Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer
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- Zebrack, B. J Cancer Surviv (2009) 3: 174. doi:10.1007/s11764-009-0087-0
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Thirty years of psychosocial oncology research have detailed issues having significant impact in both pediatric and adult populations; yet, few studies have captured the subtle and unique ways in which cancer impacts, disrupts and in some instances promotes the growth and development of adolescents and young adults with a cancer history. This paper reports the initiation of an effort to assess the impact of cancer in this young survivor population through the development of a new Impact of Cancer (IOC) instrument.
64 young adults aged 18–39 years and treated for a pediatric malignancy participated in face-to-face interviews and responded to questions prompting them to describe the impact of cancer on their physical, psychological, social and spiritual/existential well-being. Intent of analysis was to organize data into meaningful sub-categories from which to develop a set of candidate survey items that assess a range of problems, issues and changes that long-term survivors ascribe to their cancer experience.
A total of 82 candidate survey items represented content across 11 topical domains including Body, Health and Body image, Treatment and Health Care, Having Children, Identity, Talking and Thinking About Cancer, Meaning of Cancer, Memory and Thinking, Finances, Family and Relationships, Socializing, and Life Goals.
Assessing the instrument’s psychometric properties in a large representative group of young cancer survivors is the next step for further development of such a measure. Once established, a valid and reliable Impact of Cancer instrument has the potential for identifying salient survivorship issues in a clinical setting.
KeywordsInstrument development Quality of life Childhood cancer Survivor
Numerous investigations utilizing various research methods have assessed outcomes among cancer survivors, including psychological adjustment, psychosocial adaptation and quality of life (QOL) . Most of these studies suggest that on standardized measures of QOL cancer survivors are functioning at a high level. Few survey research studies, however, have captured the subtle and unique aspects of cancer survivorship for young adults with a cancer history, and few have examined the extent to which young adult survivors’ age/life stage at diagnosis and treatment influences their psychosocial development.
Historically, a number of studies have suggested that a sizable proportion of childhood cancer survivors are seriously troubled psychologically, perhaps even exhibiting psychopathologic symptoms [2, 3, 4, 5, 6]. In contrast, other studies indicate that most childhood cancer survivors score in the normal range on standardized psychometric measures, thereby demonstrating few significant differences in psychosocial adjustment when compared to young people without a history of childhood cancer [5, 7, 8, 9]. Kazak and Meadows  summarized early findings, stating that “most (survivors) score near normal in terms of psychological and social functioning” (p. 187); and, Kupst et al. argued that “despite periods of intense stress, most children and families adapt well,” although “a significant minority” of survivors have problems (p. 602). In contrast, some investigators have drawn attention to anecdotal reports that suggest psychological growth in this population [12, 13], and several studies have demonstrated the population of childhood cancer survivors to be significantly healthier (in psychosocial terms) or more appreciative of life than population norms or healthy controls [14, 15, 16, 17].
While a sizable body of literature exists for young adult survivors of childhood cancer, relatively few empirical studies examine cancer’s impact on unique developmental aspects of adolescence and young adulthood such as sexuality and fertility concerns, treatment outcomes and physical symptoms, health care needs, family impact, peer support and other quality of life issues. In terms of measurement, existing QOL instruments have not assessed the extent to which survivors perceive cancer as having an impact on specific and developmentally relevant life issues. A new measure that taps these specific content areas of relevance for this age-specific population can assist clinicians in identifying critical areas of concern for the survivors they may encounter in long-term survivorship clinics or primary care settings.
In an attempt to examine dimensional and global aspects of quality of life in childhood cancer survivors, some investigators have administered instruments designed specifically to assess multiple and varied aspects, or qualities, of people’s lives [18, 19, 20]. Some instruments, such as the Medical Outcomes Study SF-36 , the Functional Assessment of Cancer Therapy (FACT)  and the European Organization for the Research and Treatment of Cancer (EORTC)—C30 Questionnaire , are widely-used in quality of life research and have well-established norms derived from adult cancer populations. Only recently have these measures begun to emerge in the childhood cancer survivor literature. Others, like the Quality of Life—Cancer Survivors  and the Quality of Life Index—Cancer  have received less attention and psychometric analysis in survivor populations. Some quality of life instruments have been developed specifically for children and adolescents in active treatment [27, 28, 29] but their administration in off-treatment young adult survivor populations has yet to be reported.
