The authors conclude that the overall rate of documentation is low and results show disparities among specific groups. While greater numbers of discussions may be occurring, there is need to create interventions to improve documentation.
Abstract
Purpose:
The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers.
Methods:
All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist.
Results:
Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% documented referral to a fertility specialist. Records were less likely to contain evidence of infertility risk and FP option discussions for female patients (P = .030 and .004, respectively) and those with breast cancer (P = .021 and < .001, respectively). Records for Hispanic/Latino patients were less likely to contain evidence of infertility risk discussion (P = .037). Records were less likely to document infertility risk discussion, FP option discussion, and fertility specialist referral for patients age ≥ 40 years (P < .001, < .001, and .002, respectively) and those who already had children (all P < .001).
Conclusion:
The overall rate of documentation of discussion of FP is low, and results show disparities among specific groups. Although greater numbers of discussions may be occurring, there is a need to create interventions to improve documentation.
Introduction
Numerous studies have documented the lack of communication about potential threats to fertility or options for fertility preservation between physicians and newly diagnosed patients with cancer of childbearing age. Despite the American Society of Clinical Oncology (ASCO) 2006 guidelines on fertility preservation,1 two 2009 studies suggest rates are suboptimal, with less < 60% of oncologists discussing fertility with patients with cancer of childbearing age and < 40% of treating physicians referring patients interested in fertility preservation to reproductive specialists.2,3 In addition, the ASCO Quality Oncology Practice Initiative (QOPI)4 is the only quality metric that addresses documentation of fertility discussion. Barriers to these discussions have been reported in the literature, including those related to specific patient (eg, unmarried patients or poor prognosis), physician (eg, not comfortable discussing fertility, time constraints, and information overload that may be overwhelming to patient), and institutional characteristics (eg, lack of resources or policy).2,5–7
Advances in reproductive technology have led to the development of fertility preservation methods that may allow patients with cancer to preserve fertility before the initiation of treatment. For male patients, sperm cryopreservation is the only established option with a high likelihood of success.1 Embryo cryopreservation, the fertilization of oocytes with partner or donor sperm through in vitro fertilization (IVF), and oocyte cryopreservation are established methods available for female patients,1,8 with a live birth rate of approximately 50% for embryos and 40% for oocytes.9 There are additional experimental options available that include ovarian and testicular tissue cryopreservation.
The ASCO QOPI,4 an oncology practice self-assessment and improvement program launched in 2006, assesses two fertility-related indicators: documentation of infertility risks discussed before chemotherapy with patients of reproductive age and documentation of fertility preservation options discussed or referral to a specialist. A recent study reported that participation in QOPI was correlated with improvement in measures of clinical performance, such as the introduction of new clinical practices; however, the quality measure of documentation of infertility risk and fertility preservation counseling still remained low.10
This study sought to establish the rates of documentation of discussion of infertility risk, discussion of fertility preservation options, and referral to a fertility specialist in adolescent and young adult (AYA; age 18 to 45 years) patients' medical records at four National Cancer Institute–designated comprehensive cancer centers. By establishing a baseline of the rate and presence of documentation of discussion of infertility risk in patients' medical records, the aim of this study was to make recommendations for future implementation of documentation and processes to improve rates of discussion of fertility preservation.
Methods
Sites of Data Collection
Four cancer center institutions (A, B, C, and D) participated in the study. Institutional review board approval was obtained at each institution. All four institutions were asked to identify and review a random, stratified (by sex and cancer type) selection of 100 patients' medical records that included the four most common cancer types among AYA populations (ie, breast, leukemia/lymphoma, sarcoma, and testicular).11 The overall goal of the study was to abstract a total of 400 records.
Eligibility
Patient record eligibility criteria included new patients who: were diagnosed with breast cancer, leukemia/lymphoma, sarcoma, or testicular cancer in 2011; were between age 18 and 45 years at the time of diagnosis; did not have multiple primary cancers; and were not second-opinion patients.
