Long-term Survivors Of Young Adult Cancer Research Articles

Financial distress and medical financial hardship among young adult survivors of blood cancer.

The long-term financial impact of cancer care has not been adequately addressed in young adults. As part of a remote intervention study, we describe medical financial distress and hardship among young adult survivors of blood cancer at study entry. Young adults were recruited from 6 US hospitals. Using a Research Electronic Data Capture link, young adults confirmed their eligibility-namely, currently 18 to 39 years of age, blood cancer diagnosis 3 or more years ago, off active treatment, and not on parent's insurance. Following consent, the baseline assessment was sent. The primary outcome measure, the Personal Financial Wellness Scale, measured financial distress (scored as severe, 1-2; high, 3-4; average, 5-6; and low to no, 7-10). Medical financial hardship encompassed material hardship, psychological impact, and coping behaviors. Descriptive summary statistics and linear regression were used. Among the 126 participants, 54.5% came from minority racial or ethnic groups. Median time since diagnosis was 10 years (interquartile range = 6-16 years), with 56% having received a diagnosis when they were between 18 and 39 years of age. The overall mean (standard deviation) Personal Financial Wellness Scale score was 5.1 (2.4), but 49% reported severe or high distress. In multivariable analysis, female sex, Hispanic ethnicity, and lower income were strongly associated with worse Personal Financial Wellness Scale scores. Among participants with severe financial distress (n = 26), 72% reported 2 or more household material hardships, had worse scores across all psychological domains, and altered survivorship care because of cost (68%). Nearly half of long-term young adult cancer survivors reported severe or high levels of financial distress. Individuals with severe or high distress also reported more medical financial hardship than other participants. This finding highlights the need for ongoing financial intervention in this vulnerable population. NCT05620979.

Needs for information about lifestyle and rehabilitation in long-term young adult cancer survivors

BackgroundHealthy lifestyle and rehabilitation may mitigate late effects after cancer treatment, but knowledge about lifestyle and rehabilitation information needs among long-term young adult cancer survivors (YACSs) (≥ 5 years from diagnosis) is limited. The present study aimed to examine such information needs among long-term YACSs, and identify characteristics of those with needs.Material and methodsThe Cancer Registry of Norway identified long-term YACSs diagnosed with breast cancer, colorectal cancer, non-Hodgkin lymphoma, leukemia, or malignant melanoma at the age of 19–39 years, between 1985 and 2009. Survivors were mailed a questionnaire, in which respondents reported their information needs on physical activity, diet, and rehabilitation services 5–30 years post-diagnosis. Descriptive statistics and logistic regression analyses were used to examine the prevalence of information needs and associated factors.ResultsOf 1488 respondents (a response rate of 42%), 947 were included. Median age at diagnosis was 35 years (range 19–39) and median observation time since diagnosis was 14 years (range 5–30). In total, 41% reported information needs for information about physical activity, 45% about diet, and 47% about rehabilitation services. Information needs were associated with higher treatment intensity, increasing number of late effects, and an unhealthy lifestyle.ConclusionA large proportion of long-term YACSs report information needs regarding lifestyle and/or rehabilitation more than a decade beyond treatment. Assessments of such information needs should become a part of long-term care of these cancer survivors.

Fear of cancer recurrence among young adult cancer survivors\u2014exploring long-term contributing factors in a large, population-based cohort

PurposeFear of cancer recurrence (FCR) may be debilitating, yet knowledge of FCR among the growing population of long-term young adult cancer survivors (YACS) is scarce. We explored risk of FCR and associated factors in a nation-wide, population-based cohort of YACS.MethodsAll 5-year survivors diagnosed at the ages of 19–39 years with breast cancer (BC), malignant melanoma (MM), colorectal cancer (CRC), leukemia (LEU), or non-Hodgkin lymphoma (NHL) between 1985 and 2009 in Norway were identified by the Cancer Registry of Norway and completed the cross-sectional comprehensive NOR-CAYACS health survey. Univariate and multivariate linear regression modeling was performed.ResultsIn total, 936 survivors were included, with an average of 16 years since diagnoses. BC was the most prevalent cancer form (38.4%), followed by MM (24.7%), NHL (15.6%), CRC (11.8%), and LEU (9.6%). Survivors worried most about getting another cancer (74%), and (20%) reported quite a bit or a lot of FCR. BC and MM survivors had the highest FCR scores. Post-traumatic stress symptoms (PTSS) had the strongest association with FCR (Std B 0.21, p < 0.01), above demographic and clinical variables.ConclusionsFCR is prevalent even among long-term YACS, including survivors of MM with favorable prognoses.Implications for Cancer SurvivorsAttention to ongoing risks of PTSS and FCR in this growing survivor population is warranted to optimize future survivorship care.

Employment Status and Work Ability in Long-Term Young Adult Cancer Survivors.

