THE WORLD HEALTH ORGANIZATION defines disability as “any restriction or lack of ability to perform an activity in the manner, or in the range, considered normal”.1 Women with disabilities make up 10% of the population of this country, numbering roughly 28 million.2 Because these women participate actively in society, there is no reason to expect that they should not be at risk for developing sexually transmitted diseases (STDs).3 In a survey conducted by the Center for Research on Women with Disabilities at the Baylor College of Medicine, the reported incidence of STDs was similar in women with and without disabilities.4 Because STDs are a significant cause of morbidity in all women, it is critical for the clinician to have an understanding of how these infections affect women with disabilities.5
Because of access barriers and sensory impairment, STDs may not be promptly diagnosed in women with disabilities, resulting in the development of preventable sequelae. Access barriers come in several forms: educational, attitudinal, and physical. Each of these barriers cumulatively conspires to limit prompt intervention and treatment of STDs. The lack of sex and health education, especially of safe-sex messages, for females with disabilities may be due to erroneous perceptions that disability prohibits females from being sexually active or limits sexual desire.6 Indeed, according to a survey of 475 women with disabilities and 406 able-bodied women, 49% of those with disabilities were sexually active at the time of the survey, compared with 61% of women without disabilities.4
Unfortunately, women with disabilities are often not routinely tested for STDs. For example, a patient with severe spastic cerebral palsy, dysarthria, and motor impairment had a long history of “bladder infections,” but was never tested for STDs. The patient married, and she and her husband were not able to conceive for some time. The patient underwent an infertility evaluation, which revealed bilateral tubal adhesions and obstruction due to chronic pelvic inflammatory disease. Had the patient's sexuality been acknowledged when she presented with her initial symptoms, the treatment of STDs might have prevented the development of pelvic inflammatory disease and subsequent infertility.
Physical access barriers may relate to inaccessible transportation, poorly designed medical facilities, and high examination tables. This article addresses these issues and suggests ways in which the patient and the provider can work together for a positive outcome.
Physical and architectural access barriers may be monumental for the patient with disabilities. Women frequently encounter difficulty obtaining wheelchair-accessible transportation to medical facilities. When these patients arrive at the facility, examination tables may be so high that it may be difficult for the patient to get onto the table. Often, infections will result in increased leg spasticity, thereby compromising a patient's ability to keep her feet in stirrups for the pelvic examination. An examination table has been designed that lowers to wheelchair height and has boot stirrups for leg stabilization (Figure 1).7 Alternatively, extra personnel must be on hand to lift and secure the lower extremities. Because of these barriers, many women with physical limitations avoid preventive health screenings, including those for STDs.
The visually impaired woman may face unique access barriers because she will not be able to drive to a medical appointment and will, therefore, need to rely on others for transportation. If paratransit services are available, she does not need to explain to family members or friends where she is going and why. However, if the patient must rely on these persons, she may be reluctant to ask them to drive her to a medical appointment, which may result in a delay in diagnosis and treatment.
Once the patient does arrive at the medical facility, the staff should be sensitive to her needs. It is particularly important to make sure that the woman is oriented to her surroundings and knows where her belongings are. Comments such as, “Go right through that door,” or, “I'm putting your clothes here” are not helpful and can make the woman with visual impairment feel that she is not in control. The provider needs to have special sensitivity to the assets and abilities of women with disabilities. Trust can be fostered by sensitive comments such as, “Have you noticed any itching or burning or sweating?” rather than, “I know that you can't see what color your discharge is or if you have any rashes.” Reinforcing the positive aspects of communication will encourage the patient to be forthcoming about the symptoms she is experiencing.8
Because symptom recognition may be hampered, it is especially important for the clinician to look for findings. If the patient has an elevated temperature that is detected in the office, she will not be able to follow instructions such as, “take two Tylenol every 4 hours if your temperature is above a certain level.” Family members or someone the woman feels close to could be recruited to administer care for her. Otherwise, the patient should be brought back into the office to have her temperature measured again. Simplified dosing regiments will also be useful (Table 1). Liquid forms of medication are not recommended because of the risk of spillage. All instructions for dosing regiments should be given to the patient verbally instead of by a written prescription alone.