Measurement of Infertility Risk Discussion
A standardized abstraction form was developed to collect evidence from patients' medical records related to documentation of: risk of infertility, discussion of options, and referral to a specialist (or documentation that none of these was needed [eg, previous tubal ligation]). All encounters were reviewed before the initiation of treatment. Other study variables included cancer institution; specialty of attending physician; patient sex, age, race, and ethnicity; payer status; patient marital status at start of treatment; parity at start of treatment; Eastern Cooperative Oncology Group and/or Karnofsky performance status at start of treatment; cancer type; cancer stage; and treatment type. A diagnosis checklist and treatment checklist developed by the LIVESTRONG Foundation were used to screen patients for risk of infertility.12
Medical Record Abstraction
Methods from the Florida Initiative for Quality Cancer Care13 and QOPI4 were used to develop uniform quality standards for abstraction, abstraction forms, and processes across institutions. Four abstractors (one per institution) were trained via a Web-based synchronous meeting using Adobe Connect and sample records and forms. An abstraction training manual was developed and distributed to each abstractor to ensure consistency in data identification, abstraction, and entry. As part of the training, abstractors reviewed the training manual and conducted a mock medical record review using the abstraction form and deidentified screen shots of patient records. After the training session, each abstractor was provided with a list of numbers created by a randomized number generator to apply to his or her patient records. All abstractors reviewed each patient case through ambulatory care visit notes and determined demographic information as well as information related to fertility. If an abstractor was unclear about how to answer a specific question, he or she was able to consult with the treating physician or primary nurse for further clarification and assistance in response interpretation. All abstractors entered medical record abstraction data into a hard-copy abstraction form and transferred the data via a password-protected Web-based survey to the Moffitt Cancer Center Survey Methods Core. The Survey Methods Core compiled final summaries of the abstraction forms for all sites.
Statistical Analysis
We used descriptive statistics and graphical illustrations to summarize the study patients and the documentation status (yes v no) of three primary fertility-related discussion measurements (a, b, and c). The proportion of documentation, with its 95% CI, was calculated based on the exact binomial distribution. Statistical comparisons across cancer institutions were made using the Pearson χ2 exact test, with Monte Carlo estimation. Logistic regression models and the Wald test were used to estimate odds ratios (ORs) and 95% CIs in selected variables for each of the three fertility-related discussion measurements. The final logistic regression model used backward selection (0.05 removal α), with institute and site variables forced into the model regardless of their statistical significance. In all models, the following variables were removed during model selection: medical oncology, radiation oncology, surgical oncology, pediatrics, stage, sex, payer status, race, ethnicity, marital status, and treatment group. P value of .05 at two-sided test was declared as significant. All analyses were conducted using SAS software (verison 9.3; SAS Institute, Cary, NC).
Results
Among the four cancer centers, 283 total patient medical record reviews were completed, including 100 in breast cancer, 100 in leukemia/lymphoma, 52 in sarcoma, and 31 in testicular cancer. The main reason for not achieving the proposed number of medical record reviews was lack of patients meeting all eligibility criteria, specifically low numbers of records of patients with testicular cancer or sarcoma across all study institutions. Three of the four centers had < 25 eligible records for both testicular cancer and sarcoma. Eligible breast cancer records at each center ranged from 36 to 202, and eligible leukemia/lymphoma records ranged from 40 to 130. When abstracting records of patients with sarcoma or leukemia/lymphoma, an effort was made to abstract an equal number of male and female patients. For the final analysis of the fertility-related discussion measurements (documentation of infertility risk discussion, discussion of preservation options, and referral to a specialist), 52 patients were excluded for the following reasons: not of reproductive age (n = 2), incapable of reproduction (eg, elective tubal ligation or vasectomy; n = 36), unknown reproductive status (n = 1), and declined fertility discussion (n = 13). Detailed patient demographic information for this analytic sample size (n = 231) is listed in Table 1. Female patients accounted for 130 abstracted records (56%). A majority were white (76%), were not Hispanic/Latino (76%), had insurance or managed care (94%), and were married or in a committed relationship (66%).
Table 1.
