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.

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.

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.

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.

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.

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.

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.

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.

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.

Young Adult Experience in an Outpatient Interdisciplinary Palliative Care Cancer Clinic.

PURPOSE: Young adults (YAs; defined as 18-39 years of age) with advanced cancer are a group for whom standardized age-appropriate palliative care has not been established. The purpose of this study was to explore the YA experience and perceptions of palliative care in an outpatient interdisciplinary palliative care clinic for this population. PATIENTS AND METHODS: Using an interpretive descriptive design, semistructured interviews were conducted with 12 YAs with advanced cancer who were being seen jointly by a palliative care physician and psychiatrist in an ambulatory palliative care clinic. Interviews explored participants' understanding and experiences of receiving palliative care. Six family members were also interviewed to build on the YA experience. Data collection and analysis occurred concurrently, drawing on the constructivist grounded theory method to analyze the data. RESULTS: Participants described being referred to and seen in the interdisciplinary palliative care clinic as a conflicting and at times difficult experience because of the feeling of being categorized as palliative as YAs. Even so, there were key aspects associated with the specific palliative care approach that allowed YAs to cope with this new label, leading to a beneficial experience, specifically: provided YAs with time and space to explore the experience of having cancer at a younger age, created repeat opportunities to talk openly with people who "got it," and highlighted the importance of including family support in the care of YAs. CONCLUSION: YAs who were referred to the interdisciplinary palliative care clinic struggled with the category of palliative care but also found the care they received beneficial. Findings provide an approach to palliative care tailored to YAs with advanced cancer.

The Needs and Experiences of Post-Treatment Adolescent and Young Adult Cancer Survivors.

(1) Background: Adolescents and young adults (AYAs) who have been diagnosed with and treated for cancer have unique healthcare needs, but more research is needed to inform developmentally targeted cancer care for this population. The purpose of the current analyses was to describe the physical and psychosocial concerns and experiences of AYA cancer survivors during the post-treatment phase. (2) Methods: A national survey was conducted by the Canadian Partnership Against Cancer to evaluate the experiences and unmet needs of cancer survivors (≥18 years) within the first 5 years following cancer treatment. The current analyses were conducted on the AYA survivor population (18-34 years). (3) Results: A total of 575 surveys were completed by AYAs. Of these, 61% were female, 51% were married/partnered, and 52% were 1-3 years post treatment. Approximately three-quarters report their physical or emotional health as good/very good. Overall, 88% reported at least one physical concern [mean of 3.98+2.11 physical concerns (range 0-9)], 90% reported at least one emotional concern [mean of 3.77+1.75 emotional concern (range 0-6)], and 79% reported at least one practical challenge [mean of 2.39+1.28 practical concerns (range 0-5)]. The most common concerns were anxiety/worry about cancer returning (83%), fatigue/tiredness (78%), and depression/loss of interest in daily activities (66%). On average, 43% of those reporting a concern sought help. Common reasons for not seeking help included not wanting to ask, being told that it was normal to feel the way they did, or embarrassment. Of those who did seek help, 37% encountered difficulty obtaining assistance. (4) Conclusions: These results suggest that post-treatment AYA cancer survivors have a high rate and number of physical, psychosocial, and practical concerns and are often not seeking or receiving help to address these. Proactive approaches to characterizing and eliminating barriers to obtaining appropriate care are needed.

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.

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.

"It's More Difficult ": Clinicians' Experience Providing Palliative Care to Adolescents and Young Adults Diagnosed With Advanced Cancer.

PURPOSE: Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS: There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION: Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.

Development and Psychometric Evaluation of the Cancer Distress Scales for Adolescent and Young Adults.

