In this follow-up study, the largest longitudinal study of PTSD symptomatology among adult cancer survivors reported in the literature to date, we found that although 51% of survivors did not have PTSD symptoms at either time point, and 12% had PTSD symptoms that resolved over 5 years, more than one third of the sample reported persistent (18%) or worsening (19%) PTSD symptoms over a 5-year period. These findings of persistent PTSD symptomatology among NHL survivors are consistent with those found among disaster victims22,23
and victims of violence.24–26
Importantly, several characteristics were identified that could help screen and target treatments for those survivors who are at risk for prolonged PTSD symptoms and inform opportunities to reduce the impact of potentially PTSD-inducing cancer care scenarios.
Although our hypotheses were partially supported (eg, finding of persisting and worsening of symptoms), we found that the explanation for follow-up PTSD symptoms was not limited to recurrence status. Specifically, individuals with an initial status of lower income, aggressive lymphoma, stage ≥ II at diagnosis, having had chemotherapy, and higher IOC Negative and Positive Impact Summary scores were more likely to have more PTSD symptoms 5 years later. Importantly, income and Negative Impacts were most influential in adjusted analyses (ie, more strongly predictive of PTSD symptoms) than the clinical aspects of the disease and treatment.
How might these findings be used? Two strong messages emerge: (1) the upfront cancer treatment experience directly influences downstream patient experience and risk of PTSD, and (2) specific individuals are at increased risk. Therefore, whole-person interventions targeted at improving the experience of patients with NHL, including mitigating PTSD, could seek to do either or both of the following: (1) improve those elements of the treatment experience that lead to negative impressions (eg, reducing life interference by social work intervention, improving a sense of body image by physical therapy, relieving worry by cognitive behavioral therapy), and (2) recognize that NHL survivors from poor socioeconomic circumstances are at the highest risk and triage efficiently to social support services. In addition, clinical care should include a formal assessment of symptoms that includes domains similar to those on the IOC. However, additional testing of the IOC in other samples is needed to support its use earlier in the cancer trajectory.
Although there are no known psychosocial interventions developed specifically for NHL survivors, evidence-based offerings could be tailored to meet the unique needs of this population. The alternating symptom-free and symptom exacerbation characteristics of NHL coupled with the difficulty in distinguishing between signs of aging and long-term symptoms from treatment may exacerbate worry or fear of recurrence in survivors. The Managing Uncertainty Day-to-Day intervention27
is designed to help older breast cancer survivors manage fears of recurrence and improve coping skills by delivering cognitive strategies via audiotape. In addition, a supportive-expressive group therapy intervention has been shown to significantly reduce trauma symptoms and mood disturbance in women with advanced breast cancer.28
Thus, treatments exist that might benefit PTSD outcomes of NHL survivors, especially if they are targeted to those of greatest presumed risk.
The findings in this study are especially beneficial, given the large sample size, excellent response rate, use of standardized measures, and longitudinal design. Although our study included only two survey administrations, it is a starting point of depicting the experiences of patients with cancer. Study limitations include the representation of a predominantly married and white sample and potential nonresponse bias. However, our racial profile closely mirrors that of the national population of NHL survivors, thereby strengthening the generalizability of our findings. There is also evidence that individuals who chose not to participate at follow-up were not doing well at the initial survey; therefore, the level of PTSD symptomatology may be underestimated. Second, the 28-page survey lacked measures assessing other psychological problems and life stressors in an effort to minimize the burden on respondents. Third, potential biases inherent in the use of self-report measures were minimized by using standardized instruments. And last, there is a potential overlap of PTSD symptoms with those related to cancer and treatment. However, only a small proportion (9.4%) of the sample reported active NHL or receiving treatment at follow-up. Furthermore, follow-up disease and treatment status were not predictive of PTSD symptoms in the linear regression analysis.
In conclusion, this article provides new information about the trajectory of PTSD symptoms in long-term NHL survivors. The initial cancer experience (and the need to improve it) becomes paramount in improving downstream outcomes, such as PTSD symptomatology. In addition, the identification of several patient characteristics related to PTSD risk could inform the screening process early in the survivorship trajectory. Furthermore, the strong predictive role of the IOC is consistent with previous cross-sectional studies and suggests that negative perceptions related to the cancer experience could be targeted in interventions as a means to minimize PTSD symptomatology. Future work should focus on the identification of patients at risk by using predictive models applied at the point of care and development of low-cost interventions that are delivered to those exhibiting clinically significant PTSD symptomatology during treatment to improve the long-term patient experience.