A Provider’s Guide

for the Care of

Women with

Physical Disabilities &

Chronic Medical Conditions

Sandra Welner, MD

Clinical Assistant Professor

Department of Obstetrics & Gynecology

University of Maryland Medical Center

Baltimore, Maryland

About the Author

Dr. Welner is a Primary Care Women’s Health Physician focusing on the complex medical

care issues and psychosocial needs of women with disabilities. As the Clinical Director of

Primary Care Programs for Women with Special Needs in Washington, DC she works with

this patient population in a hospital setting, and as a private consultant. Dr Welner has

designed and patented a universally accessible examination table for the disabled and has

conceived of a videotape focusing on breast health issues for women with disabilities. She

has lectured locally, nationally, and internationally on topics pertaining to women’s health

and disability. Dr Welner has been the recipient of a number of prestigious honors,

including an acknowledgment for her outstanding service on the Committee for

Underserved Women by the American College of Obstetricians and Gynecologists and by

The Society for the Advancement of Women’s Health Research with an achievement award

for her contributions in clinical service. She has published widely on topics related to

women’s health and disability and is in the process of compiling a comprehensive text for

providers of women’s health to assist in the delivery of improved healthcare to women

with disabilities.

This publication was developed by the North Carolina Office on Disability & Health

which is a partnership effort of the North Carolina Division of Public Health and the

Frank Porter Graham Child Development Center. Through an integrated program of

research, policy and practice, the Office on Disability & Health promotes the health and

wellness of persons with disabilities in North Carolina.

This publication was made possible by a grant from the Centers for Disease Control &

Prevention, Division of Child Development, Disability, and Health, Disability and Health

Branch (U59/CCU403365-12). 1999 North Carolina Office on Disability & Health

North Carolina Office on Disability & Health

Table of Contents

Introduction .....................................................................1

Access to General Medical Care ......................................1

Barriers to Health Care.....................................................1

Eliminating Physical Barriers ............................................2

The Pelvic Examination....................................................2

Cancer Screening.............................................................2

Breast Cancer............................................................3

Endometrial Cancer ..................................................3

Ovarian Cancer ........................................................3

Cervical Cancer ........................................................3

The Menstrual Cycle ........................................................4

Contraceptive Options .....................................................4

Infection Management .....................................................5

Urinary Tract Infections.............................................5

Vaginitis ....................................................................5

Sexually Transmitted Diseases (STDs)...............................5

Pregnancy ........................................................................6

Systemic Lupus Erythematosus (SLE) .........................6

Multiple Sclerosis (MS) .............................................7

Spinal Cord Injury (SCI) ............................................7

Infertility ..........................................................................7

Osteoporosis ....................................................................7

Menopause ......................................................................8

Abuse...............................................................................9

Sexuality ........................................................................10

Conclusion.....................................................................11

Acknowledgements ........................................................11

References .....................................................................13

Suggested Reading .........................................................15

Table 1. Autonomic Dysreflexia .....................................16

Table 2. Autonomic Dysreflexia and Pre-eclampsia .......17

Table 3. Basic Infertility Work-up: Patient Handout........18

Figure 1. Universally Accessible Examination Table.......19

Figure 2. Padded Boot Stirrups.......................................19

Introduction

This guide is designed for clinicians to improve

knowledge and practice in providing care to women

with physical disabilities and chronic medical

conditions. The preparation of this material coincides with

the American College of Obstetrics and Gynecology (ACOG)

recently released ACOG Committee Opinion entitled "Access

to Health Care for Women with Physical Disabilities."[1].

The guide reviews strategies for management as well as

specialized approaches. While the first sections focus on

access to general medical care and removing common

barriers, later sections cover the pelvic exam, cancer

screening, contraception, pregnancy, and menopause as

well as other critical components of comprehensive

reproductive health care. Our hope is that this guide will

be a resource for providers seeking to achieve the clinical

recommendations as well as the spirit of the opinion brief

issued by the ACOG Committee on Health Care for

Underserved Women.

There are a number of socio-economic reasons why

women with disabilities may not seek regular medical care.

These include limited income and education, lack of health

insurance, and employment status. Physical barriers such as

inaccessible facilities and lack of proper equipment for

examining and treating women with disabilities are also deterrents.

By gaining a broader understanding of the diverse

factors that affect the lives of women with disabilities, we

as health care providers can better target clinical and

service approaches to address unique needs for this

population. Viewing the woman with a disability as a

woman first, who happens to have physical differences, will

give us a better understanding of how her disability affects

her health and how her health affects her disability.

Recognizing that she is the person most knowledgeable

about her own disability will foster effective provider-patient

relationships and more active participation in self-care

and health promotion.

Access to General Medical Care

Basic, routine health care is as essential for women who

have disabilities or chronic medical conditions as it is for all

women. Unfortunately, health care providers too often focus

only on the disability and associated issues. For example, a

provider treating a woman with multiple sclerosis may

perceive the woman as "the MS patient" and concentrate

just on issues surrounding that disorder such as spasms

and other neurologic manifestations of this condition. This

incomplete interaction with the health care provider may

put the woman at risk for developing otherwise

preventable secondary conditions such as hypertension or

diabetes.

These medical conditions can be easily screened for

during a routine visit to the health care provider if the

woman is viewed as a whole person instead of as her

disability. It is helpful for facilities caring for women with

chronic conditions and disabilities to have a routine

checklist on every patient to make sure that these basic

issues are not overlooked [2].

Barriers to Health Care

Women with physical disabilities experience three primary

barriers in obtaining and receiving regular medical care.

1. Physical access barriers including facilities that are

architecturally not accessible or have inaccessible

examination equipment can present a major deterrent.

Communication barriers can also affect a woman’s

ability to receive appropriate medical care.

