Fertility Information Support Scale

1. Abstract

Advances in early detection and systemic oncological therapies have substantially increased the long-term survival rates for breast cancer patients. Consequently, clinical survivorship priorities have shifted from focusing solely on overall survival to safeguarding the holistic quality of life among survivors. For reproductive-aged women diagnosed with breast cancer (typically defined as individuals aged 18 to 49 years), therapeutic regimens such as adjuvant gonadotoxic chemotherapy, radiotherapy, and prolonged endocrine therapy pose substantial risks of premature ovarian insufficiency and permanent loss of reproductive capacity. The anticipation of treatment-induced infertility generates marked psychological distress, existential grief, and impaired health-related quality of life. Despite these profound implications, many patients experience significant deficits in fertility-related communication, harboring misperceptions that pregnancy following cancer treatment is biologically impossible or inevitably causes disease recurrence. To systematically evaluate the quality and accessibility of reproductive health communication in oncology settings, researchers developed the Fertility Information Support Scale.

Grounded in the multidimensional paradigm of social support theory, the Fertility Information Support Scale is a 17-item patient-reported outcome measure specifically engineered to quantify the interpersonal, informational, and agency-related support mechanisms provided to young breast cancer patients. Diverging from traditional scales that quantify individual reproductive distress or fertility intentions, this instrument measures three distinct structural subscales: Cognitive Support, Emotional Support, and Self-Support. In its definitive psychometric validation, the scale exhibited exemplary measurement properties. The internal consistency of the total instrument demonstrated a Cronbach's alpha (α) of 0.82, with subscale reliability coefficients spanning 0.81 to 0.89. Longitudinal stability evaluated via a two-week test-retest interval demonstrated an intraclass correlation coefficient exceeding 0.93. Confirmatory factor analysis verified the hypothesized three-factor architecture, yielding robust goodness-of-fit indices (Comparative Fit Index [CFI] = 0.979; Incremental Fit Index [IFI] = 0.979; Root Mean Square Error of Approximation [RMSEA] = 0.055). By operationalizing the oncofertility communication ecosystem, the scale provides psycho-oncology clinicians and researchers with an empirically validated diagnostic tool to identify gaps in patient education, personalize supportive interventions, and facilitate shared decision-making.

2. Keywords

Fertility Information Support Scale, oncofertility, breast cancer, fertility preservation, psycho-oncology, social support theory, psychometrics, reproductive health, patient-reported outcome measures, cognitive support, emotional support, self-advocacy

3. Authors

The Fertility Information Support Scale was developed and psychometrically validated by an interdisciplinary team of clinical nursing researchers and oncology specialists:

• Yuqiao Xiao (Corresponding Author) — Clinical Nursing Researcher; Contact: [email protected]
• Jinhua Li — Oncology Nursing and Clinical Practice Specialist
• Jing Lei — Health Services and Oncofertility Guidance Researcher
• Lu Han — Oncology Supportive Care Specialist
• Jiao Zhao — Psychometric and Quantitative Methods Analyst
• Mingxia Yao — Clinical Psycho-Oncology Specialist
• Yiou Fu — Clinical Research Associate

The primary validation study was conducted within major tertiary oncology and academic medical centers in China and disseminated internationally in the peer-reviewed literature (Asia-Pacific Journal of Oncology Nursing, 2023).

4. Purpose

The development of the Fertility Information Support Scale addresses a long-standing structural deficit in psycho-oncology and supportive cancer care. Although modern guidelines issued by major organizations—such as the American Society of Clinical Oncology (ASCO)—explicitly mandate early clinical discussions regarding therapy-associated gonadotoxicity and fertility preservation, significant implementation barriers persist. Clinicians frequently encounter constraints related to brief consultation times, inadequate knowledge regarding assisted reproductive technology, prioritization of acute tumor management, and discomfort in addressing sensitive reproductive topics. Consequently, a large proportion of young breast cancer patients transition through active treatment without receiving systematic, timely, or comprehensible oncofertility counseling.

