WOMEN'S HEALTHCARE

AN OUNCE OF PREVENTION

BY VINCENT SIASOCO, MD, MBA 

The disparity in health risks and outcomes between people with I/DD and those in the general population is accounted for, at least in part, because individuals with I/DD face multiple barriers to receiving quality healthcare within their communities.

HEALTHCARE IN THE NEW NORMAL

As we settle into the new normal, health care facilities need to navigate a means to continue providing necessary clinical services in the safest way possible. State and federal agencies took steps to make it easier for health centers to provide telehealth services, which allows for safer provision of care. Health centers need to change the way they triage and evaluate care for patients to ensure appropriate use of telehealth and in-person visits. Many preventative care services that were put on hold during the height of the pandemic must now be addressed to ensure non-COVID medical issues are addressed. For example, women's healthcare and cancer screening need to be maintained in order to prevent serious disease from developing.

WHAT IS PREVENTATIVE CARE?

Preventive care and counseling help manage health and detect or prevent issues before they become significant. According to the U.S Preventive Services Taskforce, "preventive services, such as screening tests, counseling services, and preventive medicines, are tests or treatments that your doctor or others provide to prevent illnesses before they cause you symptoms or problems." Prevention activities are mainly categorized by the following three definitions:

• Primary Prevention is meant to intervene before health conditions occur. This is done through vaccinations, proper nutrition, exercise, and avoiding risky behaviors and substances known to be associated with a disease or health condition.

• Secondary Prevention include screenings to identify diseases in the earliest stages, before the onset of signs and symptoms, through measures such as mammography and regular blood pressure testing.

• Tertiary Prevention involves managing a disease after its diagnosis to slow or stop disease progression through treatment, rehabilitation, and monitoring for other complications. Primary and Secondary Prevention in Women's Healthcare is crucial. Cancer is the second leading cause of death in the United States, exceeded only by heart disease. One of every four deaths in the United States is due to cancer. The American College of Obstetrics and Gynecology recommends cervical cancer screening start at the age of 21 years. Women of average risk of breast cancer should be offered screening mammography starting at age 40 years.

Although individuals with intellectual and developmental disabilities (I/DD) have similar rates of breast cancer and cervical cancer compared with women in the general population, women with I/DD have higher cancer related mortality and lower screening rates. According to several studies that researched cancer screening rates among women with disabilities, breast cancer screening rates ranged from 67% to 79% among women with disabilities and 70% to 83% among women without disabilities. Cervical cancer screening rates ranged from 77% to 82% for women with disabilities, and 83% to 87% for women without disabilities.1 The type of disability also affected screening rates. For example, breast and cervical cancer screening rates were found to be lower among women with intellectual and developmental disabilities, cognitive disabilities, and multiple disabilities than among women with other disability types. Breast cancer and cervical cancer are both very treatable when detected early. Therefore, increasing screening rates among women with I/DD is extremely important.

BARRIERS AND CHALLENGES

The disparity in health risks and outcomes between people with I/DD and those in the general population is accounted for, at least in part, because individuals with I/DD face multiple barriers to receiving quality healthcare within their communities. Healthy People 2010 and Closing the Gap, both stressed the importance of eliminating health disparities for people with I/DD, especially through enhancing access to primary care and prevention. In order to avoid health risks and maintain a healthy lifestyle, persons with I/DD and those that care for them need to receive information and have access to care that will empower them to better understand and manage their health.

Assumptions/ Education: Because of the lack of understanding, some providers or caregivers may not feel certain screenings are warranted, such a cervical cancer screening, as the risk factors may not apply to those with I/DD. Parents or caregivers unaware of their own needs for preventative care may not then be able to advocate for those they care for.

Communication: Critical preventative information (as simple as healthy nutrition and exercise) is often not provided due to healthcare providers' inability to engage I/DD patients in their own healthcare.2 This inability to successfully engage patients may be due to poor communication between patient and provider. Challenges may occur when a provider is faced with a patient with I/DD who may be non-verbal, dysarthric, or utilize a communication device. Lack of information may be an issue if the accompanying caregiver isn't knowledgeable about the patient or doesn't act as their advocate.

