An Evaluation of Racial and Ethnic Representation in Research Conducted with Young Adults Diagnosed with Cancer: Challenges and Considerations for Building More Equitable and Inclusive Research Practices.

The psychosocial outcomes of adolescents and young adults (AYAs) diagnosed with cancer are poorer compared to their peers without cancer. However, AYAs with cancer from diverse racial and ethnic groups have been under-represented in research, which contributes to an incomplete understanding of the psychosocial outcomes of all AYAs with cancer. This paper evaluated the racial and ethnic representation in research on AYAs diagnosed with cancer using observational, cross-sectional data from the large Young Adults with Cancer in Their Prime (YACPRIME) study. The purpose was to better understand the psychosocial outcomes for those from diverse racial and ethnic groups. A total of 622 participants with a mean age of 34.15 years completed an online survey, including measures of post-traumatic growth, quality of life, psychological distress, and social support. Of this sample, 2% (n = 13) of the participants self-identified as Indigenous, 3% (n = 21) as Asian, 3% (n = 20) as "other," 4% (n = 25) as multi-racial, and 87% (n = 543) as White. A one-way ANOVA indicated a statistically significant difference between racial and ethnic groups in relation to spiritual change, a subscale of post-traumatic growth, F(4,548) = 6.02, p < 0.001. Post hoc analyses showed that those under the "other" category endorsed greater levels of spiritual change than those who identified as multi-racial (p < 0.001, 95% CI = [2.49,7.09]) and those who identified as White (p < 0.001, 95% CI = [1.60,5.04]). Similarly, participants that identified as Indigenous endorsed greater levels of spiritual change than those that identified as White (p = 0.03, 95% CI = [1.16,4.08]) and those that identified as multi-racial (p = 0.005, 95% CI = [1.10,6.07]). We provided an extensive discussion on the challenges and limitations of interpreting these findings, given the unequal and small sample sizes across groups. We concluded by outlining key recommendations for researchers to move towards greater equity, inclusivity, and culturally responsiveness in future work.

Randomized Controlled Trial of Virtually Delivered Cognitive Behavioral Therapy for Insomnia to Address Perceived Cancer-Related Cognitive Impairment in Cancer Survivors.

PURPOSE: Comorbid insomnia and cancer-related cognitive impairment (CRCI) are experienced by up to 26% of individuals diagnosed with cancer. This study examined the efficacy and durability of cognitive behavioral therapy for insomnia (CBT-I) on perceived CRCI in cancer survivors. METHODS: Atlantic Canadian cancer survivors with insomnia and CRCI were randomly assigned to receive seven weekly virtual CBT-I sessions (n = 63) or placed in a waitlist control group (n = 69) to receive treatment after the waiting period. Participants completed assessments at baseline, 1 month (mid-treatment), and 2 months (post-treatment). Age- and education-adjusted mixed-effects models using intention-to-treat principles assessed change at post-treatment. Data from both groups were then pooled to assess the durability of effects at 3 and 6 months. A mediation analysis examined whether change in insomnia symptoms mediated the effect of CBT-I on cognitive outcomes. RESULTS: The mean age of the sample was 60 years, 77% were women, and breast cancer was the most common diagnosis (41%). The treatment group reported an 11.35-point reduction in insomnia severity, compared with a 2.67-point reduction in the waitlist control group (P < .001). The treatment group had a greater overall improvement than the waitlist control on perceived cognitive impairment (P < .001; d = 0.75), cognitive abilities (P < .001; d = 0.92), and impact on quality of life (P < .001; d = 1.01). These improvements were maintained at follow-up. Change in insomnia symptoms fully mediated the effect of CBT-I on subjective cognitive outcomes. CONCLUSION: Treating insomnia with CBT-I produces clinically meaningful and durable improvements in CRCI. There is an urgent need increase access to evidence-based treatment for insomnia in cancer centers and the community.

Describing and Exploring Coping Strategies among Those Diagnosed with Cancer as an Adolescent or Young Adult: A YACPRIME Study.

A greater understanding of how young people cope with a cancer diagnosis is needed in order to inform age-appropriate supportive care. This paper describes the coping strategies used and explores relationships between coping strategies and personal, medical, and psychological variables among young adults (YAs) diagnosed with cancer. YAs (n = 547, mean age = 34.05 ± 6.00 years) completed an online survey, including the Brief COPE and measures of psychological functioning. Descriptive statistics and bivariate correlations were computed. Acceptance, self-distraction, positive reframing, and planning were the most used coping strategies by this sample. There were small (r = -0.09) to large (r = 0.51) significant relationships between personal, medical, and psychological variables and selected coping strategies. Coping with a cancer diagnosis early in life remains poorly understood. Identifying additional correlates and exploring inter- and intrapersonal variation in coping strategy use is required.

Perceived Executive Functioning Deficits After Diagnosis in Women with Non-Metastatic Breast Cancer Prior to Adjuvant Therapies.

