Identifying and describing cancer survivors: Implications for cancer survivorship research and clinical care

Abstract

Background Gathering information directly from cancer survivors has advanced our understanding of the cancer survivorship experience. However, it is unknown whether surveys can distinguish important subgroups of cancer survivors. This study aimed to describe the current landscape of survey questions used to identify and describe cancer survivors in national cross‐sectional studies. Methods Using publicly available databases, the authors identified national cross‐sectional surveys used in the United States within the past 15 years that included a question on self‐reported history of cancer. After abstracting questions and response items used to identify cancer survivors, they conducted a descriptive analysis. Results The authors identified 14 national cross‐sectional surveys, with half administered to the general population and the other half administered to cancer survivors. The most common question used to identify cancer survivors was “Have you ever been told by a doctor or other health professional that you had cancer?” Most surveys had questions asking participants to identify a single cancer type (n = 11), multiple prior cancer diagnoses or types (n = 11), and the time from diagnosis (n = 12). Treatment questions varied from active treatment status to specific treatments received. Questions addressing cancer stage (n = 2), subtypes (n = 1), metastatic status (n = 3), and recurrence (n = 4) were less frequently included. Conclusions There is no standard method for assessing self‐reported cancer history, and this limits the ability to distinguish among potentially important subgroups of survivors. Future cross‐sectional surveys that capture nuanced data elements, such as cancer types, stages/subtypes, metastatic/recurrent status, and treatments received, can help to fill important gaps in cancer survivorship research and clinical care.

Reply to “Switching the scope from ‘how to identify cancer survivors’ to ‘who is participating in cancer survivorship research’: A proposal for a new focus”

“…We appreciate the letter by van de Wal and colleagues in response to our recent article describing survey questions used to identify and describe cancer survivors in national cross‐sectional studies 1 . We agree with the authors that we must improve the ease of data collection using self‐reported surveys, expand the capture of relevant information and outcomes, promote the representativeness of participants, and incorporate health and technology literacy.…”

Switching the scope from “how to identify cancer survivors” to “who is participating in cancer survivorship research”: A proposal for a new focus

“…Missing relevant information, such as the cancer type, time from diagnosis, or type(s) of prior or current treatments, is considered an important limitation of most surveys: only 2 of 14 surveys collected all these parameters 1 . In some cases, the collection of limited clinical information might be sufficient to answer a particular research question.…”

“…The reliability of self‐reported data is also questionable 2 . Doose et al 1 stated that correctly recalling information may vary according to the length of time that has passed between treatment and survey administration. However, other aspects need to be taken into account as well.…”

“…The studies cited by Doose et al 1 on the accuracy of recall mostly included breast cancer survivors. The literature shows that the accuracy of recalling tumor‐ and treatment‐specific details is moderate to high among breast cancer survivors; however, participating breast cancer survivors are often Caucasian, English‐speaking, well‐educated females.…”

“…Switching the scope from "how to identify cancer survivors" to "who is participating in cancer survivorship research": A proposal for a new focus With great interest, we read the study by Doose and colleagues, 1 who described survey questions used to identify and describe cancer survivors in national cross-sectional studies. Considering the worldwide rise in cancer survivors, we underline the importance of finding more accessible ways to optimize data collection among cancer survivors.…”