Prior measurement instruments developed for this clinical demographic focused almost exclusively on intrapsychic strain or outcome states. For example, established measures such as the Reproductive Concerns After Cancer (RCAC) scale or various fertility intention inventories assess the severity of a patient's fear of infertility, grief over anticipated childlessness, or partner communication strains. While these metrics successfully document psychological morbidity, they fail to evaluate the external, provider-mediated, and health-system variables that give rise to such distress. The purpose of the Fertility Information Support Scale is to evaluate the supportive ecosystem directly. It shifts the analytical perspective from “What level of reproductive distress does the patient exhibit?” to “Has the clinical environment furnished the requisite cognitive facts, affective validation, and interactive agency needed to mitigate reproductive distress?”

In clinical oncology practice, the scale serves as a targeted diagnostic assessment. Administered around the time of surgical planning, medical oncology intake, or prior to the initiation of gonadotoxic chemotherapy, the instrument allows multi-professional care teams (comprising oncologists, oncology nurse navigators, reproductive endocrinologists, and clinical psychologists) to identify precise communicative breakdowns. For instance, if a patient demonstrates adequate cognitive acquisition of medical facts but extremely low emotional support scores, clinical psychologists can intervene to address feelings of alienation, invalidation, or somatic fear. Conversely, low scores on self-advocacy signal an urgent need for nurse-led empowerment strategies that encourage assertive questioning. In research paradigms, the scale serves as an evaluative end point for educational interventions, digital decision aids, multidisciplinary oncofertility navigation programs, and communication-skills training curricula for oncology clinicians.

5. Psychological Construct

The Fertility Information Support Scale operationalizes the construct of fertility information support as a multidimensional, transactional phenomenon. Rather than treating information transmission as a passive, unidirectional transfer of medical data, the construct integrates informational content, interpersonal emotional climate, and the patient's behavioral initiative. Across its 17 items, the scale captures three correlated yet structurally distinct latent dimensions:

1. Cognitive Support

The Cognitive Support dimension measures the objective, informational dimension of care. It evaluates the degree to which patients receive, comprehend, and perceive access to accurate, individualized clinical knowledge regarding their reproductive future. This facet addresses:

• The gonadotoxic mechanisms of specific cancer treatments (e.g., alkylating agents, anthracyclines, ovarian ablation, tamoxifen, and aromatase inhibitors) on ovarian reserve.
• The spectrum of fertility preservation modalities available prior to antineoplastic therapy, including embryo cryopreservation, unfertilized oocyte vitrification, ovarian tissue cryopreservation, and pharmacological ovarian protection using gonadotropin-releasing hormone (GnRH) agonists.
• Clear differentiation between disease-free survival prognostic safety and future pregnancy, debunking common myths that gestation increases breast cancer recurrence rates.
• The clarity, timeliness, and readability of the educational materials provided by the clinical team.

2. Emotional Support

The Emotional Support dimension measures the affective climate established during clinical encounters. Reproductive capacity is deeply intertwined with personal identity, marital stability, existential purpose, and femininity. Discussions regarding potential infertility can trigger intense vulnerability. This subscale assesses whether patients experience:

• Empathetic listening and communicative warmth from attending physicians and nurses.
• Validation of their grief, anxieties, and parenthood desires without experiencing dismissal or minimization.
• A non-judgmental atmosphere where existential concerns regarding childbearing are treated as legitimate health priorities alongside oncological survival.
• Reassurance that their personal values and family-building aspirations are respected in clinical treatment planning.

3. Self-Support

The Self-Support dimension measures patient agency, behavioral activation, and interactive competence within the healthcare environment. Effective information support relies not only on clinician behavior, but also on the patient's capacity to navigate the medical hierarchy. This subscale assesses:

• The patient's proactive initiative in seeking second opinions or consultations with reproductive endocrinology specialists.
• Self-efficacy in articulating fertility desires and initiating challenging dialogues with oncology clinicians.
• The independent utilization of supplementary resources (e.g., reputable medical databases, cancer peer-support organizations, and digital health tools).
• Assertiveness in requesting written documentation, follow-up reproductive hormone testing (e.g., anti-Müllerian hormone [AMH] levels), or family planning referrals.

6. Theoretical Framework

The conceptual framework of the Fertility Information Support Scale is primarily anchored in Social Support Theory, integrated with principles from Lazarus and Folkman's Transactional Model of Stress and Coping.

