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

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 (rho=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.