Demographic and Clinical Characteristics of Patients Whose Medical Records Were Included in Abstractions (N = 231)
| Characteristic | No. | % |
|---|---|---|
| Institution | ||
| A | 71 | 30.7 |
| B | 48 | 20.8 |
| C | 51 | 22.1 |
| D | 61 | 26.4 |
| Cancer site | ||
| Breast | 77 | 33.3 |
| Leukemia/lymphoma | 88 | 38.1 |
| Sarcoma | 41 | 17.7 |
| Testicular | 25 | 10.8 |
| Age at diagnosis, years | ||
| 18-30 | 60 | 26.0 |
| 31-39 | 86 | 37.2 |
| ≥ 40 | 85 | 36.8 |
| Children | ||
| Yes | 110 | 47.6 |
| No | 77 | 33.3 |
| Not recorded | 44 | 19.0 |
| Sex | ||
| Male | 101 | 43.7 |
| Female | 130 | 56.3 |
| Ethnicity | ||
| Hispanic/Latino | 25 | 10.8 |
| Not Hispanic/Latino | 175 | 75.8 |
| Not recorded | 31 | 13.4 |
| Race | ||
| White | 175 | 75.8 |
| Black/African American | 36 | 15.6 |
| Asian | 5 | 2.2 |
| Native American/Pacific Islander | 2 | 0.9 |
| Other | 9 | 3.9 |
| Not recorded | 4 | 1.7 |
| Marital status | ||
| Married/committed relationship | 152 | 65.8 |
| Not married | 67 | 29.0 |
| Not recorded | 12 | 5.2 |
| Payer status | ||
| Insurance/managed care | 217 | 93.9 |
| Self pay | 5 | 2.2 |
| Charity/state sponsored | 9 | 3.9 |
| Disease stage | ||
| 0-2 | 120 | 51.9 |
| 3-4 | 54 | 23.4 |
| Unstaged/NA | 57 | 24.7 |
Abbreviation: NA, not applicable.
Findings from the review of record documentation are shown in Figures 1A to 1C. Overall, 61 patient records (26%) documented discussion of infertility risk, 56 (24%) documented discussion of fertility preservation options, and 31 (13%) documented referral to a fertility specialist.
Figure 1.

Proportion of documentation of infertility risk discussion, fertility preservation option discussion, and referral to fertility specialist by (A) all institutions combined, (B) institution, and (C) cancer site (all institutions combined).
Table 2 lists all demographic variables and the univariable logistic regression models for the three fertility-related discussion measurements. Documentation of discussion of infertility risk was significantly more likely in records of patients with sarcoma or testicular cancer, when compared with records of those with breast cancer; in the records of patients age 18 to 30 and 31 to 39 years, when compared with records of patients age ≥ 40 years; and in the records of patients with ethnicity not documented, when compared with Hispanic patients' records. In addition, discussion of infertility risk was significantly less likely to be documented in female patients' records and in records of patients with at least one child or no information about children. Documentation of discussion of fertility preservation options was significantly more likely in records of patients with testicular cancer, when compared with records of those with breast cancer, and in the records of patients age 18 to 30 and 31 to 39 years, when compared with records of patients age ≥ 40 years. This fertility-related measure was also significantly less likely to be documented in female patients' records and in records of patients with at least one child or no information about children. Documentation of discussion of referral to a fertility specialist was significantly more likely in records of patients age 18 to 30 and 31 to 39 years, when compared with records of patients age ≥ 40 years. For this same measure, documentation was significantly less likely in records of patients with at least one child or no information about children.
Table 2.
