Cervical Cancer Screening Practice Considerations for Patients with Disabilities

Image of the Cervical Cancer Screening practice considerations cover.

Scope and Applicability

These practice considerations apply to patients with disabilities who meet standard U.S. Preventive Services Task Force (USPSTF) cervical cancer screening criteria (i.e., asymptomatic people ages 21 to 65 with a cervix). Clinical eligibility should be determined using standard USPSTF criteria regardless of disability status.

People with disabilities are significantly less likely to be up to date on their cervical cancer screenings (77.9%) compared to those without disabilities (84.2%). Further, people with more severe physical disabilities are even less likely to be up to date with cervical cancer screenings. Common barriers include environmental barriers, provider attitudes, and provider training. These barriers can lead to delayed screening, later-stage diagnosis, and worse outcomes.

This guidance addresses disability-related risk factors, barriers to screening, and accommodation needs for patients with physical or mobility disabilities, sensory disabilities (i.e., vision, hearing, and deafblind), and intellectual or developmental disabilities (IDD).

Patient Assessment

Assumptions about patients with disabilities can create significant barriers to care; assumptions such as patients with disabilities are not sexually active, the screening is not possible due to their anatomy, they are unable to undergo the procedure, or that they lack decision-making capacity, are often wrong and can lead to inadequate care, missed screening opportunities, and health disparities. Instead:

Assess each patient individually rather than making broad assumptions based on disability type,
Ask about sexual activity in a nonjudgmental, routine manner as part of a comprehensive health assessment,
Assume screening is possible until proven otherwise through careful assessment,
Inquire about previous screening experiences and any concerns or accommodations needed, and
Respect the patient’s autonomy in medical decision making and evaluate capacity for informed consent based on their demonstrated understanding, not disability status.

Accommodation Planning

Accommodation Planning for Office Staff During scheduling and intake, office staff should proactively inquire about accommodation needs and document them clearly for the clinical team. Staff should be prepared to discuss different screening options available and schedule additional time when accommodations are needed. Ask patients:

"What supports would make your cervical cancer screening accessible to you?"
"Have you had a cervical cancer screening before? What accommodations worked well?"
"Do you have any physical or mobility disabilities that might affect positioning for the exam?"
"How do you prefer to communicate?"

Pre-visit Planning

In preparation of the patient’s visit, practitioners should do the following:

Review the patient's medical record for documented disabilities and accommodations.
Have basic awareness of the patient’s disabilities.
Contact the patient before the appointment to discuss needed accommodations to safely and effectively complete the screening.
Ensure accessible equipment availability.

Implementing Accommodations During the Visit, Practitioners Should:

Summarize what they learned from their patient’s chart and confirm that they understand their patient’s needs.
Discuss any accommodations that the patient has said worked well in the past and confirm how they can assist them.
Ask patients, “What would make the screening accessible and more comfortable for you?”

Clinical Considerations by Disability Type

Physical/Mobility Disabilities

Clinical Considerations

Patients with physical or mobility disabilities face multiple structural and procedural barriers to cervical cancer screening. Exam tables without height adjustment make it difficult or impossible for patients who use wheelchairs or have limited mobility to transfer safely. The standard lithotomy position can be difficult, and some patients may require stabilization or assistance to maintain the position during a pelvic exam. Spasticity, pain, and decreased range of motion may impact their ability to have a standard pelvic exam. Additionally, patients with a spinal cord injury above the T-6 level are at risk of experiencing autonomic dysreflexia during a pelvic exam.