2. Women with disabilities may develop or have the

misconception that they are less likely to acquire

conditions such as infections and cancer as compared

to their nondisabled peers. This is in part a

rationalization because barriers to screening and

preventive health maintenance may be so great that it

may be easier to "accept what cannot be changed."

This is dangerous because the motivation for

involvement as part of the health care team may be

diminished.

3. Health care professionals may have limited knowledge

regarding the interaction between the woman’s health

and her disability and may be uncomfortable

confronting this lack of knowledge. This discomfort

may lead to a reluctance to care for these women.

A three-pronged approach is required to ensure full access

of health screening for women with disabilities:

1. Make facilities totally accessible in accordance with the

Americans with Disabilities Act (ADA). This includes

external architectural modifications as well as

equipment such as power examination tables that

lower to wheelchair height and have special features

designed for use by persons with disabilities and

platform scales for weighing women who use

wheelchairs. There are also specific ADA regulations

about the necessity for the provision of sign language

interpreters for the deaf as well as TTY equipment.

Patients who are visually impaired or blind patients

also are in need of special accommodation such as

audio patient education material.

2. Educational seminars by peers and knowledgeable

professionals can help dispel the myths and

misconceptions about reproductive health issues for

women with disabilities.

3. Sensitivity training for professionals as well as

enhanced medical knowledge through publications and

educational seminars can improve the comfort level

when dealing with disabled women.

Eliminating Physical Barriers

Following are some guidelines for eliminating physical

barriers for all patients.

_ Have accessible parking spaces close to entrances.

There should be ramps and curbs cut at appropriate

grades and surfaces at the front entrance.

_ Have interior and exterior doors that are wide and easy

to open. Provide power door openers.

_ Make sure the route throughout the facility and service

areas is accessible to a woman using a mobility device.

_ Set up the waiting area so that there is room for

wheelchair users to sit out of traffic lanes but with other

people.

_ Have low counters, service windows or receptionist

stations for transactions with short or seated people.

Provide chairs for use by people who cannot stand

while transacting business.

_ Have equipment such as motorized, adjustable-height

treatment and examining tables and chairs.

_ Provide accessible toilet and dressing rooms large

enough for a person using a wheelchair to navigate.

An excellent resource for information on making facilities

more universally accessible is Removing Barriers to Health

Care, produced by the Center for Universal Design at North

Carolina State University and the North Carolina Office on

Disability & Health (www.fpg.unc.edu/~ncodh/).

The Pelvic Examination

One of the most significant consequences of access

barriers can be noted in infrequent or absent pelvic

examinations for women with disabilities. The pelvic

examination is a critical component of health screening for

women. Studies show that women with disabilities are less

likely to have regular pelvic examinations than other

women[3]. An appropriate gynecologic examination table is

essential to provide a dignified and comprehensive pelvic

examination without endangering the woman or medical

staff from injuries during transfer.

Asking each woman what would make the exam

comfortable should be a component of the examination

process. Positioning of legs for an adequate and

comprehensive pelvic examination for women with range-of-

motion restriction and spasticity of lower extremities is

an important consideration. These conditions may be

encountered in women with stroke, spina bifida, multiple

sclerosis (MS), cerebral palsy (CP), orthopedic injuries, as

well as other conditions. Padded, soft, boot stirrups can

aid in comfortable and simplified positioning adjustments

for women with these conditions (Figure 2 boots only).

If accessible equipment has not yet been purchased by

the facility, it is essential that extra personnel be on hand

for transfer assistance and to stabilize lower extremities

during the examination. Involuntary leg movements are not

uncommon in all women when a pelvic examination is

being performed. However, in women who have neurologic

conditions affecting lower extremities more pronounced

spasticity is frequently encountered. This can be managed

by gentle stretching of lower extremities during positioning

as well as application of 2% lidocaine gel to the perineum.

Rapid leg adjustments can result in pain and increased

spasticity and should be avoided.

When examining a woman with a spinal cord injury (SCI)

above level T-6, there is a potential for the development of

autonomic dysreflexia. Autonomic dysreflexia is the

reaction of the autonomic nervous system to discomfort in

visceral organs (cervix, uterus, bladder, rectum), all of

which are manipulated during the pelvic examination [4].

Because this condition can escalate rapidly and be life

threatening if under recognized, a physiatrist or

anesthesiologist should be on hand during the

examination. The patient will usually but not always be

able to share that she has experienced autonomic

dysreflexia from other triggers such as urinary tract

infection, heavy menstrual cycles, or constipation. Signs of

autonomic dysreflexia include rapid heart beat, irregular

pulse, labile hypertension, facial flushing, headache, and

diaphoresis, among other findings (Table 1).

Another group of women who require special

consideration is women with spina bifida. There is a high

prevalence of latex allergies in this population. Therefore,

latex gloves should not be used when doing a pelvic

examination on these women. Alternative synthetics are

available such as flexible plastic[5,6]. Since the incidence

of latex allergies among persons with disabilities and

health care providers is increasing, it is recommended that

strong consideration be given to achieving a latex-free

environment.

Cancer Screening

Because of several factors, women with disabilities are less

likely to receive cancer screenings. Some women do not

seek cancer screenings because they have the all-too-common

misconception that because they have a physical

disability, their risk of gynecological cancer is less or

different than for other women. This is especially true for

breast cancer. Some common fallacies include blind women

or women in wheelchairs having a lower incidence of

breast cancer. This misinformation can be quite dangerous.

Not only may women themselves not acknowledge their

susceptibility to malignancies but health care providers

may lack the awareness of the need of routine cancer

screening because of the many other more obvious medical

and physical problems that require treatment. Inaccessible

mammography equipment and cancer-screening facilities

equipped with high examination tables pose obstacles as

well. If ADA guidelines are followed, these barriers will be

eradicated and screening will be equivalent for all women.

