Financial burden of cancer care under the Affordable Care Act: Analysis of MEPS-Experiences with Cancer Survivorship 2011 and 2016 Abstract Purpose To examine whether the implementation of Affordable Care Act (ACA) reduced the financial burden associated with cancer care among non-elderly cancer survivors. Methods Using data from the MEPS-Experiences with Cancer Survivorship Survey, we examined whether there was a difference in financial burden associated with cancer care between 2011 (pre-ACA) and 2016 (post-ACA). Two aspects of financial burden were considered: (1) self-reported financial burden, whether having financial difficulties associated with cancer care and (2) high-burden spending, whether total out-of-pocket (OOP) spending incurred in excess of 10% or 20% of family income. Generalized linear regression models were estimated to adjust the OOP expenditures (reported in 2016 US dollar). Results Our sample included adults aged 18–64 with a confirmed diagnosis of any cancer in 2011 (n = 655) and in 2016 (n = 490). There was no apparent difference in the prevalence of cancer survivors reporting any financial hardship or being with high-burden spending between 2011 and 2016. The mean OOP decreased by $268 (95% CI, − 384 to − 152) after the ACA. However, we found that the mean premium payments increased by $421 (95% CI, 149 to 692) in the same period. Conclusions The ACA was associated with reduced OOP for health services but increased premium contributions, resulting in no significant impact on perceived financial burden among non-elderly cancer survivors. Implications for cancer survivors The financial hardship of cancer survivorship points to the need for the development of provisions that help cancer patients reduce both perceived and materialized burden of cancer care under ongoing health reform.

The use of mobile technology and peer navigation to promote adolescent and young adult (AYA) cancer survivorship care: results of a randomized controlled trial Abstract Purpose Adolescent and young adult (AYA) cancer survivors experience unique barriers that compromise receipt of survivorship care; therefore, development of innovative educational interventions to improve rates of AYA survivorship care is needed. The efficacy of text-messaging and peer navigation interventions was compared to standard-of-care survivorship educational materials to increase AYAs’ (1) late effects knowledge and (2) knowledge, attitudes, and self-efficacy towards seeking survivor-focused care. Methods This was a three-armed, prospective, randomized controlled trial with one control group and two intervention groups. The control group received current standard-of-care educational materials. One intervention group participated in a text-messaging program, and the second participated in a peer navigator program. Participants completed pre- and post-intervention questionnaires. Study outcome variables were quantified using Fisher exact tests, two-sample t tests, exact McNemar tests, conditional logistic regression models, and analysis of covariance. Results Seventy-one survivors completed the study (control n = 24; text-messaging n = 23; peer navigation n = 24). Late effects knowledge was high at baseline for all groups. The text-messaging group had increased survivorship care knowledge compared to the control group (p < 0.05); the peer navigation group had increased survivorship care self-efficacy compared to the control group; p < 0.05. Both intervention groups showed increased attitudes towards seeking survivor-focused care compared to the control group (text-messaging p < 0.05; peer navigation p < 0.05). Conclusions Each intervention demonstrated significant benefits compared to the control group. Implications for Cancer Survivors Given the preliminary effectiveness of both interventions, each can potentially be used in the future by AYA cancer survivors to educate and empower them to obtain needed survivorship care.

The survivorship experience for patients with metastatic melanoma on immune checkpoint and BRAF-MEK inhibitors Abstract Purpose Immune checkpoint inhibitors (ICI) and BRAF and MEK inhibitors (BMi) have improved survival in metastatic melanoma (MM). However, the experience of long-term responders remains undescribed. This study characterised survivorship issues faced by long-term responders to ICI or BMi. Methods Patients with MM, aged ≥ 18 years old, ≥ 6 months post-ICI or BMi initiation with an objective response or stable disease. A 72-question survey assessed physical and psychological effects, impact on lifestyle, access to information, satisfaction with care, and availability of supports. Results One hundred and five of 120 (88%) patients completed the survey (ICI 69/BMI 36). For the ICI cohort, 39 (57%) were receiving ongoing treatment, 17 ceased due to toxicity and 13 due to a sustained response. For the BMi cohort, 31 (85%) were receiving ongoing treatment, 4 ceased due to toxicity and 1 due to a sustained complete response. At data cut-off on 18 December 2018, median PFS (range) was 2.5 years (1.3–8.5) for ICI and 3.1 years (0.6–7.3) for BMi. Long-term toxicities included dry/itchy skin (ICI 51, 74%/ BMi 25, 69%), arthralgias (ICI 30, 58%/ BMi 23, 64%) and fatigue (ICI 62, 90%/ BMi 33, 92%). Psychological morbidity was common, including anxiety awaiting results (ICI 50, 72%/ BMi 29, 81%), fear of melanoma recurring or progressing (ICI 56, 81%/ BMi 31, 86%) or death (ICI 44, 64%/ BMi 26, 72%). Conclusion MM survivors experience chronic treatment toxicities and frequently report psychological concerns. Implications for Cancer Survivors Survivors may benefit from discussions regarding long-term toxicities and tailored psychological supports.