Social Support Typologies

Social support theory, as operationalized across classical sociological and health psychology literature (e.g., House, 1981; Langford et al., 1997; Hupcey, 1998), classifies interpersonal assistance into functional typologies: informational, emotional, instrumental, and appraisal support. Within the medical setting, informational support involves providing advice, guidance, suggestions, or factual knowledge that a person can use to address situational stressors. Emotional support involves the communication of empathy, caring, love, and trust, providing psychological safety.

The developers of the Fertility Information Support Scale recognized that in high-stakes oncology contexts, informational support cannot be uncoupled from emotional validation. Presenting complex, potentially distressing reproductive statistics to an emotionally overwhelmed patient without affective attunement leads to cognitive overload and cognitive avoidance. Conversely, emotional comfort devoid of concrete, actionable medical guidance leaves the patient unequipped to pursue time-sensitive fertility preservation procedures. The scale unifies these two pillars while introducing the active agent: the individual's internal self-support system.

The Stress-Appraisal Paradigm

Under the transactional stress-coping paradigm (Lazarus & Folkman, 1984), an event is experienced as stressful when appraised as taxing or exceeding an individual's adaptive coping resources. A breast cancer diagnosis represents a primary threat to physical survival; the concurrent threat of premature menopause and involuntary childlessness represents an acute secondary loss. Fertility information support functions as a potent coping resource that directly shapes both primary appraisal (evaluating the personal severity of fertility loss) and secondary appraisal (evaluating available options and resources to preserve fertility).

When the oncology system delivers comprehensive cognitive clarity alongside authentic emotional validation, patients appraise their reproductive risk not as an insurmountable crisis, but as a manageable challenge with defined clinical avenues. This appraisal reduces psychological distress and decision regret. Furthermore, by fostering self-support, the healthcare system enhances the patient's perceived behavioral control (Bandura, 1997), transforming a passive recipient of cancer care into an engaged, empowered agent capable of navigating complex survivorship choices.

7. Validity

The psychometric development and empirical validation of the Fertility Information Support Scale followed established methodological standards for patient-reported outcome measures, including the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) recommendations.

Content Validity and Qualitative Grounding

Initial item generation was directly informed by an extensive qualitative inquiry exploring the lived experiences of young breast cancer survivors regarding fertility information support (Xiao et al., 2023). This qualitative phase identified fundamental disconnects between patient expectations and clinical realities, such as unaddressed fears, paternalistic dismissals, and confusion regarding post-treatment pregnancy safety. A multidisciplinary expert panel encompassing surgical oncologists, gynecologists, reproductive endocrinologists, oncology clinical nurse specialists, and psychometricians subsequently subjected the preliminary pool to a two-round Delphi expert consensus procedure. Experts evaluated each item for conceptual relevance, linguistic clarity, and cultural resonance. Items exhibiting low content validity indices or ambiguous phrasing were systematically revised or excluded.

Item Analysis and Discriminant Power

During preliminary quantitative pilot testing, item discrimination was examined via the critical ratio method (Kelley, 1939). Participants' total scores were categorized into upper and lower 27th percentiles. Independent-sample t-tests revealed that all retained 17 items significantly discriminated between high-scoring and low-scoring cohorts (critical ratios well exceeding the standard psychometric threshold of 3.0, p < 0.001). Corrected item-total correlations were uniformly higher than 0.40, verifying that each item contributed uniquely to the overarching construct without introducing extraneous variance.

Construct and Structural Validity

Construct validity was established through a split-sample structural equation modeling approach. In Sample 1 (used for exploratory factor extraction), items segregated cleanly onto their theoretical dimensions without cross-loadings > 0.40. In Sample 2 (N = 252 reproductive-aged women with breast cancer), confirmatory factor analysis replicated the empirical structure. The three-factor model yielded high parameter loadings across all 17 indicators. Model fit comparisons established that the three-factor model was superior to both a single-factor unidimensional model and an orthogonal model, demonstrating the multi-faceted construct validity of the instrument.