Univariable Logistic Regression Models for Documentation of Infertility Risk Discussion, Fertility Preservation Option Discussion, and Referral to Fertility Specialist
| Variable | Infertility Risk |
Preservation Options |
Referral to Specialist |
||||||
|---|---|---|---|---|---|---|---|---|---|
| OR | 95% CI | P | OR | 95% CI | P | OR | 95% CI | P | |
| Institution | < .001 | .003 | .148 | ||||||
| A | Ref | Ref | Ref | ||||||
| B | 0.31 | 0.1 to 0.96 | 0.37 | 0.13 to 1.04 | 0.31 | 0.07 to 1.34 | |||
| C | 2.77 | 1.28 to 6.01 | 2.21 | 1.02 to 4.76 | 1.66 | 0.65 to 4.23 | |||
| D | 1.13 | 0.52 to 2.48 | 0.66 | 0.29 to 1.52 | 0.93 | 0.35 to 2.49 | |||
| Cancer site | 0.21 | < .001 | .310 | ||||||
| Breast | Ref | Ref | Ref | ||||||
| Lymphoma/leukemia | 1.88 | 0.87 to 4.07 | 1.84 | 0.83 to 4.09 | 1.39 | 0.52 to 3.72 | |||
| Sarcoma | 3.39 | 1.42 to 8.12 | 1.69 | 0.64 to 4.44 | 2.39 | 0.81 to 6.98 | |||
| Testicular | 3.55 | 1.3 to 9.69 | 8.54 | 3.09 to 23.61 | 2.52 | 0.74 to 8.57 | |||
| Age at diagnosis, years | < .001 | < .001 | .002 | ||||||
| ≥ 40 | Ref | Ref | Ref | ||||||
| 18-30 | 14.64 | 5.36 to 40.01 | 14.87 | 5.04 to 43.86 | 20.89 | 3.74 to 116.76 | |||
| 31-39 | 6.41 | 2.4 to 17.13 | 7.51 | 2.6 to 21.71 | 11.27 | 2.02 to 62.93 | |||
| Children | < .001 | < .001 | < .001 | ||||||
| No | Ref | Ref | Ref | ||||||
| Yes | 0.21 | 0.11 to 0.4 | 0.19 | 0.09 to 0.38 | 0.09 | 0.03 to 0.25 | |||
| Not recorded | 0.08 | 0.03 to 0.27 | 0.09 | 0.03 to 0.30 | 0.12 | 0.03 to 0.48 | |||
| Sex | .030 | .004 | .343 | ||||||
| Male | Ref | Ref | Ref | ||||||
| Female | 0.52 | 0.29 to 0.94 | 0.41 | 0.22 to 0.75 | 0.70 | 0.33 to 1.47 | |||
| Ethnicity | .037 | .147 | .262 | ||||||
| Hispanic/Latino | Ref | Ref | Ref | ||||||
| Not Hispanic/Latino | 1.57 | 0.53 to 4.67 | 3.18 | 0.81 to 12.56 | 0.89 | 0.26 to 3.07 | |||
| Not documented | 3.96 | 1.13 to 13.88 | 4.59 | 1 to 21.15 | 1.97 | 0.48 to 8.12 | |||
| Race | .268 | .326 | .701 | ||||||
| White | Ref | Ref | Ref | ||||||
| Black | 0.71 | 0.29 to 1.71 | 0.65 | 0.26 to 1.64 | 1.45 | 0.55 to 3.82 | |||
| Other | 1.89 | 0.73 to 4.92 | 1.69 | 0.64 to 4.50 | 1.36 | 0.39 to 4.80 | |||
| Marital status | .340 | .340 | .502 | ||||||
| Married/committed relationship | Ref | Ref | Ref | ||||||
| Not married | 1.33 | 0.71 to 2.50 | 1.11 | 0.58 to 2.13 | 1.32 | 0.6 to 2.90 | |||
| Not documented | 0.37 | 0.06 to 2.29 | 0.12 | 0.01 to 2.31 | 0.26 | 0.01 to 5.08 | |||
| Payer status | .750 | .339 | .599 | ||||||
| Insurance/managed care | Ref | Ref | Ref | ||||||
| Self pay | 1.99 | 0.33 to 12.11 | 2.14 | 0.35 to 13.02 | 2.05 | 0.26 to 16.08 | |||
| Charity/state sponsored | 0.93 | 0.20 to 4.33 | 0.16 | 0.01 to 3.21 | 0.32 | 0.02 to 6.64 | |||
| Stage | .930 | .083 | .498 | ||||||
| 0-2 | Ref | Ref | Ref | ||||||
| 3-4 | 1.07 | 0.52 to 2.19 | 0.68 | 0.32 to 1.44 | 0.82 | 0.33 to 2.06 | |||
| Unstaged/NA | 0.91 | 0.44 to 1.87 | 0.4 | 0.17 to 0.91 | 0.55 | 0.20 to 1.50 | |||
Abbreviations: NA, not applicable; OR, odds ratio; Ref, referent.