Risk of dementia among postmenopausal breast cancer survivors treated with aromatase inhibitors versus tamoxifen: a cohort study using primary care data from the UK Abstract Purpose Among a cohort of postmenopausal breast cancer survivors, we aimed to compare the risk of dementia associated with aromatase inhibitor (AI) therapy versus tamoxifen. Methods Using UK primary care electronic health records, we identified 14,214 postmenopausal breast cancer survivors (aged ≥ 54 years) with a first AI or tamoxifen prescription between January 2002 and December 2015 and no previous dementia diagnosis. Women were followed-up to identify incident cases of dementia. Cox regression was used to calculate hazard ratios (HRs) with 95% confidence intervals (CIs) to quantify the association between AI exposure (vs. tamoxifen) and dementia, adjusted for confounders. Results A total of 368 incident dementia cases was identified over 57,102 person-years of follow-up. The crude incidence rate of dementia was 7.46 per 1000 person-years (95% CI 6.43–8.65) among women starting endocrine treatment on an AI, and 6.32 per 1000 person-years (95% CI 5.34–7.47) among women starting on tamoxifen. After accounting for age differences and assessing other potential confounders, there was no evidence of a difference in dementia risk between exposure groups (HR for AI vs tamoxifen 1.04, 95% CI 0.83–1.03). There was no evidence of effect modification by age. Conclusion There was no evidence for a difference in dementia risk between AI and tamoxifen users among postmenopausal breast cancer survivors. Implications for Cancer Survivors Our findings suggest that there is no reason for concern about a difference in dementia risk with AI vs. tamoxifen, which is relevant to postmenopausal breast cancer patients recommended these treatments.

Long-term effectiveness and cost-effectiveness of an 18-week supervised exercise program in patients treated with autologous stem cell transplantation: results from the EXIST study Abstract Purpose To evaluate the long-term effectiveness and cost-effectiveness of a supervised 18-week high-intensity exercise program compared with usual care in patients treated with autologous stem cell transplantation. Methods One hundred nine patients were randomly assigned to the exercise intervention (n = 54) or the usual care control group (n = 55). Data on cardiorespiratory fitness (VO2peak), handgrip strength, general fatigue, and health-related quality of life (quality-adjusted life years [QALYs]) were collected at baseline (T0), after completion of the exercise intervention or at a similar time point in the control group (T1) and 12 months later (T2). Cost questionnaires were used to assess societal costs. Long-term effectiveness (at T2) was evaluated using linear mixed model analyses. For the economic evaluation, missing data were imputed using multiple imputation, and data were analyzed using linear mixed models. Results At T2, no statistically significant differences were found between the intervention and control group for VO2peak (0.12; 95%CI − 1.89; 2.14 ml/min/kg), handgrip strength (− 1.08; 95%CI− 2.47; 2.31), and general fatigue (− 0.69; 95%CI − 2.52; 1.14). During 12-months follow-up, no significant between-group differences in QALYs and societal costs were found (QALYs − 0.07; 95%CI − 0.17; 0.04; costs 529; 95%CI − 3205;4452). Intervention costs were €1340 per patient. For all outcomes, the probability of the intervention being cost-effective was low at reasonable values of willingness-to-pay. Conclusion We found no evidence for the exercise intervention being effective on physical fitness and fatigue, nor cost-effective from a societal perspective. Trial registration The study was prospectively registered on 27 May 2010 at the Netherlands Trial Register (NTR2341). Implications for Cancer Survivors The current exercise intervention should not be recommended to patients recently treated with autologous stem cell transplantation.