BACKGROUND: Perceived deficits in executive functioning are among the many difficulties that women diagnosed with breast cancer experience. This study assessed the presence of perceived deficits in executive functioning among women with breast cancer prior to systemic treatment and radiation and associations between perceived deficits in executive function and comorbid fatigue, sleep, and mood disturbance. METHOD: Participants were recruited following their breast cancer diagnosis and assessed using the Behavior Rating Inventory of Executive Function for Adults (BRIEF-A), subjective and objective measures of sleep duration and efficiency, and self-report measures of insomnia severity, sleep quality, fatigue, and mood disturbance. Hierarchical regression was used to examine associations between symptoms, adjusting for age and education. RESULTS: The final sample included 92 women with a mean age of 60.7 years and 13.5 years of education. Thirteen percent of participants reported global executive dysfunction. After partitioning out variability from other independent variables, fatigue (p = < .001), perceived sleep quality (p = .030), and symptoms of insomnia (p = .008) accounted for 13.3%, 5.7%, and 8.5% of unique variance in perceived executive functioning, respectively. Emotional fatigue was most strongly associated with perceived deficits in executive functioning. Neither subjective or objective sleep duration or efficiency was associated with perceived deficits in executive functioning. CONCLUSION: Fatigue, particularly emotional fatigue, insomnia, and poor sleep quality had the strongest associations with perceived deficits in executive functioning. Sleep interventions and fatigue management strategies may prove useful for women who seek to improve their perceived executive functioning.

Rural-urban differences in distress, quality of life, and social support among Canadian young adult cancer survivors: A Young Adults with Cancer in Their Prime (YACPRIME) study.

PURPOSE: Geographic location plays a significant role in the health and wellbeing of those with cancer. This project explored the impact of rurality and social support on distress and quality of life in young adults (YAs) with cancer in Canada. METHODS: The current research analyzed data from the Young Adults with Cancer in Their Prime (YACPRIME) study. Participants completed measures of emotional distress (10-item Kessler Psychological Distress Scale), quality of life (12-item Short-form Health Survey), and social support (Medical Outcomes Study-Social Support Survey). Rural and urban-dwelling survivors were compared using MANOVAs. Bivariate analyses were conducted to explore associations between distress and social support. FINDINGS: Of the sample (N = 379), 26% identified their location as rural. Rural YA cancer survivors reported higher distress and worse physical health-related quality of life (HRQOL) than survivors from urban areas but similar levels of mental-health-related quality of life. Social support appeared to have a marginally greater effect on psychosocial outcomes for urban participants. All types of social support were associated with lower levels of distress. However, different types of social support were associated more strongly with distress depending on a participant's geography. CONCLUSIONS: Rural-dwelling YA cancer survivors experience significantly more distress and poorer physical HRQOL than urban-dwelling survivors. Different needs and preferences for social support may influence the psychological health of rural cancer survivors. Additional research is needed to determine how best to understand and address distress in rural YAs with cancer.

An Investigation of Social Status among Adolescents and Young Adults Who Have Been Diagnosed with Cancer in Canada.

BACKGROUND: Aims were to: (1) compare social status among AYAs diagnosed with cancer to a community population; (2) describe AYAs' change in employment/education status; and (3) examine predictors of social status. METHOD: Social status (i.e., education, employment, relationship status, and living arrangement) was captured from young adults diagnosed with cancer recruited via social media through a community-based organization from across Canada and randomly matched to a community sample by sex, age, province of residence, total household income and race/ethnicity at a ratio of 1:3. RESULTS: AYAs with cancer (N = 622) were an average of 4.45 (SD = 5.42) years from the completion of treatment and were less likely to be employed (χ2 = 96.35, p < 0.001) and more likely to be living at home with parents (χ2 = 17.00, p < 0.001). There were no differences in education or relationship status. Overall, 41% and 45% of AYAs reported quitting school or work, respectively. Non-metastatic disease (AOR 3.23, 95% CI 1.08-9.62), and better physical (AOR 1.07 95% CI 1.04-1.10) and mental quality of life (QOL)(AOR 1.06 95% CI 1.03-1.09), were associated with employment. Worse mental QOL (AOR 1.04 95% CI 1.01-1.07), less post-traumatic growth (AOR 1.01 95% CI 1.00-1.03), and social support (AOR 0.27, 95% CI 0.18-0.41) were associated with being single. Non-White race (AOR 3.19 95% CI 1.02-9.97) and less post-traumatic growth (AOR 0.97 95% CI 0.95-0.99) were associated with living with parents. CONCLUSIONS: AYAs diagnosed with cancer experience differences in attainment of employment and independent living compared to a community sample. These challenges may have implications for physical and mental QOL.

Understanding sleep quality in a national cohort of young adult cancer survivors: Results from the YACPRIME study.