Table 3 summarizes the multivariable logistic regression models for the three fertility-related discussion measurements. In this analysis, only institution, cancer site, age at diagnosis, and children (yes v no) were significant. Records of patients with testicular cancer were significantly more likely to have documentation of discussion of fertility preservation options than records of those with breast cancer. Records of patients age 18 to 30 years were significantly more likely to have documentation of discussion of infertility risk, discussion of fertility preservation options, and referral to a fertility specialist. Having at least one child significantly decreased the likelihood of documentation of discussion of infertility risk, discussion of fertility preservation options, and referral to a fertility specialist.
Table 3.
Multivariable Logistic Regression Models for Documentation of Infertility Risk Discussion, Fertility Preservation Option Discussion, and Referral to Fertility Specialist
| Variable | Infertility Risk |
Preservation Options |
Referral to Specialist |
||||||
|---|---|---|---|---|---|---|---|---|---|
| OR | 95% CI | P | OR | 95% CI | P | OR | 95% CI | P | |
| Institution | < .001 | .014 | .276 | ||||||
| A | Ref | Ref | Ref | ||||||
| B | 0.51 | 0.13 to 2.02 | 0.56 | 0.15 to 2.07 | 0.34 | 0.06 to 2.06 | |||
| C | 5.95 | 2.1 to 16.84 | 3.84 | 1.34 to 10.97 | 1.75 | 0.55 to 5.60 | |||
| D | 2.14 | 0.8 to 5.78 | 1.00 | 0.35 to 2.84 | 1.53 | 0.45 to 5.17 | |||
| Cancer site | .642 | .003 | .432 | ||||||
| Breast | Ref | Ref | Ref | ||||||
| Lymphoma/leukemia | 0.72 | 0.25 to 2.08 | 0.59 | 0.19 to 1.82 | 0.31 | 0.08 to 1.26 | |||
| Sarcoma | 1.26 | 0.37 to 4.24 | 0.39 | 0.10 to 1.61 | 0.34 | 0.07 to 1.77 | |||
| Testicular | 1.33 | 0.34 to 5.14 | 4.81 | 1.21 to 19.24 | 0.43 | 0.08 to 2.39 | |||
| Age at diagnosis, years | < .001 | < .001 | .013 | ||||||
| ≥ 40 | Ref | Ref | Ref | ||||||
| 18-30 | 21.12 | 5.78 to 77.21 | 23.08 | 5.54 to 96.11 | 31.09 | 3.14 to 307.54 | |||
| 31-39 | 9.42 | 3.07 to 28.9 | 12.71 | 3.59 to 45.04 | 19.48 | 2.27 to 167.31 | |||
| Children | .003 | .002 | < .001 | ||||||
| No | Ref | Ref | Ref | ||||||
| Yes | 0.38 | 0.16 to 0.86 | 0.29 | 0.12 to 0.7 | 0.1 | 0.03 to 0.35 | |||
| Not recorded | 0.11 | 0.03 to 0.47 | 0.10 | 0.02 to 0.44 | 0.15 | 0.03 to 0.82 | |||
Abbreviations: OR, odds ratio; Ref, reference.
Discussion
Results of this study suggest that rates of documentation of discussion of infertility risk, discussion of fertility preservation options, and referral to a fertility specialist were low across all four institutions. There was variability in documentation rates across institutions; however, even if all institutions performed as well as the highest site, the rate would still be suboptimal. Although the 2013 ASCO guideline update states that patients should be not excluded from consideration for discussion of fertility preservation for any reason, including parity, prognosis, age, and socioeconomic status,14 the results of this study show particularly low rates in at least one of three fertility-related discussion measurements (documentation of discussion of infertility risk, discussion of fertility preservation options, and/or referral to a fertility specialist) among female patients, those with breast cancer, those age ≥ 40 years, Hispanic/Latino patients, and patients who already had children.
