Connectedness to the young adult cancer community and post-traumatic growth: A young adults with cancer in their prime study.

OBJECTIVE: For young adults (YAs) with cancer, connecting with peer cancer survivors can provide a unique sense of community and may enhance post-traumatic growth (PTG). This study examined the relationship between connectedness to the YA cancer community and PTG among YAs, independent of overall social support. METHODS: Data were obtained from the young adults with cancer in their prime study, a cross-Canada survey of YA cancer survivors. Participants were stratified by level of social support into two groups (low/high). Multivariable logistic regression was used to examine the association between PTG and connectedness to the YA community adjusting for respondent characteristics, and the interaction between support and connectedness. RESULTS: Of 444 respondents, mean age was 34.2 (SD = 6.0), time-since-diagnosis was 4.8 years (SD = 5.4), and 87% were female. Over two-thirds of respondents (71%) reported feeling connected to the YA community. Level of connectedness to the YA community did not differ by social support group, and interaction between social support and connectedness to the YA community was not significant. In the adjusted regression, connectedness to the YA community (aOR = 2.29, 95% CI: 1.10-4.91), high social support (aOR = 2.98, 95% CI: 1.36-6.74), greater time-since-diagnosis (aOR = 1.09, 95% CI: 1.04-1.15) and female sex (aOR = 2.21, 95% CI: 1.23-4.04) were associated with greater odds of moderate-to-high PTG. CONCLUSIONS: Feeling connected to a community of YA cancer peers was associated with moderate-to-high PTG among YAs, independent of overall perceived social support. Future efforts should increase access to YA cancer communities and foster a sense of connectedness among YAs with cancer.

Screening for distress and needs: Findings from a multinational validation of the Adolescent and Young Adult Psycho-Oncology Screening Tool with newly diagnosed patients.

OBJECTIVE: Adolescents and young adults (AYAs) diagnosed with cancer commonly experience elevated psychological distress and need appropriate detection and management of the psychosocial impact of their illness and treatment. This paper describes the multinational validation of the Distress Thermometer (DT) for AYAs recently diagnosed with cancer and the relationship between distress and patient concerns on the AYA-Needs Assessment (AYA-NA). METHODS: AYA patients (N = 288; 15-29 years, Mage  = 21.5 years, SDage  = 3.8) from Australia (n = 111), Canada (n = 67), the UK (n = 85) and the USA (n = 25) completed the DT, AYA-NA, Hospital Anxiety Depression Scale (HADS) and demographic measures within 3 months of diagnosis. Using the HADS as a criterion, receiver operating characteristics analysis was used to determine the optimal cut-off score and meet the acceptable level of 0.70 for sensitivity and specificity. Correlations between the DT and HADS scores, prevalence of distress and AYA-NA scores were reported. RESULTS: The DT correlated strongly with the HADS-Total, providing construct validity evidence (r = 0.65, p < 0.001). A score of 5 resulted in the best clinical screening cut-off on the DT (sensitivity = 82%, specificity = 75%, Youden Index = 0.57). Forty-two percent of AYAs scored at or above 5. 'Loss of meaning or purpose' was the AYA-NA item most likely to differentiate distressed AYAs. CONCLUSIONS: The DT is a valid distress screening instrument for AYAs with cancer. The AYA-POST (DT and AYA-NA) provides clinicians with a critical tool to assess the psychosocial well-being of this group, allowing for the provision of personalised support and care responsive to individuals' specific needs and concerns.

A qualitative analysis of the benefits and barriers of support groups for patients with brain tumours and their caregivers.

