Abstract
Background
Fertility of adolescents and young adult (AYA) cancer patients can be threatened by treatments, but little is known about the extent to which providers discuss this with patients or recommend fertility preservation, or patient and physician characteristics associated with these interactions.
Methods
Questionnaires from 459 AYA cancer patients diagnosed 2007-2008 and recruited through seven U.S. population-based cancer registries were analyzed in sex-specific multivariable models. We assessed characteristics associated with not discussing therapy effects on fertility or fertility preservation options, and not making fertility preservation arrangements.
Results
Males without a medical oncologist were more likely not to be told that therapy might affect fertility than those with a medical oncologist (male odds ratio [OR]=2.28; 95% confidence interval [95%CI]=1.03, 5.00). Individuals without insurance (male OR=2.91; 95%CI 1.41, 5.91; female OR=5.46; [95%CI] = 1.59, 18.72), raising children <18 years old, and, among males only, who received treatment posing no or low fertility risk (OR=3.39; 95%CI=1.60, 7.16) were more likely not to discuss fertility preservation with providers. Finally, among males, those without a college degree (OR=1.98; 95%CI=1.00, 3.97), lacking private insurance ([OR]=2.97; [95%CI]=1.16, 7.63), and raising children <18 years old (OR=3.53, 95%CI=1.63, 7.65) were more likely to not make fertility preservation arrangements; too few females had made fertility preservation arrangements for similar analyses.
Conclusions
Discussion and action surrounding fertility preservation for AYA cancer patients are associated with medical factors, patient socioeconomic and child-rearing status. These results highlight the need for insurance coverage for fertility preservation and increased awareness of fertility preservation options.
INTRODUCTION
Among the most important challenges faced by adolescent and young adult (AYA) cancer survivors is the toxic effect of cancer therapy on future fertility. Research consistently shows that fertility preservation is an important issue for this population.1-5 In 2006, the American Society of Clinical Oncology recommended that oncologists discuss the possibility of infertility with reproductive-age cancer patients and offer referral for fertility preservation consultation and therapy.6 Despite these guidelines, referrals are inconsistently made, even at large multidisciplinary institutions, and many reproductive-age patients still start treatment without discussion of, or opportunity for, fertility preservation.7-10 Nearly half of oncologists at one large university medical center reported never referring patients for fertility consultation7 and 30% to 60% of United States and the United Kingdom survivors do not recall receiving information at diagnosis from their health care team about the risks of cancer treatment to fertility.5,11, 2,9,10 Only one-half of AYA male cancer survivors recalled being given the option of banking sperm.2,10
Few studies have examined whether characteristics of AYA cancer patients or their health care providers are associated with fertility counseling or making arrangements for fertility preservation.12-14 Studies that have considered these associations suggest that socio-demographic characteristics (sex13, age12, and education12) are associated with fertility preservation. However, only one study included males and females with the same cancer types13, and no previous US population-based studies of fertility preservation counseling among AYAs with cancer have been published. We sought to address these gaps by examining the extent of provider-based fertility discussions and factors associated with these discussions using data from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) Study.14
METHODS
The AYA HOPE study design, methods, and recruitment have been previously published.14 Briefly, eligible patients were residents of seven geographically-defined U.S. regions covered by the National Cancer Institute’s (NCI) Surveillance, Epidemiology and End- Results (SEER) Program, and were aged 15-39 when diagnosed with germ cell tumor (GCT), non-Hodgkin lymphoma (NHL), Hodgkin lymphoma (HL), acute lymphocytic leukemia (ALL), or sarcoma (Ewing’s sarcoma, osteosarcoma, or rhabdomyosarcoma) between July 1, 2007 and October 31, 2008.14 Of the 1,309 eligible patients alive at the start of recruitment, 524 completed the baseline questionnaire 6-14 months after diagnosis, and medical record data were abstracted for 490 (Figure 1, Supporting Information). Eighty-nine percent (n=465) of the 524 patients completed a self-administered follow-up survey 15-35 months after diagnosis in which fertility preservation questions were asked. All patients provided informed consent. This analysis is based on 459 patients for whom follow-up self-administered questionnaire data were available for all three fertility preservation questions. Of the 6 patients who did not answer all three fertility preservation questions, 1 did not answer any of the questions, 4 answered only 1 question, and 1 answered two questions.
