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Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors

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Abstract

Purpose

Childhood cancer survivors require life-long care focused on the specific late effects that may arise from their cancer and its treatment. In many centers, survivors are required to transition from follow-up care in a paediatric cancer center, to care provided in an adult care setting. The purpose of this study was to identify the psychological factors involved in this transition to adult care long-term follow-up clinics.

Methods

Qualitative interviews were conducted with ten paediatric survivors still in paediatric care, as well as 28 adult survivors of whom 11 had transitioned successfully to adult care (attended three long-term follow-up (LTFU) appointments consecutively); ten who failed to transition (attended at least one LTFU appointment as an adult, but were inconsistent with subsequent attendance); and seven who had never transitioned (did not attend any LTFU care as an adult). Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories.

Results

Two overall categories and four subthemes were identified: (1) Identification with being a cancer survivor included the subthemes of ‘cancer identity’ and ‘cancer a thing of the past’ and; (2) Emotional components included the subthemes of ‘fear and anxiety’ and ‘gratitude and gaining perspective’. The analysis revealed that the same factor could act as either a motivator or a hindrance to successful transition in different survivors (e.g., fear of recurrence of cancer might be a barrier or a facilitator depending on the survivor’s life experience).

Conclusions

Psychological factors are an important consideration when preparing cancer survivors for transition to adult long-term follow-up care. Identifying and addressing the individual psychological needs of childhood cancer survivors may improve the likelihood of their successful transition to adult care.

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Acknowledgments

This study received grants from the Canadian Institutes of Health Research Institute of Cancer Research and the Innovation Fund of the Hamilton Academic Health Sciences Organization Alternate Funding Plan under the auspices of the Ontario Ministry of Health and Long-Term Care and the Ontario Medical Association. Anne Klassen is funded by a Canadian Institutes of Health Research Mid-Career Award.

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Authors and Affiliations

  1. Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada

    Leeat Granek, Paul C. Nathan, Leila Amin, Mark L. Greenberg & Katherine Boydell

  2. McMaster Children’s Hospital, 1280 Main Street West, Hamilton, ON, L8S4K1, Canada

    Zahava R. S. Rosenberg-Yunger, Ronald D. Barr & Anne F. Klassen

  3. Princess Margaret Hospital, University Health Network, 610 University Ave., Toronto, ON, M5G 2 M9, Canada

    Norma D’Agostino & David Hodgson

Authors
  1. Leeat Granek
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  2. Paul C. Nathan
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  3. Zahava R. S. Rosenberg-Yunger
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  4. Norma D’Agostino
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  6. Ronald D. Barr
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  9. Katherine Boydell
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  10. Anne F. Klassen
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Correspondence to Leeat Granek.

Appendix

Appendix

Selected questions from the semi-structured interview guide

Patient factor

Transition factors

1. Can you tell me about the details of your cancer? (e.g., age at diagnosis; details about type of cancer; stage/risk/relapse)

1. Do you see yourself continuing to seek follow-up care?

2. Can you talk about what being a cancer survivor means to you?

2. What do you think are some of the benefits of continuing to attend long-term follow-up are?

3. Can you tell me about your feelings associated with having (had) cancer?

3. Can you describe some of the things you think will make it difficult for you to continue to see a health care provider about your cancer when you become an adult?

4. Have you had any negative experiences as a result of having had cancer?

4. Can you describe some of the things you think will help you to continue to see a health care provider about your cancer treatment and possible late effects when you become an adult?

5. Are there any things associated with your cancer that you worry about? If so, what kinds of things?

5. What kinds of services (e.g., medical, psychosocial, vocational) do you think will be useful to you as an adult childhood cancer survivor?

6. Do you identify as being a cancer survivor? If so, what does that identity look like for you? (e.g., participating in cancer groups?; participating in cancer events?)

 

7. How, if at all, has having had cancer changed your perspective on life?

 

8. Do any of your experiences in the past make you want to attend or not attend follow-up care?

 

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Granek, L., Nathan, P.C., Rosenberg-Yunger, Z.R.S. et al. Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors. J Cancer Surviv 6, 260–269 (2012). https://doi.org/10.1007/s11764-012-0223-0

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  • DOI: https://doi.org/10.1007/s11764-012-0223-0

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