Accommodation Options

Height-adjustable exam tables: Tables should be able to lower to 17–19 inches high for easier transfer, reducing the risk of injury to both patient and staff.
Stools or steps: Can make getting onto the exam table easier.
Transfer aids: Slide boards, walkers, rollators, gait belts, or mechanical lifts, such as Hoyer lifts or Arjo Sara Stedy sit-to-stand lifts, can support patients transferring to the exam table.
Support staff: Available staff trained in safe patient transfer may be necessary. It is a reasonable accommodation under the Americans with Disabilities Act (ADA) for trained staff to assist in patient transfer (U.S. Department of Justice, 2020).
Alternative positioning: Alternative positions to lithotomy may include the knee chest position, diamond position, M position, V position, or using lithotomy stirrups (Ferreyra & Hughes, 1982). Provide options for alternative positioning and let the patient decide what works best for them.
Stabilization aids: Rolled towels, foam wedges, or caregiver/staff assistance can help patients maintain the position during the exam.
Extended time: It may take additional time for undressing, transferring, and positioning.
Speculum choice and comfort measures: Offer smaller speculum sizes and check in with each patient to determine what size is most comfortable. Offer to warm the speculum by running it under warm water, which can also be used in place of water-based lubricant, which can obscure cytology results. Water-based lubricant can be used sparingly, if needed. Offering patient-controlled insertion through verbal or physical cues to slow down or stop may reduce discomfort and increase success.
Managing spasticity: Consider gentle stretching the legs during positioning and application of 2% lidocaine to the perineum (Smeltzer & Sharts-Hopko, 2005). Additional positioning assistance may be required (Milligan et al., 2020).
Monitor for autonomic dysreflexia: Patients with spinal cord injuries and a history of autonomic dysreflexia often know what their triggers for autonomic dysreflexia are, such as tight clothes or a full bladder. Ask them before beginning the procedure and discuss what measures can be used to prevent triggers. During the procedure, monitor blood pressure and coat the speculum in lidocaine, or consider administering nifedipine 30 minutes prior to the procedure (Milligan et al., 2020). Water-based lubricant may be particularly useful for patients with spinal cord injuries and can be used sparingly (as it can potentially obscure the cytology results).
Refer for screening: Some patients with disabilities may need to be referred to a specialist or require sedation for the screening to be successful. For patients with spinal cord injuries, especially those with a history of autonomic dysreflexia, a referral to a practitioner experienced in working with people with disabilities or consultation with a rehabilitation specialist may be necessary (Milligan et al., 2020).
Assisted self-collection or self-collection HPV test: If eligible, offer the patient an opportunity to collect their own HPV sample or provide assisted self-collection.

Clinical Decision Points

If the patient cannot safely transfer to the exam table: Consider using height-adjustable table, stools/steps, and/or transfer aids, including additional trained staff.

If the patient cannot tolerate lithotomy position: Consider offering the patient alternative positions with stabilization aids, as needed.

If the patient tenses up during speculum insertion: Stop, check comfort, and consider smaller speculum or position change.

If the patient asks to stop: Immediately discontinue and discuss alternatives.

If a speculum exam is contraindicated or not possible despite accommodations, consider:

Self-collected or assisted self-collected HPV testing, if eligible.
Referral to a practitioner with experience treating patients with disabilities.
Screening with sedation.

Sensory Disabilities (Vision, Hearing, Deafblind)

Clinical Considerations

Patients with sensory disabilities face communication and information-access barriers that can interfere with cervical cancer screening and potentially lead to inadequate care, missed screenings, or traumatic experiences. These barriers are particularly concerning because effective communication is essential for informed consent, proper positioning, and patient safety.

These barriers can vary by disability type but interconnect with their individual impact on care quality. For patients who are blind or have low vision, they may have difficulty accessing written materials, spatial orientation to exam environment, and procedure positioning. For patients who are deaf or hard of hearing, communication barriers can lead to missed or misunderstood explanations and instructions, resulting in errors in care, inadequate informed consent, or discomfort during screening. The lack of qualified interpreters may lead to overreliance on writing or lipreading, which may be inadequate for some patients, particularly for patients who use American Sign Language (ASL) as a first language.

For patients who are deafblind, the challenges are compounded, as they require specialized tactile or adaptive communication support that practitioners may be unfamiliar with. Staff lacking experience with disability-specific communication needs can create additional barriers, leading to frustration, miscommunication, and potentially unsafe care situations.

Accommodation Options

Auxiliary aids and communication support:

Ask the patient what communication method they prefer, and, if unable to provide that method, work with them to choose an alternative that results in effective communication.
Always speak directly to the patient instead of their support person or interpreter.
Do not begin any explanation or procedure until the auxiliary aid is present.
Allow additional time for communication exchange and processing.

For Patients with Hearing Disabilities

Provide qualified sign language interpreters: In person or through video remote interpreting (VRI) services, real-time computer-aided transcription services (CART), assistive listening devices and systems, and written materials.
Clear visual communication: Maintain eye contact with the patient, not the interpreter. Position interpreters or visual aids where patients can easily see them whenever possible, and practitioners should be advised to refrain from verbal communication until the interpreter is in the line of sight of the patient. Ensure the interpreter has adequate lighting and positioning. Repeat and spell medical or unfamiliar terms.

For Blind or Low-vision Patients

Braille or large print materials: Provide these upon request in a timely manner. A similar statement may also be included in all print materials: “If you need this information in large print, Braille or in audio, please contact xxx-xxx-xxxx” (Isaacson Kailes, 2021).
Comprehensive verbal descriptions: Provide detailed verbal descriptions of the procedure, equipment, room layout, and positioning requirements before and during the examination.
Tactile guidance and orientation: Use appropriate touch (with permission) to guide positioning and provide tactile orientation to equipment and room features.
Audio materials: Offer audio versions of educational materials and instructions.
Describe sensations: Before and during the screening, practitioners should describe sensations patients may experience and provide warning before touching or repositioning to help patients prepare for what they will feel.