PURPOSE: Brain tumours represent a significant burden for patients and caregivers. The aims of the present study were to explore the perceived benefits of support groups for patients and their caregivers, as well as the barriers to participation, and to generate suggestions for improvement. METHODS: Brain tumour patients and caregivers were recruited from the brain tumour centre at Princess Margaret Cancer Centre to participate in focus groups. Focus groups were audio-recorded, transcribed, and thematically analysed using qualitative methods. Eight patients (five who had attended the support groups and three who had not) and eight caregivers (all of whom attended the groups) participated in separate focus groups. RESULTS: Five major themes emerged: group cohesion (e.g., camaraderie and kinship), motivating factors to attend (e.g., loneliness), logistical factors that affected attendance (e.g., transportation), structure and content of the group (e.g., discussion topics), and suggestions for improvement (e.g., receiving personal reminders). CONCLUSIONS: This study highlights the supportive needs of brain tumour patients and their caregivers. The key findings provide helpful information on how to maximise the benefits of support groups for these populations.

Parental spirituality in life-threatening pediatric cancer.

This study addressed parental spirituality in the context of pediatric cancer with a poor prognosis. Drawing upon previous research implementing a longitudinal grounded theory design examining parental hope, 35 parents were interviewed regarding their experiences with an emergent description of the role of spirituality in parents' daily lives. Spirituality included religious beliefs and practices, notions of a higher force or cosmos, relationship with a divine being, as well as elements emerging from meaning-making and relationships. Parental expectations of spirituality remained relatively constant across data collection time points (3-9 months postdiagnosis), although limited variation occurred relative to shifting circumstance (e.g., deterioration of the child's condition). Spirituality appeared to offer: greater acceptance of parents' inability to protect their child from harm related to her/his life-threatening illness, guidance and emotion decompression, and support from one's faith community. Recommendations for integrating spiritual assessment in clinical care practice are offered.

Comorbid symptoms of emotional distress in adult survivors of childhood cancer.

BACKGROUND: Childhood cancer survivors are at risk for emotional distress symptoms, but symptom comorbidity has not been previously examined. This study examined distress profiles for adult survivors of childhood cancer diagnosed between 1970 and 1999. METHODS: Self-reported depression, anxiety, and somatization symptoms from Brief Symptom Inventory 18 were examined in survivors (n = 16,079) and siblings (n = 3085) from the Childhood Cancer Survivor Study. A latent profile analysis identified clusters of survivors with individual and comorbid symptoms. Disease, treatment, and demographic predictors of distress comorbidity patterns were examined with multinomial logistic regressions. RESULTS: Four clinically relevant profiles were identified: low distress on all subscales (asymptomatic, 62%), high distress on all subscales (comorbid distress, 11%), elevated somatization (somatic symptoms, 13%), and elevated depression and anxiety (affective distress, 14%). Compared with siblings, fewer survivors were asymptomatic (62% vs 74%, P < .0001), and more had comorbid distress (11% vs 5%, P < .0001). Survivors of leukemia (odds ratio [OR], 1.34; 95% confidence interval [CI], 1.12-1.61), central nervous system tumors (OR, 1.30; 95% CI, 1.05-1.61), and sarcoma (OR, 1.26; 95% CI, 1.01-1.57) had a greater risk of comorbid distress than survivors of solid tumors. Psychoactive medications were associated with comorbid distress (P < .0001), and this suggested that this group was refractory to traditional medical management. Comorbid distress was associated with poor perceived health (OR, 31.7; 95% CI, 23.1-43.3), headaches (OR, 3.2; 95% CI, 2.8-3.7), and bodily pain (OR, 4.0; 95% CI, 3.2-5.0). CONCLUSIONS: A significant proportion of survivors are at risk for comorbid distress, which may require extensive treatment approaches beyond those used for individual symptoms. Cancer 2016;122:3215-24. © 2016 American Cancer Society.

The development of scales to measure childhood cancer survivors' readiness for transition to long-term follow-up care as adults.

