135 Background: As the use of cancer immunotherapy increases, unique challenges emerge for both patients undergoing immunotherapy and the clinical staff who care for them. To better understand these challenges, the Cancer Support Community (CSC) conducted surveys of patients, caregivers, and healthcare staff (e.g. oncologists, nurses, social workers) at nine oncology centers across the country. Methods: Needs assessments were conducted through paper and online surveys between August and September, 2017. The analysis is based upon a cross-sectional survey of adult (18 years old and older) cancer patients, caregivers, and healthcare providers. 93 healthcare providers, 65 patients, and 21 caregivers completed the survey. Descriptive statistics and statistical analyses were performed using SPSS Version 24; analyses of association used a significance level of .05. Results: Findings from this analysis yielded important provider perspectives and illustrated targeted areas of patient and caregiver concern. Of note, while only about one-third of patients and caregivers (31% and 38%, respectively) indicated that it was important to understand the science of immunotherapy, nearly half of healthcare providers (46%) reported that educational resources should go “quite a bit” in-depth into immunotherapy science. Also, although caregivers reported greater difficulty finding information about immunotherapy, the majority of both patients (55%) and caregivers (85%) identified managing treatment-related side effects as their foremost education need. Conclusions: CSC’s analysis revealed valuable insights in both clinical care and patient education. Needs assessment results will inform the development and implementation of Immunotherapy & Me, a CSC pilot program to determine whether layering in patient education and care-management tools leads to improved patient and clinical outcomes. CSC’s needs assessments conclude that for both patients and providers, treatment-related side effects are top-of-mind. This underscores the importance of developing turnkey resources to help patients and healthcare providers manage immunotherapy-related side effects – an express goal of the Immunotherapy & Me pilot.
104 Background: Immunotherapy is a relatively new method of cancer treatment which has seen little research into its psychosocial side effects. A clearer understanding of the source of anxiety for those undergoing immunotherapy is crucial as anxiety during cancer treatment can result in decreased treatment adherence, increased mortality rates, and other negative outcomes. This study surveyed 112 cancer patients undergoing immunotherapy to understand their top treatment-related concerns. Methods: RNs in twelve clinics across the U.S. recruited participants into Immunotherapy & Me, a study run by the Cancer Support Community (CSC). Participants were given access to a selection of CSC’s world-class support resources designed to help them and their loved ones manage their treatment. While accessing these resources, participants were encouraged to complete a monthly survey online either at their clinic or at home for seven months. This survey included CancerSupportSource – CSC’s scientifically-validated distress screening tool – as well as some additional questions specifically tailored to immunotherapy patients. Results: The most frequent source of concern related to diagnosis and treatment was “feeling too tired to do things you want to need or do” ( M = 1.21, SD = 1.01), closely followed by “exercising and being physically active” ( M = 1.05, SD = .93). Other concerns included the future ( M = 1.03, SD = .99) and financial ( M = 1.02, SD = 1.16). There were significant differences between age groups in concerns about disruption to life F(4, 97) = 3.52, p < .01; pain F(4,97) = p < .05; finances F(4,97) = 2.86, p < .05; and fatigue F(4, 96) = 2.47, p< .05. Older participants were significantly less concerned about disruption to life as compared to younger participants while younger participants were more concerned about pain than older participants. Conclusions: Cancer patients undergoing immunotherapy do not have a single, outstanding concern. Instead, these patients have several concerns, the level of which varies significantly between age groups and gender. This suggests the need for a subsequent study that explores a more refined list of categories and probes which specific aspects of diagnosis and treatment generate these concerns. Clinical trial information: NCT03347058.
91 Background: Immunotherapy & Me ( IO & Me) is an innovative program of supportive resources developed by Cancer Support Community to investigate and support the unique needs of immunotherapy patients. Here, we describe psychosocial distress and confidence accessing resources among a sample of program participants. Methods: IO & Me is recruiting at 4 community clinics and 1 academic center. Eligible patients must be on an anti-cancer immunotherapy. At enrollment, participants consent, provide demographic/clinical history, and report level of confidence accessing cancer treatment information and resources related to treatment decision making (TDM) and managing symptoms/side effects (SEs). Distress is reported with CancerSupportSource (CSS), a tool where patients rate level of concern on 15 items. Once enrolled, participants can access educational resources (print materials, SE tracker, eLearning courses) and a toll-free helpline staffed by licensed mental health professionals (Cancer Support Helpline). Follow-up surveys are available every 30 days for 6 months. We present data from 68 participants at enrollment and 22 at first follow-up. Results: Participants were 87% White; 69% male; mean age = 65 years (SD = 13). 43% had lung cancer; 22% melanoma; 9% kidney cancer. At baseline, the frequency who felt very or extremely confident accessing resources related to: TDM = 68%; managing SEs = 60%; treatment information = 75%. For distress, top concerns were: fatigue (35% of participants); health insurance/money worries (34%); exercise/physical activity (32%). After 30 days, the frequency who felt confident accessing resources for: TDM = 100%; managing SEs = 91%; treatment information = 100%. Top concerns were: changes/disruptions in work, school, or home life (14%); feeling irritable (9%); sleep problems (9%). Conclusions: Preliminary results show greater variability in distress and confidence accessing resources at baseline than 1-month into the program, at which time few endorse cancer-related concerns and most feel confident accessing resources. These findings highlight the utility of providing patients with educational/support resources and the value of customizable programs like IO & Me. Clinical trial information: NCT03347058.
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