For Deafblind Patients

Arrange for specialized deafblind interpreters: Who can provide tactile sign language interpretation.
Tactile communication systems: Use agreed-upon tactile signals for positioning guidance and procedural updates.
Support person integration: Work collaboratively with the patient’s preferred communication method, interpreter, and support person, while ensuring the patient remains the primary decision maker.

Clinical Decision Points

If the patient requests auxiliary aids: Arrange for auxiliary aid and wait to begin the procedure. Do not proceed without effective communication in place.

If the patient’s preferred auxiliary aid is unavailable: Work with the patient to find another method that results in effective communication. Document the alternative method used and if it worked well for the patient for future reference.

If the interpreter cannot be seen by the patient: Reposition the interpreter to ensure a clear line of sight or consider alternative communication methods if repositioning is not possible.

If the patient cannot hear or see breathing cues during speculum insertion: Implement alternative signaling system (visual cues or tactile signals) established before procedure begins.

If the patient who is blind or has low vision is disoriented: Provide verbal orientation to room layout and equipment and offer tactile guidance with permission.

Intellectual/Developmental Disabilities

Clinical Considerations

Patients with IDD face significant barriers to cervical cancer screenings that can lead to missed or delayed screenings or contribute to trauma. These barriers are particularly concerning given that people with IDD have similar screening needs as the general population but face additional risks that make regular screenings even more critical.

These barriers begin with problematic assumptions. Practitioners may incorrectly assume individuals with IDD are not sexually active and, therefore, not at risk for HPV or cervical cancer, leading to failure to screen; however, research shows that people with disabilities, including those with IDD, can and do have sex, with one literature review finding that young people with IDD are as likely to be sexually active as their peers without disabilities. Moreover, practitioners should be aware that there is a high rate of sexual abuse among patients with IDD as women with disabilities are twice as likely to report sexual violence compared to women without disabilities, with women with IDD or multiple disabilities at greatest risk.

Communication presents another significant challenge, as patients may have difficulty understanding medical terms or procedures without adapted communication strategies. Consent capacity adds complexity, particularly when caregivers are involved in decision making, creating confusion about whether patients can provide informed consent or need supported decision making. Finally, the screening process itself can be particularly challenging, as patients with IDD, particularly those with autism, may find the physical sensations of a pelvic exam distressing or intolerable without careful preparation and accommodation.

Accommodation Options

Plain language explanations: Avoid medical jargon and acronyms. Use short sentences under 10 words; say, “I will look at your cervix now,” instead of “I am going to insert the speculum to visualize your cervical os.” Use teach-back techniques to ensure understanding of where the test occurs, how long it takes, what to expect, and the purpose.
Step-by-step narration: Describe each action before and during: “First, I will touch your knee. Now, I am warming the speculum.”
Extended appointment times: Allow extra time for questions and processing; pause frequently to check understanding.
Visual supports and social stories: Photos, diagrams, and videos showing the room, equipment, and step-by-step process can reduce anxiety and support understanding.
Sensory needs: Ask patients whether certain environmental modifications would support their sensory needs. Such modifications could include options for dimmed lighting, calming music, or minimizing other sensory stimuli in the exam room.
Speculum choice and comfort measures: Offer smaller speculum sizes and check in with each patient to determine what size is most comfortable. Offer to warm the speculum by running it under warm water. Offering patient-controlled insertion through verbal or physical cues to slow down or stop may reduce discomfort and increase success.
Preparatory visits: Pre-visit tours or practice sessions may be beneficial for some patients to familiarize themselves with the environment and staff.
Support person present: Allow trusted caregiver or advocate to remain during exam if the patient requests.
Supported decision making: Collaborate with caregivers while ensuring the patient's preferences and autonomy are respected. Use communication aids or support people as needed but obtain consent from the patient directly whenever possible.
Assisted self-collection or self-collection HPV test: If clinically appropriate, offer self-collection HPV testing or assisted self-collection as alternatives to traditional pelvic examinations.
Refer for screening: Some patients with IDD may benefit from referral to specialists experienced in caring for people with disabilities or require sedation for successful screening.
Staff training and awareness: Ensure all staff understand that people with IDD need and benefit from regular screenings and are trained in disability-competent and trauma-informed care approaches.