Several studies have reported lower rates of fertility discussion and satisfaction with the discussion among female patients with cancer as compared with male patients,15,16 which can be attributed to barriers such as higher cost of fertility preservation options for women,6 fear of cancer treatment delays while exploring fertility preservation,7 and provider lack of knowledge regarding female fertility preservation options and local availability or cost of these options.17 Research suggests infertility is a major concern for female breast cancer survivors.18 In fact, female cancer survivors of all cancer types may experience higher levels of psychological distress regarding future infertility when compared with male survivors.19,20 In addition, women with breast cancer have fertility-specific needs and concerns that are often not addressed before initiation of treatment.21 Most importantly, female survivors who previously received fertility counseling have less regret and improved quality of life than those who did not receive this information.22
ASCO guidelines recommend discussion of fertility preservation with all patients of reproductive age, defined as age 18 to 45 years. The results of this study showed that patients age ≥ 40 years had lower documentation rates than those age < 40 years. Although birth rates for women age > 40 years are low, with a 5% chance per IVF cycle,23 female patients age > 40 years may still benefit from fertility counseling, even if they choose not to pursue fertility preservation. Studies suggest that women who received fertility counseling, regardless of the outcome, benefited from the knowledge and informed decision-making process.24 For women age ≥ 40 years who desire fertility preservation, it is crucial to start this discussion before the initiation of treatment, because these women have a 90% chance of amenorrhea, often irreversible, subsequent to multiagent chemotherapy.25,26 An increase in age may cause a decline in semen volume, sperm motility, and sperm morphology for men27; however, there is no defined upper age limit for a man's ability to produce a child. For men age > 40 years compared with younger men, chemotherapy may be more damaging to sperm production,28 which reinforces the need for discussion of infertility risk before treatment. The low rates of fertility discussion among patients age ≥ 40 years at the institutions participating in this study suggest that health care providers may not initiate fertility discussion if they perceive the patient is not of childbearing age. However, health care providers should not presume a patient would be uninterested in fertility preservation or other family-building options, such as adoption or surrogacy, based on their age. In addition, patients who already have children may not have completed their families and may still desire the ability to conceive after treatment. One study showed that 25% of men with children considered the capacity for biologic paternity a significant factor in their quality of life.29
The literature has extensively outlined the prevalence of health care disparities among minority/ethnic populations, such as an increased risk for comorbidities, obstacles to receiving care, lower quality of care, and lack of insurance.30–32 Regarding fertility discussion, one study found that the odds of fertility preservation counseling referral were 2× higher for white women compared with African American women, and none of the eligible Hispanic patients in the study received a referral.33 Therefore, it is not surprising that Hispanic/Latino patient records in this study were significantly less likely to contain documentation of discussion of infertility risk. Health care providers may be reluctant to discuss infertility risk if they perceive the patient does not have insurance and/or cannot afford the procedure, especially in conjunction with the cost of cancer treatments.5,7,34 That Hispanic/Latino patients are likely to be uninsured or underinsured is documented in the literature.35,36 Other potential reasons for the disparity in this population may be language or perceived religious barriers.37,38
The results of this study are consistent with a recently published study that assessed practice changes in QOPI scores over the span of 4 years; results showed a substantial gap in performance, which failed improve much over time, regarding documentation of appropriate smoking cessation counseling, evaluation of infertility risk, and, in particular, fertility preservation counseling.10 Several provider barriers have been identified in the literature, such as lack of knowledge, perception that patients could/should not delay treatment, and perception that patients were not interested if they did not initiate the discussion.5,6 Overcoming these barriers, however, may not significantly improve fertility discussion unless an institution implements a structured system for addressing and tracking fertility discussion and referral to a fertility specialist. One study reported a nine-fold increase in patient calls over a 12-month period after the development of a referral system to inform patients and direct them to fertility services.39
In addition to the creation of a systematic referral system to improve both the quality of care and documentation, other cancer centers have reported a variety of strategies to increase adherence to quality care initiatives. Strategies include development of specialized information services configurations40 through electronic records (eg, popups), although one study showed no improvement in fertility documentation with the creation of a specialized chemotherapy consent form.41 Participation in QOPI10 has shown significant improvement in performance measures such as the documentation of discussion of fertility preservation and referrals. An examination of the Fertile Hope Centers of Excellence showed that the presence of an internal champion, an affiliation with reproductive specialists, and resource sharing were positive factors in ensuring that the reproductive health needs of AYA populations were met.42
It should be noted that actual rates of discussion are likely higher than rates of documentation. One study suggests the disparity between the performance of a clinical conversation and the documentation of it varies from 5% to 26% percent.43–45 This creates a phenomenon known as false negativity in abstraction studies and leads to underestimation of quality of patient care. Finally, documentation of counseling in the medical record provides evidence that can reduce malpractice liability for the physician.46
The study results must be viewed in light of several limitations. Although the study aimed to recruit 25 records per cancer site at each institution, the overall sample size was ultimately lower, particularly for records of patients with testicular cancer or sarcoma. In addition, lack of documentation in the medical record may not reflect actual practice; however, the purpose of this study was to hold a mirror up to current fertility discussion documentation practices and encourage providers to improve their rates of documentation.