Hearing-impaired women may not have the benefit of listening to radio programs and newscasts that discuss the danger of symptoms of STDs and important safe-sex messages. As a result, their understanding of the manifestations of STDs may not be complete. The hearing-impaired woman may have difficulty communicating with her practitioner, although she may experience the same symptoms of STDs as a woman without a hearing impairment. The patient would be more likely to seek care if the office was equipped with a telephone relay device for the deaf (TDD) communications system, and if a person who is fluent in sign language is available to the patient during the medical visit. It is important for the sign-language interpreter to be someone other than a family member, because the use of a relative could clearly compromise privacy. Communication about appropriate monitoring of therapeutic effectiveness and medication regiments must be clear, both through written instruction and through reinforcement via the sign-language interpreter. Educational pamphlets in lay language are especially useful in these situations.9
Women with cognitive impairments may not have access to preventive screening, partly because it is perceived that they are not at risk for developing gynecologic problems. Depending on the degree of impairment, patients with cognitive impairments may have difficulty describing their symptoms.10 Body language, such as rubbing the lower abdomen or curling up in a ball, may be the only way that these patients can communicate their discomfort, especially in the case of nonverbal patients. Because of hygiene issues, many persons with significant cognitive impairment experience fecal soiling of the perineum, predisposing to urinary tract infections due to colonization of the perineum with Gram-negative rods. Assays that can be affected by these organisms, such as Chlamydiazyme (Abbott Laboratories North Chicago, IL; Microtrak, Palo Alto, CA), should be avoided.11
Patients who live in long-term-care facilities are frequently lifted and moved around by men, with little supervision. This scenario may lead to sexual abuse. If the provider is not able to question the patient about these occurrences because of the patient's cognitive impairment, the abuse may be uncovered only through the detection of an STD. Women who are less cognitively impaired and who live within the community may have difficulty grasping the concept of safe-sex practices, which may put them at risk for STDs. Furthermore, these women may not be able to effectively communicate their sexual experiences. Practitioners should be gentle and nonthreatening and simplify all questions and instructions when examining these patients.12
Treatment of STDs in the cognitively impaired woman may be hampered by her limited ability to follow instructions. Single-dose regiments that can be administered in the medical setting are ideal, when possible (Table 2). Otherwise, clear instructions are necessary for the woman and her caretakers. Because of these issues, test-of-cure revisits might be considered.
Pelvic Sensory Impairment
Women with pelvic sensory impairment may have difficulty self-diagnosing STDs. Disabilities that share this feature include spinal cord injury, spina bifida, and some cases of multiple sclerosis (MS) in which plaques are present in the spinal cord. Many of these women have neurogenic bladders and experience recurrent urinary tract infections. Nonspecific symptoms, such as increased leg spasticity and malaise, are familiar occurrences. Such patients are less like to recognize the possibility that an STD, and not a urinary tract infection, is responsible for these symptoms. If practitioners do not test for these conditions, preventable sequelae can ensue.
Symptoms of increased leg spasticity and malaise developed in a woman with a spinal cord injury. The patient's friend recommended a visit to her gynecologist. Because a low examination table was not available at this clinician's office, pelvic ultrasonography was performed instead of a physical examination. The patient was reassured that she had no ovarian cysts or other pathology, and test results for urinary tract infection were negative. After a few months, when symptoms did not improve, the patient came to a facility with a low examination table. Specimens taken during the physical examination revealed a chlamydial infection.
The likelihood of undiagnosed pelvic inflammatory disease in the disabled population with altered sensory capacities is increased. These woman are at greater risk for exacerbation of spasticity and for the development of autonomic dysreflexia (Table 2). Women with spinal cord lesions above the level of T6 will have experienced symptoms of autonomic activation with common noxious stimuli, such as bowel and bladder problems (Table 2), and may automatically assume that they are experiencing these familiar conditions.13
Because women with sensory impairment will not be able to determine efficacy of therapy by noting a decrease in discomfort, they can be instructed to monitor temperature elevations and comply with medication regiments.
Chronic Disabling Conditions
There are many types of chronic disabling conditions, including arthritis, cerebral palsy, MS, polio, muscular dystrophy, and cerebral-vascular accidents. Because these conditions may result in varying limitations of function in different parts of the body, it is important to individualize management approaches to address unique needs.
Limitations relating to dexterity and coordination may restrict the woman's ability to reach different parts of her body to identify abnormalities. In some disorders, sensory impairment may exist in only certain parts of the body (e.g., stroke patients) in which persons are unable to reach a specific area or to accurately identify unusual findings. Chronic conditions, especially those of autoimmune origin, may be linked with mild temperature elevations, fatigue, and malaise, which could confound the diagnosis of an STD. Women with multiple medical problems frequently take many different medications; therefore, it is not uncommon for drug eruptions to develop in these patients. However, because rashes can occur with both autoimmune conditions and infectious diseases such as syphilis, delayed detection and treatment of STDs may result.
