Patient comfort, knowledge drive philosophy in early diagnosis of neuro conditions

Key takeaways:

• Gauging patient education, emotional state and family wishes may ease the shock of an early neurologic diagnosis.
• The best path on continuum of care results when treatment plans are tailored to the individual.

PHILADELPHIA — Consideration of multiple factors among patients, families and health care providers drive the process of diagnosing preclinical or prodromal neurologic disease, which should be tailored to the individual, a speaker said.

“I spend a lot of time in Alzheimer’s disease because we know it’s something that affects family systems and not just the individual,” Emily A. Largent, JD, PhD, RN, Emanuel and Robert Hart Assistant Professor of Medical Ethics at the University of Pennsylvania Perelman School of Medicine, said during her presentation at the American Neurological Association annual meeting. “And we ask about the broader social implications of diagnosing patients earlier.”

According to Largent, early diagnosis of movement and memory disorders affects patients and their families from the moment the diagnosis is made, subsequently altering their choices, their mindset and their relationships with each other as well as members of the health care community.

Reasons for this sudden shift, she noted, often take root in the relationship between diagnosis and results of clinical trials, which have historically skewed toward non-Hispanic white, educated individuals with higher socioeconomic status; gauging pre-test education is paramount, as individuals from underserved populations may have an inherent bias toward learning that biomarker results are safe and can be easily understood. Providing an environment where a patient retains a sense of self, feels less of a sense of stigmatization, a sense of comfort when results don’t arrive within an expected time frame and to provide a framework of medical actionability are essential to the process, Largent added.

The nature of disclosing a diagnosis and maintaining a patient’s sense of security is also crucial, according to Largent, where discussions about adopting healthier behaviors in both the short and long term may lead to better self-education about their condition. In addition, helping a patient take control of how and to whom they choose to disclose their illness may lead to improved emotional responses and a more positive outlook on future plans.

When choosing a path to revealing a diagnosis, Largent continued, clinicians may need to take inventory of such considerations as promoting health equity, controlling costs, preparing the necessary personnel to assist a patient in their post-diagnosis journey, assisting in end-of-life planning and supporting those along a trajectory where functionality is reduced.

“Once somebody gets their result, the nature and extent of follow up will really depend on the result,” Largent said. “Perhaps (the patient) will need some research into how they would proceed to receive some sort of care. Perhaps additional testing is needed to help them understand what’s happening, and follow-ups should be tailored to the individual.”