More than 10 million cancer survivors currently reside in the United States, and 270,000 of these survivors received their diagnosis before age 21 years.1 Moreover, almost 80% of children who had cancer are still alive 5 years after diagnosis.1 Successful treatment of childhood cancers has introduced newfound struggles. Many adult survivors of childhood cancers are now at increased risk for numerous physical, emotional, psychological, social, financial, and other long-term effects, known as late effects, of cancer treatment.2 These late effects increase both morbidity and mortality in adult survivors of pediatric cancers. The three most frequent causes of increased mortality are heart damage, relapse, and secondary neoplasms.3 The most common effects of treatment that increase morbidity are sexual dysfunction, cardiovascular disease (CVD), psychosocial impediments, financial strain, endocrine difficulties, secondary malignancies, and neurologic dysfunction.3
The importance of addressing what adult survivors know about their childhood cancer diagnosis and treatment is magnified because more children are surviving cancer than ever before. These effects are becoming more evident, and an understanding of what adult survivors know about their childhood cancer is crucial to caring for these patients.4 However, the literature shows a limited number of studies address this aspect of cancer care, and many studies that do failed to investigate what survivors know about the screenings and follow-up care they should be receiving.
THE CLINICAL SITUATION
Adult survivors of childhood cancers are at a unique disadvantage compared with survivors of adult cancers. Children with cancer often do not have control of their care, as decisions are made by their caregivers. In addition, many survivors were too young to understand the diagnosis, medications, or other treatments they received. This limited understanding leads to problems as survivors reach adulthood and seek general practice providers for their health care needs. Many health care providers do not know what follow-up and screenings are needed for this patient population.5
The purpose of this review is to evaluate what adult survivors of pediatric cancers know about their medical history, and to determine if adult survivors know what screenings and follow-up care are needed based on their risk for late effects. This article uses the National Cancer Institute (NCI) Dictionary of Cancer Terms definition of late effects:
late effects Side effects of cancer treatment that appear months or years after treatment has ended. Late effects include physical and mental problems and second cancers.6
The Children’s Oncology Group (COG) published Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers on its website and in various publications.7 These guidelines provide information about what follow-ups and screenings are indicated based on the survivor’s risk. The guidelines not only help survivors, but also general practice providers who may have limited experience with pediatric oncology treatments. The guidelines are evidence-based and were developed by a multidisciplinary team of pediatric oncology experts from around the world. However, if survivors are unaware of their own medical history, they will be unable to find what guidelines they should be following. They will also be unable to relate this information to their health care providers, which is a critical step in preventing complications.8
OVERVIEW OF THE LITERATURE SEARCH
The following objectives guided the review process: (1) determine what adult survivors can recall about their medical history, (2) evaluate adult survivors’ knowledge about risk-based follow-up guidelines, (3) identify what information is lacking in the literature and propose future research, (4) discuss the implications for nursing.
Databases The electronic databases pubmed and cinahl were used to identify which studies meet the inclusion criteria. All date ranges were searched to include any historical articles on the topic. Key phrases were “pediatric cancer survivors and knowledge,” “knowledge of late effects,” and “adult survivors of pediatric cancer and knowledge.”
Inclusion criteria Participants were survivors of childhood cancer and older than 18 years at the time of the study. The survivor was the informant of the medical history and follow-up care. All the articles were English-only and peer-reviewed.
Exclusion criteria Unpublished literature, dissertations, opinion papers, and abstracts were excluded. Studies that utilized parents as the informant were also excluded. Studies that interviewed adolescent cancer survivors were also not included because of the short timeframe between treatment conclusion and the study. These criteria looked specifically at what the survivors themselves could recall about their medical history.
Article retrieval The above inclusion and exclusion criteria were applied to all database searches. The articles were reviewed to determine if they met the defined criteria. The reference lists of selected articles were also reviewed to identify any other articles that met the defined criteria. The selected articles were individually reviewed in detail following a coding sheet developed by the author.
Review of studies A coding sheet was developed to record the goals, purpose, framework, methods, sample characteristics, findings, and implications of each article. The sheet was developed specifically for this review.
Selected studies Five articles met the described criteria. Table 1 provides a side-by-side comparison of the sample characteristics, measures, and methods of the selected studies. Three of the studies described what adult survivors recall about their medical history; the other two described what adult survivors knew about their future care needs based on their risk for late effects.
Characteristics A wide range in sample sizes was represented by these articles (N = 332 to N = 9,242). Many large sample sizes included participants from the National Childhood Cancer Survivor Study. The participants’ ages ranged from 23.7 to 35 years. Although different childhood cancer diagnoses were utilized and none of the studies limited diagnoses, two studies limited its participants based on past cancer treatment received. The Cox study limited its participants to those who had received radiation to the chest.9 Lansdale and colleagues limited their study participants to those at risk for hepatitis C virus (HCV) based on their transfusion history.10