Linda A. Jacobs

E21604 Background: Screening cancer patients for psychosocial difficulties is recommended as a means of identifying individuals in need of assistance and improving outcomes. Although screening may identify individuals at risk for difficulties, it is unclear if screening a) identifies those willing to accept assistance or b) may have the consequence of rationing care away from those who want assistance but screen negatively. We examined these issues in a sample of breast cancer (BC) survivors. Methods: Consecutive non-metastatic BC survivors > 1 year from end of treatment completed an online assessment including the Hospital Anxiety and Depression Scale and patients' desire for assistance with Anxiety and Depression prior to their survivorship visit. Results: Participants (N = 260) were predominately white (81.5%), college educated (81.2%), married/partnered (74.6%), and had an annual income of $60,000 or greater (69.3%). Most were diagnosed Stage I (48.3%) or Stage II (33.5%) BC, and underwent surgery (100%), chemotherapy (60.9%), and/or XRT (70.1%). Mean depression (M = 3.89; SD = 3.73) and anxiety (M = 6,63; SD = 4,47) scores were low and below the established cut point of 8 (all t > -5.0; all p < .001 ), although 20.7% and 42.3% screened positively for depression or anxiety, respectively. Screening positive for depression or anxiety was significantly associated with a desire for intervention (all X²> 22.0; all p < .001 ). However, only a minority of those screening positive for depression (32.1%) or anxiety (34.5%) desired intervention. The number of individuals screening negative but desiring intervention compared to those screening positive and desiring intervention was 76% for depression and 50% for anxiety. Conclusions: Most BC survivors screening positive for depression or anxiety do not desire intervention, at least within the cancer setting. In absolute numbers those screening negative, desire intervention relative to those screening positive at rates of 50-76%, representing a missed opportunity to improve outcomes. Screening without exploring desire for intervention may over identify individuals who do not desire help while missing a relatively large number of those who possibly may.

56 Background: Unmet needs for intervention are common among cancer survivors, but may go unidentified and unaddressed in routine care, leading to poorer outcomes. PROs are becoming the standard of care at many treatment facilities and have been shown to be feasible and to potentially improve outcomes. However, communication of PROs to providers may be a necessary step in this process. We examined the prevalence and stability of unmet needs over a one-year time period in a sample of TCS to determine whether these resolve over time in routine care. As well, we examined the relationship of unmet needs to symptoms of anxiety and depression. Methods: Ninety-nine consecutive TCS were recruited from an ongoing survivorship clinic. Participants completed assessments of demographics, unmet needs, and anxiety and depression (HADS) prior to their visit and at a one year interval. To ensure routine care, providers were unaware of the results of unmet need screening. Results: Participants were primarily white (94%), early middle aged (M = 40 yrs), married (71%), and college educated (79%). Most participants were diagnosed with Stage I disease (73%) an average of 7 years previously. The number of unmet needs was generally low (M < 0.89) at both time points, but varied from 0-10 (SD = 1.8 over both time points). The number of unmet needs was significantly associated over the one year time period (r = 0.65), and unmet need for specific symptoms at time one was associated with unmet need at time two for fatigue, pain, insomnia, numbness, aching joints, difficulty with concentration, memory, anxiety, decreased sexual interest, and weight gain (all X² > 8.12, all p < 0.05). Only muscle aches, depression, and body image were unstable over the one year period (all p > 0.05). Number of unmet needs was associated with increased symptoms of depression and anxiety at both time points (all r > 0.23 and < 0.50, all p < 05). Conclusions: Although unmet needs were fairly low, most failed to resolve over the one year time period in routine care, and greater unmet need was associated with more symptoms of depression and anxiety at both time points. The use of PROs may improve outcomes, but only if communicated to providers and acted upon in enhanced care.