Breast Cancer

There are unique obstacles for screening for breast cancer

in women with disabilities [7]. Components of adequate

breast health care include breast self-examination, clinical

breast examination, and mammography. However, women

who have disabilities that include self-care limitations,

those impacting on dexterity and upper extremity range of

motion, may be unable to perform adequate breast self-examinations.

An obstacle for regular clinical breast

examinations for women who have mobility impairments is

the inability to find facilities that have wheelchair

accessible examination tables.

Women who have restrictions in upper body mobility

are frequently not able to raise their arms and turn their

bodies to obtain lateral views in standard mammography

screenings [8]. The resultant screening examination may be

incomplete [9]. Health care providers working with these

women must be certain that alternative imaging techniques

are ordered in these situations. Ultrasound can be

employed but this probably should be coupled with more

frequent clinical breast examinations. Guidelines have not

been established for these situations.

Endometrial Cancer

Endometrial cancer is the second most prevalent cancer of

the female reproductive organs [7]. Access barriers may

prevent women with disabilities from seeking early

intervention at the first sign of irregular vaginal bleeding

thus permitting progression to a stage where the condition

may be less amenable to treatment.

Risk factors for the development of endometrial cancer

include family history, obesity, and prolonged episodes of

irregular menstrual periods. According to data collected by

the National Health Interview Survey (NHIS), women with

disabilities are statistically more likely to be overweight

than other women. This may be attributed to the fact that

exercise is more difficult for such women and dietary

choices may be restricted to high calorie processed foods

due to ease of preparation [10].

Additionally, some disabilities and chronic conditions

such as multiple sclerosis (MS) and other autoimmune

diseases are linked with dysfunctional uterine bleeding and

oligo-ovulation. There is an especially high prevalence of

dysfunctional uterine bleeding with myasthenia gravis (MA)

and Sjogren’s syndrome [8,11]. Thus, such women may be

at increased risk for developing endometrial cancer.

Ovarian Cancer

Ovarian cancer will affect approximately 25,400 women in

the U.S. in 1998 [7]. It is a very sneaky malignancy as it

frequently does not manifest with any signs or symptoms

until progression has occurred. Women with disabilities,

although not genetically predisposed to ovarian cancer as

a group, may exhibit some of the characteristics commonly

associated with increased risk for developing ovarian

cancer, such as nulliparity and infrequent oral

contraceptive use. Regular pelvic exams potentially may

pick up an adnexal mass even before symptoms occur.

Cervical Cancer

Prevalence of cervical cancer has decreased significantly

because of improved Pap smear screening rates [12]. In the

general population, cervical cancer is now the least

common cancer of the female reproductive system where

previously it ranked much higher. Unfortunately, these

statistics are not reflected in a decreased prevalence of

cervical cancer in women with disabilities. In fact, the

National Cancer Institute reports that only 65–70% of

women with disabilities receive cervical cancer screening

as opposed to 80% of the nondisabled population of

women.

The basic Pap smear, which is such a simple and

straightforward screening examination, can pose a number

of obstacles for the clinician and the patient. Getting on the

examination table is only one component of performing a

Pap smear. Clearly, if the examination table is too high

women may avoid getting a Pap smear. Additionally, during

the acquisition of the Pap test, the woman’s legs need to be

spread adequately and held in position in order to acquire

complete specimens. Women who have impaired leg

function or hip joint flexibility may encounter pain and

limitations in getting into the appropriate position when

using standard table equipment. Consultation with the

patient as well as the utilization of adjustable boot stirrup

leg holders may be of great benefit in accomplishing this

task with minimal difficulty (Figure 1 Exam Table & Figure 2

Boot Stirrups).

Because providers may discount the disabled woman’s

sexuality and her risk for exposure to human papilloma

virus (HPV), a virus strongly linked to cervical cancer, the

necessity of regular Pap smear screening may not be

acknowledged. Additionally, some types of disability may

put a woman at increased risk for developing cervical

dysplasia due to the effects of immunosuppressive

medications [13].

The Menstrual Cycle

Menstrual flow control may pose significant problems for

many women with physical limitations. Even regular

menstrual periods may present serious hygiene issues. The

difficulties in combining bladder regimens with perineal

hygiene during menses may also be very troublesome.

Clearly, sterile techniques for intermittent self-catheterization

are nearly impossible. This is more pronounced for the working

woman who needs to contendwith these difficulties in the artificial

environment of the work site rather than in her home setting where

equipment and space is more likely to be adapted to her needs.

Frequently, dexterity limitations and balance issues

complicate the use of tampons. It is thus not surprising

that some women consider the relief of hysterectomy even

though menstrual hygiene is not an accepted indication for

this surgical procedure.

There are a few disabilities and chronic disorders that

are associated with menstrual irregularities such as MS that

compound the above issues with lack of predictability.

Menstrual calendars can be collected and hematocrit can

be checked to determine whether menorrhagia is occurring

for those with regular or irregular cycles. In the

nonambulatory patient, oral contraceptive therapy may be

contraindicated to combat this difficulty. The minipill will

eventually lead to endometrial atrophy but again is linked

with irregular menstrual spotting [14]. Nonsteroidal anti-inflammatory

agents may be helpful in decreasing menstrual flow if other structural reasons for

menorrhagia have been excluded [15]. Women with unpredictable

menses can be safely managed with cyclic Provera

regimens after a comprehensive endocrinologic evaluation

has been completed to rule out abnormal thyroid levels or

prolactin elevation [16]. Oral contraceptives can also be

used to regulate the menstrual flow but may not be safe for

women with mobility impairments [15,16,17].

Comprehensive evaluation of dysfunctional uterine

bleeding should always include a pregnancy test. It is also

important to rule out any contributing structural pathology

such as cervical or endometrial abnormalities [14].

Contraceptive Options

Contraception may be a neglected issue in the

comprehensive health care of women with disabilities.