Behavior: Routine medical visits can be particularly stressful for patients with I/DD and especially for those who have co-occurring mental health conditions. As a result, patients who are unable to communicate their discomfort may present as difficult and uncooperative. For a provider inexperienced in working with this population, this behavior can result in frustration and negatively affect the patient's clinical experience. Due to the lack of communication, the provider may also fail to provide critical information that is necessary to promote healthy behaviors and reduce the patient's risk of chronic medical conditions.

of chronic medical conditions. Physical/Equipment: Despite the enactment of the American with Disabilities Act (ADA), many healthcare facilities still lack the specialized equipment and supplies needed to accommodate a wide range of patient function and ability. This lack of appropriate equipment, such as height adjustable exam tables – and support staff and inadequate training – combine to create significant access problems for people with disabilities. For example, one report revealed women who are unable to stand for 10 minutes or climb 10 stairs are far less likely to have received a Pap smear in the last three years (63.3% compared to 81.4%), and also less likely to have received a mammogram in the last two years (45.3% compared to 63.5%).3 Another report found that a third of all women surveyed reported being denied services at a doctor's office solely based on their disabilities and 56% reported giving birth at a hospital that did not have specialized equipment to accommodate their disabilities.4 All these barriers and others can negatively affect a patient's relationship with a primary care provider. Research has shown that patients who do not have an ongoing relationship with a primary care doctor had more frequently missed appointments, were less likely to receive preventive care, and had worse overall health outcomes.

OVERCOMING BARRIERS

Even prior to the pandemic, preventative care for women with I/DD has always been a concern and a challenge. However, despite the barriers, there are ways to overcome them. For the provider, understanding the patient's needs, disabilities, and support is key. It is important to prepare for the visit ahead of time, taking into consideration mobility issues and/or potential behavioral concerns. This allows providers to ensure that any necessary equipment and support staff are available during the visit. It is also important that provider schedules are flexible enough to allow for longer visits when needed. One of the biggest challenges is managing appropriate follow-up. For example, following up on mammogram referrals is important, especially since these screens can be challenging for some women with I/DD to successfully complete. Educating patients on what to bring to each visit (medication lists/pertinent outside contacts, etc.) and asking about any special needs when calling to confirm appointments can make visits more successful.

SUMMARY

Benjamin Franklin famously stated, "an ounce of prevention is worth a pound of cure" in reference to Boston's fire prevention methods that he observed during in a visit to the city in 1733. This quote is of course applicable in many different situations. Ensuring that women with I/DD are educated about preventative care screening is crucial. Providers, patients, and caregivers all need to work together to ensure we can prevent any future "fires" from occurring with our underserved population.•

ABOUT THE AUTHOR:

Vincent Siasoco, MD, MBA, Family Physician is the Chief Medical Officer at Metro Community Health Centers; Assistant Professor, Department of Family Medicine and Pediatrics at Albert Einstein College of Medicine at Montefiore; Board Member, American Academy of Developmental Medicine and Dentistry; Board Member, Mercy Home, Brooklyn, N.Y.; Chair, Special Olympics New York Health Advisory Council; Co-Chair, Cerebral Palsy Associations of NYS Medical Director's Council.

References

1. cdc.gov/pcd/issues/2017/16_0312.htm
2. U.S. Public Health Service, 2001.
3. Iezzoni, L.I., McCarthy, E.P., Davis, R.B., Siebens, H. Mobility impairments and use of screening and preventative services. Am J Public Health, 2000, Volume 90, 955-961.
4. Nosek, M.A., Howland, C., Rintala, D.H., Young, M.E. & Chanpong, G.F. National study of women with physical disabilities: final report. Sexuality and Disability, 2001, Volume 19, Number 1, 5-39.