For young patients with developmental challenges and other disabilities, care often involves not just the individual patient, but their parent or guardian as well. Knowing your patient's privacy rights — and the role their caregiver can play during an appointment — is key to providing optimal care. OB/GYNs should stay aware of the best practices for guardianship and patient privacy when taking care of patients with developmental challenges.
Determining Guardianship
Certain conditions, such as developmental delays and cognitive disabilities, may affect the way a patient understands their own need for gynecologic healthcare. While individual cases vary in severity, other conditions that can impact how a patient understands their care include cerebral palsy, Down syndrome, fragile X syndrome, fetal alcohol syndrome, spina bifida and brain injuries. However, such challenges should not prevent physicians from providing thorough care, including screening services and evaluation and treatment of gynecological concerns.
The patient-physician relationship can be a bit different for patients with developmental challenges. For many of these patients, providers also need to foster a close and trusting relationship with their parents. If your patient is over age 18, physicians must determine whether they are independent or a parent or guardian oversees their care.
In general, parents can no longer consent to medical treatment on their adult child's behalf without legal authority. Depending on the severity, developmental challenges may cause adult patients to have a legal guardian or conservator. This person, typically a parent or other relative, can exercise certain rights for the patient, including the right to consent to medical treatment.
Patient Privacy for Patients With Disabilities
HIPAA regulations can vary when it comes to the patient privacy of adults with developmental challenges. If the patient does not have a legal guardianship in place and does not consent to disclosure, physicians should keep diagnostic or treatment information private from their parents or guardians. Otherwise, HIPAA allows legal guardians, parents and people with power of attorney for healthcare to obtain a copy of the patient's private medical information. Speak with the patient and their parents or guardians to determine any specific privacy concerns.
Ensuring Optimal Care
Many patients with developmental challenges have normal reproductive anatomy, endocrine function and breast development, but some disabilities or conditions pose key differences. For example, women with spina bifida frequently enter puberty early. Women with intellectual disabilities are also at a higher risk for sexual abuse, according to the Centers for Disease Control and Prevention. OB/GYNs can be an important resource for these patients' sexual health education.
Women with disabilities are overall less likely to be up to date on mammograms and Pap smears, as well as less likely to receive both adequate reproductive counseling and regular cancer screening from providers.
The same screening recommendations that apply to the general public apply to this patient population. Gynecologists can work with patients and their guardians if necessary to make appointments more comfortable by explaining the exam or procedure ahead of time and giving a tour of the office and exam room. Use clear, plain language without condescending to the patient and include their guardian in the conversation if applicable. Allowing the guardian to remain in the room — with the patient's consent — can also ease anxiety.
Women with developmental disabilities require and deserve good gynecologic care. Including their parent or legal guardian in their appointment and aftercare can help improve the experience and ensure seamless care.
