16 Oct Tips for Healthcare Providers With Patients Who Have Rare Diseases
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In medical school, students learn the significant facts about rare diseases, including their prognosis, treatment options, and predisposing factors. However, it’s entirely different when a doctors diagnoses a patient with a rare disease and have to care for them. Since the providers wants to get all the details and provide the best care possible despite the limited information available, the task can prove challenging. This article shows steps to help ensure that patients get the quality of care they need.
Consider Investigational Therapies
Since there are not many drugs out there proven to be effective for treating rare diseases, investigational therapies might be worth trying for your patient. Such treatments are worth considering when patients are experiencing severe side effects from using the conventional therapies and when the early study results of the investigational drugs are promising.
Before proceeding with it consider what the investigational drug is being studied for, the accessibility to clinical trial sites, and how much is already known about such therapies. For your patient’s safety the potential risks and the scientific evidence available must be examined and existing treatments exhausted.
Determine if the patient will meet the inclusion criteria for participation in the study, such as the type or stage of their disease, age group, medical history, and current health status. As the physician, it is the responsibility to request such drugs. However, expanded access programs for investigational drugs are sometimes hard to navigate. If there is difficulty getting patients into such clinical trials, you might want to consider using an Early Access Care program. Such programs connect patients to needed investigational products and streamline the request processes.
Keep an Open Mind Before and After Diagnosis
As a physician diagnosing and treating a rare medical condition, it is crucial to keep an open mind. The complexities of rare medical conditions can delay diagnosis and early intervention. So, while focusing on increasing the patient’s quality of life and extending their life expectancy, the provider needs to be prepared for the unexpected and consider all the possibilities.
Physicians are often faced with the temptation of hastily making the most likely diagnosis based on presenting symptoms due to job demand and the limited duration of clinical visits. However, it is crucial to remember that many rare diseases present with symptoms similar to those of common illnesses. That is why routinely considering other diagnostic possibilities and discussing clinical cases with other healthcare providers. This is especially important when with patients who are not improving with routine treatments.
Provide Patient-Centered Care
Patient-centered care means treating the patients under your care with dignity and respecting their decisions. Involve your patients in their healthcare by including them in the decision-making process regarding the kind of care they receive. When providing patient-centered care, emphasize providing a broader life experience. Your focus should not be solely to address a list of symptoms associated with the rare medical condition. Instead, the approach to their healthcare should be to identify and address what matters the most to your patient.
Support and enable the patient to develop their skills, knowledge and confidence. By doing this, the provider recognizes the patients as experts in their own care and help them develop the confidence and understanding of self-management. If the patient is willing to get their family members involved in their care, involve their loved ones in the healthcare decision making.
Get Ready To Make Your Case
As a physician, diagnosing a patient with a rare condition can expose you to frustrating bureaucracy and obstacles when trying to obtain the needed approval for your patient’s needs. The providers and patient must also gather all the lab and physical examination results that will enable the patient to make insurance claims for the cost of pricy diagnostic tests.
If the patient’s presenting symptoms are general and they need to have a confirmatory test, order such a test and document all the unique characteristics of the rare illness you suspect. Although it is time-consuming, putting all the records together early on helps prevent delays for your patient. Do not leave out other details like the patient’s family history even if it doesn’t seem related to the case at first.
Encourage Your Patient To Join Support Groups
Patients often feel overwhelmed, and isolated when they are diagnosed with rare illnesses. Since there are not many people out there diagnosed with conditions like theirs, the patient might feel all alone in this world. Prepare the patient for this by encouraging them to join support groups. Some support groups meet online while others meet in-person. Such support can be of tremendous value to the patient and help improve their overall health.
Improve Health Outcomes through Patient Education
Living with an uncommon illness can be scary, confusing, and costly. Health professionals might have information about community support resources, educational materials, and financial support that the patient may need. Ensure that the patients know about such programs and have access to any other resources they need to overcome barriers to their care.
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Last Updated on October 16, 2024 by Marie Benz MD FAAD