There has been an assumption by the medical community

that because the woman is in a wheelchair, has difficulty

with finger dexterity, ambulation, or has a speech

impairment, that she cannot be or is not sexually active.

Thus, the ideal opportunity to discuss contraceptive

choices and safe sex messages may be lost during the

medical encounter. This clearly should not occur.

Professionals need to gain knowledge regarding risks and

benefits of contraceptive options for women with

disabilities and different chronic diseases in order to

maximize efficacy and minimize risk.

Disabilities are multi-fold. Choices for every patient need

to be individualized because some women may not fit into

a precise category. However, for purposes of contraceptive

choices, two groups can be considered: those with mobility

impairments and those with chronic disease states.

For women who are not at all ambulatory, such as in

paraplegia, oral contraceptives containing estrogen may

put the woman at a slightly increased risk for development

of deep vein thrombosis (DVT) compared to the

nondisabled woman [17]. Certainly, oral contraceptives

containing third-generation progestins should be avoided

with any woman with a disability, even if she is semi-ambulatory,

because of increased risk of thrombotic events

with these compounds [18].

Women with systemic lupus erythematosus (SLE) may be

predisposed for thrombotic events due to circulating

hypercoagulability factors such as anticardiolipin

antibodies and lupus anticoagulant. Estrogen-containing

oral contraceptives are contraindicated for this reason

[19]. Not all immunologically based disorders behave

similarly. Women with rheumatoid arthritis (RA) can safely

take oral contraceptives. Indeed, symptoms of RA have

been reported to improve in women using this method of

contraception [20].

Depo provera is useful in women with seizure disorders

as estrogen levels are suppressed. However, it is not

suitable for the nonambulatory patient. The

hypoestrogenic effect of this contraceptive method

compounds the influence of her immobility on skeletal

structures, increasing predisposition for the development

of osteoporosis [21].

Progestin-only oral contraceptive methods ("minipill")

may be an effective alternative when combined with barrier

methods. This involves recruitment of the partner. Where

possible, involving the partner in contraceptive choices is

helpful.

Norplant is another progestin-only method in which

serum estradiol levels remain normal. However, the six

rods may be difficult to insert and extract, especially in

women with arm contractures [22]. New systems with 2

rods are being developed which might make this option

more attractive [23]. In women with a history of cardiovascular disease,

the intrauterine device (IUD) might be considered. The

exception would be the woman who has cardiac valvular

disease. The minimal transient bacteremia which can be

associated with insertion of the IUD may pose a very

serious danger [24].

Infection Management

Urinary Tract Infections

Urinary tract infections (UTIs) may be more common in

women with disabilities and chronic disease states. While

all UTIs must be individually managed, there are some

general recommendations for the treatment of UTIs and for

bladder management. All women with urinary tract

difficulties should undergo a baseline urodynamic

evaluation to determine the appropriate management of

bladder voiding as well as follow-up routines. However,

women with significant urinary tract dysfunction should be

referred to a urologist to work together with the woman’s

health care provider on these issues.

Voluntary control of urination may be affected in

neurologic conditions including cerebrovascular accidents

(CVA), traumatic brain injury (TBI), and MS, to name a few.

Frequently, in these conditions, the detrusor muscle will

function improperly causing retention or involuntary

voiding [25]. For those with conditions affecting

micturition centers resulting in loss of voluntary bladder

control, adaptive strategies for bladder management may

be used. Those with neurogenic bladder, such as in the case of

SCI, require periodic renal ultrasounds to rule out the

development of hydronephrosis and nephrolithiasis which

are both not uncommonly seen in women with SCI [26].

There are some women with neurologic conditions that

may be effectively managed with anticholinergic agents

that improve detrusor muscle control. Others need

combinations of these medications with bladder emptying

routines such as intermittent self-catheterization for those

with good hand-eye coordination, in-dwelling Foley

catheters, or urostomy pouches.

It is not uncommon for health care providers to

overtreat asymptomatic bacteriuria or bladder bacterial

colonization. This can encourage the development of

resistant bacteria which may ultimately require

intravenous antibiotics. It is thus useful for the clinician to

understand that many of these women harbor a low level

of bacteria on a chronic basis in the bladder which is not a

true infection [25]. To discourage the development of full-blown

UTIs in such patients, urine should be acidified and

adequate fluid intake should be encouraged [27]. However,

if a UTI does develop, these methods are not adequate to

treat a full-blown infection. The least aggressive

antimicrobial agent to which the bacteria is sensitive to

should be chosen. Overuse of quinolones may be

detrimental in the long run and is not advisable in these

cases.

Vaginitis

Vaginitis is one of the most common complaints in office

practices offering women’s health services. This may be

even more apparent when dealing with women with

disabilities and chronic conditions. Wheelchair users are

especially predisposed to develop not only contact

dermatitis and vulvovaginitis due to moisture and irritation

but also monilial overgrowth. These two conditions can

compound each other and can result in serious problems,

even leading to perineal ulceration. Women who are on

chronic corticosteroid therapy or have disabilities due to

diabetes (e.g., amputation) may also be predisposed to

recurrent yeast infections.

Therapeutic and prophylactic measures may be quite

effective in treating and preventing this condition.

Intervaginal antifungals should be complemented by labial

and perineal topical antifungal low-dose steroid ointment

for short-term therapy [28]. Prophylaxis may be achieved

by the administration of moisture-absorbing antifungal

powder over the entire perineum. For women who have

severely impaired finger dexterity or who rely on personal

care assistants, oral fluconazole may be considered as an

alternative therapy [29].

It is critical to not assume that every vaginal infection in

a woman using a wheelchair is a yeast infection. Indeed, in

the nondisabled population bacterial vaginosis is as

common as fungal vaginitis. Additionally, other causes of

vaginal discharge such as trichomoniasis and sexually

transmitted diseases must not be overlooked. It is

therefore essential to obtain cultures on every woman

prior to instituting therapeutic regimens.

