Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer
- 552 Downloads
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
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.
- 1.Zebrack BJ, Cella D. Evaluating quality of life in cancer survivors. In: Lipscomb J, Gotay CC, Snyder C, editors. Outcomes measurement in cancer: measures, methods, and applications. Edition Boston, MA: Cambridge University Press; 2005.Google Scholar
- 3.Koocher G, O’Malley J. The damocles syndrome. New York, NY: McGraw Hill; 1981.Google Scholar
- 4.Moore I, Glasser M, Ablin A. Late psychosocial consequences of childhood cancer. J Pediatr Nurs. 1987;3:150–58.Google Scholar
- 5.Zebrack BJ, Zeltzer LK, Whitton J, Mertens AC, Odom L, Berkow R, et al. Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin’s disease and non-Hodgkin’s lymphoma: A report from the Childhood Cancer Survivor Study. Pediatrics. 2002;110(1):42–52. doi: 10.1542/peds.110.1.42.PubMedCrossRefGoogle Scholar
- 8.Gray RE, Doan BD, Shermer P, Fitzgerald AV, Berry MP, Jenkin D, et al. Psychologic adaptation of survivors of childhood cancer. Cancer. 1992;70:2713–21. doi: 10.1002/1097-0142(19921201)70:11<2713::AID-CNCR2820701124>3.0.CO;2-T.PubMedCrossRefGoogle Scholar
- 9.Zebrack BJ, Zevon MA, Turk N, Nagarajan R, Whitton J, Robison LL, et al. Psychological distress in long-term survivors of solid tumors diagnosed in childhood: A report from the Childhood Cancer Survivor Study. Pediatr Blood Cancer. 2007;49(1):47–51. doi: 10.1002/pbc.20914.PubMedCrossRefGoogle Scholar
- 13.Chesler MA. Some survivors of childhood cancer are "thriving" -- Illusion or reality? A synthetic review of the literature and our empirical work. CRSO Working Paper Series, #589. Ann Arbor, MI: University of Michigan, Center for Research on Social Organization 2000.Google Scholar
- 15.Elkin D, Phipps S, Mulhern R, Fairclough D. Psychological functioning of adolescent and young adult survivors of pediatric malignancy. Med Pediatr Oncol. 1997;29:582–88. doi: 10.1002/(SICI)1096-911X(199712) 29:6<582::AID-MPO13>3.0.CO;2-8.PubMedCrossRefGoogle Scholar
- 18.Crom DB, Chathaway DK, Tolley EA, Mulhern RK, Hudson MM. Health status and health-related quality of life in long-term survivors of pediatric solid tumors. Int J Cancer. 1999;83(S12):25–31. doi: 10.1002/(SICI)1097-0215(1999)83:12+<25::AID-IJC6>3.0.CO;2-Q.CrossRefGoogle Scholar
- 20.Van Schaik CS, Barr RD, DePauw S, Furlong W, Feeny D. Assessment of health status and health-related quality of life in survivors of Hodgkin’s disease in childhood. Int J Cancer. 1999;83(S12):32–38. doi: 10.1002/(SICI)1097-0215(1999)83:12+<32::AID-IJC7>3.0.CO;2-V.Google Scholar
- 24.Zeltzer LK, Lu Q, Leisenring W, Tsao JCI, Recklitis C, Armstrong G, et al. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: A report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev. 2008;17(2):435–46. doi: 10.1158/1055-9965.EPI-07-2541.PubMedCrossRefGoogle Scholar
- 26.Ferrans CE, Power MJ. Quality of life index: development and psychometric properties. Annals of Nursing Science. 1995;8:15–24.Google Scholar
- 27.Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL™ in pediatric cancer: Reliability and validity of the pediatric quality of life inventoryTM generic core scales, multidimensional fatigue scale, and cancer module. Cancer. 2002;94(7):2090–106. doi: 10.1002/cncr.10428.PubMedCrossRefGoogle Scholar
- 33.Horner MJ, Ries LAG, Melbert D, Krapcho M, Neyman N, Aminou R, et al. (eds) SEER Cancer Statistics Review, 1975-2006, National Cancer Institute 2008. Bethesda, MD.Google Scholar
- 34.Miles MB, Huberman AM. Qualitative data analysis: A sourcebook of new methods. 2nd ed. Thousand Oaks: Sage; 1994.Google Scholar
- 35.Denzin NK, Lincoln YS. Collecting and interpreting qualitative materials. Thousand Oaks, CA: Sage; 1998.Google Scholar
- 36.Strauss A, Corbin J. Basics of qualitative research: Grounded theory procedures and techniques. London: Sage; 1990.Google Scholar
- 37.Singleton RA, Straits BC. Survey Interviewing. In: Gubrium JF, Holstein JA, editors. Handbook of Interview Research: Context and Method. Edition Thousand Oaks: Sage; 2002. p. 59–82.Google Scholar