PURPOSE: A cancer diagnosis in young adulthood can negatively impact sleep quality. The present study describes sleep issues in young adults (YAs) and analyzes potential demographic and clinical characteristics related to sleep quality. METHODS: Canadian YAs (n = 359) diagnosed with cancer between ages 15-39 participated in the study. Pittsburgh Sleep Quality Index (PSQI) items were examined to identify specific sleep issues that occurred 3+ times per week. Logistic regression was used to examine demographic, clinical, and symptom-related variables associated with poor sleep quality (defined as a PSQI global score >8) and sleep medication use. RESULTS: Participants were predominantly female (87.5%) with an average age of 32 years. Of the sample, 52% had poor sleep quality, 55.5% took >30 min to fall asleep, 32.9% slept <7 h, and 54.6% reported a habitual sleep efficiency of <85%. YAs with poor sleep quality were 5.7 times more likely to report severe distress (p=<.001), as well as 1.8 times more likely to report poorer mental (p = .03) and physical functioning (p = .05). Nearly half (44%) of YAs used sleep medication to help them sleep. YAs who reported severe psychological distress were 2.4 times more likely to use sleeping medication (p = .01), whereas those with a household income ≥$100,000/year were half as likely to use medication to help with sleep (p = .04). CONCLUSION: Psychological distress is associated with worse sleep quality and sleep medication use in YA cancer survivors. Sleep quality may be a possible target for future research and intervention to promote long-term function and recovery.

Androgen deprivation therapy and radiation for prostate cancer-cognitive impairment, sleep, symptom burden: a prospective study.

OBJECTIVES: This paper (1) sought to compare sleep, mood and physical symptom profiles of men with prostate cancer (PCa) who experienced subjective and objective cancer-related cognitive impairment (CRCI) during the first year of treatment and (2) examine if fluctuations in mood and physical symptoms are associated with change in subjective or objective CRCI. METHODS: This prospective observational cohort study examined 24 new patients with PCa receiving androgen deprivation therapy (ADT) and radiation therapy (RT) during the first 12 months of treatment. Participants completed subjective and objective assessments of cognition, sleep continuity and self-report measures of insomnia, fatigue, depression and anxiety. Independent sample t-tests, correlations and hierarchical regressions were used to compare groups, explore associations, and assess change over time. Effects are reported as corrected Cohen's d (dc). RESULTS: Men with objective CRCI reported worse subjective time asleep (dc=0.47) and more depression (dc=0.55). Men with subjective CRCI reported worse insomnia (dc=0.99), hot flashes (dc=0.76), sleep quality (dc=0.54), subjective total sleep time (dc=0.41), wake after sleep onset (dc=0.71), sleep efficiency (dc=0.49), fatigue (dc=0.67) and objectively estimated sleep latency (dc=0.72) than men without subjective CRCI. Declines in perceived cognition was associated with higher anxiety (p=0.05), fatigue (p≤0.01) and symptoms of insomnia (p=0.01). Finally, subjective time awake during the night (p=0.03) and fatigue (p=0.02) were associated with subjective cognitive decline, controlling for objective change. CONCLUSIONS: Subjective concerns of CRCI appear more critical to patient experience than objective measurements in men with PCa who have received RT and ADT. Interventions to improve sleep may result in an improved perception of cognition.

Prevalence and factors associated with insomnia symptoms in adolescents and young adults with cancer during the COVID-19 pandemic.

OBJECTIVE: The COVID-19 pandemic has been particularly distressing for adolescents and young adults (AYAs) diagnosed with cancer. High levels of distress are associated with sleep disturbances. This study examined the prevalence of insomnia symptoms in AYAs during the COVID-19 pandemic and identified factors related to greater insomnia severity. DESIGN, SETTING, AND PARTICIPANTS: An online survey was administered to Canadian AYAs (N = 805) diagnosed with cancer between 15 and 39 years from January to February 2021. MEASUREMENTS: The primary measure was the Insomnia Severity Index (ISI). Univariable and multivariable binomial logistic regression examined demographic, clinical, and psychological factors associated with significant insomnia symptoms (ISI score ≥12). RESULTS: Three hundred twelve (38.8%) participants reported insomnia symptoms. In the multivariable model, severe psychological distress (ie, depression and anxiety; adjusted odds ratio (AOR) = 28.75, p ≤.001), having a pre-existing mental health condition (AOR = 1.92, p = .03), worsened mental health during the pandemic (AOR = 1.73, p = .02), finished cancer treatment ≥1 year ago (AOR = 1.72, p = .03), and experiencing no changes to schooling during the COVID-19 pandemic (AOR = 2.18, p = .004) were associated with significant insomnia symptoms. Standardized coefficients also indicated that worrying about possible disruptions to cancer care and being a homemaker/caretaker contributed to insomnia symptoms. CONCLUSIONS: Nearly 40% of AYAs with cancer reported insomnia symptoms during the COVID-19 pandemic. Insomnia was associated with potentially modifiable factors such as psychological distress, highlighting possible targets for intervention.