PURPOSE: To develop and validate scales to measure constructs that survivors of childhood cancer report as barriers and/or facilitators to the process of transitioning from paediatric to adult-oriented long-term follow-up (LTFU) care. METHODS: Qualitative interviews provided a dataset that were used to develop items for three new scales that measure cancer worry, self-management skills and expectations about adult care. These scales were field-tested in a sample of 250 survivors aged 15-26 years recruited from three Canadian hospitals between July 2011 and January 2012. Rasch Measurement Theory (RMT) analysis was used to identify the items that represent the best indicators of each scale using tests of validity (i.e. thresholds for item response options, item fit statistics, item locations, differential item function) and reliability (Person Separation Index). Traditional psychometric tests of measurement performance were also conducted. RESULTS: RMT led to the refinement of a 6-item Cancer Worry scale (focused on worry about cancer-related issues such as late effects), a 15-item Self-Management Skills scale (focused on skills an adolescent needs to acquire to manage their own health care), and a 12-item Expectations scale (about the nature of adult LTFU care). Our study provides preliminary evidence about the reliability and validity of these new scales (e.g. Person Separation Index ≥ 0.81; Cronbach's α ≥ 0.81; test-retest reliability ≥ 0.85). CONCLUSION: There is limited knowledge about the transition experience of childhood cancer survivors. These scales can be used to investigate barriers survivors face in the process of transition from paediatric to adult care.

Supporting adolescents and young adults with cancer through transitions: position statement from the Canadian Task Force on Adolescents and Young Adults with cancer.

OBJECTIVE: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide recommendations on how to help the AYA regain a sense of control over their lives as they adjust to these transition experiences. METHODS: We reviewed and synthesized a heterogeneous sample of studies and recommendations, ranging from well-designed case-controlled investigations to opinions of respected authorities based on clinical experience, and reports of expert committees. RESULTS: We describe the key factors that have an impact on different transitions during the cancer journey, and the need for developmentally appropriate services for AYA with cancer that consider both the system issues and individual transition issues. Our recommendations are not intended to be prescriptive, but they are broad enough to be applicable in different types of settings (eg, family doctor, cancer center, specialty service) and systems beyond health care (eg, school system, social system). CONCLUSIONS: The Task Force urges health care providers, parents, and AYA with cancer to work together in planning and implementing strategies that will enable individuals to navigate the transitions they encounter along the cancer journey successfully, and strive for meaningful participation in life situations, achieving their potential as fully functional members of society.

Together and apart: providing psychosocial support for patients and families living with brain tumors.

PURPOSE: Brain tumors are associated with neurological sequelae and poor survival, contributing to distress in patients and their families. Our institution has conducted separate support groups for brain tumor patients and caregivers since 1999. This retrospective cohort study aimed to identify characteristics of brain tumor group participants in relation to attendance frequency, and compare themes of discussion in patient and caregiver groups. METHODS: Demographic and medical characteristics were obtained from patient and caregiver group registration sheets and medical chart review. We quantified discussion topics recorded by group facilitators between 1999 and 2006, extracted themes, and examined similarities and differences in the way these themes were expressed. RESULTS: A total of 137 patients and 238 caregivers attended the groups; about half attended more than one session. The chart review of a randomly selected subset of patient participants revealed that 57.5 % were married, 58.8 % had high-grade gliomas, and 55 % attended their first group within 3 months of diagnosis or at tumor progression. Both groups discussed physical and cognitive consequences, emotional reactions, relationships, coping, end of life, and practical issues. Caregivers discussed difficulties achieving self-care and caregiver burden. CONCLUSIONS: Brain tumor support group facilitators can expect to encounter a range of medical and psychosocial issues in accommodating patients' and caregivers' diverse concerns. Separate brain tumor patient and caregiver groups may allow participants to explore those concerns without worrying about effects on their friends or family. It remains to be seen whether the groups meet the needs of attendees, and whether those who do not attend the groups have unmet needs.

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.

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.

Assessing information and service needs of young adults with cancer at a single institution: the importance of information on cancer diagnosis, fertility preservation, diet, and exercise.

