Study shows need for early support among people with uveal melanoma
UCLA RESEARCH ALERT
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 prospective, longitudinal approach to examine supportive care needs among patients with this disease, and suggested more acute needs among people with uveal melanoma than people with other cancers. Social and psychological circumstances, such as personality factors, social support, and social network size, contributed to the severity of these needs more so than demographic backgrounds or medical characteristics.
Uveal melanoma affects about 2,500 adults in the United States each year, making it the most common primary intraocular cancer among adults. Its cause is unknown, although some studies have linked it to lighter eye color. Like other cancer patients, people diagnosed with uveal melanoma have often expressed various needs, including desires to learn more about their diagnosis and how to cope with uncertainty about their disease.
The research team surveyed patients who were newly diagnosed with the disease for three months, determining the most frequently reported needs at and after diagnosis, as well as the severity of those needs. The proportions of unmet needs among people with newly diagnosed uveal melanoma were higher than those reported by patients.
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 and characterize their predictors.
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 healthcare providers need to proactively screen for these concerns among newly diagnosed uveal melanoma patients. Having tangible support prior to diagnosis was related to less severe needs shortly after diagnosis. In addition, having a smaller social network was associated with reduced need severity among patients, which may be related to larger networks offering 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 at UCCLA.
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.