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

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Abstract

Background

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.

Methods

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.

Results

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.

Conclusion

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.

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Acknowledgements

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.

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Correspondence to Brad Zebrack.

Appendix A. Impact of cancer—childhood survivors

Appendix A. Impact of cancer—childhood survivors

YOUR BODY AND YOUR HEALTH

1. I lead a healthy life.

2. I eat a healthy diet.

3. I exercise.

4. I am as healthy as others who have never had cancer.

5. I worry about my health.

6. Having had cancer limits my ability to work (including school work).

7. It is difficult to know whether to push myself physically or to be careful and rest.

8. I believe I am an attractive person.

9. I like the way my body looks.

10. I wear clothing to cover up parts of my body I don’t want others to see.

11. Visible signs of my cancer (scars, braces, prosthesis) make me feel embarrassed or insecure.

CANCER TREATMENT AND HEALTH CARE

12. When I have a health problem I know who to see for medical care.

13. Going to the doctor makes me nervous or anxious.

14. I am confident that any doctors I see know about the long-term effects of childhood cancer treatment.

15. It is easy for me to talk to doctors about my cancer history.

16. I have all the information I need about my cancer, its treatment, and possible long-term effects.

17. When I need information about cancer I know where to find it.

18. My health insurance plan makes it difficult for me to see the doctors I want or need to see.

19. My health insurance plan pays for any cancer-related expenses (such as medical treatment for long-term effects of treatment, check-ups with an oncologist, medical equipment, prostheses, etc.)

HAVING CHILDREN

20. I am concerned that I may not be able to have children (get pregnant, get someone pregnant).

21. I am concerned about my children getting cancer.

22. I am concerned about whether my children will be healthy.

WHO ARE YOU?

23. I have confidence in myself.

24. I am a cautious or careful person.

25. Cancer is part of who I am, the person I am today.

26. I feel I am different than other people my age who have not had cancer.

27. I feel I am more mature than people my own age.

28. I am a risk-taker.

29. I feel in control of my life.

TALKING AND THINKING ABOUT CANCER

30. I think about having had cancer.

31. I would like to forget about having had cancer.

32. I need to talk about cancer and what I went through.

33. I feel comfortable talking about cancer.

34. I wonder why I got cancer.

35. I wonder why I survived and others do not.

36. I feel like something I did caused me to get cancer.

37. I am angry about having had cancer.

38. People treat me differently after they find out I have had cancer.

39. I feel like cancer controls my life.

40. I feel a special bond with people with cancer.

41. I feel like time in my life is running out.

42. I am afraid to die.

43. I worry that I might die at a young age.

MEANING OF CANCER

44. Good things have come out of having had cancer.

45. I learned something about myself because of having had cancer.

46. Cancer has been the most difficult experience of my life.

47. Having had cancer makes me think about or question my religious faith, faith in God or a higher power.

MEMORY AND THINKING

48. It is easy for me to make decisions.

49. It is easy for me to learn new things.

50. I have a hard time thinking or concentrating.

51. I have a hard time remembering things from long ago.

52. I have trouble remembering things, even for just a few minutes (like directions, phone numbers, etc.)

FINANCES AND MONEY

53. Concerns about losing health insurance keep me in school or in the job I have now.

54. My decision to take a job has been, or will be, based on whether or not health insurance benefits are included.

55. I have financial problems related to having had cancer.

56. My parents have financial problems related to my cancer and treatment.

57. I have had trouble getting assistance or services that I need, such as insurance, disability or social security benefits, time off from work for doctors’ visits, extra time to finish work or exams, specialized medical equipment, etc.

FAMILY

58. Having cancer brought my family closer together.

59. I feel guilty for what my family members had to go through when I had cancer.

60. My mother worries about me.

61. My father worries about me.

62. I am comfortable discussing my cancer with my mother.

63. I am comfortable discussing my cancer with my father.

64. My mother is comfortable discussing my cancer with me.

65. My father is comfortable discussing my cancer with me.

66. I worry about how my cancer has affected some or all of my brothers and/or sisters.1

67. I have a brother or sister with problems that might be related to my having had cancer (for example, drug or alcohol problems, learning or school problems, behavior problems, or trouble with the law).1

68. I worry about not having a spouse, partner, boyfriend or girlfriend.2

69. I worry about telling a potential spouse, partner, boyfriend or girlfriend that I have had cancer.2

70. I am concerned about how to tell a potential spouse, partner, boyfriend or girlfriend that I may not be able to have children.2

71. I worry about having sex.2

72. If I have a health problem, I feel comfortable talking to my spouse/partner about it.3

73. I worry about my spouse/partner leaving me if I were to get cancer again.3

74. I worry about having sex with my spouse/partner.3

SOCIALIZING AND BEING WITH FRIENDS

75. I make friends easily.

76. I avoid social activities.

77. I feel left out from my friends’ lives or activities.

78. I feel love and support from my friends.

79. I feel like I missed out on important life experiences while I had cancer.

LIFE GOALS

80. I feel like I have goals in life.

81. I feel like I know what I have to do to reach my goals.

82. Having had cancer makes me feel unsure about my future.

  1. 1Asked only of respondents who indicated they have siblings.
  2. 2Asked only of respondents who indicated they were not married or living as married.
  3. 3Asked only of respondents who indicated they were married or living as married.

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Zebrack, B. Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer. J Cancer Surviv 3, 174–180 (2009). https://doi.org/10.1007/s11764-009-0087-0

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