74 Background: Survivorship self-management, including adherence to survivorship care plans (SCPs), is variable, especially among adolescents and young adults (AYA). Methods:The present study describes the development of a mobile application (app) for AYA survivors (AYA STEPS), which strives to improve survivorship self-management via a combined texting self-management program (THRIVE 2.0) and an electronic survivorship care plan generator (Smart-ALACC [Smart-Adult Living After Childhood Cancer], hosted on Oncolink.org). Results: AYA STEPS was developed by modifying an existing disease management app, LSTCare. The main feature of the app is the delivery of two-way text messages that are tailored to an individual’s SCP. The messages are designed to enhance uptake of the SCP with information, strategies for adherence, motivational messages, and appointment reminders. Patients may also text back with questions. The SCP and its related text information are customized based on input of patient characteristics and treatment history, such as age, time off treatment, and type of treatment (e.g., anthracycline chemotherapy, mediastinal radiation, cranial radiation). The app also houses a copy of the complete SCP document. The SCP is generated, via patient or provider, via an electronic platform that incorporates patient demographic information, cancer diagnosis, and cancer treatments received with checklist of options. Feedback on the app was provided by AYA ages 15 to 21 via a focus group (n = 5) and interviews (n = 5), through which qualitative data were collected. AYA reported high acceptability of a mHealth intervention to improve self-care as cancer survivors, especially the inclusion of tailored content from an individualized SCP as text messages. They also reported the app as feasible to download and maintain on their phones. Conclusions: We are about to begin a RCT that will test adherence to SCP for those who received the app and the SCP versus the SCP alone. We will report details of the app and the launch of the RCT. We expect high acceptability and feasibility with measured benefit to receiving the self-management app.

226 Background: Although some aspects of quality of life are well described among TC survivors, particularly in Europe, unmet need for symptom management, degree of survivorship concern, and their relationship to outcomes such as anxiety and depression have been unexplored among TC survivors in the U.S. Methods: Concurrent TC survivors treated > 1 year prior with no evidence of disease were recruited in a U.S. survivorship clinic. Participants completed a measure of 13 unmet needs and a 17-item scale assessing survivorship concern in follow-up care and screening, symptom management, family and genetic issues, and fear of recurrence (0-3 scale, alpha = 0.92). Anxiety and depression were assessed using the HADS. Results: Participants (N = 199) were primarily white (96%), early middle aged (M = 41 yrs), treated for Stage I (81%) or II TC (11%) with surgery (100%), chemotherapy (39%), and/or XRT (14%) an average of 7 years earlier. 11% reported hormone replacement therapy (HRT), and 16% had experienced a relapse. Participants reported an average 1.1 unmet needs (R = 0-11) with 66% reporting none. Unmet needs most commonly focused on fatigue (16%), sexual interest (12%), weight (12%), and concentration (11%) issues. Survivorship concern was low (M = 1.0) but variable (R = 0-2.9). Depressive (M = 2.1) and anxiety symptoms (M = 4.8) were generally low, though elevated in 4% and 19%, respectively. Age, time from diagnosis, race, curative therapy type, and relapse were unrelated to unmet need, concern, anxiety or depression. Higher staging and those receiving HRT was associated with more unmet need (p < 0.04). Unmet needs were associated with concerns (r = .33), anxiety (r = .24), and depression (r = .50). Concerns were associated with anxiety (r = .36) and depression (r = .32). Conclusions: Psychosocial adaptation appears good among most TC survivors, though a substantial number experience elevated anxiety. Survivorship concerns and unmet needs are associated with poorer adaptation in both depression and anxiety symptoms. Assessing and addressing concerns and unmet needs may improve outcomes among TC survivors.