8. Reliability

Reliability refers to the degree to which a measurement instrument is free from random measurement error, yielding reproducible and internally coherent results. The Fertility Information Support Scale demonstrates strong reliability across multiple testing modalities:

Internal Consistency

Internal consistency was estimated using Cronbach's coefficient alpha (α). For the total 17-item scale, Cronbach's α was calculated at 0.82. Within the individual subscales, alpha coefficients were calculated as follows:

• Cognitive Support Subscale: α = 0.86 to 0.89
• Emotional Support Subscale: α = 0.83 to 0.87
• Self-Support Subscale: α = 0.81 to 0.84

These values fall within the target range for clinical psychometrics (0.80 ≤ α ≤ 0.90), demonstrating that the subscales capture coherent constructs without exhibiting excessive item redundancy or collinearity.

Temporal Stability (Test-Retest Reliability)

To establish that the instrument measures a stable attribute rather than transient situational fluctuations in mood, a subset of stable outpatients completed a follow-up assessment two weeks after the primary administration. The two-week test-retest reliability coefficient was r > 0.93 (p < 0.001). This stability demonstrates that the instrument is dependable for longitudinal clinical monitoring, enabling investigators to track changes in perceived support across the disease trajectory—from initial staging through surgery, chemotherapy, radiotherapy, and long-term survivorship.

9. Factor Analysis

The latent architecture of the 17-item scale was examined using a split-sample protocol combining Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA).

Exploratory Factor Analysis (EFA)

An initial sample of reproductive-aged breast cancer patients was evaluated using Principal Component Analysis with oblique rotation to accommodate expected theoretical correlations between dimensions of support. Pre-estimation diagnostics confirmed the suitability of the data for factor extraction:

• Kaiser-Meyer-Olkin (KMO) Measure of Sampling Adequacy exceeded 0.85, confirming substantial sampling adequacy.
• Bartlett's Test of Sphericity was statistically significant (χ², p < 0.001), indicating appropriate inter-item correlation matrices.

Factor retention based on the Kaiser criterion (eigenvalues > 1.0) and visual scree plot inspection revealed a clear three-factor structure accounting for 63.2% of the total cumulative variance. All 17 items exhibited substantial primary factor loadings on their designated latent factors (loadings ranging between 0.54 and 0.88), with no meaningful cross-loadings (< 0.30 on non-target factors).

Confirmatory Factor Analysis (CFA)

The structural model identified in the EFA was tested on an independent validation sample (N = 252 reproductive-aged Chinese breast cancer patients, ages < 49 years) utilizing covariance-based structural equation modeling in AMOS. Multiple model fit indices were evaluated against established thresholds (Hu & Bentler, 1999):

• Comparative Fit Index (CFI): 0.979 (threshold: ≥ 0.95 indicates superior fit)
• Incremental Fit Index (IFI): 0.979 (threshold: ≥ 0.95 indicates superior fit)
• Root Mean Square Error of Approximation (RMSEA): 0.055 (threshold: ≤ 0.06 indicates close approximate fit; 90% CI [0.042, 0.068])
• Standardized Root Mean Square Residual (SRMR): ≤ 0.05

All standardized factor loadings of observed indicators onto their respective latent constructs were statistically significant (p < 0.001), validating the hypothesized 17-item, three-subscale structural configuration.

10. Instrument / Measurement Tool

The following formal specifications characterize the clinical and research administration of the Fertility Information Support Scale:

• Tool Name: Fertility Information Support Scale
• Test Type: Multi-item, self-report psychometric questionnaire (Patient-Reported Outcome Measure [PROM])
• Target Population: Reproductive-aged female patients diagnosed with cancer (specifically validated in breast cancer cohorts aged < 49 years)
• Total Item Count: 17 items
• Structural Subscales:
  • Cognitive Support: Measures reception and comprehension of objective medical facts regarding oncofertility, treatment risks, and preservation options.
  • Emotional Support: Assesses affective safety, empathy, mutual respect, and clinical validation of reproductive concerns.
  • Self-Support: Evaluates personal agency, proactive inquiry, and autonomous information-seeking behavior.
• Administration Modality: Available as a paper-and-pencil instrument or via digital survey platforms (e.g., Questionnaire Star, REDCap)
• Completion Time: Approximately 5 to 8 minutes
• Scoring System: Items are scored along an ordinal Likert-type response scale. Subscale scores are derived by summing raw item scores within each dimension; an overall total support score is generated by calculating the global sum across all 17 items. Higher aggregate scores indicate greater levels of perceived fertility information support.