Purpose: In young adult cancer survivors (YACSs) to explore the rate of being nonemployed and having low work ability, and to identify factors associated with these two outcomes. Methods: All Norwegian YACSs (N = 3558) diagnosed at ages 19-39 years and treated between 1985 and 2009 for breast or colorectal cancer, leukemia, non-Hodgkin lymphoma, or melanoma, and alive in 2015, were mailed a questionnaire. The response rate was 42%. For treatment, a minimal surgery-only group (N = 198) was defined as reference group, and 1000 YACSs represented the local, systemic, and systemic plus other treatment groups. Work status was compared with normative data. Results: The sample included 63% females. Median age at survey was 49 years (range 27-65), and median time since first cancer diagnosis was 16 years (range 6-31). At survey, 25% (95% confidence interval [CI]: 22-27) of YACSs were nonemployed, and 38% (95% CI: 35-41) reported low work ability. The rate of being nonemployed was similar to normative data. More female YACSs held disability pension compared with normative data. In multivariable analyses, an increasing number of adverse effects (AEs), cardiovascular diseases, lower basic education, reduced level of self-rated health, and increased level of depression were significantly associated with both being nonemployed and having low work ability. Conclusions: In YACSs surveyed at median 49 years of age, 25% were nonemployed and 38% had low current work ability. An increased mean number of long-term AEs and several other health-related factors were significantly associated with both these outcomes. Health care providers responsible for YACSs should be attentive to such factors and work ability.

Understanding the Workplace Interactions of Young Adult Cancer Survivors With Occupational and Environmental Health Professionals.

Work provides satisfaction and stability to young adult cancer survivors. However, progressive health changes because of cancer may compromise safety and diminish functional ability. The purpose of this study was to describe long-term young adult cancer survivors' work experiences and describe their interactions with occupational and environmental health professionals (OEHPs) within the workplace. Cancer survivors were recruited from the Los Angeles County Cancer Surveillance Program. Professional organizations provided access to OEHPs. Constructivist grounded theory guided individual semi-structured interviews during data collection and analysis. Processes of interaction between cancer survivors and OEHPs found to influence work included revealing the survivor-self, sustaining work ability, gatekeeping (employment opportunities, return to work), and accessing support. OEHPs appeared to facilitate survivors' work ability in the long term if services were available, services were known to survivors, and survivors revealed needs. Educating workers about OEHP services throughout cancer experiences and survivorship could ultimately improve interactivity and provide supportive work environments.

Rates of diagnostic imaging in long-term survivors of young adult malignancies.

69 Background: In general, clinical practice guidelines do not recommend the use of diagnostic imaging in long-term surveillance of cancer survivors. Although warranted diagnostic imaging has clinical benefits, the overuse of imaging in cancer survivors may lead to false-positive results, more invasive tests, economic burden and unnecessary radiation exposure. The objective of this study was to determine rates of diagnostic imaging in long-term young adult cancer survivors (YAS) compared to cancer-free controls in Ontario, Canada. Methods: We conducted a population-based retrospective study. Young adults aged 20 to 44 diagnosed with an invasive malignancy between 1992 and 1999 who lived at least 5 years without recurrent disease were identified in the Ontario Cancer Registry. YAS were matched 1:5 to randomly selected cancer-free controls on calendar year of birth, sex, and place of residence. The rate at which YAS received plain radiography, CT, ultrasound and nuclear medicine studies was compared to rates received by controls using Poisson regression. Results: 20,911 survivors and 104,524 controls met our inclusion criteria. YAS received all types of diagnostic imaging at significantly higher rates than controls in the 10 year period after 5-year recurrence-free survival. YAS received CT scanning at a rate 3.6-fold higher than controls (95% confidence interval [CI]: 3.37, 3.62). In contract, the difference in rates of ultrasound between the two groups was more modest (rate ratio [RR] = 1.40, 95% CI: 1.38, 1.43). YAS also received plain radiography (RR =1.66, 95% CI: 1.64, 1.69) and nuclear studies (RR=1.97, 95% CI: 1.89, 2.04) at significantly higher rates than controls, resulting in a 4.6-fold adjusted higher diagnostic radiation dose than controls. Conclusions: Survivors received significantly higher rates of all diagnostic studies after 5-year survival compared to their age-matched cancer-free counterparts. Hazards associated with overuse of imaging such as radiation exposure and heightened anxiety about test results need to be considered. Both patients and providers should be educated about the role of diagnostic imaging in long-term surveillance including the utility of studies without radiation, such as ultrasound.

Patterns of diagnostic imaging and cumulative radiation exposure among long-term young adult cancer survivors.

6027 Background: Young adults surviving a diagnosis of malignancy have a considerable life expectancy, however, little is known about radiation exposure from diagnostic imaging in these patients. This study aims to describe patterns of imaging and radiation exposure in young adult cancer survivors (YAS) and cancer-free controls in Ontario, Canada. Methods: We conducted a population-based retrospective study. Young adults aged 20-44 diagnosed with an invasive malignancy between 1992 and 1999 who lived at least 5 years without recurrent disease were identified in the Ontario Cancer Registry. YAS were matched 1:5 to randomly selected cancer-free controls on calendar year of birth, sex, and geographic location. Radiological procedures were identified through Ontario Health Insurance Plan administrative data. The rate at which individuals underwent diagnostic procedures after surviving 5-years was compared between survivors and controls using Poisson regression. Cumulative radiation exposure due to computed tomography (CT) and standard x-ray were calculated. Results: 20,911 YAS and 104,524 controls had a median of 13.5 years observation time after cancer diagnosis/referent date. The rate of CT scanning after 5 year survival was higher in YAS (rate ratio= 3.59, 95% CI: 3.46 – 3.73) and varied according to malignancy type (Table). Over the course of diagnosis, treatment and surveillance to 10 years, the average YAS was exposed to 33.8 mSv of radiation, 4.4 times the radiation exposure an individual in the general population received. 47% of YAS cumulative dose was attributed to exposure 5 years or more after diagnosis. Conclusions: YAS undergo imaging and are exposed to diagnostic irradiation at a significantly higher rate than controls even after 5 years of recurrence free survival. Alternative imaging techniques not associated with exposure to radiation should be considered for these patients. [Table: see text]