55 Background: Young adult survivors (YAS) are at risk for side effects of cancer therapy and poor post treatment self-management relative to older adult survivors (AS). Survivorship care plans (SCPs) have proved feasible to provide education on symptom management, but the characteristics of YAS who utilize SCPs and patient-reported outcomes (PROs) of YAS via SCPs remains unstudied. Methods: Patient-reported characteristics and outcomes of YAS, age 18 to 39 years, who used a free online SCP generator (OncoLife), between May 2010 and May 2012 are reported. PROs of YAS were compared to AS, age 40-70 years, via frequencies and chi-squared analyses. PROs were queried upon generation of SCP based on diagnosis and treatments received. Results: YAS (n = 1,445, M_age= 31.5 years) and AS (n = 6301, M_age= 56.3 years) were primarily female (69% vs. 78%), Caucasian (76% vs. 86%) and an average of 2.6 years (range 0-20years) vs. 3.2 years (range 0-46 years) since diagnosis and treatment. Most common diagnoses were breast cancer, testicular cancer, lymphoma, thyroid cancer, and sarcomas in YAS vs. breast, colon, lymphoma, prostate, and lung cancer in AS. Three-quarters (75%) of YAS and 70% of AS generated the SCP themselves with the remaining SCPs generated by health care providers. Less than a quarter (22%) of YAS or AS (18%) reported previously receiving a treatment summary. The most commonly endorsed PROs in YAS and AS were neurocognitive changes and fatigue. Fewer YAS than AS endorsed pulmonary concerns and male sexual side effects. The majority of PROs were reported at similar proportions by YAS and AS (see table). Conclusions: In patients who generated an OncoLife SCP, YAS reported similar rates of treatment-related side effects to those reported by AS demonstrating SCPs as a mechanism to capture and address off-therapy issues for all survivors. [Table: see text]

244 Background: Although unmet needs are associated with general distress in long term BC survivors, it is unclear is different needs are associated with specific outcomes such as anxiety and depression among recent BC survivors. Such work may provide insight into the interventions needed to improve outcomes early in survivorship for patients. Methods: Eligibility included non-metastatic BC treated < 1 year prior. Prior to an initial survivorship visit, participants completed a PRO symptom measure and reported unmet need for assistance for symptoms experienced. Overall unmet need and unmet need domains (physical, psychosocial, sexual, hormonal) were examined. Anxiety and depressive symptoms were assessed using the HADS. Results: Participants (N = 137) were primarily white (72%), middle-aged (M = 55 yr), and treated for Stage I (47%) or II (38%) BC. Anxiety (M = 5.57, SD = 4.08) and depression (M = 3.21, SD = 3.33) were in the normal range, on average. 29% and 13% met “caseness” (i.e., above criteria for significant elevation) for anxiety and depression, respectively. Caseness for anxiety and depression were not significantly related to demographic variables, time from end of treatment, disease characteristics or treatment exposures (all p > 0.05). Meeting criteria for depression was associated with greater overall unmet need (M = 6.11 vs. M = 2.11, p < 0.001) and need in the physical (M = 2.66 vs. M = 0.83; p < 0.001) and psychosocial (M = 2.56 vs. M = 0.49; p < 0.001) domains, but unrelated to unmet sexual or hormonal needs (all p > 0.05). Meeting criteria for anxiety was associated with greater unmet need in the hormonal (M = .47 vs. M = 0.17; p < 0.05) and psychosocial (M = 1.33 vs. M = 0.55; p < 0.002) domains, but unrelated to unmet overall, physical or sexual needs (all p > 0.05). Conclusions: Unmet needs relate differentially to anxiety and depression in recent BC survivors. In particular, depression is associated with more than 3 times the number of unmet physical needs, while anxiety is associated with more than 2.5 times the number of unmet hormonal needs. Assessing psychosocial outcomes in the absence of unmet needs may represent a missed opportunity for intervention to improve outcomes for specific groups of survivors.

212 Background: BC survivors have physical and psychosocial symptoms which, if unaddressed, result in unmet need. Unmet need has been examined primarily in long term survivors, and understanding the characteristics associated with unmet need is under-studied among recent patients. Methods: Eligibility included non-metastatic BC treated < 1 year prior. Participants completed a PRO symptom measure and reported unmet need for assistance for symptoms. Concerns about recurrence risk, late effects, health maintenance, family needs, and hereditary risks were assessed. Anxiety and depressive symptoms were assessed using the HADS; quality of life (QoL),using the SF-12. Results: Participants (N = 137) were primarily white (72%), middle-aged (M = 55 yrs), and treated for Stage I (47%) or II (38%) BC. Participants reported an average of 10.7 symptoms (R = 0-18), while unmet need was less common (M = 2.6, R = 0-15). Physical and mental health QoL were similar to norm values (M = 48.0; M = 53.5). 13% and 29% met “caseness” (i.e., criteria for significant elevation) for depression or anxiety on the HADS, respectively. Unmet need was trichotomized into no (0), low (1-3), and elevated (4-15) groups. Level of unmet need was not predicted by demographic variables, time from end of treatment, treatment exposure, staging, or physical QoL. Groups differed significantly with respect to level of patient concern, mental health QoL, anxiety and depression, and meeting caseness for depression on the HADS (all p < 0.03) with elevated needs being associated with worse outcomes. In multivariate analysis, overall unmet need was independently predicted by depression and level of survivorship concerns (R² = .28, p < .001). Conclusions: In the year after treatment, patient reported symptoms are common, but unmet need is less common. QoL is similar to national norms. Higher unmet need is associated with worse psychosocial adaptation, including QoL, patient concerns, anxiety, and depression. In particular, depression and survivorship concerns independently predict unmet need. Addressing unmet needs among recent BC survivors may be one means of improving the psychological functioning of these survivors.

