Objectives: Cancer patients and caregivers often have significant psychosocial and informational needs. Many healthcare providers and navigators make referrals to educational and support resources, but how well are the concerns of those affected actually being met? The Cancer Support Community (CSC) and its partners asked that question to those affected by melanoma to better understand this population’s unique needs, to inform a survivorship program for those at high risk for melanoma recurrence, and to inform CSC’s Frankly Speaking About Melanoma educational program.
Methods: In the spring of 2016, CSC along with a team of experts developed a survey of those affected by melanoma; 140 individuals diagnosed with melanoma and 64 melanoma caregivers participated in a national online survey reporting melanoma-related beliefs, information-seeking, provision of information, informational preferences, behaviors, and other melanoma-related experiences.
Results: Patients were Caucasian (95%), female (87.9%), and averaged 49.2 years of age (SD = 10.5). Nearly half (48.1%) were diagnosed with metastatic melanoma; 47.6% had recurrent melanoma. Respondents reported distress, with most experiencing anxiety (60%) or depression (53.6%). Whereas most (69%) received information about treatment choices, only 39.5% received resources for social and emotional support. Half (52.7%) were asked by their healthcare team about cancer-related distress; 42.0% were provided with referrals from their healthcare team to help manage distress. Only 8.9% received a survivorship care plan. Most wished they had received more help understanding recurrence risk (70%), managing fear of recurrence (68%), and cancer-related emotions (64.3%).
Caregivers were Caucasian (90.4%), female (90.1%), and averaged 47.1 years of age (SD = 14.8). Caregivers sought information about melanoma from patients’ doctors (43.8%), nurses (26.6%), the Internet (54.7%), patient support organizations (25.0%), and hospital resource rooms (21.9%). Many (53.8%) reported they would benefit from getting support for themselves, managing stress (46.2%), or taking better care of themselves (44.2%). Only 12.2% received referrals to help manage distress.
Conclusions: Results explore the depth and breadth of information and support needs of those affected by melanoma. Results suggest that while many diagnostic and treatment-related informational needs are met, psychosocial needs are not as well met, leaving both patients and caregivers desiring more. Findings highlight what it would mean to provide comprehensive and relevant information and support resources for this population, particularly resources for understanding risk and managing fear of recurrence and distress-related referrals.
Disclosures: This research was made possible by unrestricted educational grants from Bristol-Myers Squibb and Merck.