Sexually Transmitted Diseases (STDs)

The southern region of the United States has had higher

rates of primary and secondary syphilis and gonorrhea

than the remainder of the country. The reasons for this

regional difference are not well understood but may in part

be due to racial and ethnic distribution, as well as poverty

and availability of quality health care services [30]. It is

important that women’s health care providers always test

for sexually transmitted diseases (STDs) on any woman,

including those with disabilities.

STDs may result from consensual or forced sexual

encounters. Diagnosing an STD may therefore provide an

opportunity for the health care practitioner to not only

treat the infection but also to provide safe sex messages

and education and create an open dialogue for the

discussion of abusive relationships.

Two factors may limit detection of STDs in women with

disabling conditions. The woman herself may have sensory

impairments that may limit self-diagnosis. This sensory

impairment could be in the form of pelvic sensory deficits

replacing painful sensations with nonspecific symptoms and

findings such as increased spasticity and malaise [31]. Other

sensory deficits may take the form of visual impairments

where the woman may be unable to observe a perineal

lesion such as a syphilitic chancre or condylomatous lesion,

depending on a partner or an attendant to notice and

describe these abnormalities to her. Finally, neuropathies

may diffusely affect sensory abilities impairing the woman’s

capacity to recognize an uncomfortable condition.

Secondly, health care practitioners may be unfamiliar

with altered manifestations of STDs in women with

disabilities. For example, a woman with SCI may describe

markedly increased lower extremity spasticity and fatigue

rather than complaining of pelvic pain. Perineal ulcers may

also be confusing to the practitioner if STDs are not under

consideration. In women who use a wheelchair, perineal

ulceration may be assumed to be a pressure ulcer or a

decubitus, where it may actually be an ulceration from a

herpetic lesion or dermatologic manifestation of the human

immunodeficiency virus (HIV) [32]. Thus, it is critical for the

practitioner to test for all possible STDs including syphilis

and HIV.

Hepatitis can also be diagnosed in women with

disabilities, especially acquired disabilities. Women who

have undergone blood transfusions due to trauma prior to

testing for hepatitis C may be infected with this virus.

These women may need long-term liver function testing

and monitoring [33]. Others may have acquired their

disability due to gun shot wounds, motor vehicle

accidents, and other violent incidents where alcohol and

drug abuse were involved. These women are clearly not

only at risk for harboring hepatitis B but also HIV and

should be tested.

Pregnancy

Women with many types of disabilities and chronic

conditions are well integrated into society and share the

desire to start families. There may be unique

considerations that the woman and her health care team

may have to confront but attitudinal barriers should not be

one of them. An open-minded, accepting attitude is

essential on the part of obstetricians and other members of

the health care team. It would be truly detrimental to give

the woman with a disability who is newly pregnant

messages such as, "You are, of course, going to want an

abortion," or "We don’t take care of pregnant women in

wheelchairs in this office." These messages are frightening

and upsetting to the woman as she may be reaching out for

support and assistance from knowledgeable professionals

to maximize favorable pregnancy outcomes.

A team approach between the obstetrician, neurologist,

physiatrist, occupational and physical therapists, and

anesthesiologist is essential during the prenatal and post

partum periods. Their input, expertise and suggestions

may make the difference between a frustrated, frightened

pregnant woman or new mother prone to injury and a well-adjusted

individual with support systems and coping

strategies well established. This team approach can also

enhance the woman’s feeling of comfort and security

knowing that more than one professional is looking out for

her welfare.

Pregnancy may affect women without disabilities in

significant ways such as decreased mobility, fluid retention,

bladder dysfunction, increased vaginal and urinary tract

infections, etc. As previously discussed, women with many

types of disabilities may be predisposed to these

conditions to start with. When normal physiologic changes

in pregnancy compound the picture, symptoms and

manifestations may be more severe than in the

nondisabled pregnant woman.

In addition to increased incidence of bladder and

vulvovaginal infections, the woman may be at increased

risk for losing her balance and for developing new pressure

points from wheelchair contact as her body changes. The

perceptive obstetrician will remain vigilant to be on the

lookout for these as well as other issues specific to her

condition.

Certain disability types may pose unique problems in

the prenatal, intrapartum and post partum periods.

Following is a brief discussion of how pregnancy affects

women with SLE, MS, or SCI. For additional information

regarding pregnancy and disability, see Suggested Reading

at end of text.

Systemic Lupus Erythematosus (SLE)

SLE is a common autoimmune disorder primarily having its

onset of manifestations in women of reproductive age. The

disease process is closely linked with elevated levels of

circulating hypercoagulability factors such as lupus

anticoagulant and anticardiolipin antibodies [34].

Pregnancy in and of itself is a hypercoagulable state. In

most women this small increase in hypercoaguability does

not pose significant risk. However, because women with SLE

have an underlying predisposition for thrombotic events,

these can be commonly seen in women with SLE in all

stages of pregnancy.

There is an increased risk of fetal loss in all trimesters,

increased incidence of intrauterine growth retardation,

premature placental aging with thrombosis, and pre-eclampsia.

DVT, pulmonary embolus, and CVAs have also

been reported in women who have SLE. Because of the

above complications, careful monitoring of the pregnant

woman with active disease is critical.

Prenatal counseling may allow deferment of pregnancy if

the disease process is unstable or active until a more

suitable healthy plateau has been achieved. Interventions

have been variably successful in diminishing these

complications. These include aspirin, corticosteroids, and

heparin [34].

Multiple Sclerosis (MS)

Multiple sclerosis is also a very common immunologically

based disorder primarily affecting women in the

reproductive age group. Women with stable MS can safely

carry a pregnancy to term. Occasionally corticosteroids

may be needed if the MS flares during the prenatal course

[35].

