Material and psychological financial hardship related to employment disruption among female adolescent and young adult cancer survivors.

BACKGROUND: The importance of addressing adverse financial effects of cancer among adolescents and young adults (AYAs) is paramount as survival improves. In the current study, the authors examined whether cancer-related employment disruption was associated with financial hardship among female AYA cancer survivors in North Carolina and California. METHODS: AYA cancer survivors identified through the North Carolina Central Cancer Registry and the Kaiser Permanente Northern/Southern California tumor registries responded to an online survey. Disrupted employment was defined as reducing hours, taking temporary leave, or stopping work completely because of cancer. Financial hardship was defined as material conditions or psychological distress related to cancer. Descriptive statistics and chi-square tests were used to characterize the invited sample and survey respondents. Marginal structural binomial regression models were used to estimate prevalence differences (PDs) and 95% confidence intervals (95% CIs). RESULTS: Among 1328 women employed at the time of their diagnosis, women were a median age of 34 years at the time of diagnosis and 7 years from diagnosis at the time of the survey and approximately 32% experienced employment disruption. A substantial percentage reported financial hardship related to material conditions (27%) or psychological distress (50%). In adjusted analyses, women with disrupted employment had a 17% higher burden of material conditions (95% CI, 10%-23%) and an 8% higher burden of psychological distress (95% CI, 1%-16%) compared with those without disruption. CONCLUSIONS: Financial hardship related to employment disruption among female AYA cancer survivors can be substantial. Interventions to promote job maintenance and transition back to the workforce after treatment, as well as improved workplace accommodations and benefits, present an opportunity to improve cancer survivorship.

Development and validation of a measure of comprehension of genomic screening-negative results (CoG-NR).

To realize the promise of population genomic screening for rare medically actionable conditions, critical challenges in the return of normal/negative results must be understood and overcome. Our study objective was to assess the functioning of a new 13-item measure (CoG-NR) of understanding of and knowledge about normal/negative genomic screening results for three highly actionable conditions: Lynch Syndrome, Hereditary Breast and Ovarian Cancer, and Familial Hypercholesterolemia. Based on our prior research and expert review, we developed CoG-NR and tested how well it functioned using hypothetical scenarios in three Qualtrics surveys. We report on its psychometric properties and performance across the three different conditions. The measure performed similarly for the three conditions. Examinations of item difficulty, internal reliability, and differential item functioning indicate that the items perform well, with statistically significant positive correlations with genomic knowledge, health literacy, and objective numeracy. CoG-NR assesses understanding of normal/negative results for each of the conditions. The next step is to examine its performance among individuals who have actually undergone such tests, and subsequent use in clinical or research situations. The CoG-NR measure holds great promise as a tool to enhance benefits of population genomic screening by bringing to light the prevalence of incorrect interpretation of negative results.

Patient/Provider Discussions About Clinical Trial Participation and Reasons for Nonparticipation Among Adolescent and Young Adult Women with Cancer.

Purpose: Clinical trial enrollment is low among adolescents and young adults (AYAs) with cancer and may contribute to inferior survival gains in recent years in this population compared with other age groups. We investigated clinical trial participation among AYA women with cancer, and examined whether patients discussed clinical trial participation with their doctor and reasons for nonparticipation. Methods: Women with a diagnosis of breast cancer, thyroid cancer, melanoma, lymphoma, or gynecologic cancer at ages 15-39 years during 2004-2016 were identified from the North Carolina Central Cancer Registry and the Kaiser Permanente Southern California health system. During 2018-2019, a total of 1264 eligible women completed an online survey (response = 13%), which examined survivorship issues among AYAs. Results: Overall, 5% of participants reported that they had participated in a clinical trial. Most women reported that they had not discussed clinical trial participation with a medical provider (76%) and that they did not know whether a relevant trial was available for their cancer (73%). Among those who knew that a trial was available but did not participate, the most commonly reported reasons for nonparticipation included concerns about side effects of the treatment in the trial and concerns that the treatment had not been sufficiently tested. Conclusion: Only a small proportion of AYA women with cancer in our cohort reported discussing a clinical trial with a provider or knowing whether a relevant trial was available. Our findings point to opportunities to improve patient/provider communication to increase clinical trial enrollment among AYAs with cancer.

End-of-life experiences of mothers with advanced cancer: perspectives of widowed fathers.

