UCLA researchers found that nearly all people diagnosed with uveal melanoma had a number of unmet psychological and health information needs, particularly during the first three months after their diagnoses. The study is the first to examine long-term supportive care needs among patients with this disease, and suggested there are more acute needs among people with uveal melanoma than people with other cancers. Social and psychological circumstances that affect these patients, such as personality factors, the social support they receive and the size of their social network, contributed more to a greater need for supportive care than demographic or medical backgrounds.
Uveal melanoma is a cancer of the eye that involves the iris, ciliary body or choroid (collectively known as the “uvea”). Uveal melanoma affects about 2,500 adults in the United States each year, making it the most common eye cancer among adults. Its cause is unknown, although some studies have associated it with lighter eye color. Like others with cancer, people diagnosed with uveal melanoma have often expressed various needs, such as wanting to learn more about their diagnosis and how to cope with uncertainty about their disease.
The research team surveyed people who were newly diagnosed with the disease for three months, determining the most frequently reported needs at and after diagnosis, as well as how great were those needs. Unmet needs among people with newly diagnosed uveal melanoma were higher than those reported by patients with other cancers.
The researchers recruited patients who were scheduled to receive a diagnosis for unspecific intraocular disorders at UCLA Stein Eye Institute. Ultimately, 107 people diagnosed with uveal melanoma participated in the study. At one week and three months after diagnosis, patients completed surveys about their unmet needs. The researchers used a number of statistical applications to determine patients’ unmet supportive care needs.
The study indicated that patients with uveal melanoma need to have specific psychological and informational issues addressed, particularly at the point of and shortly after diagnosis. The high level of needs — more than patients diagnosed with prostate and breast cancer — suggests that health care providers need to proactively screen for these concerns among newly diagnosed uveal melanoma patients. Better support before diagnosis was found to result in fewer reports of unmet needs. In addition, having a smaller social network was found to be beneficial for the patients. The researchers said this could be because larger networks sometimes offer conflicting or overwhelming advice, whereas smaller networks may provide well-coordinated or higher-quality support during a stressful life event.
UCLA’s Dr. Annette Stanton is senior author, professor of psychology and member of the UCLA Jonsson Comprehensive Cancer Center. The first author is Timothy Williamson at UCLA. Other authors are Alexandra Jorge-Miller, Dr. Tara McCannel and Dr. Tammy Beran, all at UCLA.
The research is published online in JAMA Ophthalmology.
The research was supported by the National Institute of Mental Health, Jonsson Comprehensive Cancer Center Foundation, George E. and Ruth Moss Trust, and Research to Prevent Blindness.