To our knowledge, this is the first study comparing self-reported health problems of young adult cancer survivors and young adults without a history of a chronic health condition at a medical visit. Our findings are consistent with those from the Childhood Cancer Survivor Study (CCSS) in that cancer survivors report significantly more health problems compared to controls (13
). Although the results of the CCSS help define the incidence and prevalence of late effects of survivors through epidemiological survey methodologies, our study provides additional clinically useful information about how survivors may differ from individuals of similar age who present at a medical visit. In addition, the present study used non-related controls compared to the sibling controls of the CCSS—individuals that may not represent true “healthy” and unaffected individuals. Specifically, siblings of childhood cancer survivors often experience psychological distress and engage in health hurting behaviors that may compromise their health and well-being (17
Young adult cancer survivors self-reported more than two times the number of health problems as young adults without a history of a chronic health condition. Survivors were more likely to report problems that may require significant medical intervention or monitoring such as cardiac, pulmonary, reproductive, vision/eye, thyroid, kidney, growth, and bone/joint health. However, both groups tended to report problems exacerbated by stress and that may relate to both physical and psychological difficulties. Furthermore, female gender was associated with report of health problems in the healthy young adults but not among cancer survivors.
Despite the increased frequency of significant problems reported by survivors, some problems were reported relatively frequently across both groups including dermatological, gastrointestinal, bone/joint, weight, sleeping, psychological problems, and headaches. The frequency of these problems reported is consistent with previous research on problem endorsement of young adults and adult cancer survivors (19
). These may be issues that are common to the developmental stage of this population, and more familiar in presentation to PCPs. However, the etiology and nature of these health problems may differ among cancer survivors and controls.
It should also be noted that healthy young adults in general do not often seek medical care (14
). Those who do seek medical care may be motivated by an acute illness, required physical for work or school, or other health concerns. Understanding the health problems of survivors in comparison to healthy controls in the setting of a clinical visit is important to help sort out what issues are unique to the experience of cancer survivorship as compared to common health problems of young adults seeking medical care. Thus, given that young adulthood is often considered a disease-free period and has received relatively little attention in research, our study highlights the unique presentation of health issues among young adult survivors in comparison to their peers.
Predictors of problem report varied between the two groups. While female and non-Hispanic whites reported more problems for the controls, age and clinical characteristics were most related to number of health problems reported by cancer survivors. Older age has been shown to relate to problems for survivors, given the increase in late effects with age (3
). That disease characteristics, which may be unknown to PCPs, were most related to problem report emphasizes the need for providers to have mechanisms for accessing treatment summaries and to collaborate with referring oncologists to better coordinate transfer of care (10
). PCPs who are aware that a survivors’ treatment was particularly intensive can use this knowledge to elicit information about the presence of problems if not mentioned by the patient. Coordinated care between oncology providers and PCPs, including communication of disease and treatment history and future risk, is ideal and desired by cancer survivors (10
). However, it should be noted that the regression models explained relatively little variance of self-reported health problems. Thus, there is a need to identify other factors that may contribute to patient report of problems.
Limitations of the study exist. First, the HKI was designed to assess potential late effects of survivors. While comprehensive, the questionnaire may not include all health problems relevant to young adults. Additionally, the survivors were seen in a specialized survivorship clinic and it is unknown if their report of problems would be similar in a primary care setting. However, knowledge of the description of health problems of survivors seen in survivorship clinic may increase generalists’ awareness of problems to assess when assuming survivorship care of young adults. The overall sample is mostly non-Hispanic white, consistent with the general childhood cancer survivorship population (22
). Finally, the control group in this study is not representative of all patients in primary care given they did not have significant medical histories.
Despite the limitations, this study offers valuable insight from a clinical perspective about how young adult survivors of childhood cancer differ from individuals without a history of chronic illness of a similar age. While both groups present similar issues such as skin, weight, and gastrointestinal issues, survivors are more likely to present with problems of significant medical concern requiring further evaluation and monitoring. Indeed, research has shown that the health problems of childhood cancer survivors increase throughout adulthood rather than plateau (3
). Specifically, thirty years from diagnosis, 73% of survivors will develop at least one chronic physical condition and 42% will develop a condition that is life-threatening, severely disabling, or will have died from a chronic condition (3
). Thus, the likelihood of increasing health problems and risk of future problems of survivors underscores the need for childhood cancer survivors to transition to adult care for long-term follow-up.
As many young adults survivors “age out” of pediatric oncology settings, PCPs have a unique opportunity to provide high quality and accessible follow-up care for this at-risk population. Understanding the unique health problems of young adult survivors is one step in attaining proficiency in caring for them. Given PCPs are trained in risk assessment, risk modification, cancer surveillance, chronic disease management, care coordination, and patient education, they have skills critical to addressing the needs of young adult childhood cancer survivors (9
). Furthermore, because of the continuity of care provided by PCPs, they are well-suited to provide the longitudinal, proactive, and anticipatory care required for optimal survivorship care (24