Findings emphasize the importance of early psychosocial intervention for distress in AYAs as well as the need to manage treatment-related symptoms and facilitate AYAs' involvement in work or school to the extent possible. Continued research is needed to understand how distress relates to quality of life, functional outcomes, treatment, and symptom burden throughout the continuum of care.
BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. METHODS: Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/ school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. RESULTS: AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/ nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. CONCLUSIONS: Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.
Substantial proportions of AYAs are not utilizing psychosocial support services. Findings suggest the importance of identifying psychologically distressed AYAs and addressing their needs for mental health counseling throughout a continuum of care.
Purpose To examine changes in health-related quality of life (HRQoL) and its predictors during the first 2 years after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Patients and Methods A multicenter, longitudinal, prospective study was conducted among a diverse sample of AYA patients with cancer ages 15 to 39 years. One hundred seventy-six patients (75% response) completed a self-report measure of HRQoL (Short Form-36 [SF-36]) within the first 4 months after diagnosis and again 12 and 24 months later. Linear mixed models with random intercepts and slopes estimated changes in QoL. Results Recently diagnosed AYA patients with cancer had significantly worse physical component scale (PCS) scores (38.7 v 52.8; P < .001) and mental component scale (MCS) scores (42.9 v 48.9; P < .001) when compared with population norms. Significant improvements in PCS and MCS scores from baseline to 24-month follow-up were observed; however, these increases were largest during the first 12 months. At the 24-month follow-up, AYA patients still had significantly lower PCS scores (48.0 v 52.8; P < .001) and MCS scores (45.8 v 48.9; P = .002) when compared with population norms. Multivariable analyses revealed that improvements in PCS and MCS scores were primarily a function of being off-treatment and being involved in school or work. PCS but not MCS scores were worse for AYA patients diagnosed with cancers with poorer prognoses. Conclusion Although HRQoL improved over time, it was still compromised 24 months after primary diagnosis. Given relatively little observed improvement in HRQoL during the 12- to 24-month period after diagnosis, AYA patients may benefit from supportive care interventions administered during the second year after diagnosis.
Post-traumatic stress symptoms were observed as early as 6 months following diagnosis and remained stable at 12-month follow-up. The development of early interventions for reducing distress among AYA patients in treatment is recommended.
Purpose
The Adolescent and Young Adult (AYA) community is an underserved population due to unique quality of life and late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients’ medical records at four cancer centers.
Methods
All centers reviewed randomized medical records within the four most common disease sites among AYAs (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible patient records included: 1) diagnosed in 2011 with no prior gonadotoxic therapy; 2) ages 18–45; 3) no multiple primary cancers; and 4) not second opinions. Quality Oncology Practice Initiative (QOPI) methods were used to evaluate documentation of: a) discussion of risk of infertility; b) discussion of FP options; and c) referral to a fertility specialist.
Results
A total of 231 records were analyzed. Overall, 61 (26%) of records documented item a; 56 (24%) documented item b; and 31 (13%) documented item c. Female (p = 0.030; p = 0.004) and breast cancer (p = 0.021; p < 0.001) records were less likely to contain evidence of a and b.
Conclusion
The overall rate of documentation is low and results show disparities among specific groups. While greater numbers of discussions may be occurring, there is need to create interventions to improve documentation. Rates may improve with increased provider education and other intervention efforts.
Objective
Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients.
Method
165 AYA patients aged 14–39 years at diagnosis completed standardized measures of posttraumatic stress and posttraumatic growth at 12 months following diagnosis. Locally weighted scatterplot smoothing and regression were used to examine linear and curvilinear relationship between posttraumatic stress and posttraumatic growth.
Results
No significant relationships between overall posttraumatic stress severity and posttraumatic growth were observed at 12-month follow-up. However, curvilinear relationships between re-experiencing (a posttraumatic stress symptom) and two of five posttraumatic growth indicators (New possibilities, Personal strengths) were observed.
Conclusion
Findings suggest that re-experiencing is associated with some aspects of posttraumatic growth but not others. Although re-experiencing is considered a symptom of post-traumatic stress disorder, it also may represent a cognitive process necessary to achieve personal growth for AYAs. Findings call into question the supposed psychopathological nature of re-experiencing and suggest that re-experiencing, as a cognitive process, may be psychologically adaptive. Opportunities to engage family, friends, cancer survivors, or health care professionals in frank discussions about fears, worries, or concerns may help AYAs re-experiencing cancer in a way that enhances their understanding of what happened to them and contributes to positive adaptation to life after cancer.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.