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The perceived impact of cancer on quality of life for post-treatment survivors of childhood cancer

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Abstract

Purpose

To examine whether childhood cancer survivors’ perceptions of the impact of cancer are related to quality of life (QOL) and psychological distress.

Methods

621 survivors (aged 18–39 years) completed a mailed survey assessing distress and QOL. Hierarchical linear regression models analyzed the independent effects of perceived impacts of cancer on distress and QOL and the extent to which positive and negative perceptions attenuated the effects of covariates on outcomes.

Results

After accounting for perceptions of cancer’s impact on their lives, employment/occupation status, marital/relationship status, and health problems were observed to be significant predictors of QOL and distress. Psychological distress and the mental health component of QOL appeared to be less influenced by sociodemographic status and health problems and more a function of how survivors perceive cancer as impacting their lives.

Conclusions

Results suggest that distress and QOL are partially a function of survivors’ perceptions of how cancer has affected them and continues to affect them in both positive and negative ways. Future research is needed to examine combinations of pharmacological, psychological and/or social interventions that are likely to result in better outcomes in this population.

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Acknowledgments

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 gratitude for the support and assistance received from the following mentors and consultants: Lonnie Zeltzer, Patricia Ganz, Mark Chesler, Kathleen Ruccione, Ernie Katz, Ron Hays, Leslie Robison, Carolyn Gotay, and Marcia Leonard.

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Correspondence to Brad J. Zebrack.

Appendix 1: Impact of Cancer—CS, 45 items

Appendix 1: Impact of Cancer—CS, 45 items

Negative

Life challenges

  1. 1.

    Worry about health

  2. 2.

    Want to forget cancer

  3. 3.

    Wonder why I got cancer

  4. 4.

    Wonder why I survived

  5. 5.

    Something I did caused cancer

  6. 6.

    Angry about cancer

  7. 7.

    Cancer controls my life

  8. 8.

    Time is running out

  9. 9.

    Afraid to die

  10. 10.

    Worry I will die at young age

  11. 11.

    Missed out on life

  12. 12.

    Unsure about future

Thinking/memory problems

  1. 13.

    Easy to make decisionsa

  2. 14.

    Easy to learna

  3. 15.

    Hard time thinking

  4. 16.

    Trouble w/long-term memory

  5. 17.

    Trouble w/short-term memory

Financial problems

  1. 18.

    Financial problems from cancer

  2. 19.

    Parents financial problems from cancer

  3. 20.

    Trouble getting assistance/services

Positive

Body and health

  1. 21.

    Lead healthy life

  2. 22.

    Eat healthy diet

  3. 23.

    Exercise

  4. 24.

    Healthy as those w/o cancer

  5. 25.

    Believe I’m attractive

  6. 26.

    Like my body

  7. 27.

    Self-confident

  8. 28.

    Feel in control

Talking with parents

  1. 29.

    Can talk with mom about cancer

  2. 30.

    Can talk with dad about cancer

  3. 31.

    Mom comfortable talking about cancer w/me

  4. 32.

    Dad comfortable talking about cancer w/me

Personal growth

  1. 33.

    Cancer part of self

  2. 34.

    More mature than those without cancer

  3. 35.

    Special bond with others with cancer

  4. 36.

    Good things came from cancer

  5. 37.

    Learned about self

Health literacy

  1. 38.

    Know who to see for medical problems

  2. 39.

    Feel doctor knows cancer effects

  3. 40.

    Easy to talk to doctor about cancer

  4. 41.

    Have all cancer info I need

  5. 42.

    Know where to find cancer info

Socializing

  1. 43.

    Make friends easily

  2. 44.

    Avoid social activitiesa

  3. 45.

    Left out of friends’ livesa

aReverse scoring

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Zebrack, B.J., Landier, W. The perceived impact of cancer on quality of life for post-treatment survivors of childhood cancer. Qual Life Res 20, 1595–1608 (2011). https://doi.org/10.1007/s11136-011-9893-8

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  • DOI: https://doi.org/10.1007/s11136-011-9893-8

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