Chronic disabling conditions may limit access to therapeutic options. Women with dexterity limitations must be prescribed medications in containers that open easily. Short medication courses are preferable. Some women with cerebral-vascular accidents and MS may experience dysphagia, and should be offered liquid forms of antibiotic therapy (Table 2).
Specific STD-Related Issues
The unpredictable nature of syphilis may confound the diagnosis of this infection. There are a number of disabling conditions that are associated with a false positive Venereal Disease Research Laboratories assay (e.g., rheumatoid arthritis, lupus erythematosus).14 Fluorescent treponemal antibody can be used to rule out false-positive results.
If syphilis-infected woman relies on personal-care assistance, the significance of a chancre may not be appreciated by her attendant, especially because it resolve spontaneously. In secondary syphilis, lymphadenopathy, elevated temperature, and flu-like symptoms can mimic manifestations of immunologic disorders.15 For women with disabilities, evidence of neurosyphilis may resemble features seen inpatients with MS and HIV infection.16–20 Such symptoms include visual impairment, cognitive impairment, spasticity, imbalance, gait disturbance, pain, paresthesia, and bowel and bladder dysfunction.
Appearance of a herpetic lesion may be delayed for up to 10 days after sexual contact21; thus, the woman or her attendant may not associate the development of this lesion with sexual activity. Wheelchair users are especially at risk for developing skin breakdown, and because herpetic ulcers may resemble decubitus ulcers, the diagnosis of herpes could be difficult.22 Once herpes simplex virus (HSV) is diagnosed and treatment commences, the patient may not be able to sit in her wheelchair until the lesions have begun to crust over and blistering has subsided; otherwise, skin breakdown could be a serious complication. It is important to allow adequate ventilation to this region to maximize healing potential while antiviral agents are taking effect. Women with spinal cord injury may benefit from the application of topical lidocaine gel, which has been shown to decrease spasticity in women with spinal cord injuries who are susceptible to dysreflexia (Table 1).13 Women taking immunosuppressive agents for the management of rheumatologic diseases and MS may develop more aggressive cases of HSV infection.
A 70-year-old woman with poorly controlled diabetes and active rheumatoid arthritis reported severely painful perineal lesions that were culture positive for HSV. The patient was taking corticosteroids and methotrexate. Her rheumatologist was consulted, and the immunosuppresive-agent dosages were decreased to facilitate response to antiviral therapy.
Prodrome symptoms of HSV recurrence may differ slightly in women with disabilities from the well-described tingling and burning at the previous lesion site. It is important for the clinician to work with such patients to help them to identify their prodrome so that early intervention can be initiated. Recently, it has been suggested that there may be a link between exacerbation of MS and recurrent outbreaks of HSV and other viral diseases, such as varicella-zoster virus and Epstein-Barr virus.23–25 The precise linkage between these viral infections and MS has yet to be clarified.
The presence of human papillomavirus infection raises concern for predisposition to the development of cervical dysplasia. Asymptomatic infection is common.26 Women with disabilities may be less actively screened for cervical cancer than nondisabled women because of access barriers. Women who take long-term immunosuppressive agents, such as women with systemic lupus erythematosus, may be at increased risk for the development of cervical dysplasia and may require more frequent evaluation.
Mild forms of hepatitis B infection can have variable manifestations and can be difficult to diagnose because symptoms such as malaise, myalgia, and joint arthralgia mimic rheumatologic conditions.27 Interferon therapy for hepatitis B may be contraindicated in patients with a history of psychiatric disorders, because one of the adverse reactions to this medication is neuropsychiatric disturbance. Another contraindication is preexisting nonviral hepatitis, such as that seen in patients with some autoimmune diseases.28
Women with disabilities due to trauma may have engaged in risk-taking behavior (e.g., alcohol and other substance abuse) that might have led to the disabling event. Frequently, in acute cases, standard indications for hepatitis and HIV screening may be eclipsed by the more urgent need to resuscitate and rehabilitate the patient; therefore, these tests may be inadvertently omitted. If such a patient has a negative test result for hepatitis B, vaccination should be encouraged. When coordinating vaccination regimens, the patient's personal care attendant and transportation restrictions need to be considered.
