Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer

Journal of Cancer Survivorship

Volumn 3, Issue 3, 2009, Pages 174-180

  Zebrack, Brad ^a  

^a UNIVERSITY OF MICHIGAN   (United States)

Author keywords

Childhood cancer; Instrument development; Quality of life; Survivor

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; DIAGNOSTIC PROCEDURE; EMOTION; FEMALE; HEALTH SURVEY; HUMAN; INFORMATION PROCESSING; MALE; NEOPLASM; PHYSIOLOGY; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; STATISTICS; SURVIVOR; VERBAL BEHAVIOR;

ADOLESCENT; ADULT; CHILD; DATA COLLECTION; DIAGNOSTIC TECHNIQUES AND PROCEDURES; EMOTIONS; FEMALE; HEALTH STATUS INDICATORS; HUMANS; MALE; NEOPLASMS; QUALITY OF LIFE; QUESTIONNAIRES; SURVIVORS; VERBAL BEHAVIOR; YOUNG ADULT;

EID: 70349571595     PISSN: 19322259     EISSN: 19322267     Source Type: Journal    
DOI: 10.1007/s11764-009-0087-0     Document Type: Article

References (37)

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.
2. Hobbie WL, Stuber M, Meeske K, Rourke M, Ruccione K, Kinkle A, Kazak A. Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol. 2000;18(24):4060-66.
3. Koocher G, O'Malley J. The damocles syndrome. New York, NY: McGraw Hill; 1981.
4. Moore I, Glasser M, Ablin A. Late psychosocial consequences of childhood cancer. J Pediatr Nurs. 1987;3:150-58.
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.
6. Meeske K, Ruccione K, Globe DR, Stuber ML. Posttraumatic stress, quality of life, and psychological distress in young adult survivors of childhood cancer. Oncol Nurs Forum. 2001;28:481-89.
7. Fritz GK, Williams JR, Amylon M. After treatment ends: Psychosocial sequelae in pediatric cancer survivors. Am J Orthopsychiatry. 1988;58:552-61.
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.
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.
10. Kazak A, Meadows A. Families of young adolescents who have survived cancer: Social-emotional adjustment, adaptability, and social support. J Pediatr Psychol. 1989;14:175-91. doi:10.1093/jpepsy/14.2.175.
11. Kupst M, Natta M, Richardson C, Schulman JL, Lavigne JV, Das L. Family coping with pediatric leukemia: Ten years after treatment. J Pediatr Psychol. 1995;20(5):601-17. doi:10.1093/jpepsy/20.5.601.
12. Eiser C, Havermans T. Long-term social adjustment after treatment for childhood cancer. Arch Dis Child. 1994;70:66-70. doi:10.1136/adc.70.1.66.
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.
14. Arnholt U, Fritz G, Keener M. Self-concept in survivors of childhood and adolescent cancer. J Psychosoc Oncol. 1993;11:1-16. doi:10.1300/J077V11N01_01.
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.
16. Maggiolini A, Grassi R, Adamoli L, Corbetta A, Charmet GP, Provantini K, et al. Self-image of adolescent survivors of long-term childhood leukemia. J Pediatr Hematol Oncol. 2000;22(5):417-21. doi:10.1097/00043426-200009000-00006.
17. Weigers ME, Chesler MA, Zebrack BJ, Goldman S. Self-reported worries among long-term survivors of childhood cancer and their peers. J Psychosoc Oncol. 1998;16:1-24. doi:10.1300/J077V16N02_01.
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.
19. Feeny DH, Furlong WJ, Barr RD, Torrance GW, Rosenbaum P, Weitzman S. A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol. 1992;10(6):923-28.
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.
21. Ware JE, Sherbourne CD. A 36-item Short Form Health Survey (SF-36): I. Conceptual framework and item selection. Medical Care. 1992;30:473-83. doi:10.1097/00005650-199206000-00002.
22. Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, et al. The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. J Clin Oncol. 1993;11(3):570-79.
23. Aaronson NK, Ahmedzai S, Bergman B. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality of life instrument for use in international trials in oncology. J Natl Cancer Inst. 1993;85:365-76. doi:10.1093/jnci/85.5.365.
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.
25. Ferrell BR, Hassey Dow K, Grant M. Measurement of the quality of life in cancer survivors. Qual Life Res. 1995;4:523-31. doi:10.1007/BF00634747.
26. Ferrans CE, Power MJ. Quality of life index: development and psychometric properties. Annals of Nursing Science. 1995;8:15-24.
27. TM 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.
28. Goodwin DAJ, Boggs SR, Graham-Pole J. Development and validation of the pediatric oncology quality of life scale. Psychol Assess. 1994;6:321-28. doi:10.1037/1040-3590.6.4.321.
29. Bhatia S, Jenney MEM, Bogue MK, Tockwood TH, Feusner JH, Friedman DL, et al. The Minneapolis-Manchester quality of life instrument: reliability and validity of the adolescent form. J Clin Oncol. 2002;20(24):4692-98.
30. Wyatt GKH, Friedman LL. Development and testing of a quality of life model for long-term female cancer survivors. Qual Life Res. 1996;5:387-94. doi:10.1007/BF00433923.
31. Zebrack BJ, Chesler MA. Quality of life in long-term survivors of childhood cancer. Psycho-Oncol. 2002;11:132-41. doi:10.1002/pon.569.
32. Zebrack BJ, Chesler MA. A psychometric analysis of the Quality of Life-Cancer Survivors in survivors of childhood cancer. Qual Life Res. 2001;10:319-29. doi:10.1023/A:1012228823115.
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.
34. Miles MB, Huberman AM. Qualitative data analysis: A sourcebook of new methods. 2nd ed. Thousand Oaks: Sage; 1994.
35. Denzin NK, Lincoln YS. Collecting and interpreting qualitative materials. Thousand Oaks, CA: Sage; 1998.
36. Strauss A, Corbin J. Basics of qualitative research: Grounded theory procedures and techniques. London: Sage; 1990.
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.