Post partum exacerbations of MS are quite common and

occur in up to 30% of women within one month post

partum. These exacerbations usually abate over a period of

a few months. There are new experimental agents being

tested to decrease incidence of post partum exacerbations,

such as gamma globulin. Studies are ongoing to evaluate

efficacy of this treatment [36].

The obstetrician and neurologist need to work closely in

the management of the pregnant and post partum woman

with MS to resolve issues of MS medications and lactation.

Spinal Cord Injury (SCI)

There is an increasing number of reported cases of

pregnancy and women with SCI in the obstetric,

gynecologic, and rehabilitation literature. Proper and

knowledgeable management has a high degree of success

and is usually associated with good outcomes [37].

Unfortunately, if the clinician and staff are not

knowledgeable and prepared to evaluate the pregnant

woman with SCI, there can be devastating consequences.

The most significant concern in the pregnant woman with

SCI occurs in women who have paralysis above the level of

T-6. These women have a significant increased risk of

autonomic dysreflexia during all stages of pregnancy [38].

Reviewing Table 1 and the introductory section on

pregnancy and women with disabilities, it is clear that the

risk for the development of autonomic dysreflexia is

present during the prenatal period from UTIs and decubitus

ulcers, as well as premature labor and even fetal activity in

women with quadriplegia [39]. These symptoms may need

to be monitored for exacerbation and identifiable stimuli

removed if possible.

During labor, the risk for development of autonomic

dysreflexia is quite significant in susceptible patients

(Table 2). Painful stimuli triggering autonomic dysreflexia

are from visceral organs, all of which are affected during

labor. These include the uterus, cervix, bladder, and bowel.

Involvement of an anesthesia team and invasive cardiac

monitoring may be required in some patients.

In all pregnant women with disabilities, choice of mode

of delivery should be for obstetric indications only, not

automatically assigned because the woman has a physical

disability. Lactation consultants and occupational

therapists should be recruited early on to develop

strategies whereby the woman will be most successful in

her attempts to breast feed. Supportive pillows and other

positioning adaptations can improve success rates. Special

considerations are the potential for dysreflexia in women

with high spinal cord lesions due to breast stimulation and

excess fatigue in nursing mothers with MS. The advice of

the pediatrician should be sought concerning any

medications the woman is taking concerning her disability

regarding safety issues with breastfeeding. It has been

suggested that lactating mothers can develop osteoporosis

that is probably transient. The development of this

osteoporosis can be minimized if adequate nutritional

supplementation is maintained throughout the nursing

period [40,41].

Infertility

Infertility affects many women in this country. Those with

disabilities are not more or less likely to suffer from

infertility than others, although this has been a common

misconception. Certain disabilities and chronic conditions

such as rheumatoid arthritis (RA), diabetes, and Sjogren’s

syndrome may be linked with ovulatory dysfunction that

can be evaluated and treated if identified [42]. It is

essential to accept the infertile couple as deserving of

complete and thorough evaluation and not assume any

infertility problems are a result of the woman’s disability

(Table 3).

Execution of the evaluation may require modifications in

standard techniques. Examples of this include monitoring

for autonomic dysreflexia during endometrial biopsy

performed for ovulation assessment and alternative

choices for tubal patency ascertainment for women with

severe hip contractures as these women may poorly

tolerate positions required for dye injection [43]. If

ovulation induction is indicated, special monitoring

equipment must be on hand for women at risk for

autonomic dysreflexia as ovarian enlargement may be a

trigger for this condition [44].

Osteoporosis

The prevalence of osteoporosis in women with disabilities

and chronic medical conditions is not known. However, it is

logical to infer that women who are on corticosteroids or

are not regularly weight bearing may be at risk for an

increased development of osteoporosis.

Preliminary data is being compiled examining bone

density measurements of young women with disabilities

and early unpublished reports are confirming what was to

be expected: that some of these young women have

advanced osteoporosis. It is a fallacy that because these

women may not be very physically active that skeletal

integrity is less important for them. Indeed, added

morbidity and loss of functional independence can be the

consequence of a fracture at any site in women with

disabilities. Thus, early diagnosis and intervention with

preventive therapies is critical.

Osteoporosis prevention and treatment should be

initiated as soon as possible in the young woman’s life.

Dietary calcium supplementation, including skim milk

products, provides teens and young adults with essential

building blocks of adequate bone matrix formation and

does not put them at risk for excessive weight gain. Women

are continuing to build bone throughout young adulthood,

and peak bone mass is achieved in their early thirties [45].

Women with certain disabilities have been discouraged

from calcium supplementation as there has been fear that

this would promote nephrolithiasis [46,47]. This issue may

or may not be applicable in all women with disabilities.

Dietary calcium may not be as strongly linked with

hypercalcuria compared to exogenous calcium

supplementation. These issues need to be discussed with

the urologist caring for the woman. Thus said, calcium

supplementation at a dose of 1500 mg, vitamin D at a level

of 600 IU and magnesium work synergistically with other

anitresorptive agents to treat osteoporosis [48,49].

Physical activity of any kind is beneficial to health.

However, only physical activity that involves active weight

bearing appears to be effective in combating osteoporosis

[47]. There have been some studies looking at whether

aquatic exercises provide a different type of weight bearing

and may still be effective. These issues are under study

[50]. It does not appear that standing frames and tilt tables

used by some paraplegics to assume an upright position

have any beneficial effect on osteoporosis [51]. Thus, in

order to minimize risk of osteoporosis, dietary, medication,

and physical activity factors should all be optimized.

There are some therapies which have shown beneficial

effect on combating osteoporosis. All of these medications

have strengths and weaknesses, benefits and risks. The most

commonly used medications include calcitonin, alendronate,

actinil, and estrogen replacement therapy (ERT) [52].

