 of 63) reported having an exam in the past year. Only 22% (14 of 63) of the women reported doing a breast self-examination, or having someone do one for them, in the past month, although 58% (37 of 63) indicated that they sometimes do or have a breast examination. Thirty-seven women of 60 (62%) had made at least one trip to the dentist in the past year (abstract data missing for 3 women). Among those reporting dental visits, the mean was 2.4 (_+ 1.9) visits in the past year. Doctor visits (0, 1 to 4 visits, 5 to 18 visits) and the presence of individual secondary conditions were found to be independent in Pearson X2test of independence. Surprisingly, no statistical significant relationship was observed between a participant's dental health and the number of dentist visits. Age and doctor
Arch Phys Med Rehabil Vol 78, December 1997
visits in the past year were not significantly correlated (r = . 19, p = .068).
Self-Reported Health Status Community participants were queried about selected health behaviors and also asked to report on their perceived health status. When asked, 52 of 60 (87%) women with CP in the community group affirmed that they considered themselves healthy despite their disability. Six women (10%) believed that they were somewhat healthy, and one woman did not think of herself as healthy. Self-reported health was not collected on three women in the community. Although 87% (52 of 60) of women in the community with CP perceived themselves as healthy despite their disability, 39 of the 63 (62%) community women still reported concerns and worries about their health during the past year. Sixty-seven percent (42 of 63) of the women were able to articulate a specific problem or issue that was causing them distress. There were few anecdotal reports of common medical problems not associated with CP (comorbidities), such as cardiac disease, diabetes, hypertension, or cancer. The complaints that participants recalled in the health interview were primarily musculoskeletal in origin or concerned health behaviors or lifestyle, such as weight control and medication use. The presence of a secondary condition was independent of self-reported health status based on Pearson X2 test of independence (p > .05). Women were also asked if their participation in planned activities was limited because of health problems. Twenty-three of 63 (37%) women affirmed that health problems had interfered with their planned activities in the past year. Seventeen of 63 (27%) women were able to recall the problems or events that were disruptive, such as hospitalizations, accidents, and pain. DISCUSSION The findings of this study reflect the health status and health behaviors of women with mild to moderate CP living in a variety of residential arrangements within the community. These women perceive themselves as healthy despite their disability (87%), and did not report comorbidities as health concerns in the past year. Similarly, 87% of the general population surveyed across the United States rated their health as good to excellent as recorded by the 1993 Behavioral Risk Factors Surveillance System. 2s These findings support the conclusions that adults with disabilities, or chronic conditions, define health as more than their functional level and primary disabling condition.9.29 This study showed that there were significant relationships between the examined health status elements of self-reported health status, associated conditions, secondary conditions, and health behaviors. The associated conditions of women in the community were independent of the type of CP that they were identified by in the study. This may be the result of the high functional status of women in this report in which residual effects of the CP are minimal. Conversely, women in the developmental center experienced more associated conditions, which supports this conclusion. Women with CP living in the community experience various secondary conditions. Pain is the condition reported by most women in this sample, and back and hip deformities are the second most common secondary condition. Other studies looking at secondary conditions of adults with CP also report pain, musculoskeletal problems, and related mobility concerns as common secondary conditions in this population.3°31 Osteoporosis (ie, secondary osteoporosis of immobilization) is a common secondary condition among persons with mobility impairments, yet was only reported in 5% of the entire study group
HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
(n = 215), and usually only after an extremity fracture was found. Women with CP need to be queried about secondary conditions during routine office visits and informed of their risk for secondary condition development, especially those conditions relating to potential orthopedic complications. The significant relationship between poor dental health and having a seizure history supports the hypothesis that anticonvulsant medication has a negative effect on dental and oral health. Such a relationship highlights the importance of informing both consumers and dental practitioners about the effects of medication on the dental health of persons with disabilities. Steifel et a132 question whether persons with severe disabilities also have a lower resistance to periodontal irritants because of issues related to compromised health. Further exploration of the dental health of adults with CP is needed, particularly regarding lifelong medication use. The significant associations noted between mental retardation and pain, mental retardation and gastroesophageal reflux, in addition to mental retardation and bladder problems, may suggest a relationship between the ability to report a medical condition or problem and the actual presence of a secondary condition, although further assessment must be done to assure that such relationships are not spurious. There is also the traditionally held belief that the presence of mental retardation negates the self-report of a medical problem or condition. The self-report of medical issues by any population, however, may be wrought with reliability and validity problems. 33 Regarding the issues of cognitive impairment, Kaplan and colleagues34 write that often persons with mental retardation or dementia are assumed to be incompetent in medical decision-making. They suggest that diagnosis is not the critical factor in determining competence, but that each case needs to be reviewed individually. The self-reports by women with CP and mental retardation in this study were viewed as representative of their experiences based on the appropriateness of responses in the physical examination, as determined by the principal investigator. Additionally, proxy respondents were used by respondents for whom difficulty in answering study questions was acknowledged before their visit to the study setting. The finding of independent relationships between self-reported health status and secondary conditions indicates the complexity of health status assessment. Although a woman with CP may have a secondary condition, she may not necessarily report that she is in poor or failing health. Women in this study engaged in health-promoting behaviors such as abstinence from smoking and from consuming alcoholic beverages in the past month, eating a balanced diet, and engaging in physical activity. The protective effect of such health-promoting behaviors on the health and function of women with CP and other disabilities has yet to be adequately documented in the medical literature. The determinants for engagement in health-promoting behaviors have been investigated for typical populations of women,3538 but is only in the preliminary stage of investigation for women with disabilities.19'2° The significant association of the ability to walk and participation in physical activity, and of wheelchair use (yes/no) and physical activity participation, show the importance of physical function in exercise-based health promotion activities. These findings suggest that the use of mobility devices and other adaptive equipment are important considerations in designing exercise interventions. The significant association between stretching and/or doing ROM exercises and hip deformity may be suggestive of the therapeutic need for stretching in the management of a hip deformity. The subsequent reinforcement of this