Questions on Fertility Preservation Counseling and Actions in the Follow-up Survey
Receipt of counseling about the potential impact of cancer treatment on future fertility was assessed as follows: “Have you ever been told that your cancer treatments may affect your fertility (i.e., your ability to have your own biological children)?” (“yes, no”). Participants indicated whether they had been counseled about fertility preservation options by responding to the question, “Did a healthcare professional involved in your cancer care talk with you about options to preserve your fertility (e.g., sperm banking or freezing of eggs, embryos, or ovarian tissue) before you started cancer treatment?” (“yes, no, I don’t remember”). Action taken with the intention of preserving fertility was assessed with the question, “Did you make arrangements for any type of fertility preservation?” (“yes, no”).
Those patients who reported that they did not make arrangements for fertility preservation were asked to agree or disagree with one or more of 7 possible reasons for not making arrangements: “I was too young / old to consider this”, “I was not aware of my options”, “It was too expensive or insurance didn’t cover it”, “I did not want to delay starting my cancer treatments”, “My doctor advised me not to delay starting my cancer treatments”, “I was worried about effects of my cancer or its treatment on a future child”, “I do not want to have biological children in the future”, and “Other (please describe)”.
Demographic and Clinical Factors
Patient demographic characteristics were obtained from SEER (age, sex, and diagnosis) and the baseline AYA HOPE survey (race/ethnicity, education, insurance status, and responsibility for raising children under age 18). No data were collected specifically on whether the patient had biologic children. Medical records from each patient's health care facilities were abstracted to obtain tumor stage, comorbidities, treatment, and provider characteristics. We used staging, treatment information, patient age, sex, and cancer type to construct a variable reflecting the gonadotoxicity potential of the treatment regimen (“treatment fertility risk” (TFR)) using an Oncofertility Consortium algorithm based on evidence published prior to 2009 (Figure 2, Supporting Information). 15 Patients were classified as having “none or low” vs. “intermediate or high” vs. “unknown/missing” treatment fertility risk. The latter group consisted of patients for whom we had treatment information but could not be otherwise classified based on the Oncofertility Consortium criteria or more recent research (n=88) and patients for whom no medical record data were available (n=29).
Statistical Analysis
All analyses were stratified by sex. We calculated the percentages of patients reporting each possible response for each fertility preservation outcome. To measure the association of characteristics with 1) not being told cancer treatment may affect fertility, 2) not discussing fertility preservation with a health care provider, and 3) not making fertility preservation arrangements, we fit multivariable logistic regression models to estimate odds ratios (ORs) and 95% confidence intervals (95% CIs). The characteristics of interest were race/ethnicity, whether the patient was raising a child <18 years of age at home, TFR, whether a medical oncologist (including pediatric oncologist) participated in the patient’s care, diagnosis year, and whether the patient had at least a college education. All models were adjusted for patient age at diagnosis.
Analyses of the reported reasons for not making arrangements for fertility preservation were restricted to patients who reported not making arrangements (196 males, 164 females). We grouped the reasons into three categories: personal situations (too old/too young, didn’t want biological children), access issues (unaware of options, high cost/lack of insurance coverage), and health-related concerns (did not want to delay treatment, advised not to delay treatment, worried about cancer effects on future children). A patient thus could be classified as reporting a “Personal Situation,” “Access Issue,” a “Health Concern,” or any combination of the three.
RESULTS
Most patients were male, non-Hispanic white, had private insurance, had no comorbid conditions, were seen by a medical oncologist (including pediatric oncologists, who saw 9 female and 14 male patients), and were not raising children under 18 years of age (Table 1). Among the relatively large proportion of male patients who were not seen by a medical oncologist, nearly all (90%) had GCT. Over 80% were ≥21 years of age at diagnosis. GCTs were the most common malignancy among male patients, whereas HL was the most common among female patients. Over half of the male patients and approximately 17% of the female patients were classified as being at intermediate/high TFR.
