Cody Unser

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	More than a half million women in the United States are estimated to be dealing with spinal cord traumatic injury or disease. Individuals who survive the first year after such an event have an overall life expectancy that is almost normal (90%). Clearly, those women need ongoing reproductive health care that is comprehensive, consistent with the recommendations of the American College of Obstetricians and Gynecologists, and affirms their dignity. Having said that, there are a number of potential barriers and issues that can impair optimal care for this patient population.

The following is a Top 8 list of ways to optimize an outpatient visit for reproductive health care for women with spinal cord injury or disease. The recommendations are based on observations of a patient, Cody Unser, and suggestions from 

 Editorial Board Member Sharon T. Phelan, MD. Ms. Unser has been a paraplegic at a T4 level since age 12, when she experienced transverse myelitis.  She has been a strong advocate regarding women’s health care issues for wheelchair-dependent women. In this article, Ms. Unser discusses many of the challenges she has had when interfacing with medical offices, especially ob/gyn offices. Dr. Phelan offers her suggestions for how best to accommodate such patients and address some common issues that may arise during their exams. 

1. Making an appointment with the ob/gyn provider

 As a young woman living with paralysis, navigating the concrete world has its challenges. I have learned the hard way that no matter where I go, preparation is key in order for me to fully engage with life’s many activities. One of the biggest lessons I’ve learned is to never assume that just because you are going to a medical or health care office, the clinic is wheel-chair accessible. 

 As more patients require accommodations at their visits, it is increasingly important for the office staff to be more proactive by asking patients whether they need any accommodations at their appointments. This could mean a sign language interpreter, availability of a particular exam room or wheelchair access.  For returning patients, it’s important to have a system that clearly notes that unique services are needed. 

This is particularly important if the accommodation requires special scheduling of a particular exam room (e.g. one with electric height adjusting table, wheelchair accessible) or support personnel. If the handicapped parking area is not clearly evident, instructions as to where to park should be offered to patients. Otherwise, they may have to be rescheduled, which can be an inconvenience for all.  

2. Mobility and access through the office

: How a patient is treated from the very start of such a personal appointment impacts her impressions of the rest of the visit. I am proud of my independence and want do the things I can do by myself, but I will ask for help when I can’t do something. Being able to drive myself to my ob/gyn appointment and get around the clinic in my wheelchair is one of those things that empowers me to do more to take care of myself.

In my experience, reception desks are typically too high. A sense of being welcomed and treated with respect and dignity begins at the reception desk, where patients share information about their personal lives, insurance, and contact information. For women living with paralysis, shouting answers to the receptionist’s questions can be intrusive and may often leave them feeling like they don’t matter.

I particularly need bars next to the toilet because I can spasm on it when I transfer. Being able to grab onto the bars helps keep me from falling on the floor.  Also, exam rooms are usually too small to negotiate a wheelchair.

: Access throughout the building in which your practice is located may present barriers to a wheelchair-dependent patient. Is it compliant with the Americans With Disabilities Act (ADA)? Does the entrance door have an automatic opener? Is a ramp or elevator available as an alternative to any stairs? If your office entrance is off a hallway, does the door to the hallway have an automatic opener? If not, installing a doorbell and posting a simple sign to ring for assistance can be helpful, both to patients with disabilities and those who are elderly. is helpful 

Ideally, the check-in location should be either at a desk or window low enough to allow eye-to-eye contact between a patient and the receptionist. If that’s not possible, the receptionist should come out to a patient to check her in. Maintaining patient privacy per the Health Insurance Portability and Privacy ACT (HIPAA) is critical but preserving a patient’s dignity and demonstrating sensitivity to her needs is also important.   

Although ADA compliance may not be a problem in newer physical facilities, it is something that needs to be checked. Can a person in a wheelchair access your hallways, doorways and bathrooms are there “assist” bars in the bathrooms? Are the openings wide enough for larger wheelchairs used by obese individuals? If your answer about accessibility is no, you may need to see if there is a way to make at least one exam room, consult room, and bathroom wheelchair-accessible from the reception area.  Tax incentives are available to businesses that incur expenses to increase accessibility for individuals with disabilities. The “Tax Deduction to Remove Architectural and Transportation Barriers to People with Disabilities and Elderly Individuals” (Title 26, Internal Revenue Code, Section 190) allows a deduction for “qualified architectural barrier removal expenses not to exceed $15,000 for any taxable year.