Calcitonin is now available in a nasal spray form. It is an

effective, short-term treatment for osteoporosis and has

analgesic properties. However, its action primarily affects

trabecular bone such as seen in the spine. Cortical bone,

such as in the hip or femur, does not appear to receive

significant improvement after treatment with calcitonin [53].

Alendronate (Fosamax) is a bisphosphonate which is

becoming more widely used across the country to treat

osteoporosis. It may be especially useful for young women

who have developed osteoporosis due to disability even

prior to the development of the osteoporosis which is

linked to the menopausal state. Alendronate has been

shown to improve bone mass in both spine and hip

(trabecular and cortical bone) and is relatively well

tolerated.

One of the side effects of alendronate that may be

troublesome for some women with disabilities is the

regimen for ingestion. The woman must take the

medication with water on an empty stomach and sit

upright for a period afterwards. This may be difficult for

women with dysphagia or severely disabled women who

are not able to remain erect. These issues should be

discussed with the patient prior to instituting this

intervention.

Serum and urine markers may also be used to follow

response to any antiresorptive therapy in order to adjust

dosing or alter regimens. Examples of urine markers include

hydroxyproline, pyridinolenes, and galactosyl

hydroxylysine (GHYL) [54]. Examples of serum markers

include alkaline phosphatase and osteocalcin. These

markers may be of limited use and may not be

reproduceable. Osteoporosis should be documented by

dual x-ray absorptiometry (DEXA) for initial diagnosis and

follow-up evaluation on a yearly basis [55]. Serum and urine

markers are sometimes used between DEXA evaluations.

Many DEXA machines are not equipped with accessible

examination tables, and it is the responsibility of the

clinician to alert the radiology staff so that adequate lifting

help is available. Prior to instituting therapy it is important

to ascertain that no underlying metabolic or hormonal

derangements are present. Parathyroid hormone (PTH), 25-

hydroxy vitamin D and serum calcium with 24 hour urine-calcium

excretion are some examples of assays that can be

used to rule out different factors which could be

contributing to osteoporosis [56].

Menopause

With improved health care and integration of women with

disabilities into mainstream society, women with even

severe disabilities and chronic medical conditions are

living full and successful lives extending into the

menopausal years. This fact has led to an increased focus

on management approaches to maximize health and

minimize morbidity due to secondary conditions in this

population.

Menopause may occur at an earlier age in some women

with immunologic disorders and in women with MS [57,58].

Therefore, diagnostic evaluations and intervention may need

to occur at an earlier age than in the general population.

Estrogen has global effects on many tissues in the body,

and most women are not aware of these effects until

estrogen deficiency develops. In addition to the prevention

of osteoporosis, estrogen also maintains urinary tract

tissues, skin integrity, and has a beneficial affect on the

lipid profile. Estrogen has a direct positive effect on heart

muscle and blood vessels by improving cardiac muscle

contractility and inducing vasodilatation in coronary and

peripheral vasculature.

When evaluating the newly menopausal woman with a

disability, the risk profile needs to be assessed. If the

woman has been physically inactive for many years, not

only is she at risk for osteoporosis, but her cardiovascular

reserve may be already compromised. Thus, estrogen

replacement therapy (ERT) may be an even more significant

issue in such women [59].

Bladder function and dysfunction is a frequent

complaint seen with disabilities and chronic neurologic

diseases. Estrogen deficiency impacts on vasculature, soft

tissue and supportive structures in the urinary tract. The

underlying musculature is unchanged. However, the woman

might have been utilizing her intact structures to

compensate for a weak or dysfunctional detrusor muscle

and thus when these surrounding supports diminish,

increased bladder dysfunction may develop [60].

Skin integrity and pressure points on the buttocks,

sacrum, and iliac crests in wheelchair users may be more

prone to breakdown due to alterations in the integument. It

may be necessary to re-evaluate cushions for wheelchairs

at this stage to prevent the development of decubitus

ulcers.

Vasomotor instability does not occur in all menopausal

women, and some women have more severe episodes than

others. Women with MS or quadriplegia who have pre-existing

sensitivity to temperature fluctuations may be

extremely symptomatic in response to vasomotor

instability. In MS patients this can manifest as an

exacerbation and in a quadriplegic woman as dysreflexia

symptoms [61]. Clinicians should be aware of these issues

in such special populations.

Prior to instituting any hormonal replacement therapy it

is critical to have the breast tissue adequately evaluated.

Women with sensitivity to fluctuating hormone levels may

benefit from divided dosages of estrogen rather than single-dose

therapy for more steady blood levels [62]. Women

who have dysphagia may benefit from smaller sized tablets

such as micronized estradiol (Esterase), esterified estradiol

(Estratab) or transdermal estradiol patches rather than the

larger sized tablet of conjugated estrogen (Premarin).

Transdermal forms may also be worth considering for

women with SCI or in other women who are minimally

mobile [63].

If there is a concern of thrombosis because of

underlying disability, hypercoagulability assays can be

obtained to investigate this possibility. Some of these

assays include anticardiolipin antibody, protein S activity,

prothrombin fragment 1.2, thrombin-antithrombin III

complex, antithrombin III, D-Dimer, tissue plasminogen

activator antigen, plasminogen activator inhibitor-1 (PAI-1),

and factor V Leiden mutation [64,65,66,67,68]. These

hypercoagulability assays are usually not necessary for

every disabled woman. However, they are especially helpful

in women who have underlying high risk histories such as

women with history of transient ischemic attacks [69] and

deep vein thrombosis (DVT) many years prior. Withholding

estrogen from these women if the hypercoagulable state is

not in evidence may not be appropriate. The choice of

whether or not to use ERT should be made in partnership

with each patient and other physicians involved in her

care. As these are special situations there can be no

generalizations about management approaches for these

women.