Beyond efficacy: a qualitative organizational perspective on key implementation science constructs important to physical activity intervention translation to rural community cancer care sites Abstract Purpose To identify constructs relevant to implementation of evidence-based physical activity (PA) behavior change interventions for rural women cancer survivors from an organizational perspective. Methods During the development of a PA intervention implementation toolkit, 11 potential interventionists and 19 community and organizational stakeholders completed focus groups stratified by role. Narratives were audio recorded, transcribed, and coded for Consolidated Framework for Implementation Research (CFIR) constructs. Results Multiple CFIR constructs were identified: Implementation Process (i.e., Engaging, Reflecting and Evaluating), Intervention Characteristics (i.e., Design Quality and Packaging, Cost, Evidence Strength and Quality, Adaptability, Complexity), Inner Setting (i.e., Implementation Readiness, Implementation Climate, Structural Characteristics), Outer Setting (i.e., Patient Needs and Resources, Cosmopolitanism), and Characteristics of Individuals (i.e., Knowledge and Beliefs, Stage of Change). Narratives identified rural implementation barriers (e.g., transportation) and facilitators (e.g., community-oriented). Unique needs of the cancer survivor (e.g., coping during cancer treatment and long-term effects on physical abilities) were emphasized as important barriers potentially addressed through Adaptability and Readiness implementation strategies. Narratives identified multi-level (i.e., individual-, organizational-, and community-level) strategies for targeting the identified constructs. Conclusions Fourteen CFIR constructs emerged as potentially important for organizations to consider when implementing PA interventions. Constructs were integrated into our implementation toolkit and research testing their potential mechanisms of action when implementing PA interventions in rural settings is warranted. Implications Strategies that target the identified constructs may enhance the implementation of PA programs for rural cancer survivors. Cancer survivors can facilitate these efforts by partnering with their health care providers and community organizations. Implications for Cancer Survivors Organizations promoting physical activity programs for cancer survivors must overcome implementation barriers including but not limited to cost, necessary expertise, and lack of awareness. Cancer survivors can facilitate these efforts by partnering with their health care providers, cancer center, and local community organizations to raise awareness and champion these efforts. It will “take a village”, with cancer survivors being their own best advocate, to bring physical activity promotion to a broad range of cancer survivors.

Building a physical activity intervention into clinical care for breast and colorectal cancer survivors in Wisconsin: a randomized controlled pilot trial Abstract Background Cancer survivorship care plans (“care plans”) often recommend an active lifestyle yet are rarely accompanied by programs to help patients enact the prescribed behavior change. As a step towards bridging this gap, this trial tested the feasibility of augmenting care planning with a multi-level physical activity intervention. Methods Breast and colorectal cancer survivors were enrolled alongside a self-selected support partner (e.g., spouse, friend). Survivors received a care plan alone (comparison group) versus one augmented with a 12-week physical activity module (intervention group). For the intervention group dyads, both members received a multi-component program including Fitbit trackers, with the survivor’s Fitbit linked to his/her electronic health record (EHR). Treating clinicians received periodic updates regarding the survivors’ physical activity. The primary outcome was ActiGraph-measured physical activity, analyzed using mixed models. Feedback questionnaires were administered to participants and clinicians at 12 weeks. Results Survivors (n = 50) were 54.4 ± 11.2 years of age and 2.0 ± 1.5 years post-diagnosis. Survivors in the intervention group increased moderate-to-vigorous-intensity physical activity (MVPA) by 69 ± 84 min/week vs. a 20 ± 71 min/week decrease in the comparison group (p = .001). Likewise, daily steps increased by 1470 ± 1881 vs. a 398 ± 1751 decrease (P = .002). Among responding clinicians, 100% looked at survivors’ activity data within the EHR at least once and 80% said it provided insight into their patients’ lifestyles. Conclusions Augmenting a standard care plan with a multi-level, technology-based intervention increased physical activity among cancer survivors. Implications for cancer survivors Technology-based approaches, including activity trackers, can be used by individuals to work towards an active lifestyle after cancer.