Table 1.
Selected Characteristics of AYA Cancer Patients, AYA HOPE Study
| Male (n=283) |
Female (n=176) |
|||
|---|---|---|---|---|
| Characteristic | N | (%) | N | (%) |
| Age at Diagnosis (years) | ||||
| 15-17 | 18 | (6.4) | 13 | (7.4) |
| 18-20 | 26 | (9.2) | 18 | (10.2) |
| 21-29 | 112 | (39.6) | 68 | (38.6) |
| 30-39 | 127 | (44.9) | 77 | (43.8) |
| Cancer type | ||||
| Acute Lymphoblastic Leukemia | 7 | (2.5) | 10 | (5.7) |
| Germ Cell | 159 | (56.2) | 20 | (11.4) |
| Hodgkin Lymphoma | 51 | (18.0) | 79 | (44.9) |
| Non-Hodgkin Lymphoma | 52 | (18.4) | 58 | (33.0) |
| Sarcoma | 14 | (5.0) | 9 | (5.1) |
| Year of Diagnosis | ||||
| 2007 | 90 | (31.8) | 61 | (34.7) |
| 2008 | 193 | (68.2) | 115 | (65.3) |
| Race/Hispanic Ethnicity | ||||
| Hispanic | 61 | (21.6) | 30 | (17.0) |
| White, Non-Hispanic | 176 | (62.2) | 100 | (56.8) |
| Black, Non-Hispanic | 17 | (6.0) | 21 | (11.9) |
| Other, Non-Hispanic | 29 | (10.3) | 25 | (14.2) |
| Education | ||||
| Non-college Graduate | 159 | (56.2) | 90 | (51.1) |
| College Graduate or higher |
123 | (43.5) | 86 | (48.9) |
| Missing | 1 | (0.4) | 0 | (0.0) |
|
Raising Child(ren) under
age 18 |
||||
| No | 179 | (63.3) | 99 | (56.3) |
| Yes | 103 | (36.4) | 77 | (43.8) |
| Missing | 1 | (0.4) | 0 | (0.0) |
|
Health insurance at
diagnosis |
||||
| Private/HMO/IPA | 206 | (72.8) | 132 | (75.0) |
| Government | 43 | (15.2) | 31 | (17.6) |
| None | 13 | (4.6) | 5 | (2.8) |
| Missing | 21 | (7.4) | 8 | (4.6) |
| # Comorbid conditions | ||||
| None | 209 | (83.9) | 126 | (71.6) |
| One | 47 | (16.6) | 26 | (14.8) |
| Two+ | 27 | (9.5) | 24 | (13.6) |
|
At least one provider a
medical oncologist |
||||
| Yes | 184 | (65.0) | 155 | (88.1) |
| No | 76 | (26.9) | 15 | (8.5) |
| Missing | 23 | (8.1) | 6 | (3.4) |
|
Treatment fertility risk
level |
||||
| None/Low | 61 | (21.6) | 95 | (54.0) |
| Intermediate/High | 157 | (55.5) | 29 | (16.5) |
| Unknown/Missing | 65 | (22.9) | 52 | (29.5) |
Fertility Discussions: Cancer Therapy Affecting Fertility
Males
Overall, 80% of males reported being told that cancer therapy might affect fertility (Table 2). Males raising children, with two or more comorbid conditions, with no medical oncologist participating in their care, diagnosed in 2007 or who were diagnosed with either lymphoma, ALL or sarcoma, were less likely to be told that cancer therapy might affect their fertility. In multivariable analyses (Table 3), males with unknown TFR were more likely not to be told that cancer might affect fertility ([OR] = 2.73; [95%CI] = 1.09, 6.86), and males who did not consult a medical oncologist were twice as likely to not be told that therapy might affect fertility ([OR] =2.28, [95%CI] = 1.03, 5.00).
Table 2.
