Julia Rabin

Financial Burden in Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

Purpose Survivors of childhood cancer may experience financial burden as a result of health care costs, particularly because these patients often require long-term medical care. We sought to evaluate the prevalence of financial burden and identify associations between a higher percentage of income spent on out-of-pocket medical costs (≥ 10% of annual income) and issues related to financial burden (jeopardizing care or changing lifestyle) among survivors of childhood cancer and a sibling comparison group. Methods Between May 2011 and April 2012, we surveyed an age-stratified, random sample of survivors of childhood cancer and a sibling comparison group who were enrolled in the Childhood Cancer Survivor Study. Participants reported their household income, out-of-pocket medical costs, and issues related to financial burden (questions were adapted from national surveys on financial burden). Logistic regression identified associations between participant characteristics, a higher percentage of income spent on out-of-pocket medical costs, and financial burden, adjusting for potential confounders. Results Among 580 survivors of childhood cancer and 173 siblings, survivors of childhood cancer were more likely to have out-of-pocket medical costs ≥ 10% of annual income (10.0% v 2.9%; P < .001). Characteristics of the survivors of childhood cancer that were associated with a higher percentage of income spent on out-of-pocket costs included hospitalization in the past year (odds ratio [OR], 2.3; 95% CI, 1.1 to 4.9) and household income <

Integrating tobacco treatment into cancer care: Study protocol for a randomized controlled comparative effectiveness trial

50,000 (OR, 5.5; 95% CI, 2.4 to 12.8). Among survivors of childhood cancer, a higher percentage of income spent on out-of-pocket medical costs was significantly associated with problems paying medical bills (OR, 8.9; 95% CI, 4.4 to 18.0); deferring care for a medical problem (OR, 3.0; 95% CI, 1.6 to 5.9); skipping a test, treatment, or follow-up (OR, 2.1; 95% CI, 1.1 to 4.0); and thoughts of filing for bankruptcy (OR, 6.6; 95% CI, 3.0 to 14.3). Conclusion Survivors of childhood cancer are more likely to report spending a higher percentage of their income on out-of-pocket medical costs, which may influence their health-seeking behavior and potentially affect health outcomes. Our findings highlight the need to address financial burden in this population with long-term health care needs.

“Job Lock” Among Long-term Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

BACKGROUND Despite the well-established risks of persistent smoking, 10-30% of cancer patients continue to smoke after diagnosis. Evidence-based tobacco treatment has yet to be integrated into routine oncology care. This paper describes the protocol, manualized treatment, evaluation plan, and overall study design of comparing the effectiveness and cost of two treatments across two major cancer centers. METHODS/DESIGN A two-arm, two-site randomized controlled comparative effectiveness trial is testing the hypothesis that an Intensive Treatment (IT) intervention is more effective than a Standard Treatment (ST) intervention in helping recently diagnosed cancer patients quit smoking. Both interventions include 4 weekly counseling sessions and FDA-approved smoking cessation medication advice. The IT includes an additional 4 biweekly and 3 monthly booster sessions as well as dispensal of the recommended FDA-approved smoking cessation medication at no cost. The trial is enrolling patients with suspected or newly diagnosed cancer who have smoked a cigarette in the past 30days. Participants are randomly assigned to receive the ST or IT condition. Tobacco cessation outcomes are assessed at 3 and 6months. The primary study outcome is 7-day point prevalence biochemically-validated tobacco abstinence. Secondary study outcomes include the incremental cost-effectiveness of the IT vs. ST. DISCUSSION This trial will answer key questions about delivering tobacco treatment interventions to newly diagnosed cancer patients. If found to be efficacious and cost-effective, this treatment will serve as a model to be integrated into oncology care settings nation-wide, as we strive to improve treatment outcomes and quality of life for cancer patients.

Cluster analysis demonstrates the need to individualize care for cancer survivors

Importance Childhood cancer survivors may be reluctant to make changes in their employment because of access to health insurance. Objective To examine the prevalence of “job lock” (staying at a job to keep work-related health insurance) in a sample drawn from an established, multi-institutional cohort of full-time employed childhood cancer survivors compared with a random sample of siblings and to explore factors associated with job lock among cancer survivors. Design, Setting, and Participants Cross-sectional survey of full-time employed adult survivors of childhood cancer and a random sample of siblings derived from a cohort of 25 US pediatric oncology centers. Exposures Data collection included sociodemographic factors, insurance coverage, chronic medical conditions, and treatment. Main Outcomes and Measures Self-report of job lock and factors associated with job lock. Results Among the 522 participants, 394 were cancer survivors (54.5% male) and 128 were siblings (51.5% male). Job lock was reported by 23.2% (95% CI, 18.9%-28.1%) of survivors, compared with 16.9% (95% CI, 11.1%-25.0%) of siblings (P = .16). Job lock was more common among survivors reporting previous health insurance denial (relative risk [RR], 1.60; 95% CI, 1.03-2.52) and problems paying medical bills (RR, 2.43; 95% CI, 1.56-3.80). Among survivors, being female (RR, 1.70; 95% CI, 1.11-2.59; P = .01) and having a severe, disabling, or life-threatening health condition (RR, 1.72; 95% CI, 1.09-2.69; P = .02) were associated with job lock. Conclusions and Relevance Job lock is common among long-term childhood cancer survivors who are employed full-time. A survivor’s decision to remain employed at a job in order to maintain health insurance coverage may affect career trajectory, diminish potential earning power, and ultimately impact quality of life.