BACKGROUND: Young adults (YA) with cancer have unique psychosocial and medical needs. The objective of this study was to identify information and service needs important to YA cancer patients. METHODS: A supportive care needs survey was administered to ambulatory patients (

Psychosocial challenges and resource needs of young adult cancer survivors: implications for program development.

Young adult (YA) cancer survivors have specific needs because of their age and life stage. The authors investigated the challenges and resource needs of YA survivors, exploring the influence of age at diagnosis (i.e., diagnosis during childhood vs. young adulthood) and the diagnosis of a brain tumor. The authors conducted four focus groups with YA survivors (N = 22, age 18-35), treated for brain tumors or other cancers in childhood (mean age at diagnosis ± SD: brain, 10.7 ± 2.86; other cancers, 10.5 ± 3.51) or as YAs (brain, 23.5 ± 4.04; other cancers, 25.6 ± 4.10). Transcripts of audiotaped sessions were coded using thematic analysis. Common challenges across the groups included physical appearance, fertility, late effects, social relationships, and changing priorities. Childhood cancer survivors struggled with identity formation, social isolation, and health care transitions. Concerns specific to survivors diagnosed as YAs included financial independence and protecting parents. Childhood brain tumor survivors struggled with cognitive deficits, limited career options, and poor social skills, whereas brain tumor survivors diagnosed as YAs emphasized cognitive decline, loss of autonomy, and living with an incurable disease. Despite the unique challenges identified, all groups described similar resource needs including peer support, age-specific information, and having health care providers proactively raise salient issues. Young adult cancer survivors have many similar psychosocial and information needs regardless of age at or type of diagnosis that differ from those of pediatric and older adult survivors. With improved survival rates, the small number of YA in any one institution will grow. It will become increasingly important to create comprehensive, age-appropriate YA programs that address overlapping and unique needs of survivors at this life stage.

Prevalence, severity, and predictors of symptom burden among adolescents and young adults with cancer.

BACKGROUND: Symptom burden in adolescents and young adults (AYA) with cancer is poorly characterized but impacts quality of life. METHODS: All Ontario, Canada AYA aged 15-29 years at diagnosis between 2010 and 2018 were linked to population-based healthcare databases, including to Edmonton Symptom Assessment System-revised (ESAS) scores, an 11-point scale routinely obtained at the time of cancer-related outpatient visits and collected provincially. Multistate models estimated mean duration of symptom severity states [none (0) vs. mild (1 vs. 2 vs. 3) vs. moderate (4-6) vs. severe (7-10)], trajectories, and subsequent mortality risk. Variables associated with severe symptoms were also determined. RESULTS: In total, 4296 AYA with ≥1 ESAS score within a year of diagnosis were included (median age 25 years). Prevalent moderate/severe symptoms included fatigue (59% of AYA) and anxiety (44%). Across symptom type, AYA reporting moderate symptoms were likelier to subsequently experience improvement versus worsening. Risk of death within 6 months increased with increasing symptom burden and was highest in AYA with severe dyspnea (9.0%), pain (8.0%), or drowsiness (7.5%). AYA in the poorest urban neighborhoods were more likely to experience severe symptoms than in the wealthiest areas, with twice the odds of reporting severe depression [adjusted odds ratio (OR) 1.95, 95th confidence interval (95% CI) 1.37-2.78], pain (OR: 1.94, 95% CI: 1.39-2.70), and dyspnea (OR: 1.96, 95% CI: 1.27-3.02). CONCLUSIONS: AYA with cancer experience substantial symptom burden. Risk of death increased with symptom severity. Interventions targeting cancer fatigue and anxiety, and targeting AYA in lower-income neighborhoods, are likely to improve quality of life in this population.

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.

A comparison of the sociodemographic, medical, and psychosocial characteristics of adolescents and young adults diagnosed with cancer recruited in-person and online: A Canadian cross-sectional survey.