In conclusion, the rate of documentation of discussion of infertility risk, discussion of fertility preservation options, and referral to a fertility specialist before initiation of therapy among AYA patients is low, particularly among women with breast cancer, Hispanic/Latino patients, patients age ≥ 40 years, and patients with children. Although greater numbers of discussions may be occurring, it is difficult to evaluate new interventions that may help meet this critical need for this underserved AYA group without documentation in the medical record as a reflection of practice. Rates may improve with increased provider education, other national and local intervention efforts to raise awareness, and implementation of structured systems to inform patients and refer them to fertility specialists as well as implementation of institutional policies. A more in-depth understanding of the low rates of documentation among Hispanic/Latino patients is needed.
Acknowledgment
Supported by the LIVESTRONG Foundation.
Authors' Disclosures of Potential Conflicts of Interest
Disclosures provided by the authors are available with this article at jop.ascopubs.org.
Author Contributions
Conception and design: Gwendolyn P. Quinn, Marla L. Clayman, Joanne Kelvin, Sarah R. Arvey, Ji-Hyun Lee, Joyce Reinecke, Ivana Sehovic, Paul B. Jacobsen, Luis Gonzalez, Susan T. Vadaparampil, M. Catherine Lee, Anna Franklin, William J. Fulp, Brandon Hayes-Lattin
Provision of study materials or patients: M. Catherine Lee
Collection and assembly of data: Gwendolyn P. Quinn, Rebecca G. Block, Marla L. Clayman, Joanne Kelvin, Sarah R. Arvey, Ji-Hyun Lee, Joyce Reinecke, Ivana Sehovic, Paul B. Jacobsen, Luis Gonzalez, Susan T. Vadaparampil, Christine Laronga, Susan Eggly, Bijal Shah, Brandon Hayes-Lattin
Data analysis and interpretation: All authors
Manuscript writing: All authors
Final approval of manuscript: All authors
AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
If You Did Not Document It, It Did Not Happen: Rates of Documentation of Discussion of Infertility Risk in Adolescent and Young Adult Oncology Patients' Medical Records
The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or jop.ascopubs.org/site/misc/ifc.xhtml.
Gwendolyn P. Quinn
No relationship to disclose
Rebecca G. Block
No relationship to disclose
Marla L. Clayman
Research Funding: Novo Nordisk (Inst), GlaxoSmithKline (Inst)
Joanne Kelvin
No relationship to disclose
Sarah R. Arvey
No relationship to disclose
Ji-Hyun Lee
No relationship to disclose
Joyce Reinecke
No relationship to disclose
Ivana Sehovic
No relationship to disclose
Paul B. Jacobsen
Consulting or Advisory Role: Onyx Pharmaceuticals, Philips Healthcare
Research Funding: Pfizer
Travel, Accommodations, Expenses: Onyx Pharmaceuticals
Damon Reed
Consulting or Advisory Role: EMD Serrano
Luis Gonzalez
No relationship to disclose
Susan T. Vadaparampil
No relationship to disclose
Christine Laronga
Honoraria: Genomic Health
Travel, Accommodations, Expenses: Genomic Health
M. Catherine Lee
Consulting or Advisory Role: Medtronic (I)
Julio Pow-Sang
No relationship to disclose
Susan Eggly
No relationship to disclose
Anna Franklin
No relationship to disclose
Bijal Shah
Consulting or Advisory Role: Celgene
Speakers' Bureau: Celgene, Spectrum Pharmaceuticals, Pharmacyclics
Research Funding: Seattle Genetics (Inst)
William J. Fulp
No relationship to disclose
Brandon Hayes-Lattin
No relationship to disclose
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