Impact of the elimination of cost sharing for mammographic breast cancer screening among rural US women: A natural experiment

BACKGROUND In efforts to inform clinical screening and development of survivorship care services, we sought to characterize patterns of health care needs among cancer survivors by (a) identifying and characterizing subgroups based on self-reported health care needs and (b) assessing sociodemographic, clinical, and psychosocial factors associated with these subgroups. METHODS We conducted a cross-sectional self-administered survey among patients presenting for routine follow-up care for early-stage cancer at our academic medical center. Latent class cluster analysis was used to identify clusters of survivors based on survivorship care needs within seven domains. Multiple logistic regression analyses were used to assess factors associated with these clusters. RESULTS Among 292 respondents, the highest unmet needs were related to the domains of side effects (53%), self-care (51%), and emotional coping (43%). Our analysis identified four clusters of survivors: (a) low needs (n = 123, 42%), (b) mainly physical needs (n = 46, 16%), (c) mainly psychological needs (n = 57, 20%), and (d) both physical and psychological needs (n = 66, 23%). Compared with cluster 1, those in clusters 2, 3, and 4 were younger (p < .03), those in clusters 3 and 4 had higher levels of psychological distress (p < .05), and those in clusters 2 and 4 reported higher levels of fatigue (p < .05). CONCLUSION Unmet needs among cancer survivors are prevalent; however, a substantial group of survivors report low or no health care needs. The wide variation in health care needs among cancer survivors suggests a need to screen all patients, followed by tailored interventions in clinical care delivery and research. IMPLICATIONS FOR PRACTICE The characterization of patients as having few needs, predominantly physical needs, predominantly psychological needs, or substantial needs that are both physical and psychological provides a productive framework for clinical care of cancer survivors and to guide further research in this field. Further research is needed to define the tailored information and services appropriate for each group of patients and to define optimal screening tools to efficiently identify the needs of individuals in oncology practice.

Mental health insurance access and utilization among childhood cancer survivors: a report from the childhood cancer survivor study

Rural US women experience disparities in breast cancer screening and outcomes. In 2006, a national rural health insurance provider, the National Rural Electric Cooperative Association (NRECA), eliminated out‐of‐pocket costs for screening mammography.

Electronic cigarette use patterns and reasons for use among smokers recently diagnosed with cancer

PurposeTo describe and compare the prevalence of mental health access, preference, and use among pediatric cancer survivors and their siblings. To identify factors associated with mental health access and use among survivors.MethodsSix hundred ninety-eight survivors in the Childhood Cancer Survivor Study (median age = 39.4; median years from diagnosis = 30.8) and 210 siblings (median age = 40.4) were surveyed. Outcomes included having mental health insurance coverage, delaying care due to cost, perceived value of mental health benefits, and visiting a mental health provider in the past year.ResultsThere were no differences in mental health access, preferences, and use between survivors and siblings (p > 0.05). Among respondents with a history of distress, most reported not having seen a mental health provider in the past year (80.9% survivors vs. 77.1% siblings; p = 0.60). Uninsured survivors were more likely to defer mental health services due to cost (24.6 vs. 8.4%; p < 0.001). In multivariable models, males (OR = 2.96) and survivors with public (OR = 6.61) or employer-sponsored insurance (ESI; OR = 14.37) were more likely to have mental health coverage.ConclusionsMost childhood cancer survivors value having mental healthcare benefits; however, coverage and use of mental health services remain suboptimal. The most vulnerable of survivors, specifically the uninsured and those with a history of distress, are at risk of experiencing challenges accessing mental health care.Implications for Cancer SurvivorsChildhood cancer survivors are at risk for experiencing high levels of daily life stress that is compounded by treatment-related sequelae. Integrative, system-based approaches that incorporate financial programs with patient education about insurance benefits can help reduce some of the financial barriers survivors face.

Integrating tobacco treatment into cancer care: A first snapshot of RCT findings.

Many patients with cancer use electronic cigarettes (e‐cigarettes), yet little is known about patterns and reasons for use. Using cross‐sectional baseline data from a randomized controlled trial, we aimed to describe prevalence and correlates of e‐cigarette use, frequency of use, and reasons for use among smokers recently diagnosed with cancer. Participants (n = 302) included adults (age ≥18 years) recently diagnosed with varied cancer types who smoked ≥1 cigarette within the past 30‐d from two US academic medical centers. Participants reported ever and current e‐cigarette use, and current e‐cigarette users reported days of e‐cigarette use and the main reason for use. We compared current, former, and never e‐cigarette users by sociodemographics, cancer type, medical comorbidities, smoking behaviors, attitudes, and emotional symptoms, and described use among current e‐cigarette users. Of smokers recently diagnosed with cancer, 49% (n = 149) reported ever e‐cigarette use and 19% (n = 56) reported current use. Of current e‐cigarette users, 29% (n = 16) reported daily use. Current e‐cigarette users did not differ from former and never e‐cigarette users by cancer type, smoking behaviors, or emotional symptoms. Women were more likely to be current users than never users, and current e‐cigarette users had less education than former users. Most current e‐cigarette users reported using them to help quit smoking (75%). One in five smokers with cancer report current e‐cigarette use, but most are not using e‐cigarettes daily. The majority report using e‐cigarettes to quit smoking. E‐cigarette use by patients with cancer appears to reflect a desire to quit smoking.