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By Crystal Lindell

When Black patients with carpal tunnel syndrome are deciding whether to have surgery, they aren’t just considering their doctor’s recommendations. 

They are also thinking about a range of social, cultural and financial issues, such as how much work they’ll miss, whether insurance will pay for surgery, and what their loved ones think. That’s according to a new study published in JAMA. 

Researchers were inspired to look into the matter because Black patients in the U.S. are significantly less likely than White patients to have surgery for carpal tunnel syndrome, even when their symptoms are similar or more severe.

Carpal tunnel syndrome (CTS) is a common condition caused by compression of a nerve that passes through the wrist. Symptoms include numbness, tingling, weakness, and pain in the thumb and fingers.

The research team recruited 28 Black patients with CTS and asked them in individual interviews what their decision-making process was like. All had reached a point where their pain and loss of hand function prompted them to consider surgery. 

Although the study focused on Blacks, the same basic questions are faced by all patients: Will the surgery help and can I afford it? But due to treatment disparities and racial bias in the healthcare system, Black patients are more likely to be cautious about trusting doctors. 

“Participants emphasized the importance of being heard, respected, and actively involved in decisions; they carried prior experiences forward, shaping how they approached future interactions, including their willingness to trust clinicians, ask questions, or pursue recommended treatments,” wrote lead author Rachel Hooper, MD, a plastic surgeon and Assistant Professor of Surgery at University of Michigan Medical School. 

The patients who were interviewed welcomed collaborative and transparent approaches to their treatment, and wanted to have space to make informed, independent decisions about their surgery. As one participant said: 

“I just like my doctor to have an open communication, not tell me … ‘You need to do this. You need to do that’ but, ‘What can we do to get this working for you?’”

Researchers found that patients’ social influences were an important part of the decision-making process. Some participants prioritized advice from friends, family, or coworkers over a doctor’s recommendation. They valued the experiences of other people in their lives:

“People from work… that was the other thing that discouraged me… surgery wasn’t a help to them.”

Patients also said financial concerns and a lack of paid leave led to delays in moving forward: 

“I kind of did prolong it… I didn’t want to stop at work…never wanted to take the time off.”

The authors suggested a number of ways to address these issues. They said surgeons should develop more educational material to clarify the impact that delaying surgery could have on hand function and long-term recovery.

They also recommended training in humility and how to collaborate more with patients. For example, surgeons could ask patients, “What matters most to you about hand use?”

They said surgical practices should be more involved in discussing financial issues, such as co-pays, time off, and insurance coverage. It would also be helpful to have patient advocates and social workers available to assist with insurance coverage, charity care applications, and to offer flexible scheduling to help hourly or shift workers.

Long-term, the researchers recommended more recruitment, hiring and mentorship of minorities in surgical teams.

It’s great to see a medical study published in JAMA that focuses entirely on the patient perspective, going so far as to do one-on-one interviews with patients.

Frankly, it’s long past time to acknowledge the full scope of patient decision making when it comes to things like surgery. In my experience, doctors are often shocked to discover that a patient might want to consider things like cost, time-off work, or post-op support.

Research like this is vital to help the medical community better understand patient perspectives. Ideally, it will help doctors better respond to the very real – and very valid – concerns that all patients have.