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  • Assessing gaps in motherhood after cancer: development and psychometric testing of the Survivorship Oncofertility Barriers Scale

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Original research
Assessing gaps in motherhood after cancer: development and psychometric testing of the Survivorship Oncofertility Barriers Scale
  1. Aubri Hoffman1,
  2. Chloe Josephine Denham2,
  3. Shuangshuang Fu3,
  4. Tito Mendoza4,
  5. Roni Nitecki5,
  6. Kirsten A Jorgensen6,
  7. Jose Garcia1,
  8. Kelly Lamiman7,
  9. Terri L Woodard1 and
  10. J Alejandro Rauh-Hain1
  1. 1 Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA
  2. 2 University of Texas McGovern Medical School, Houston, Texas, USA
  3. 3 Health Services Research, University of Texas MD Anderson Cancer Center, Houston, Texas, USA
  4. 4 Department of Symptom Research, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA
  5. 5 Gynecologic Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas, USA
  6. 6 Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA
  7. 7 Department of Obstetrics and Gynecology, The University of Texas Medical Branch, Galveston, Texas, USA
  1. Correspondence to Dr J Alejandro Rauh-Hain, Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, USA; jarauh{at}mdanderson.org

Abstract

Objective With a growing population of young cancer survivors, there is an increasing need to address the gaps in evidence regarding cancer survivors’ obstetric outcomes, fertility care access, and experiences. As part of a large research program, this study engaged survivors and experts in co-developing and testing the validity, reliability, acceptability, and feasibility of a scale to assess survivor-reported barriers to motherhood after cancer.

Methods Scale items were developed based on literature and expert review of 226 reproductive health items, and six experience and focus groups with 26 survivors of breast and gynecological cancers. We then invited 128 survivors to complete the scale twice, 48 hours apart, and assessed the scale’s psychometric properties using exploratory factor analyses including reliability, known-group validity, and convergent validity.

Results Item development identified three primary themes: multifaceted barriers for cancer survivors; challenging decisions about whether and how to pursue motherhood; and a timely need for evidence about obstetric outcomes. Retained items were developed into a 24-item prototype scale with four subscales. Prototype testing showed acceptable internal consistency (Cronbach’s alpha=0.71) and test-retest reliability (intraclass correlation coefficient=0.70). Known-group validity was supported; the scale discriminated between groups by age (x=70.0 for patients ≥35 years old vs 54.5 for patients <35 years old, p=0.02) and years since diagnosis (x=71.5 for ≥6 years vs 54.3 for<6 years, p=0.01). The financial subscale was correlated with the Economic StraiN and Resilience in Cancer measure of financial toxicity (ρ=0.39, p<0.001). The scale was acceptable and feasibly delivered online. The final 22-item scale is organized in four subscales: personal, medical, relational, and financial barriers to motherhood.

Conclusion The Survivorship Oncofertility Barriers Scale demonstrated validity, reliability, and was acceptable and feasible when delivered online. Implementing the scale can gather the data needed to inform shared decision making and to address disparities in fertility care for survivors.

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Data availability statement

Data are available upon reasonable request.

http://dx.doi.org/10.1136/ijgc-2023-004302

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    Data availability statement

    Data are available upon reasonable request.

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    Footnotes

    • Contributors All authors substantially contributed to the conception or design of the work or the acquisition, analysis, or interpretation of the data for this study. All authors drafted or revised the work and provided final approval of the version to be published. AH and CD contributed equally to this paper. JRH is the corresponding author. JRH is acting as guarantor.

    • Funding Funding for this study was provided by a National Institutes of Health/National Cancer Institute grant (K08 CA234333; JARH), and a National Institutes of Health T32 grant (T32 CA101642; RN, KJ). Support was provided, in part, by the Assessment, Intervention and Measurement (AIM) Shared Resource through a Cancer Center Support Grant (P30 48CA016672; JARH, KJ, RN, TM, PI: P. Pisters, MD Anderson)

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.