The Patient's Experience of Ocular Melanoma in the US: A Survey of the Ocular Melanoma Foundation

Abstract

Background: Ocular melanomas threaten patients with early death, visual handicap, and loss of the eye. The aims of this study were to identify aspects of care that patients with ocular melanoma considered most important and to determine whether patients felt their needs had been adequately addressed. Methods: A cross-sectional study including US ocular melanoma patients and their caregivers. An online survey of US ocular melanoma patients was designed and conducted by the Ocular Melanoma Foundation. Results: The cohort included 180 patients with uveal melanoma and 4 with conjunctival melanoma. Median follow-up was 3 years. A third of patients reported that their uveal melanoma had initially been diagnosed as a nevus. Most uveal melanomas were treated with brachytherapy. Almost 50% of patients had no genetic tumor analysis. Screening methods reported most commonly were computed tomography and liver function tests. Metastatic disease developed in 11% of patients. Few patients (13.3%) reported an offer of psychological support. Most dissatisfaction was with lack of advice on financial aspects of care and lack of psychological counseling, with women tending to express more dissatisfaction with care. Many patients complained about the way ophthalmologists delivered bad news to them. Conclusions: This patients' perspective highlights directions for research, education, and other measures to improve the care of patients with ocular melanoma in the US and elsewhere.

The national comprehensive cancer network distress thermometer as a screening tool for the evaluation of quality of life in uveal melanoma patients

“…Over 68% of patients reported physical issues upon request with female patients accounting for significantly higher rates of physical issues (p = 0.034). This is in accordance with a recent cross-sectional study that reported women tending to express more dissatisfaction with care (Afshar et al 2018). Moschos et al 2018recently proved that level of depression is correlated with decrease in BCVA in uveal melanoma patients.…”

“…Other than in oncological patients who have to undergo months of difficult treatment cycles, offering psychological assistance to uveal melanoma patients may not be a top priority for the treating doctors. According to the literature, only few uveal melanoma patients (13.3%) reported an offer of psychological support and most dissatisfaction in this US American patient collective was with lack of advice on financial aspects of care and lack of psychological counselling (Afshar et al 2018).…”

<p>Screening for Predictive Parameters Requiring Psycho-Oncological Intervention via the National Comprehensive Cancer Network Distress Thermometer in the Follow-Up of Uveal Melanoma Patients</p>

“…In a recent US American study, only a small percentage of uveal melanoma patients reported an existing offer of psychological support and there was vast dissatisfaction with psychological counseling. 3 The percentage of patients that reported pre-existing psychological support was similar to our study (13.3% versus 10.4% of patients 12 ). Yet, reportedly, only a limited number of patients suffering from distress accepts referrals to or turns to psycho-oncological support services with predictors and barriers to psycho-oncological support service utilization being under-studied.…”

“…International guidelines prioritize introducing routine emotional distress screening in cancer care to accurately identify patients who need psycho-oncological treatment most, and ensure that patients can access appropriate supportive care. 14 As uveal melanoma severely threatens patients with early death, visual handicap, and potential loss of the eye, 1,3 we wanted to distinguish specific patient characteristics that may result in an elevated risk of distress. These relevant patient characteristics having a direct influence on psycho-oncological needs could be of great value for the treating clinician in everyday practice: Early intervention has been proven crucial to improve patients' QoL and decrease psychiatric and psychosocial distress in metaanalyses.…”

“…There is a current trend in the literature that emphasizes the need for psychooncological support focusing on patients' quality of life (QoL) apart from successful medical treatment in uveal melanoma patients. [1][2][3][4] Importantly, the effects of the treatment on the patients' QoL should be taken into consideration. 5 As uveal melanoma is a rare disease with a prevalence of 1-9/ 100.000, 6 data on patients' QoL are limited and to our knowledge, the NCCN distress thermometer has not yet been evaluated for uveal melanoma patients outside of our research.…”