Abuse

Physical, psychological and sexual abuse is a significant

problem for people with disabilities. According to a recent

survey, up to 50% of women with disabilities have been

abused at least once in their lives, and frequently a single

woman is abused multiple times. It is highly possible that

this 50% statistic is an underestimation because many

women are afraid to report abuse [70].

The perceived vulnerability of an individual that may

need assistance for some or all activities of daily living is

an ideal opportunity for a perpetrator who is inclined to

take advantage of the woman in many ways. The abuser

can be a personal care attendant, a family member, or a

partner. Frequently the abuse may begin subtly while the

abuser takes stock of how much abuse can occur without

being noticed. Often, psychological abuse and withholding

of care, mobility devices, medication, or money precedes

actual physical violence that may leave visible marks such

as scratches, burns, or bruises.

The woman victim in these cases is in a very

compromised position. Her avenues of escape may be

limited. Asking for help may actually be dangerous because

if she is discovered, the abuse may accelerate. To

compound these frightening situations, battered women’s

shelters are frequently not accessible in a number of

critical ways such as stairs to enter the facility, narrow

doorways, small bathrooms, bunk-bed shelters, access to

attendant care and lack of trained personnel for

communication disorders such as in vision and hearing

impairments. All of these obstacles combined render the

abused woman virtually trapped in the abusive situation.

Occasionally these women will enter the medical system

for other reasons such as medical problems, i.e., fevers,

rashes, and other unrelated complaints. It is critical that

the health care system be tuned into any sign, however

subtle, that these women are being abused. These efforts

may be hindered by the perpetrator who frequently may

hover over the woman. This can be mistaken for great

concern when it is actually a way of preventing any

personnel from getting too close to the woman or exposing

parts of her body which have been injured but are covered

with clothing. Questioning the patient about psychosocial

issues in private may also be threatening to the

perpetrator. Thus, critical opportunities for intervention

may be blocked and thwarted. These situations can be

extremely delicate if abuse is suspected and the

perpetrator fears discovery. The violence may accelerate

or the woman can be forced to relocate with the abuser.

It is essential that all medical encounters with every

woman with a disability, no matter what the reason for the

encounter, be held behind closed doors and in complete

privacy. This should occur for some portion of the exam

time even when a woman’s companion is there to assist

her. It is important to emphasize that this is clinic, hospital,

or office policy for the woman to have privacy. Facility staff

must be gentle and firm with any individual accompanying

the woman with a disability regarding these policies.

The perpetrator of the abuse will frequently lurk near

the examination room attempting to overhear

conversations within. This is not to imply that all

attendants and family members of women with disabilities

are in any way taking advantage of them, but if they are

not, they will not be at all threatened by being asked to

give the woman and her medical team privacy.

If abuse is uncovered, it is important to identify

accessible alternatives for the woman if it is felt to be

unsafe for her to return to her environment. Social workers

need to be available and a list of accessible shelters or

homes in the community need to be on hand so that the

woman will have options when she is brave enough to

reach out for help.

Sexuality

Sexual feelings are part of the human condition. All

individuals have a sexual identity which is composed of

gender identity, body image, self-esteem, and the need for

closeness with other individuals. It is a great

misconception that sexuality is equivalent to sexual

intercourse.

Sexual imagery, sexual sounds, and sexual thoughts, are

all part of the sexual experience. Unfortunately, our society

often defines physical attractiveness in a woman as being

equivalent to a tall, slender, agile body and a face with

perfect, regular features. Clearly, only a very minute

percentage of women fit into this idealistic mold.

For a woman with a disability, sexuality develops in

layers. She must first develop an identity of herself as a

girl/woman of worth who has something to offer because

she has qualities about her that are desirable and

attractive. Thus, a woman with a facial disfigurement,

speech impediment, or any visible disability may gain

positive self-esteem and confidence by interacting with

others with a sense of humor, showing interest in others,

and/or giving of herself in ways that only she can do. This

will make her a beautiful person in her own mind as well as

in the perceptions of others. It is frequently difficult for girls and women,

especially with newly acquired disabilities, to grapple with these

issues and focus on what is still very positive about their

abilities and personality. To build a sense of self-worth and

self-esteem and improved body image, the disabled

individual might be encouraged to be involved in things

that she does well. As she gains confidence in her abilities,

her self-esteem improves, and she may become more

willing to venture out into other social experiences which

may be equally satisfying and fulfilling.

It is not unexpected for a woman with a disability to be

unsure of her ability to give sexual pleasure to others, and

this is clearly a significant part of the sexual experience.

Women with impaired physical abilities may be encouraged

to realize the alternative techniques for physical and sexual

pleasuring which can be very mutually satisfying.

There are a number of myths about the sexual

experience for women with disabilities. A common

misconception is that women with spinal cord injury and

other paralyzing conditions have no genital sexual

sensation. Research into these issues has confirmed what

these women have been experiencing—that there are intact

sexual pleasure pathways in women with spinal cord injury

and other similar conditions [71,72].

Also, the "traditional" sexual positioning ("missionary

position") may not work very well for women with

disabilities and their able-bodied or disabled partners.

They may find that a number of different adaptations may

work for them much more successfully [73]. Medical

professionals should encourage creative exploration and

alternative modalities for sexual pleasuring between

partners.

Conclusion

Recognizing that women patients with disabilities are

similar to all other women is the key to leveling the playing

field and providing them with equal health care. At the

same time, it is essential for health care providers to adjust

and tailor all aspects of care and help to take into account

the individualized needs of women with disabilities or

chronic medical conditions. Listening to and learning from

our patients can enable mutually rewarding rapport

between the woman and her health care team and improve

the health care services provided.

Acknowledgements

Dr. Welner gratefully acknowledges the assistance of Stephen

Burns in preparation of this manuscript and the guidance

and support of her parents, Mr. and Mrs. Nick Welner.

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