Unmet Needs After Uveal Melanoma Diagnosis Make Patients Yearn to Learn More

Although often unheard of, those with a rare type of melanoma in their eye, called uveal melanoma, may comprise another underserved patient population.

A recent study conducted at UCLA showed that nearly all patients with uveal melanoma reported having unmet psychologic and informational needs, especially in the few months following their diagnosis.

While only about 2,500 people in the United States get diagnosed with uveal melanoma each year, that number is enough to make it the most common eye cancer in American adults. However, that does not mean that the disease is thoroughly understood. Its cause is still unknown, though previous studies have linked it to people with lighter eye colors.

Patients diagnosed with the disease are yearning to learn more, too. Researchers recruited patients who were scheduled to receive a diagnosis for an unspecific intraocular problem at the UCLA Stein Eye Institute. Among this group, 107 patients were diagnosed with uveal melanoma, and filled out a survey about their unmet needs at one week and three months after being diagnosed.

“Uveal melanoma is a rare cancer, and the needs hadn’t been assessed in this large a sample before,” senior study author Annette Stanton, Ph.D., professor of psychology and member of the UCLA Jonsson Comprehensive Cancer Center, said in an interview with CURE. “Many people have never even heard of the disease when they get their diagnosis.”

The reported need to have psychological and informational needs addressed was higher in patients with uveal melanoma compared with previously reported needs from patients with prostate cancer and breast cancer. This points toward the requisite for health care providers to ask their patients about any concerns shortly after being diagnosed.

The most frequently reported unmet need for this group of patients included wanting more information on the disease, as well as addressing psychologic concerns, such as fear of recurrence. Patients with a high level of neuroticism, meaning the general tendency to experience stress, anxiety and/or tension, had more reported unmet needs.

“A very common concern is fears about how you’re going to do, and whether the cancer could come back,” Stanton said. “That’s helpful to talk to your doctor and other members of the health care team about.”

When it comes to social support systems, the study found that people with smaller social networks actually had fewer unmet needs. Not having as many people to give information to might mean more seamless communication.

“Smaller networks may be able to coordinate better to really support the patient,” Stanton said.

And for patients who do have a larger support system, Stanton said that it might be helpful to designate one or two people to be responsible for communicating all necessary information to everyone else.

Whether their social circle was large or small, it was important that patients had someone to rely on, according to the study. People who felt that they had instrumental support — meaning that they had people that could help them for concrete tasks, such as driving them to appointments or going grocery shopping – had lower levels of unmet needs.

That kind of help can be instrumental for patients with uveal melanoma, especially since the disease and treatment can cause some vision loss.

“One of the takeaways is that it’s great to have those people in place who can offer the kind of support you need and can count on,” Stanton said.