15 Background: YA survivors face challenges unique from those of survivors of childhood cancer or of older adults. The potential impact of cancer or its treatment upon employment and finances for YA survivors is unknown. Methods: Eligibility included diagnosis of malignancy between ages 18-39, 1-5 years from diagnosis and > 1 year from therapy completion. Participants (see Table) were randomly selected from tumor registries of 7 academic institutions; 875 (41% of attempted contacts) enrolled and completed online patient reported outcomes survey related to the effects of cancer/treatment on employment, finances, and cancer-related distress. Results: Overall 84% were employed sometime between cancer diagnosis and study enrollment. Of those, 76% took paid time off (40% < 2 mo, 29% 2-5 mo, 31% > 6 mo). Unpaid time off was required by 39% (37% < 2 mo, 25% 2-5 mo, 38% > 6 mo). Other impairments included inability to carry out physical (59%) or mental (55%) tasks required for their job, being less productive (67%), and not pursuing an advancement/promotion (21%). Financial impacts were substantial: 61% worried about medical bills, 31% went into debt related to their cancer/treatment. Of those incurring debt, most (53%) reported this amount to be < $10,000, 29% $10,000-$24,999, and 18% > $25,000; 13 (4.8%) filed for bankruptcy. Chi squares comparing those receiving extensive treatment vs. surgery only indicated greater likelihood of financial debt (10.6, P=.001) and residual distress (13.9, P < .001) if treated with more than surgery. Conclusions: Most YA survivors experience a significant negative impact on employment and finances related to their cancer and treatment, which occurs at a critical time in their careers and at a life phase inherently more financially unstable. Longitudinal follow-up is required to better quantify the long-term burden on work and finances from cancer diagnosed in young adulthood. [Table: see text]

Helping cancer survivors to transition from active treatment to long-term survivorship requires coordinated efforts by both oncologists and primary care physicians (PCPs). This study aims to evaluate cancer survivors’ perspectives on PCP-delivered survivorship care. We conducted an Internet-based cross-sectional survey of cancer survivors via www.OncoLink.org . Regression analyses were used to identify factors associated with perception of PCP-delivered survivorship care. The 352 respondents rated overall PCP-delivered survivorship care as 60 out of 100 (SD = 23). The areas of care most strongly endorsed were general care (62 %), psychosocial support (65 %), and holistic care (68 %). Survivors were less likely to perceive their PCPs as knowledgeable about cancer follow-up (43 %), late or long-term effects of cancer therapy (45 %), and diagnosis and treatment of symptoms related to cancer or cancer therapy (42 %). While 72 % of survivors reported satisfaction with their PCP’s care overall, only 41 % felt that their PCPs and oncologists communicated well with one another. In a multivariate regression analysis, higher trust in PCP (p < 0.001), non-white race (p = 0.001), living in the United States (p = 0.007), and visiting a PCP two or more times per year (p = 0.009) were significantly associated with higher ratings of PCP-delivered survivorship care. While cancer survivors in general are satisfied with care delivery by PCPs, they perceived that their PCPs have limited abilities in performing cancer-specific follow-up and late effect monitoring and treatment. Better education of family physicians about survivorship issues and improved communication between PCPs and oncologists are needed to improve PCPs’ delivery of survivorship care.