OBJECTIVE: Despite the importance of parenting-related responsibilities for adult patients with terminal illnesses who have dependent children, little is known about the psychological concerns of dying parents and their families at the end of life (EOL). The aim of this study was to elicit widowed fathers' perspectives on how parental status may have influenced the EOL experiences of mothers with advanced cancer. SUBJECTS: 344 men identified themselves through an open-access educational website as widowed fathers who had lost a spouse to cancer and were raising dependent children. METHODS: Participants completed a web-based survey about their wife's EOL experience and cancer history, and their own depression (Center for Epidemiologic Studies Depression Scale, CES-D) and bereavement (Texas Revised Inventory of Grief, TRIG) symptoms. Descriptive statistics, Fisher's exact tests, and linear regression modelling were used to evaluate relationships between variables. RESULTS: According to fathers, 38% of mothers had not said goodbye to their children before death and 26% were not at all 'at peace with dying.' Ninety per cent of widowed fathers reported that their spouse was worried about the strain on their children at the EOL. Fathers who reported clearer prognostic communication between wife and physician had lower CES-D and TRIG scores. CONCLUSIONS: To improve EOL care for seriously ill patients and their families, we must understand the concerns of parents with dependent children. These data underscore the importance of parenting-related worries in this population and the need for additional clinical and research programmes devoted to addressing these issues.

An exploratory study of end-of-life prognostic communication needs as reported by widowed fathers due to cancer.

OBJECTIVE: Effective physician communication about prognosis is a critical aspect of quality care for families affected by terminal illness. This is particularly important for spousal caregivers of terminally ill parents of dependent children, who may have unique needs for communication about anticipated death. The objective of this study was to explore end-of-life prognostic communication experiences reported by bereaved fathers whose wives died from cancer. METHODS: From October 2012 to November 2013 we surveyed widowed fathers whose wives died from cancer through an open-access educational website. The survey included the following open-ended questions regarding prognostic communication: 'What is the most important thing you would like us to know about whether/how your wife's doctors communicated with you about her anticipated death? What do you wish had been different, if anything?' We performed traditional content analysis of responses. Two researchers coded and categorized the data. RESULTS: Two hundred forty-four men responded to the survey questions on prognostic communication. Major themes addressed by respondents were the importance of clear and honest communication and physician bedside manner. They also identified unmet information needs, including wanting to know prognosis sooner. Relevant sub-themes included death coming as a surprise, avoidance, and caregiver regret. CONCLUSIONS: Surviving spouses due to cancer can provide important insights for health care providers about optimum prognostic communication at the end of life. Increased physician attention to the communication preferences of both patients and their partners may improve bereavement outcomes for family members.

Suboptimal surveillance for and knowledge of hepatocellular carcinoma among primary care providers.

BACKGROUND & AIMS: A large proportion of patients with cirrhosis are seen only by their primary care provider (PCP). Surveillance for hepatocellular carcinoma (HCC) therefore depends on PCPs in these cases. We aimed to assess PCP knowledge and practice of HCC surveillance. METHODS: We contacted a random sample of 1000 North Carolina PCPs by mail. All PCPs contacted received an introductory letter followed by a 12-item questionnaire addressing HCC surveillance knowledge and practice. RESULTS: A total of 391 PCPs (39%) completed the survey; 89% saw patients with cirrhosis in their practice, but only 45% screened for HCC. Among PCPs who screened for HCC, the most common methods were ultrasound analysis and measurement of α-fetoprotein level (66%). Reasons for surveillance included supported by evidence (72%), recommended by medical societies (42%), and malpractice liability for not performing surveillance (26%). Of PCPs who did not screen, 84% referred to gastroenterologists for surveillance decisions, 24% were unaware of recommendations, 8% were uncertain of the benefits, and 8% were concerned about cost. Hepatic resection and liver transplantation were identified as effective therapies by 67% and 56% of PCPs, respectively, but all other effective therapies were identified by less than half (transarterial chemoembolization by 42%, radiofrequency ablation by 35%, and sorafenib by 26%). The ability to identify at least 1 effective therapy was associated independently with surveillance (odds ratio, 2.1; 95% confidence interval, 1.1-4.0). CONCLUSIONS: Most PCPs see patients with cirrhosis, but only a minority screen for HCC. PCP knowledge of effective HCC therapy options is suboptimal. Efforts to enlist PCPs in HCC surveillance may be best served by increasing their knowledge of effective therapies.