All of these instruments assess function or status within physical, psychological, social and/or spiritual/existential domains. Yet, empirical studies also suggest that well-being in one aspect of life often influences, and is influenced by, well-being in another [30, 31]. Thus, when applied to cancer survivors, generic measures fall short in terms of identifying specific survivorship challenges in the context of how cancer has impacted upon survivors’ day-to-day lives. Furthermore, the reliability, validity and utility of these instruments in childhood cancer survivors, whether generic or cancer-specific, have yet to be established. In some instances psychometric testing suggests that the administration of measures developed for adult survivor populations may be inappropriate for use in younger cohorts of survivors . Currently, there exists no consensus or “gold standard” for assessing long-term psychosocial/QOL outcomes for childhood cancer survivors.
This report represents the initiation of an effort to identify and define areas of specific concern for young adult survivors of childhood cancer. It offers an opportunity to identify aspects of cancer survivorship that have yet to be well established and measured empirically. Its product—a field tested and psychometrically sound instrument—has the potential to advance the field of psychosocial research by offering investigators a means for obtaining a comprehensive understanding of the impact of cancer on the lives of young adult survivors of childhood cancer. This knowledge can serve as a foundation for deriving testable hypotheses regarding the myriad variables that may influence the quality of survivors’ lives throughout the remainder of their lives. This work also represents an important step to testing potentially effective and efficacious psychosocial and behavioral interventions.
This study involved interviews with young adult survivors of childhood cancer and subsequent analyses of these qualitative data for the purpose of creating and pilot testing items for inclusion in a new survey instrument. The process for creating candidate items for use in a new survey measure is described in this manuscript. Administration and subsequent psychometric testing of the items in large representative samples of young cancer survivors would be the next logical step for further development of such a measure.
Developmental steps for the Impact of Cancer (IOC) measure
Qualitative interviews with off-treatment survivors of childhood cancer were the first component of instrument development and form the basis for this report. Over a two year period (2004–2006), a one-page flyer announcing an opportunity to participate in a research study of childhood cancer survivors was posted in follow-up clinics and hematology/oncology divisions at several childrens hospitals, distributed at cancer survivor day celebrations, posted in newspaper advertisements, and sent by word-of-mouth via local survivors’ support and advocacy groups. Announcements included an offer of a $10 gift card incentive for participation. Potential participants voluntarily contacted our research staff to indicate interest in participating. We recruited a total of 64 survivors between the ages of 18–35 years who were age 21 years or younger when diagnosed with a pediatric malignancy and treated by pediatric specialists. Participants were required to be at least one year post-treatment.
Characteristics of qualitative interview subjects, n=64
Age at diagnosis
Type of cancer
Mean age at study
Range: 19–37 years
In semi-structured interviews lasting between 30–120 minutes, a staff interviewer asked survivors to describe how cancer had affected, or continues to affect, their lives. In essence, one question—“How has having had cancer affected your life?”—was asked repeatedly, while probing for effects in physical, psychological, social, and spiritual domains. All interviews were transcribed and subject to content analysis, which resulted in the creation of items for the candidate instrument. All procedures were reviewed and approved by each participating institution’s Institutional Review Board.
Specifically, qualitative analyses in this project involved a multi-step process. First, segments of transcribed texts (phrases, sentences, paragraphs) were examined line-by-line and assigned shorter phrases, or codes. Codes, as described by Miles and Huberman, are one or two words that in the reviewers’ judgment represent the content of the segment. In some instances, multiple codes were assigned to a data segment. To maintain integrity of respondents’ meanings and to limit bias resulting from the analyst’s imposition or interpretation of meaning, this process used respondents’ own words as labels for the data . It also is important to note here that the frequency of any code is not relevant at this phase of exploratory analysis. A goal of analysis was to identify variation in long-term survivors’ experiences. Even outliers—comments and subsequent codes reported infrequently and unique to perhaps only one or two respondents—still represented a range of life experiences for this convenience sample and an aspect to be included in a set of derived survey items. Coding was performed by the principal investigator (BZ) and was reviewed during the analytic process with project consultants and co-investigators.
