What to do when you’re diagnosed with a complex health problem
If you or a loved one has been diagnosed with a complex health problem such as advanced cancer or organ failure that means you’ll need a transplant or a rare condition such as sickle-cell disease or hemophilia the right support can not only have a positive effect on the outcome of your treatment it can also decrease the amount of stress and anxiety you and your family face as you move forward with treatment. There are three types of support that can help you receive the care you need and streamline the process of connecting with physicians who have a higher level of experience treating patients with these complex health problems.
Step 1: Get a second opinion
If you’re diagnosed with a rare or complex health problem, your first instinct may be to start treatment as soon as possible. However, except in emergency situations, there’s usually no need to start treatment as soon as the diagnosis is received. In fact, especially in the case of a complex or rare condition, it’s wise to seek a second opinion from a physician who has a great deal of experience treating patients with your condition.
A second opinion can:
- Confirm the first diagnosis and treatment recommendation, giving you peace of mind
- Change the diagnosis
- Offer different treatment options
- Change which physician treats you
Research from the Mayo Clinic shows how important getting a second opinion can be. A study published in the Journal of Evaluation in Clinical Practice found that as many as 88% of patients in the study who sought a second opinion for a complex health problem at the Mayo Clinic had a new or refined diagnosis that changed their treatment plan, while only 12% of those patients received confirmation that their diagnosis was correct and complete. Another study conducted by the Mayo Clinic found that 10% to 62% of patient-initiated second opinions for any type of health problem resulted in a major change in the diagnosis, treatment, or prognosis.
Data from our own members supports these findings:
- Almost 77% of the second opinions we helped members seek after their diagnosis led to changes in diagnosis, treatment, and/or treating physician.
- 3 % had a change of diagnosis.
- 21% chose to change their treatment plan.
- 41% transferred their care to a provider we recommended.
Step 2: Connect with the right healthcare providers
Getting care from healthcare providers who have experience treating your condition can make a significant difference. Studies have found an association between health outcomes and the level of experience of the healthcare provider. For example, researchers found evidence that suggests that cancer patients who need procedures that are technically difficult to perform and have been associated with higher mortality in healthcare centers that perform few of these procedures should receive the care they need at facilities with extensive experience because many studies have linked successful outcomes with care delivered by providers who perform high volumes of the procedures.
There are several ways to learn if your physician and medical center have the right experience. Your insurance may include nurse case manager services and the nurse may be able to gather this data for you. A health advisor is another option. An advisor can provide objective data on experience, outcomes, success, and complication rates.
Step 3: Get help navigating the healthcare system
Getting from a local health system like your community hospital to a top center of excellence with experience treating patients with your complex condition can be confusing, frustrating, and stressful.
This is another area where a case manager or health advisor can help. Not only can they connect you with the most appropriate, experienced healthcare providers, case managers and health advisors can help you:
- Find providers within your health insurance network
- Gather, review, and consolidate your medical records and deliver them to all treating physicians
- Review all medical bills for accuracy and contest any errors
With these three basic types of support, you’ll be better equipped to face a complex or rare health condition.