Unmet supportive care needs in young adult cancer patients: associations and changes over time. Results from the AYA-Leipzig study Abstract Purpose Coping with cancer at a young adult age (AYA) is a challenge for many patients and raises support needs. We aim to examine unmet supportive care needs and to investigate predictors of and changes in unmet needs over time. Methods We surveyed AYAs (18–39 years at time of diagnosis, diagnosis < 4 years) at two time points (t2 = 12 months after t1) using the Supportive Care Needs Survey (SCNS-SF34) among other validated measures. We conducted multiple hierarchical regressions to identify sociodemographic, medical and psychosocial predictors of unmet needs. Results A total of 514 AYAs (386 women) with a mean age of 29.6 years participated at both times. Psychological needs (Mt1 = 35.7; Mt2 = 32.09; p = 0.001) and informational needs (Mt1 = 32.18; Mt2 = 29.04; p = 0.021) were the most often reported unmet needs at both measurements and decreased slightly at t2. All other SCNS domains, except for patient care, remained stable over time. Higher supportive needs were associated with greater levels of effort to cope with the disease at both times in all domains. Older age and female gender were significantly associated with two and one of six domains, respectively, at t1 and t2. Conclusions AYAs reported primarily unmet psychological and informational needs, which were stable over time and indicated that AYAs do not have sufficient access to the support they need. The degree of effort to cope with cancer plays a key role in terms of unmet support needs. Implications for Cancer Survivors Regular screening for this variable in acute and especially follow-up care settings could pave the way for clinicians to offer more targeted support.

Mobility in survivors with chemotherapy-induced peripheral neuropathy and utility of the 6-min walk test Abstract Background Chemotherapy-induced peripheral neuropathy (CIPN) is a significant and often lasting side effect of cancer treatment, with increasing CIPN severity associated with increasing deficits in balance, gait, and mobility. The 6-min walk test (6MWT) is a widely validated and utilized measure of general physical functioning and mobility, although its utility in a CIPN context is unclear. This study aimed to determine the utility of the 6MWT as an assessment of mobility deficits in a CIPN cohort and utilize the 6MWT to compare mobility data from CIPN patients to those of healthy and clinical populations. Methods Cancer survivors exposed to neurotoxic chemotherapies (N = 100; mean 17 ± 13 months post-treatment; mean age 59 ± 13 years) completed a single cross-sectional assessment of patient-reported and objective CIPN, mobility (6MWT), and disability. Results CIPN symptoms were reported in the majority of the cohort (87%). Increasing age, patient-reported and objective CIPN symptoms, and disability were associated with decreasing 6MWT distance (.48 ≤ R ≤ .63; p < .001) in bivariate models. Multiple regression models of 6MWT distance included age, sex, and patient-reported or objective CIPN severity as significant independent correlates (.62 ≤ R ≤ .64; p < .03). 6MWT distances in patients with CIPN symptom severity above the cohort mean were consistent with mean values reported in diabetic neuropathy and clinical populations. Conclusions Increased CIPN symptoms are associated with increased mobility deficits. The 6MWT demonstrates promising utility as a mobility assessment in a CIPN cohort. Implications for Cancer Survivors The impact of the progression of CIPN on mobility deficits in survivors emphasizes the need for effective interventions to treat and prevent CIPN.

Racial and socioeconomic disparities in adherence to preventive health services for ovarian cancer survivors Abstract Purpose To examine ovarian cancer survivors’ adherence to evidence-based guidelines for preventive health care. Methods A case-control, retrospective study of Medicare fee-for-service beneficiaries diagnosed with stage I, II, or III epithelial ovarian cancer from 2001 to 2010 using the Surveillance, Epidemiology, and End Results-Medicare database. Survivors were matched 1:1 to non-cancer controls from the 5% Medicare Beneficiary file on age, race, state of residence, and follow-up time. Receipt of flu vaccination, mammography, and bone density tests were examined in accordance with national guidelines. Adherence was assessed starting 1 year after cancer diagnosis, across 2 years of claims. Interaction with the health care system, including outpatient and cancer surveillance visits, was tested as a potential mechanism for receipt of services. Results 2437 survivors met the eligibility criteria (mean age, 75; 90% white). Ovarian cancer survivors were more likely to be adherent to flu vaccination (5 percentage points (pp); < 0.001) and mammography guidelines (10 pp.; < 0.001) compared to non-cancer controls, but no differences were found for bone density test guidelines (− 1 pp.; NS). Black women were less likely to be adherent to flu vaccination and bone density tests compared with white women. Women dually eligible for Medicare and Medicaid were less likely to be adherent compared to those without such support. Adherence was not influenced by measures of outpatient visits. Conclusion Ovarian cancer survivors are receiving preventive services with the same or better adherence than their matched counterparts. Minority and dual-eligible survivors received preventive services at a lower rate than white survivors and those with higher income. The number of outpatient visits was not associated with increased preventive health visits. Implications for Cancer Survivors Ovarian cancer survivors are receiving adequate follow-up care to be adherent to preventive health measures. Efforts to improve care coordination post-treatment may help reduce minority and low SES disparities.