11. Permissions & Fee and Test Year

The Fertility Information Support Scale was developed and published in 2023 by Yuqiao Xiao and colleagues. The primary psychometric validation study appeared in the open-access publication Asia-Pacific Journal of Oncology Nursing under the governance of Elsevier and the Asian Oncology Nursing Society.

The scale was developed for open non-commercial research, academic inquiry, and clinical quality improvement projects. Clinicians, nurse researchers, and psycho-oncology investigators may utilize the scale without royalty fees, provided full academic citation is accorded to the original publication. For clinical trials sponsored by commercial industry, integration into proprietary digital health applications, or formal foreign language translation and cross-cultural validation initiatives, interested parties are advised to contact the corresponding author directly (Yuqiao Xiao; Email: [email protected]) and consult the publisher's licensing protocols.

12. References

• Bandura, A. (1997). Self-efficacy: The exercise of control. W. H. Freeman.
• Benedict, C., Thom, B., & Kelvin, J. F. (2018). Fertility information needs and concerns post-treatment contribute to lowered quality of life among young adult female cancer survivors. Supportive Care in Cancer, 26(7), 2209–2215. https://doi.org/10.1007/s00520-018-4065-4
• Gorman, J. R., Su, H. I., Pierce, J. P., Roberts, S. C., & Malcarne, V. L. (2014). A multidimensional scale to measure the reproductive concerns of young adult female cancer survivors. Journal of Cancer Survivorship, 8(2), 218–228. https://doi.org/10.1007/s11764-013-0333-3
• House, J. S. (1981). Work stress and social support. Addison-Wesley.
• Hu, L. T., & Bentler, P. M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structural Equation Modeling: A Multidisciplinary Journal, 6(1), 1–55. https://doi.org/10.1080/10705519909540118
• Hupcey, J. E. (1998). Clarifying the social support theory-research linkage. Journal of Advanced Nursing, 27(6), 1231–1240. https://doi.org/10.1046/j.1365-2648.1998.01231.x
• Kelley, T. L. (1939). The selection of upper and lower groups for the validation of test items. Journal of Educational Psychology, 30(1), 17–24. https://doi.org/10.1037/h0057123
• Langford, C. P., Bowsher, J., Maloney, J. P., & Lillis, P. P. (1997). Social support: A conceptual analysis. Journal of Advanced Nursing, 25(1), 95–100. https://doi.org/10.1046/j.1365-2648.1997.1997025095.x
• Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer Publishing Company.
• Lei, J., Li, J., & Xiao, Y. (2022). Summary of the best evidence for fertility guidance in young breast cancer patients. Chinese Journal of Nursing, 57(19), 2268–2275.
• Loren, A. W., Mangu, P. B., Beck, L. N., Brennan, L., Magdalinski, A. J., Partridge, A. H., Quinn, G., Wallace, W. H., & Oktay, K. (2013). Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology, 31(19), 2500–2510. https://doi.org/10.1200/JCO.2013.49.2678
• Partridge, A. H., Gelber, S., Peppercorn, J., Sampson, E., Knudsen, K., Laufer, M., Rosenberg, R., Przypyszny, M., Rein, A., & Winer, E. P. (2004). Web-based survey of fertility issues in young women with breast cancer. Journal of Clinical Oncology, 22(20), 4174–4183. https://doi.org/10.1200/JCO.2004.01.159
• Xiao, Y., Li, J., Lei, J., Han, L., Zhao, J., Yao, M., & Fu, Y. (2023). Fertility Information Support Scale: Development and psychometric evaluation among young breast cancer patients. Asia-Pacific Journal of Oncology Nursing, 10(11), 100313. https://doi.org/10.1016/j.apjon.2023.100313
• Xiao, Y., Li, J., Lei, J., & Han, L. (2023). Qualitative study of the fertility information support experiences of young breast cancer patients. European Journal of Oncology Nursing, 62, 102275. https://doi.org/10.1016/j.ejon.2023.102275

13. Items of the Scale