Clinical Decision Points

If the patient cannot tolerate a standard pelvic exam, consider:

Using a smaller speculum.
Warming the speculum by running it under warm water.
Offering self-collected or assisted self-collected HPV testing, if eligible.
Referral to a specialist or for screening with sedation.

If the patient appears anxious about the procedure: Offer preparatory visit or additional time for explanation and accommodation planning.

If the patient appears confused about the screening: Use plain language explanations with sentences under 10 words, visual aids or social stories, and step-by-step narration. Assess understanding by using a teach-back method to confirm the patient’s understanding.

If the patient demonstrates difficulty understanding procedure despite plain language explanation: Use visual aids and teach-back methods to assess comprehension before proceeding.

If the patient needs more time to process information: Allow for extended appointment time, break information into smaller segments, use multiple communication methods, and confirm understanding at each step.

If there's uncertainty about the patient's decision-making capacity: Assess the patient's ability to understand the procedure and express preferences, implement supported decision-making approaches, involve caregivers as appropriate while prioritizing the patient's expressed wishes.

If the patient’s caregiver appears reluctant about screening due to sexual activity assumptions: Provide education about HPV transmission and cervical cancer risks in people with IDD, discuss that sexual activity status doesn't eliminate screening needs, and address caregiver concerns while emphasizing patient autonomy.

Alternative Screening Options

Self-collected HPV Testing

Self-collection may be appropriate for patients with mobility limitations that affect feasibility of standard pelvic exams, those with a history of trauma or anxiety related to pelvic exams, and individuals with cognitive disabilities who may find self-collection less overwhelming. Consider offering HPV self-collected tests when a standard pelvic exam is not feasible, or if the patient does not want a pelvic exam. The accuracy of self-collected and clinician-collected HPV samples is similar. One randomized control trial found that there was no difference in false-positive rates between the two methods of collection. This evidence supports self-collection as a clinically equivalent alternative that can significantly expand screening access.

When offering self-collection, ensure that instructions are provided in accessible formats. Standard written instructions may not be sufficient for patients with visual impairments, reading difficulties, or cognitive disabilities. Consider providing instructions in multiple formats, including large print, audio recordings, videos, visual guides, or plain language versions. Allow extra time for reviewing instructions and confirm the patient’s understanding before proceeding with collection.

Assisted Self-collection HPV Testing

Consider offering assisted self-collection when a standard pelvic exam is not feasible or the patient does not want a pelvic exam, and they cannot collect the sample independently. Assisted collection can be performed by health care professionals or caregivers depending on the patient’s preferences. This option is particularly valuable for patients with severe physical disabilities, limited hand dexterity, or cognitive disabilities.

Future Considerations for HPV Testing

While the FDA has approved self-collected HPV tests only available for clinical settings, practitioners should be aware of ongoing developments that may further expand screening accessibility for people with disabilities. Research studies are underway to evaluate the safety and efficacy of self-collection at home in the U.S., and this approach is an already established practice in other countries, including Australia, the Netherlands, and parts of Canada. These international programs have demonstrated that self-collection at home can significantly increase screening rates among populations that face barriers to traditional clinical setting care, such as patients with disabilities. Self-collection or caregiver-assisted collection could address multiple barriers for patients with disabilities and, ultimately, increase the screening rate among some populations.

Practitioners should remain informed about this developing option as research evolves, and regulatory approval may expand to include self-collection at home. Practitioners who are familiar with self-collection protocols will be better positioned to quickly implement these options. Further, practitioners who understand the potential benefits of self-collection at home can inform current conversations with patients about future screening options and maintain engagement with cervical cancer prevention, if traditional methods are not feasible. Finally, awareness of international practices and ongoing research can support advocacy efforts for expanded access to self-collection options that may benefit the disability community.

Follow-up and Continuity Considerations

Results Communication

Provide results in accessible formats appropriate to the patient's communication needs. Use plain language summaries for patients with intellectual disabilities, ensure interpreter services for deaf patients, and provide large print or Braille formats for patients with vision disabilities. Explain what results mean for the patient and any recommended follow-up actions.

Documentation of Accommodations

Clearly document all accommodations used and their effectiveness in the patient's medical record. Include specific details about positioning aids, communication methods, and environmental modifications that worked well to facilitate future appointments.

Future Screenings

Explain to patients when they should expect their next screening. Ensure that accommodation information is transferred when referring to specialists or other facilities.

Coordination with Specialists

If referring patients for screening with a specialist or under sedation, or for diagnosis or treatment, clearly communicate accommodation needs and successful strategies to the receiving practitioner’s office to ensure continuity of accessible care.

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