Characteristics of AYA Patients Told Cancer Therapy May Affect Fertility, Discussed Fertility Preservation Options Before Starting Cancer Treatment, and Made Arrangements for Fertility Preservation, by Sex, AYA HOPE Study
| Male (n=283) | Female (n=176)** | |||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Was Told | Discussed | Made Arrangement |
Was Told | Discussed | ||||||
|
| ||||||||||
| Characteristic | N | (%)* | N | (%) | N | (%) | N | (%) | N | (%) |
| Overall | 225 | 79.5 | 201 | 71 | 87 | (30.7) | 130 | (73.9) | 60 | 34.1 |
|
Age at Diagnosis
(years) |
||||||||||
| 15-17 | 11 | (61.1) | 9 | (50.0) | 6 | (33.3) | 8 | (61.5) | 3 | (23.1) |
| 18-20 | 26 | (100.0) | 21 | (80.8) | 15 | (57.7) | 12 | (66.7) | 6 | (33.3) |
| 21-29 | 93 | (83.0) | 89 | (79.5) | 37 | (33.0) | 55 | (80.9) | 26 | (38.2) |
| 30-39 | 95 | (74.8) | 82 | (64.6) | 29 | (22.8) | 55 | (71.4) | 25 | (32.5) |
| Cancer type | ||||||||||
| Germ Cell | 131 | (82.4) | 126 | (79.3) | 53 | (33.3) | 13 | (65.0) | 5 | (25.0) |
| Hodgkin Lymphoma | 43 | (84.3) | 34 | (66.7) | 21 | (41.2) | 62 | (78.5) | 34 | (43.0) |
| Non-Hodgkin Lymphoma | 36 | (69.2) | 27 | (51.9) | 10 | (19.2) | 41 | (70.7) | 18 | (31.0) |
| ALL and Sarcoma | 15 | (71.4) | 14 | (82.4) | 3 | (14.3) | 14 | (73.7) | 3 | (16.7) |
| Year of Diagnosis | ||||||||||
| 2007 | 66 | (73.3) | 52 | (57.8) | 19 | (21.1) | 38 | (62.3) | 11 | (18.0) |
| 2008 | 159 | (82.4) | 149 | (77.2) | 68 | (35.2) | 92 | (80.0) | 49 | (42.6) |
|
Race/Hispanic
Ethnicity |
||||||||||
| Hispanic | 53 | (86.9) | 47 | (77.1) | 20 | (32.8) | 18 | (60.0) | 7 | (23.3) |
| White, Non-Hispanic | 138 | (78.4) | 130 | (73.9) | 58 | (33.0) | 80 | (80.0) | 35 | (35.0) |
| Black, Non-Hispanic | 10 | (58.8) | 7 | (41.2) | 0 | (0.0) | 13 | (61.9) | 4 | (19.1) |
| Other, Non-Hispanic | 24 | (82.8) | 17 | (58.6) | 9 | (31.0) | 19 | (76.0) | 14 | (56.0) |
| Education | ||||||||||
| Non-college Graduate | 81 | (77.9) | 65 | (62.5) | 18 | (17.3) | 33 | (66.0) | 12 | (24.0) |
| College Graduate or higher |
96 | (81.4) | 91 | (77.1) | 44 | (37.3) | 62 | (79.5) | 32 | (41.0) |
|
Raising child(ren)
under age 18 |
||||||||||
| No | 152 | (84.9) | 139 | (77.7) | 74 | (41.3) | 73 | (73.7) | 44 | 44.4 |
| Yes | 73 | (70.9) | 61 | (59.2) | 13 | (12.6) | 57 | (74.0) | 16 | 20.8 |
|
Health insurance at
diagnosis |
||||||||||
| Private/HMO/IPA | 163 | (79.1) | 154 | (74.8) | 72 | (35.0) | 101 | (76.5) | 51 | 38.6 |
| Government | 34 | (79.1) | 23 | (53.5) | 6 | (14.0) | 19 | (61.3) | 2 | 6.5 |
| None | 11 | (84.6) | 6 | (46.2) | 2 | (15.4) | 4 | (80.0) | 2 | 40.0 |
| # comorbid conditions | ||||||||||
| None | 169 | (80.9) | 157 | (75.1) | 70 | (33.5) | 93 | (73.8) | 44 | (34.9) |
| One | 39 | (83.0) | 29 | (61.7) | 14 | (29.8) | 20 | (76.9) | 9 | (34.6) |