Introduction: Adolescents and young adults diagnosed with cancer (AYAs) are under-represented in research. The Internet and social media could increase the reach of recruitment efforts but may impact sample characteristics. This study evaluated the characteristics of AYAs recruited in-person at an urban hospital versus the Internet in terms of their sociodemographic and medical characteristics, and psychosocial wellbeing, and offers recommendation for increasing the inclusivity and representativeness of research samples. Methods: Participant data from a cross-sectional survey of AYAs in Canada were evaluated. In-person hospital recruitment used a registry to identify patients attending ambulatory clinics. Internet recruitment included notices on hospital, team members', and community partners' social media channels, and email newsletters. Independent sample t-tests and Chi-squared tests were used to identify differences in participant sociodemographic, medical, and psychosocial characteristics based on recruitment source. Results: Of 436 participants, 217 (49.8%) were recruited in-person and 219 (50.2%) online. Online participants were more likely: to be white (p < .001), women (p < .001), and Canadian-born (p < .001); to speak English at home (p < .001), live alone (p = .001) and live in rural settings (p = .014); and to be farther from diagnosis (p = .023), diagnosed with breast cancer (p < .001), and cancer free (p < .001) compared to the hospital sample. Online participants also reported higher anxiety, depression, and loneliness (p < .001), and lower social support (p < .001), self-efficacy for coping with cancer (p < .001), and life satisfaction (p = .006). Conclusions: Online recruitment yielded a more geographically diverse but less sociodemographically diverse sample of AYAs who were farther from diagnosis and had poorer psychosocial wellbeing than in-person recruitment at an urban hospital. Future research efforts should consider partnering with under-represented communities and using targeted and stratified online and in-person recruitment strategies to achieve an inclusive and representative sample of AYAs.

Peer Support Needs and Preferences for Digital Peer Navigation among Adolescent and Young Adults with Cancer: A Canadian Cross-Sectional Survey.

Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15-39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.

Long-term neurocognitive outcomes in young adult survivors of childhood acute lymphoblastic leukemia.

Five-year survival rates of childhood acute lymphoblastic leukemia (ALL) exceed 80% due to central nervous system-directed treatment including cranial radiation (CRT) and chemotherapy. However, these treatments are associated with neurocognitive compromise, the extent of which is correlated with higher dose and younger age at treatment. The aims of this study were to explore long-term neurocognitive outcomes in adult survivors of childhood ALL, and to identify measures sensitive to neurotoxicity in long-term survivors. We examined 24 adults who received 18 Gy CRT and chemotherapy for treatment of ALL between ages 2 and 15 years (median, 5.5). Time since diagnosis ranged from 6 to 26 years (median, 16.6). Younger age at diagnosis and longer time since diagnosis were associated with lower scores on a computerized battery that requires speed and accuracy across a number of domains (MicroCog), and other standardized neurocognitive tests. When compared with population norms, MicroCog indices were below average in survivors diagnosed with ALL before age 5, but only the reasoning/calculation index was below average in survivors diagnosed with ALL after age 5. In contrast, intelligence quotient (IQ) scores were average. In addition to confirming earlier studies showing that younger children are more vulnerable to treatment-related neurotoxicity, here we show that deficits exist many years post treatment even with a relatively lower dose of CRT, and that these deficits are especially evident on tasks involving rapid processing of information.

Clinical and Demographic Factors Associated with Distress in Adolescent and Young Adults with Cancer.