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need may occur through the encouragement of a physical therapist or by personally observed benefit from engaging in the behavior. Similarly, the significant relation between musculoskeletal deformity and engagement in physical activity, such as with back deformity, may indicate the importance of general physical activity as a therapeutic intervention for certain musculoskeletal deformities. It is also noteworthy that 43% of the women in this study reported engagement in either stretching/ROM or aerobic exercise. This is similar to the 46% of disabled women who reported exercising in the study by Nosek et al. 2° Henderson and Bendini39 determined that women with mobility impairments held different attitudes toward physical activity involvement. Further investigation of the reasons why women with physical disabilities engage in physical activity would assist in the design of interventions that facilitate life-long adherence to exercise behavior. Some initial trends in health care use by women with CP who reside in the community were observed in these findings. Health care utilization data allow for determination of who receives medical care, the reasons for seeking care, and the quantity and type of medical care consumed by a population,m° For example, the 1995 National Ambulatory Care Survey 41 reports that females made 3.1 office visits to doctors in 1995, while males made 2.2. visits. Similarly we found that the women in our study made a median of 3.0 doctor visits in the past year. This finding is seemingly contrary to a recent report of persons with chronic conditions, including both impairments and chronic disease, consuming high quantities of health care services and substantially contributing to rising health care expenditures in this country.42 Additionally, it is notable that associated conditions and secondary conditions of CP were independent of doctor visits. These relationships are counter to the presumption that the frequency of either associated conditions, or secondary conditions, would have an impact on health care utilization. The unforeseen nature of these findings calls for future study of the reasons why women with CP seek routine health care. Preventive health care is an important facet of routine health care. The 1988 National Survey of Family Growth 43 found that 67% of the women (18 to 44 years of age) who completed the survey had a Pap test or pelvic examination in the past 12 months; the same number also had a breast examination in the past 12 months. This stands in contrast to the 18% of women with CP in this small sample who recalled having a gynecological exam in the past year and the 22% who had a breast examination in the past month. Although 92% of the women in the community group recalled having at least one gynecological exam ever, the need for routine preventive gynecological health care cannot be underestimated for women with CP. The cause of low recall of annual gynecological exams warrants further investigation, particularly if barriers exist to the access of these services that prevent women from receiving needed annual examinations. Nosek s identifies five categories of primary care issues of women with severe physical disabilities: physical access to services, information, attitudes, finances, and personal assistance. These areas represent entry points into a service delivery system; a deficit in any one area constitutes a barrier to service. Barriers may be either individual or structural, and often there may be an intersection between the two types.44 Physical or architectural harriers in the structural category that are commonly cited by women with physical disabilities include lack of adequate ramps into health care facilities and improper examining tables, especially for gynecological examinations. Other
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HEALTH STATUS OF WOMEN WITH CEREBRAL PALSY, Turk
structural barriers to service include transportation, time, distance, availability and organization of health services, discrimination, and the provider-consumer relationship. 7'8'42'43Individual barriers include education, income, age, values, motivation, ability, self-worth, social support, cultural background, and family characteristics. 7"45 The determination of the relationship between health status and barriers experienced by w o m e n with CP would be useful to better understand the health behaviors of w o m e n with CP, but was not under the purview of this study. Another limitation of this study is the small sample size. It would be advantageous to have a larger sample of the population of w o m e n with CP to draw more generalizable conclusions about the data. A second concern regarding the utility of these study data is that only a small n u m b e r of questions were asked about health promotion practices and beliefs of participants, and these questions were primarily descriptive in orientation. Therefore, the findings of this report provide a basic understanding of the health promotion issues of w o m e n with CP and a starting point for future research on the topic. This study is an important contribution to the literature on w o m e n with disabilities. It offers a preliminary profile of the positive health status of w o m e n with CP and initial trends in their health behaviors and secondary conditions. Further analyses are warranted to more clearly determine the nature of the factors, and their interactions, that comprise the health status of w o m e n with CP. Additionally, health care utilization and other interventions that affect the health status of w o m e n with CP should be examined to better understand why w o m e n with CP may not participate in necessary health promotion activities that could ameliorate the development of secondary conditions. The fundamental issue of barriers to health care and health promotion activities must continue to be addressed by service providers and researchers if any strides are to be made toward improving the health status of all w o m e n with CP. References
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Supplier a. SPSS, Inc., 44 N. Michigan Avenue, Chicago, IL 60611.
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