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Fertility counseling information adequacy as a moderator of regret among adolescent and young adult breast cancer survivors

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Abstract

Purpose

Current literature disagrees on whether fertility counseling decreases or increases decision regret among young breast cancer survivors. This study investigates whether fertility counseling provided to pre-menopausal breast cancer patients regarding infertility due to treatment is associated with decision regret post-treatment, and how that relationship is moderated by information adequacy.

Methods

Breast cancer patients aged 18–35 listed in the Pennsylvania Cancer Registry as diagnosed between 2007 and 2012 were surveyed. Basic descriptive analyses were conducted, and linear regression models were estimated.

Results

Receipt of fertility counseling was not directly associated with decision regret. However, as fertility information adequacy increased, decision regret significantly decreased among women who received fertility counseling after finishing treatment or before and after finishing treatment. On average, a woman who receives fertility counseling before and after treatment with an information adequacy score of 1.5 had a regret score of 2.68. In contrast, a woman who received fertility counseling before and after treatment who had a fertility information adequacy score of 5 had a regret score of only 1.26 on average.

Conclusion

Information adequacy is a significant moderator in the relationship between fertility counseling and decision regret. This suggests a possible explanation for disagreement in the literature regarding the benefits of fertility counseling and highlights the need for an increased focus on the adequacy of the information provided.

Implications for cancer survivors

Fertility counseling should be pursued for young adult breast cancer patients and survivors, provided that their satisfaction with the information received is monitored and remains high.

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Funding

This work was supported by the Susan G. Komen Foundation Post-Baccalaureate Training Program in Disparities Research (grant number KG101424). This publication was also made possible in part by Grant TL1TR002531 (T. Hurley, PI) from the National Institutes of Health, National Center for Advancing Translational Sciences, Clinical and Translational Sciences Award.

Author information

Authors and Affiliations

  1. Indiana University School of Medicine, 410 West 10th Street, Suite 2000, Indianapolis, IN, 46202, USA

    Angela G. Campbell

  2. The Pennsylvania State University, State College, PA, USA

    Marianne Hillemeier

Authors
  1. Angela G. Campbell
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  2. Marianne Hillemeier
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Contributions

Angela G. Campbell: conception of research question, survey design, data entry, data analysis, and writing—original draft and editing. Marianne Hillemeier: funding acquisition, conception of research question, survey design, methodology consultation, and writing—review and editing. Both authors approved the final version of the article.

Corresponding author

Correspondence to Angela G. Campbell.

Ethics declarations

Informed consent was obtained from all individual participants included in the study. This study was approved by the University Park IRB at the Pennsylvania State University (STUDY00001163).

Conflict of interest

The authors declare that they have no conflicts of interest.

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Appendices

Appendix 1. Decision regret questions utilized in the breast cancer and fertility survey

When thinking about your cancer treatment and the effects that it had on both your survival and your fertility, how would you rate the following statements (circle one):

 

Strongly disagree

Disagree

Neither agree nor disagree

Agree

Strongly agree

a) My breast cancer treatment choice was the right decision*

1

2

3

4

5

b) I regret the breast cancer treatment choice that was made

1

2

3

4

5

c) I would go for the same breast cancer treatment if I had to do it over again*

1

2

3

4

5

d) My breast cancer treatment decision was a wise one

1

2

3

4

5

  1. *The question was reverse coded for analysis

Appendix 2. Information adequacy questions utilized in the breast cancer and fertility survey

In regards to the effects of your cancer treatment on your fertility would you say (circle one):

 

Strongly disagree

Disagree

Neither agree nor disagree

Agree

Strongly agree

a) I am satisfied with the information I received about breast cancer treatment and childbearinga

1

2

3

4

5

b) I knew the pros and cons of the effects my breast cancer treatment on my future childbearinga

1

2

3

4

5

c) I wanted more information about how my breast cancer treatment may affect having childrena*

1

2

3

4

5

d) I wanted clearer advice about my breast cancer treatmentb*

1

2

3

4

5

e) I made a well informed choice regarding my breast cancer treatmentb

1

2

3

4

5

f) I was aware the of the ways that my breast cancer could be treated and how each of the treatment options would affect childbearinga

1

2

3

4

5

g) I felt I knew the benefits of my breast cancer treatmentb

1

2

3

4

5

h) I felt I knew the risks and side effects of my breast cancer treatment on childbearinga

1

2

3

4

5

i) It was hard to decide if the benefits of the breast cancer treatment were more important to me than the risks of not having a childa*

1

2

3

4

5

j) The breast cancer treatment decision was hard for me to makeb*

1

2

3

4

5

k) I was unsure what to do in regards to my breast cancer treatmentb*

1

2

3

4

5

l) It was clear what breast cancer treatment choice was best for meb

1

2

3

4

5

  1. aThis question was used to measure information adequacy related to fertility
  2. bThis question was used to measure information adequacy related to general information
  3. *The question was reverse coded for analysis

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Campbell, A.G., Hillemeier, M. Fertility counseling information adequacy as a moderator of regret among adolescent and young adult breast cancer survivors. Support Care Cancer 29, 2689–2697 (2021). https://doi.org/10.1007/s00520-020-05771-9

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  • DOI: https://doi.org/10.1007/s00520-020-05771-9

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