Purpose: Distress in cancer is defined as multifactorial unpleasant experience of an emotional, psychological, social, or spiritual nature that interferes with ones' ability to cope with cancer and its symptoms and treatment. The aim of this study was to determine clinical and demographic factors associated with the presence of distress in adolescent and young adults (AYAs) with cancer. Methods: Data were collected as part of a field-test study conducted between August 2016 and November 2017 in Canada (Toronto, Edmonton, and Vancouver) to determine the reliability and validity of CDS-AYA (Cancer Distress Scales for Adolescent and Young Adults). The CDS-AYA consist of five independently functioning scales including impact of cancer, physical, emotional, cognitive, and cancer worry. Multivariate logistic regression analyses, using established CDS-AYA cut points, were performed to identify clinical and demographic factors associated with the presence of distress in AYAs of ages 15-39 years with cancer. Results: Across all scales, increased distress was associated with female gender (p < 0.05), on-treatment status (p < 0.05), and reported poor overall health (p < 0.001). For the emotional scale, distress was also associated with being of age 15-19 years (p = 0.01). The greatest effect size for all scales was associated with treatment status [exp(ß) = 1.78-4.6], except for the cognitive scale where gender had a slightly greater effect size. Conclusion: Factors associated with distress in AYA patients with cancer were similar across five CDS-AYA scales. Although it is important to screen all patients for distress, our findings reveal that patients who are female, on treatment, or who report having poorer health may be at a greater risk.

Biopsychosocial Factors Associated with Supportive Care Needs in Canadian Adolescent and Young Adult Cancer Survivors.

Adolescents and young adults (AYAs) represent an overlooked population in cancer survivorship care. Identifying the needs of AYAs can guide the development of tailored programs for this population. We conducted a cross-sectional descriptive analysis to identify biopsychosocial factors associated with AYA post-treatment supportive care needs and unmet needs using data obtained from the Experiences of Cancer Patients in Transitions Study of the Canadian Partnership Against Cancer, in collaboration with cancer agencies in the 10 Canadian provinces. The analysis focused on data from n = 530 AYAs between the ages of 18 and 34 who had undergone treatment within the past 5 years. Respondents reported a median of two moderate to big (MTB) physical needs (out of 9) and one unmet physical need, two MTB emotional needs (out of 6) with two unmet MTB emotional needs, and one (out of 5) practical need reported and one unmet MTB practical need. We found some common associations across supportive care domains. Income (lower) and more complex treatment were associated with high needs and unmet needs across the three domains. Respondents with a family doctor who was "very involved" in their cancer care had a lower number of unmet physical and emotional needs. Identifying those at risk of supportive care needs and developing tailored pathways in which they are proactively connected with tailored and appropriate resources and programs may help to reduce the number of unmet needs and improve cancer survivors' quality of life.

Comparison of Patient-Reported Outcome Measures for Use as Performance Metrics in Adolescent and Young Adult Psychosocial Cancer Care.

Purpose: To compare the Cancer Distress Scales for Adolescents and Young Adults (CDS-AYA)-Emotional and Impact scales-with the Edmonton Symptom Assessment Scale-revised (ESAS-r), Hospital Anxiety and Depression Scale (HADS), and the National Comprehensive Cancer Network Distress Thermometer (NCCN-DT) for use as a patient-reported outcome-performance measure (PRO-PM) for AYA cancer care. Methods: Data were collected as part of the field test study of CDS-AYA. Assessment criteria were based on a National Quality Forum report. Internal and test-retest (TRT) reliability was assessed using Cronbach's alpha and intraclass correlation coefficients, respectively. A content sort of items in each scale was performed to determine AYA-specific content. Two predefined hypotheses for gender and treatment status were assessed using t-test. Results: Four hundred twenty-one participants were included in the analyses. Cronbach's alpha ranged from 0.79 to 0.94, with only the two scales of CDS-AYA achieving >0.90. TRT reliability for HADS was considered excellent (>0.90), with remaining scales having moderate to good reliability (>0.70). Only the Impact scale of CDS-AYA had items that addressed the specific concerns of AYAs (e.g., romantic relationships). In all scales, active therapy patients had higher levels of distress than patients not receiving treatment (p ≤ 0.05). Distress was greater for females than males for all scales, but nonsignificant for both the ESAS-r (p = 0.07) and the HADS depression subscale (p = 0.13). The proportion of AYAs screening positive for distress varied by instrument. Conclusion: The Impact scale of CDS-AYA met the most criteria for selection of a PROM for use in performance measurement for the AYA cancer population.