Purpose: The use of valid and reliable screening tools to measure distress may help to identify adolescent and young adults (AYA) with cancer who need additional support. Our study describes a two-phase approach to adapt the Australian AYA oncology and survivorship distress screening tools for use in Canada. Methods: Phase 1 involved refining the Australian AYA oncology and survivorship screening tools using cognitive interviews with AYA with cancer and feedback from experts. In phase 2, a field-test study was performed, and Rasch Measurement Theory (RMT) analysis was used for item reduction and to examine reliability and validity. Results: Cognitive interviews with 45 AYA with cancer and feedback from 25 experts resulted in a field-test version of the Cancer Distress Scales for AYA (CDS-AYA) consisting of 91 items that measure 9 constructs. The field-test sample included 515 participants. RMT analysis identified five scales (impact of cancer, physical, emotional, cancer worry, and cognitive) with ordered thresholds, good item fit (-3.70 to 2.82), and acceptable reliability (0.85-0.94). Reliability for the remaining four scales (employment, education, practical, and social) was low, and the scales were retained as checklists, with the exception of the social scale that was dropped. Conclusion: The final item-reduced CDS-AYA consist of 48 items in 5 scales, with 2 stand-alone items in the physical and emotional scales and 23 items in 3 checklists. The CDS-AYA can be used in research and in clinical practice to measure distress in AYA with cancer.

Distress Screening in Adolescents and Young Adults with Cancer: Development of Cut-Points for the Cancer Distress Scales-Adolescent and Young Adults.

Purpose: Distress is an important issue facing adolescent and young adults (AYA) with cancer due to their stage of development. Metrics are necessary to help improve psychosocial outcomes in this population. This study determined cut-points for the newly developed Cancer Distress Scales (CDS)-AYA. Methods: The CDS-AYA is a new patient-reported outcomes measure that comprises five independently functioning scales, including the following: Impact of Cancer (12 items), Physical (12 items), Emotional (11 items), Cognitive (8 items), and Cancer Worry (5 items). Canadian AYA with cancer 15-39 years of age completed the CDS-AYA and the Hospital Anxiety and Depression Scale (HADS), as part of the CDS-AYA field test. Only patients who had completed responses to the CDS-AYA and HADS were included in these analyses. Receiver operating characteristic (ROC) curve analysis was used to generate cut-points for five CDS-AYA scales based on distress defined by the HADS anxiety and HADS depression scale. Results: In total 453 of 515 respondents had complete data for the CDS-AYA and HADS were included in analyses. Area under the curve (AUC) in the ROC analyses ranged from 0.75 to 0.85. The CDS-AYA Emotional scale had the greatest AUC. The cutoff value for the Emotional scale was 27 based on the HADS anxiety scores (78.3% and 78.9%). Conclusions: The five CDS-AYA scales had fair to good accuracy when classifying the none/low and moderate/severe distress categories based on HADS anxiety and depression scales. For screening purposes, it is recommended that the Emotional scale or Impact of Cancer scale be utilized.

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.

Examining factors associated with self-management skills in teenage survivors of cancer.

BACKGROUND: Monitoring long-term health of teenage cancer survivors is dependent on successful transition from pediatric to adult long-term follow-up (LTFU) care. This study identified factors associated with self-management skills (SMSs), an important correlate of successful transition. METHODS: Data were collected from a cross-sectional survey conducted at three Canadian hospitals between July 2011 and January 2012. The sample included 184 childhood cancer survivors aged between 15 and 19 years. Independent factors included demographic- and illness-related factors. The outcome of interest was SMSs, measured using the SMSs scale, with higher scores indicating more SMSs. RESULTS: More SMSs were associated positively with older age (ß = 1.2, 95 % confidence interval (CI) = 0.1 to 2.4), being female (ß = 4.6, 95 % CI = 1.9 to 7.4), and having a non-married parent (ß = 5.2, 95 % CI = 0.04 to 10.4). There was a negative association between SMSs and having had a central nervous system tumor (CNS) compared to having leukemia (ß = -7.9, 95 % CI = -13.5 to -2.2). CONCLUSIONS: Younger, male, and CNS tumor survivors lack SMSs. Future research is needed to explore the extent and nature of associations between SMSs and parents' marital status. IMPLICATIONS FOR CANCER SURVIVORS: Younger, male, and CNS tumor survivors should be targeted for interventions in order to ensure that adequate SMSs are attained before completion of transition.

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.