Symptoms of hepatitis C can resemble those of autoimmune diseases, including joint pain, myalgia, fatigue, elevated temperature, xerostomia, xerophthalmia, and cutaneous vasculitis.28 Other findings that may be common to both conditions are renal dysfunction, cryoglobulinemia, anticardiolipin antibodies, positive rheumatoid factor, positive assays for other autoantibodies, and thrombosis.29
The prevalence of HIV in women with disabilities is unknown. Some disabling conditions, such as MS, may exhibit symptoms that mimic manifestations of HIV, including visual impairment, cognitive impairment, spasticity, imbalance, gait disturbance, pain, paresthesia, bowel or bladder dysfunction, and fatigue.30
Frequently, women who are wheelchair users experience recurrent and resistant monilial overgrowth that results in skin irritation. Neither the woman, her partner, or caregivers may connect these yeast infections with immunosuppression31,32; thus, prolonged ineffective interventions may continue before the HIV infection is properly diagnosed.
Women with disabilities may be at risk for exposure from attendants, whose agencies may not enforce routine HIV-screening policies. Hidden sexual abuse can also be a source of exposure; however, if exposure is not recognized, prompt prophylaxis may not be instituted.33 Complicating matters is the fact that compliance with treatment regimens often depends on the person who may have been responsible for the infection.
The focus of the clinicians who are caring for the pregnant woman with a disability is often the disabling condition, and the patient may not be screened for HIV. Established protocols have demonstrated the effectiveness of decreasing vertical transmission of HIV infection using antiretroviral therapy.34 The mother with dexterity or vision difficulties may need some assistance administering neonatal zidovudine elixir medication to her newborn.
Compliance with medication regimens may be logistically difficult because of the necessity for multiple medications and frequent dosing. Pharmacists need to be involved to ensure that the medications that the woman requires for her disability do not adversely interact with regimens used in HIV treatment (Table 2).
The side effects of several antiviral agents used to treat HIV may be poorly tolerated, especially those that may exacerbate the patient's underlying fatigue, myalgia, and neuropathy. When treating disabled women with renal dysfunction using antiretroviral agents, clinicians should be especially careful with the use of indinavir, because it may be linked with increased risk for the development of nephrolithiasis and renal failure.35
Clinical studies report that physical, sexual, and emotional abuse are more frequent among women with disabilities than among nondisabled women. Further, once the abuse begins, it is more likely to continue and escalate in women with disabilities.36,37 Use of personal-care assistants to assist in the performance of activities of daily living and hygiene maintenance is common in the disabled population. Because of this dependency, the woman is vulnerable to abuse.
Abuse can be perpetrated in passive or active forms. Women can be victims of sexual and physical abuse by family members or caregivers. In these situations, the woman may be trapped because she is unable to reveal this abuse to anyone without the threat of repercussions. Abusive situations frequently are associated with social isolation, because the perpetrator often attempts to limit the woman's contact with the outside world, thereby reinforcing her feeling of helplessness. An abused woman may be brought to medical facilities when problems are evident, but frequently the abuser insists on maintaining control of the interactions between the patient and her medical team for fear of being discovered. To add to these serious dilemmas, most women's shelters are not wheelchair accessible, or are otherwise not equipped to accept and protect women with disabilities. The health professional may identify a patient with disabilities who is a suspected abuse victim when she presents with vaginal discharge, bleeding, bruising, lacerations, or newly diagnosed STDs. It is important to insist on privacy when examining all women, including those with disabilities, to ensure honest communication. Thus, the clinician and the patient can begin to develop “escape plans” and other solutions to protect her safety and health.
Women with disabilities, like nondisabled women, are sexual beings and may engage in active and satisfying sexual activity. Therefore, women with disabilities are at risk for acquiring the same STDs seen in nondisabled populations. Because of the impact of disability on sensory function, the common manifestations of these infections may not be identified. Disabling conditions may exhibit signs and symptoms that mimic those of STDs. Therefore, these infections may not be diagnosed and treated promptly, which may result in the potential for the development of serious sequelae. Medication regiments need to be tailored to the patient's abilities and limitations to ensure compliance. Women with physical limitations are at increased risk for abuse of all types because of their vulnerability. Options for identification and intervention are key factors to providing protection and assistance. Elimination of physical access barriers, improved patient-provider communication, a better understanding of atypical presentations of symptoms, and the appropriate tailoring of treatment regiments can reduce the likelihood that STDs in women with disabilities remain underdiagnosed and undertreated. Access to information regarding diagnosis and treatment of STDs by women with disabilities and their providers is essential to maximize favorable outcomes.
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