Discussion
Limited research has examined early sociodemographic and family factors near diagnosis that predict long-term QOL among childhood cancer survivors. The goal of this study was to examine the relative impact of sociodemographic factors using a cumulative risk score, mother’s stress, survivor’s cancer-specific stress, and mother-adolescent communication on later QOL of survivors. We expected that a higher cumulative sociodemographic score (i.e., higher risk) would lead to lower levels of QOL in survivors. Survivor QOL was, on average, in the normative range at 5-year follow-up. Contrary to our hypothesis, the sociodemographic score was not a significant predictor of QOL when other factors like cancer-related stress and communication, were considered. While these results did not align with our expectations for the sociodemographic score, they demonstrate the lasting importance of more proximal family factors in relation to later QOL in long-term survivors.
In both the mother-reported model and the survivor-reported model, earlier exposure to stress consistently predicted long-term QOL, whether it was survivor’s cancer-specific stress or mother’s general stress. The mother-reported model explained almost 60% of the variance in survivor QOL, with survivor’s cancer-specific stress and mother’s general stress contributing 38% of explained variance in the model. These results support our hypothesis about stress and are consistent with literature finding that stress and negative emotions in response to a chronic illness, such as cancer, can affect QOL [26]. For survivor-report of QOL, the addition of survivor’s cancer-specific stress and mother’s general stress contributed 13% of explained variance in QOL, with the overall model explaining 24% of the variance in long-term QOL. However, only cancer-specific stress was a significant predictor. Thus, survivors’ QOL may be affected more by their own stress specifically related to their diagnosis, than their mother’s general stress. To our knowledge, this is the first study that has examined the longitudinal impact of general and cancer-related stress on survivor-reported QOL in a pediatric cancer sample.
In both models, higher quality of mother-adolescent communication was a significant predictor of better QOL, particularly with respect to child-report of QOL. These results support our hypothesis that communication has a significant impact on survivors’ QOL. Previous research in pediatric populations has found that a high quality of family communication enhanced adolescents’ life satisfaction [27]. Other studies have also identified family communication as a correlate of important developmental, psychosocial and health outcomes [14,28,29].
While research has largely focused on medical predictors of QOL in pediatric cancer, few studies have examined the longitudinal impact of family factors near diagnosis, such as stress and communication, on later QOL. The present research shows that these factors should not be overlooked. Each of these factors were both associated with QOL and were significant predictors over time. Although cumulative sociodemographic factors did not predict long-term QOL in our final models, they were significantly correlated with mother-reported QOL. They were also associated with early outcomes, which is similar to previous findings [2], and were significantly correlated with mother’s general stress, adolescent’s cancer-specific stress, and mother-adolescent communication near diagnosis. Therefore, future research should continue to examine the role of sociodemographic factors and key outcomes over time.
Our study was limited by several factors. First, our sample was primarily White and non-Hispanic. Similar research should be conducted with a more diverse sample to examine if associations may vary as a function of race or ethnicity in regard to sociodemographic factors and QOL. We also examined only survivor-report and mother-report of family factors. Future research should solicit perspectives from fathers in addition to mothers and survivors to examine data from both parents. Importantly, the mother-proxy model may have been affected by common method variance, and multiple informants are necessary to test more robust models. Lastly our sample was comprised of mothers who were largely partnered, had few children per household, and had an education of at least a high school diploma, resulting in a relatively low-risk sample. This could have explained why the cumulative sociodemographic score was no longer a factor when stress and communication were examined concurrently. Future research should continue to identify other social and family factors early in the cancer trajectory that may influence the long-term QOL of pediatric cancer survivors.
Our study also had several key strengths. First, the sample was recruited soon after a child was diagnosed with cancer or had relapsed and was followed longitudinally over five years. This allowed us to identify early predictors of later outcomes in long-term survivorship. Second, the sample was inclusive in terms of different diagnoses, allowing us to examine QOL in children affected by pediatric cancer more broadly, rather than focusing on one type of diagnosis. This research is unique in its family-centered approach assessing both general stress and cancer-specific stress, as well as multiple viewpoints (parent self-report, parent proxy-report of survivor, survivor self-report). Limited research has examined the contributions of sociodemographic and family factors that predict QOL in youth affected by pediatric cancer.
This information can help inform family-centered care to improve long-term QOL in pediatric cancer survivors. Despite the effects of cumulative sociodemographic risk, family stress and communication may offer potential points of intervention to improve QOL of pediatric cancer survivors over time. Clinicians should assess family and cancer-related stress, as well as facilitate open and honest communication early in treatment to reduce risks. Previous psychosocial interventions have shown promise in the areas of physical, psychological, and social-relational aspects of quality of life [30, 31]. While additional research is needed, healthcare professionals should encourage stress management and strong mother–child communication to enhance survivors’ long-term QOL. Such interventions may be helpful, irrespective of known sociodemographic risk factors that often affect health.