Consistent with prior research on psychological adjustment in pediatric cancer survivors,1,2
AYA pediatric cancer survivors attending a cancer survivorship clinic did not differ from AYA patients in a primary care setting without a history of serious illness on psychological distress or HRQOL. Despite the potential for increased anxiety and/or decreased HRQOL at the time of a medical appointment, the scores for both groups of patients were within normal limits. The consistency of this finding across differing populations and methodologies reinforces the finding of relatively good psychological health and resilience of pediatric cancer survivors. It also underscores the importance of moving the field beyond simple group differences (ie, survivors, controls) in psychological adjustment to identify potential risk factors and approaches that providers of survivorship care could integrate in clinically.
One such approach is health competence beliefs; AYA survivors seeking health care have less competent beliefs than AYA peers in a medical setting. In other words, there are meaningful differences among survivors and controls on how they perceive their health and health care. Such beliefs offer an alternative means of understanding survivors' experiences and reactions that could be explored in terms of their relationship to health behaviors,28
and as potential modifiable targets of intervention. For example, the belief “My future health is very uncertain” may relate to distress (ie, anxiety, depression) and certain health behaviors (eg, hypervigilance about health or avoidance of health care). Providers can explore such malleable beliefs in a nonthreatening way. Using approaches consistent with cognitive behavioral therapy, maladaptive beliefs leading to distress and poor disease self-management can be modified.29
Assessing health competence beliefs in survivorship care settings and developing brief interventions to help AYA survivors and their families develop and use more adaptive beliefs are next steps of this work.
Specifically, AYA cancer survivors had significantly more positive beliefs about satisfaction with the health care team in general (eg, My doctors understand my medical history) than controls. Acknowledging that this sample is biased toward cancer survivors who are attending a survivorship clinic who may be more adherent to treatment recommendations in general and may have particularly complex medical issues,30
the data nonetheless address the importance of engaging survivors in long-term care and working with them to develop the skills necessary to navigate the health care system over time. AYA cancer survivors' beliefs reflect their perceived bad luck and uncertainty about their health, including concerns about future medical problems (ie, health perceptions) and beliefs (ie, cognitive competence) that they have cognitive challenges that could impact their function (eg, memory, attention, intellect). They similarly endorse beliefs that underscore their reliance on their families (eg, spending most free time with their parents/siblings) at higher levels than controls.
Adolescence is a time of transition and vulnerability. Long-term survivors diagnosed and treated during adolescence had higher levels of post-traumatic stress, including arousal and re-experiencing, and lower HRQOL than those diagnosed at younger ages. This finding is novel, complex, and potentially discrepant from prior research,4
necessitating further attention to this age group. In this study, patients diagnosed during adolescence also reported beliefs that are less positive, particularly in relation to their health perceptions and cognitive capabilities. These data support the vulnerability of youth diagnosed during adolescence and the critical need for focused attention to their longer term developmental course as they grow into young adulthood.
Understanding how the intensity of treatment and ongoing health concerns may influence adjustment remains underinvestigated. Although objective treatment-related variables are often not associated with psychological outcomes,4
these data support the risk of both psychological difficulties and fewer adaptive beliefs among those patients with the most intensive cancer treatments. It may be that, at the highest levels of intensity, there is less variability in how both patients and providers view this construct as well as the impact on their lives. The data on number of health problems highlights the potential discrepancy between the number of problems identified by providers versus those identified by the patients, in terms of psychological outcomes and beliefs. Provider reports of the number of current health problems were associated with patients' health beliefs, but not other measures of psychological outcome. This suggests that more health problems may have greater impact on health beliefs, perhaps reflecting a realistic acceptance of current health problems in this population. In contrast, survivors' report of the number of their health problems was more consistently and strongly associated with overall psychological well-being. This may reflect a more global appraisal of how poorer perceived health may impact well-being.
There are both strengths and limitations in this research. The AYA cancer survivors are from one data collection, one institution, and may not reflect patients seen in other settings. While a population-based methodology provides advantages in identifying broad patterns of association among variables, our more in-depth methodology provides information useful to clinicians in their interactions with patients. The sample is mostly non-Hispanic white. While this is consistent with the general childhood cancer survivorship population and the Childhood Cancer Survivor Study,31
it remains a limitation in the broader survivorship field, particularly because beliefs may be influenced by culture. Finally, the control group is an innovative and important one. We recognize that AYAs seeking health care may be more worried or preoccupied about their health than the general population. This could mask some differences between controls and survivors. On balance, however, this control group provides a rather unique, clinically relevant comparison and contrast for survivors in clinical care. By recruiting age-matched peers, our methodology has a significant advantage over studies that use sibling controls. Siblings cannot be considered independent observations; siblings are affected by pediatric cancer and demonstrate a range of psychosocial outcomes linked to the serious illness in the family.32
In conclusion, the results of this study support the psychological well-being of AYA cancer survivors in the context of a survivorship clinic visit while also highlighting the importance of understanding beliefs specific to health and well-being in this population. Higher-risk groups within this population include those diagnosed during adolescence and those with the highest levels of treatment intensity. Thus, while most survivors are psychologically resilient, disease-related variables readily known to care providers can help to identify the significant minority of those at risk for difficulties with psychosocial functioning and less competent health beliefs. Identifying and providing interventions to this minority group of AYA patients is critical for facilitating optimal transition to adulthood and adult-oriented care.