What determines the well-being of adolescents and young adults with cancer? a meaning perspective

The 2006 landmark report by the Adolescent and Young Adult Oncology Progress Review Group argued that adolescent and young adult (AYA) survivors – those diagnosed with cancer between ages 15 and 39 – had been largely overlooked, falling in the cracks between pediatric survivors and mid-to-late life adult survivors [1]. The release of this report spurred research focused on AYA survivorship experiences. Yet most of what we have learned is simply descriptive, highlighting AYA survivors’ many unmet needs and the negative impacts of cancer on their future lives. Surprisingly, little research has examined how AYA survivors’ experiences with cancer affect their wellbeing (i.e. their broadly-defined psychological and physical health-related quality of life(HRQOL)). We assert that a meaning-centered approach is helpful in making sense of the disparate literature regarding aspects of AYA’s cancer experiences relevant to their well-being. We conclude with promising avenues for future research and intervention. AYA survivors tend to have lower levels of well-being and often continue to experience cancer-related distress. A review of 35 quantitative and qualitative studies of HRQOL found that AYA survivors reported lower HRQOL compared with healthy peers and with older cancer survivors [2]. For example, one study found higher levels of distress in AYA survivors compared to a matched healthy sample at one-year post-diagnosis [3], and a large study of multiple cohorts similarly found that AYA survivors reported poorer physical and emotional wellbeing than matched peers [4]. In addition, AYA survivors often report high levels of posttraumatic stress symptoms (i.e. reexperiencing, avoidance, and hyperarousal) [5]. Furthermore, AYA survivors, like other cancer survivors, have poorer health behaviors than does the general population. For example, one recent large-scale survey comparing AYA cancer survivors with the general population in the USA showed that survivors were more likely to be current smokers, obese, and lacking in physical activity than were respondents without a cancer history [6]. This is particularly important given that AYA survivors’ positive health behaviors and HRQOL are positively related [7]. These lower levels of well-being and heightened levels of distress are quite concerning and suggest a need for interventions specifically focused on the unique concerns of AYA survivors. However, it is important to note that, within each study, individuals vary greatly in how well they fare, suggesting that some AYA survivors are relatively psychologically resilient while others are less so. One central determinant of this resilience, demonstrated across many studies, is meaning, particularly the meaning AYA survivors make of their cancer experience and the meaning they ascribe to the cancer’s implications for achieving their future goals. A cancer diagnosis is highly disruptive to an individual’s global sense of meaning, and AYA survivors who report more disruption of their life goals from cancer, especially their educational and work goals, report poorer mental HRQOL [7] and more posttraumatic distress [5]. In addition, in one large study, nearly half of AYA survivors perceived that their sense of control over their lives had been greatly diminished by their cancer experience [8]. Yet, as is true for the general population, AYA survivors’ sense of meaning and purpose is strongly associated with higher HRQOL and lower distress [7]. Very little research has been conducted on spirituality as a determinant of well-being, but many AYA survivors report that their spirituality was positively impacted by having cancer [8]. One sample of AYA survivors reported fairly low spiritual wellbeing (comprising a sense of meaning, peace, and faith), and spiritual well-being predicted psychological adjustment a year later. Further, those struggling with spiritual issues experienced poorer psychological adjustment a year later [9]. Cancer leaves tremendous uncertainty in its wake regarding survivors’ objective health risks and vulnerabilities, and AYA survivors who worry about their health and recurrence of cancer report lower HRQOL and higher distress [7,10]. In a large cohort of AYA survivors, nearly a third reported that having cancer reduced their confidence in their ability to take care of their own health [8]. These beliefs in one’s ability to efficaciously manage one’s health have been shown to mitigate the adverse effects of AYA survivors’ physical health problems on their posttraumatic stress symptoms [11]. Given their formative developmental phase, focusing on building their adult personal and professional lives, the way in which AYA survivors understand the meaning of the cancer for their future personal, social, and work lives is critically important to their longer-term well-being. Researchers have studied these meanings in several ways. In one approach, AYA survivors are asked to report the negative impact of their cancer on specific domains of their future lives, and examine