Thematic sub-domains across 4 Quality of Life domains
Body and Health
Concerns, Worries and Fears
Religion, Faith and God
Why did this happen?
Talking about Cancer
Attributions of meaning
Helping others and “giving back” Other cancer patients/survivors
An item pool for an initial version of a candidate instrument was subsequently developed by creating items around each of the 86 codes. For example, the code “guilt” was organized within the “Feelings” theme in the Psychological/Emotional domain and represented data explicitly stating that some survivors experience guilt around feeling responsible for somehow getting cancer or for burdening their families. As a result, candidate items for the code “guilt” included: “I feel like something I did caused me to get cancer” and “I feel guilty for having been a burden on my family.” In this manner we generated 250 potential items that to the greatest extent possible utilized the data as explicitly expressed by the interview participants. These items were then reviewed by an expert panel of 13 clinicians and researchers involved in oncology (including oncologists, nurses, social workers and psychologists) and 17 cancer survivors or patient advocates actively involved in service delivery or programmatic or advocacy activities. These reviewers examined the list for redundant or incomprehensible items and evaluated the content of the items for their breadth and scope of coverage of long-term survivorship issues. Feedback from these experts permitted us to combine some items, eliminate others, and reduce the item pool to 125. This resultant pool of 125 items was then pilot tested in 13 face-to-face interviews with young adult survivors of childhood cancer for the purposes of cognitive testing, in which we assessed respondents’ perceptions, comprehension and cognitive understanding of the meaning of the items .
Ultimately, a set of 82 statements was selected for inclusion in a subsequent mailed survey intended to examine the psychometric properties of the new instrument. The 82 items were organized under 11 headings representing the investigators’ theoretical notions of the emerging constructs suggested by the items: “Your Body and Your Health” (11 items), “Cancer Treatment and Health Care” (8 items), “Having Children” (3 items), “Who are You” (7 items), “Talking and Thinking About Cancer” (14 items), “Meaning of Cancer” (4 items), “Memory and Thinking” (5 items), “Finances and Money” (5 items), “Family” (10 items), “Relationships” (7 items), “Socializing and Being with Friends” (5 items), and “Life Goals” (3 items). These categories are not ordered by degree of importance since analyses of qualitative data were not suggestive of degree of salience across the sample. However, degree of importance can and will be assessed in subsequent psychometric testing of the instrument. The proposed Impact of Cancer—Young Adult instrument is included here as Appendix A.
The work proposed here extends current stress-coping and QOL models in cancer survivorship research by placing this investigation of cancer-related outcomes in childhood cancer survivors in the context of human psychological/cognitive growth and lifespan development. It offers an opportunity to identify aspects of cancer survivorship that have yet to be well established and measured empirically. Information derived from administration of the Impact of Cancer in diverse samples of childhood cancer survivors can serve as a foundation for deriving testable hypotheses regarding the myriad variables that may influence the quality of survivors’ lives throughout the remainder of their lives. Once established, a valid and reliable Impact of Cancer instrument also has the potential for identifying salient survivorship issues in clinical care settings where survivors access on-going health care monitoring for long-term effects.
This work funded through the US Department of Health and Human Services, National Institutes of Health, National Cancer Institute (K07 CA100380). Also, the author wishes to express his gratitude for the support and assistance received from the following mentors and consultants: Lonnie Zeltzer, Patricia Ganz, Smita Bhatia, Wendy Landier, Kathleen Ruccione, Ernie Katz, Aura Kuperberg, Ron Hays, Leslie Robison, Carolyn Gotay, and Marcia Leonard.