Diagnosis Disclosure and Related Illness Experience in Patients With Multiple Myeloma and Precursor Plasma Cell...

Social support is associated with improved prognosis and quality of life after a cancer diagnosis. However, less is known about patients' experiences with disclosing their diagnosis to access support. This study investigated diagnosis disclosure patterns and the illness experiences of patients with multiple myeloma and precursor plasma cell disorders.

A 34-question survey was distributed between April-November 2023 to patients with plasma cell disorders via HealthTree Foundation's Patient Portal. Deidentified survey responses were analyzed using summary statistics, Fisher's exact test for group comparisons, and qualitative coding of open-ended answers.

Among 510 survey respondents, 98% shared their diagnosis. Of these (n = 501), most shared within a day or week (88%), primarily in person (86%), and most frequently with spouses/partners (81%) and friends (81%). Sharers reported improved coping (84%) and stronger relationships (55%), whereas nonsharers (n = 9) reported feeling more isolated (56%). The majority of sharers (87%) did not regret disclosing their diagnosis to anyone. Compared to patients with multiple myeloma (n = 328; 78%), patients with precursor disorders (n = 44; 56%) were less likely to report coping well with their diagnosis (P < .001). Overall, participants advised newly diagnosed patients to consider disclosure timing, prioritize sharing with close contacts, maintain privacy, and educate themselves before sharing.

Patients considered diagnosis disclosure to be beneficial to their coping and relationships, and recommended considering various factors when disclosing, including timing, personal relationships, and privacy. Patients with precursor disorders were less likely to indicate they were coping well, suggesting that this group may benefit from additional support resources.