Three distinct groups of childhood cancer survivors (worried, self-controlling, and collaborative
) were identified through latent class analysis on the basis of survivors' self-reported feelings and perceptions about their cancer and its treatment, their future health, and their motivation related to health. Sex, perceived health status, and the reported presence and severity of late effects were significant covariates of the classes, and class membership predicted the likelihood of participating in the recommended routine and/or cancer-related medical care. Latent class analysis supported the basic premises of the conceptual model
. Survivors could be profiled by the model's modifiable mediators; these heterogeneous profiles together with the model's background variables (moderators) predicted self-reported behaviorally-related outcomes.
Survivors in the self-controlling
group perceived themselves to be in good health and as a result, they likely see no need for routine medical or cancer-related care.
This attitude may, however, reflect unawareness of their long-term risks of sequelae.
Given these survivors' strong intrinsic motivation for health, they may benefit from distance-based and autonomy-supportive intervention strategies delivered by experts in survivor care at major cancer treatment centers; such interventions could include print media and/or telephone interaction addressing the risks of late sequelae and recommending screening/follow-up. Because these survivors are the least worried about their future health, the information provided should be detailed and graphic in explaining the probability and nature of risks, given their treatment exposures. Increasing the affective response of survivors in this group may be a successful strategy to enhance their overall concern and interest in follow-up care.[9, 40]
group was the class least likely to have easy access to risk-based health care, given their demographic and resources profile. A recent study
found that survivors who were African-American, older at interview, or uninsured were less likely to have received risk-based, survivor-focused care. Identifying these survivors through established long-term survivor cohorts (CCSS, British Childhood Cancer Survivor Study, and Childhood Cancer Research Network,
) treating institutions, and community solicitation (web or other media) and providing them with both distance-based (mail and/or telephone) and local care resources may facilitate their participation in medical follow-up care.
group was also distinguished by cancer-related fears and anxieties. These fears, together with the group's perceptions of poorer health and of a greater threat posed by chronic illness, may deter participation in screening/follow-up. Fear, worry, and anxiety exert both positive and negative influences on health-related behaviors[9, 42]
and can support or inhibit motivation toward health-promoting behavior. Although early detection through screening may positively modify a disease course, the prospect of learning that one has a serious health condition can be profoundly frightening.[42–43]
Survivors may either resort to avoidance behavior (e.g., not going for routine evaluations) or adhere to follow-up recommendations to reduce the discomfort caused by fear and anxiety.[40, 42]
Misconceptions and lack of specific information about risk and risk factors can exacerbate fear or contribute to denial of the possibility of significant health problems.[40, 42,-43]
Survivors in the worried
class would likely be receptive to individualized print summaries detailing their long-term risks and ways to reduce those risks. To avoid further escalating fears and concerns, the tone of the information offered should be non-threatening.
Survivors in the collaborative
group were both receptive to professional intervention and highly motivated to assume a primary role in maintaining their health. They are likely to work effectively with their providers if they are made aware of their risks and the actions necessary to reduce those risks. Like many survivors, however, they may not fully understand their risks or realize that specific follow-up care is recommended to modify the risks. Previous studies have found substantial knowledge deficits and misperceptions among childhood cancer survivors about their cancer diagnosis, treatment, and cancer-related health risks.[44–51]
Although information about late effects is increasingly being provided by family and oncology clinicians, persistent knowledge deficits may limit adult survivors' participation in screening and other risk-reducing interventions. Collaborators
may be highly motivated to follow through on screening recommendations if they are: 1) provided with treatment summaries detailing their specific risks; 2) given specific recommendations for screening and follow-up; and 3) made aware of community resources for care. Cancer treatment centers can provide survivors and their providers with print summaries of individual risks and recommended follow-up at the end of therapy and periodically afterward (as reminders to seek follow-up care).
Tiered or staged follow-up approaches for childhood cancer survivors have recently been proposed.[52–53]
Levels of care range from providing the survivor with individualized print materials detailing treatment and recommended follow-up screening, to offering telephone consultation and support for specific risks, to care at specialized late effects clinics. These models have been based largely on survivors' diagnoses and treatment exposures. Other models of care are provider-based, with providers ranging from nurse specialists to a primary care physician and a panel of sub-specialists.
We offer yet another option to enhance emerging models of survivorship care – using survivor profiles as well as cancer treatment history and level of provider to inform tailored follow-up care.
The study sample reflects a subset of the overall CCSS population, that is, those who responded to the HCNS; therefore, survivors included in the present analysis may not be fully representative of the population from which they were derived. While the CCSS population represents a large and heterogeneous cohort of 5-year survivors, results may not be generalizable to all survivors of childhood cancer. Because the approach for determining the optimal number of classes in latent class analysis is less standardized than with other analytic strategies, it is possible that childhood cancer survivors comprise more than the three classes we identified. The BLMRT, however, did not support more classes. While we included a large number of covariates in the analysis, there may be additional variables that differ across classes but were not available in our data set.
We identified three distinct profiles of childhood cancer survivors on the basis of responses to affective, cognitive, and motivation items related to their disease and treatment. Significant class covariates included sex, self-reported health status, and the self-reported presence/severity of late effects. These profiles predicted whether survivors were likely to obtain routine medical check-ups and/or participate in cancer-related medical follow-up. Collectively, our findings suggest that behavior related to modification of late-effects risks is predicted by a constellation of factors that are uniquely configured in discrete subgroups of survivors. The findings further suggest that a “one size fits all” approach is not likely to be the optimal strategy for models of survivorship care. Items useful in profiling survivors' likely behavior patterns and their specific knowledge about treatment and long-term follow-up recommendations could be used for brief screening at the end of treatment and periodically throughout survivorship to identify those at risk and inform tailored intervention strategies. Current and future studies are focused on the utility of the class profiles in predicting actual participation in medical surveillance and behaviorally-related health outcomes.