: When I discussing my medical history with the nurse and ob/gyn, I explain why I am paralyzed. I have learned to express my goals for an appointment and volunteer any question or concern I have about my sexual and reproductive health. However, many women are not as confident as I am, and may not advocate for their own health. I would prefer a candid discussion with my provider regarding my needs. Communication is key between patient and doctor. As a woman living with paralysis, I encourage all women who value wheels more so than shoes to express concerns about their bodies openly and freely with their ob/gyns. 

: Many people have a tendency to see individuals with disabilities as ”broken.” A provider who has that bias may assume that a patient in a wheelchair is not sexually active or at risk of having a sexually transmitted infection (STIs) or becoming pregnant, or that she wouldn’t have sexual complaints. Ob/gyns should be proactive about discussing reproductive health issues with all patients of reproductive age. 

women need to be given the same opportunity to share their issues and concerns regarding sexual activity as other patients their age. This includes all routine screening recommended for women in their age range, such as for STIs. Don’t forget to screen for victimization and abuse. It is just as prevalent in women with disabilities as in the non-disabled population.

: Women living with paralysis and other disabling conditions can have loving sexual lives and successful pregnancies. When it comes to family planning, having a comprehensive healthcare team is vital because we are often seen as at high risk. The mechanics of my body are somewhat different in the bedroom and there are times when my bladder and bowels release involuntarily. I take medication that helps with bladder incontinence but it has side effects of dry mouth and decreased vaginal lubrication. I need to be able to discuss those and similar issues openly with my provider. Just like every other woman, I want intimacy and to be loved. I have yet to experience being pregnant and and I don’t know how my paralysis will impact my experience in creating a family, but I want to be able to discuss that with my provider when the time comes. 

: Misconceptions about sexual interest and activity in women with physical disabilities are commonplace among both the public and health care professionals. Women with disabilities have a similar level of sexual desire as their non-disabled peers. Therefore, they have the same concerns and questions regarding childbearing and contraception. Depending on their desires and limitations, these women need the same discussions as other patients their age. In fact, it may be more important because the medications they are using or the activities they engage in may place them at greater risk of side effects or complications. 

Depending on the degree and source of a patient’s disability, a provider may face unique challenges and issues in identifying the best contraceptive options for her. Women with limited mobility may be at increased risk of deep venous thrombosis or osteoporosis. Preconceptive counseling can be critical to the safety of mother and infant. Pregnancy in a woman who is wheelchair-dependent has unique risks and challenges that may best be addressed by a maternal-fetal medicine specialist. 

: Before my annual exam, I always outline what works best for me in order for the exam to go smoothly. The exam table is probably the biggest structural barrier in an ob/gyn clinic for women living with some form of paralysis. Ironically, it is where the most vulnerable and personal part of the annual exam takes place and yet it is the one thing that strips women with paralysis of their dignity and their independence. If the exam table is too high for me to transfer onto by myself, I either have to bring someone with me or ask one of the medical staff members to pick me up and place me onto the table. 

Because I am paralyzed and my legs will spasm, I don’t need the stirrups. I hold my legs up myself, with a nurse or someone standing by my side in case I start to roll off the table.

: A woman with a disability should be interviewed before they get unrobed for an exam. Ask specifically if there are any particular issues she has during pelvic exams and listen to her recommendations as how best to overcome those challenges. By listening and not assuming that you know what is best, the examination will proceed much more smoothly. Many women are well informed about their disability and the best way to approach transfer and exams. Scheduling patients with disabilities for an exam room that has an electric exam/procedure table can be a real help. By positioning the table very low (the patient can guide you on the level) many patients can make the transfer themselves or with minimal assistance. If that is not possible, let the patient give you guidance on the best way to accomplish the transfer safely. 

If a pelvic exam isn’t necessary-which may be the case in an asymptomatic patient who doesn’t require a Pap smear-consider doing a physical exam with her in her chair. The one consideration may be to examine for decubitus ulcers in the pelvic region if the patient doesn’t have another provider who is doing so. 

In this exchange, Dr. Phelan first offers a concise explanation of AD, then Ms. Unser discusses how it impacts her. 

: Ob/gyns should be aware that autonomic dysreflexia can occur in patients whose spinal insult is at the T6 level or above. It is due to loss of hypothalamic control over sympathetic spinal reflexes. Autonomic dysreflexia is an uninhibited or exaggerated sympathetic response to a noxious stimuli below the level of the injury, which leads to diffuse vasoconstriction and hypertension. A reflex parasympathetic response produces bradycardia and vasodilation above the level of the lesion. Many things can trigger a dysreflexia event in these patients, including pressure on the pelvic structure, uterine contractions, sexual activity, and infection. Even a transvaginal ultrasound (U/S), pelvic exam or labor can trigger an event. Physical signs include sweating, nausea, nasal congestion, hypertension or hypotension, bradycardia or tachycardia and blurred vision. The severity of the attacks can range from asymptomatic hypertension to hypertensive crisis complicated by bradycardia resulting in cardiac arrest or seizures.

: Autonomic dysreflexia is my body’s way of signaling to me that something is happening and may be wrong below the level of my T4 paralysis. Knowing my triggers and symptoms helps me to understand how to best manage autonomic dysreflexia. The key is knowing my baseline blood pressure. So during my annual exam, I request that my blood pressure be taken before and after the speculum has been inserted. If there is a significant difference in the readings, then I consider my next steps so it doesn’t get worse and require further medical response. During the pelvic exam, I get flushed in the face, start to sweat, and get goose bumps on my arms. Most medical professionals are unfamiliar with autonomic dysreflexia. Any temporary activity that involves the lower half of my body, like the pelvic exam or sexual intercourse, can trigger autonomic dysreflexia symptoms, but for me, they typically subside after about 1 hour. 

: Although I don’t have any motor function in my legs nor do I have “normal” sensation, they do respond involuntarily by spasming every time I move my body or transfer to another surface. Some people with paralysis take medication to subdue their spasms, but other people like me use them and the tightness in the legs to help with transfers by stabilizing them. 

: Inadequate support of legs or marked flexion may elicit a muscle spasm. A quick passive movement of a limb can be a trigger. A spasm may be the result of disruption of descending inhibitory modulation of the alpha motor neurons, producing hyperexcitability that is manifested as increased muscle tone and spasms. Ask a patient what activities provoke her spasms and how best to prevent them or support her when they occur. You may need another person standing at the side of the exam table to prevent the patient from rolling off during spasms. 

: Bladder and bowel dysfunction is a common secondary condition that those of us living with paralysis deal with on a daily basis. I always tell the nurse and doctor that before I get onto the exam table, I will need to catheterize to completely empty my bladder. Despite this, I have had a bladder accident during the pelvic exam.

: Urinary and/or fecal incontinence during the exam is likely in patients who are confined to a wheelchair. Do not be startled if this happens. If a patient can empty her bowels and bladder prior to the exam, that may minimize an event. It is useful to have appropriate drapes placed.

Optimizing the ob/gyn office experience for a woman with spinal cord injury/lesion is a team effort. Each aspect of the patient’s encounter with the health care provider can either welcome and empower her or make her feel unimportant and worthless. The suggestions offered here are designed to help your clinic staff provide reproductive health services to this special population of women who are commonly underserved or even ignored. 

References
	1. Committee on Health Care for the Underserved Woman.  Special Issues in Women’s Health.   December 2017. American College of Obstetricians and Gynecologists. Washington DC

2. Abrams GM and Wakasa M. Chronic Complications of Spinal Cord injury and disease.  Up-To Date. Last revised August 19, 2019.  Accessed on Oct 24, 2019 at 

https://www.uptodate.com/contents/chronic-complications-of-spinal-cord-injury-and-disease?search=autonomic%20dysreflexia&source=search_result&selectedTitle=1~31&usage_type=default&display_rank=1

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These recommendations, based on the observations of a patient, is a Top 8 list of ways to optimize an outpatient visit for reproductive health care for women with spinal cord injury or disease.

Author | Cody Unser

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Eight tips to improve outpatient visits for spinal cord injury patients