| Two+ | 17 | (63.0) | 15 | (55.6) | 3 | (11.1) | 17 | (70.8) | 7 | (29.2) |
|
At least one provider a
medical oncologist |
||||||||||
| No | 57 | (75.0) | 56 | (73.7) | 17 | (23.4) | 9 | (60.0) | 6 | (40.0) |
| Yes | 149 | (81.0) | 124 | (67.4) | 62 | (33.7) | 117 | (75.5) | 51 | (32.9) |
|
Treatment fertility risk
level |
||||||||||
| None/Low | 45 | (73.8) | 29 | (47.5) | 11 | (18.0) | 78 | (82.1) | 37 | (39.0) |
| Intermediate/High | 130 | (82.8) | 121 | (77.1) | 49 | (31.2) | 22 | (75.9) | 9 | (31.0) |
| Unknown/Missing | 50 | (76.9) | 51 | (78.4) | 27 | (41.5) | 30 | (57.7) | 14 | (26.9) |
Row percentages show the proportion of persons with each level of a characteristic (far left cell in same row) that reported the fertility preservation related item for the corresponding column
Too few women made fertility preservation arrangements to report stratified results
Table 3.
Association between AYA cancer patient characteristics and treatment-related fertility topics, by sex, AYA HOPE study
|
Was not told cancer treatment may
affect fertility * |
Health care professional did not discuss
fertility preservation options * |
Did not make arrangements
for fertility preservation * |
|||
|---|---|---|---|---|---|
| Characteristic | Males | Females | Males | Females | Males** |
|
|
|||||
| OR (95% CI) | OR (95% CI) | OR (95% CI) | OR (95% CI) | OR (95% CI) | |
| Race | |||||
| White | Ref | Ref | Ref | Ref | Ref |
| Non-White | 0.95 (0.49, 1.87) | 1.94 (0.91, 4.14) | 1.72 (0.92, 3.21) | 1.20 (0.57, 2.52) | 1.15 (0.61, 2.18) |
| Raising child(ren) under 18 | |||||
| No | Ref | Ref | Ref | Ref | Ref |
| Yes | 1.92 (0.93, 3.96) | 0.63 (0.26, 1.53) | 2.45 (1.24, 4.85) | 3.38 (1.43, 8.02) | 3.53 (1.63, 7.65) |
| Treatment fertility risk level | |||||
| Intermediate/High | Ref | Ref | Ref | Ref | Ref |
| None/Low | 2.12(0.91, 4.95) | 0.62 (0.21, 1.86) | 3.39 (1.60, 7.16) | 0.64 (0.23, 1.78) | 1.73 (0.74, 4.04) |
| Unknown | 2.73 (1.09, 6.86) | 2.21 (0.69, 7.09) | 1.57 (0.65, 3.82) | 0.94 (0.29, 3.06) | 0.68 (0.30, 1.54) |
| At least one provider was a medical oncologist |
|||||
| Yes | Ref | Ref | Ref | Ref | Ref |
| No | 2.28 (1.03, 5.00) | 1.48 (0.43, 5.10) | 1.01 (0.47, 2.16) | 0.42 (0.11, 1.52) | 2.04 (0.99, 4.22) |
| Health insurance at diagnosis | |||||
| Private/HMO/IPA | Ref | Ref | Ref | Ref | Ref |
| Government/Uninsured | 0.72 (0.31, 1.67) | 2.37 (0.87, 6.44) | 2.91 (1.41, 5.97) | 5.46 (1.59, 18.72) | 2.97 (1.16, 7.63) |
| Diagnosis year | Ref | Ref | |||
| 2007 | Ref | Ref | Ref | ||
| 2008 | 0.62 (0.37, 1.18) | 0.47 (0.21, 1.05) | 0.43 (0.20, 0.80) | 0.36 (0.15, 0.85) | 0.64 (0.33, 1.25) |
| Educational attainment | |||||
| College degree or higher | Ref | Ref | Ref | Ref | Ref |
| Less than college degree | 1.32 (0.63, 2.70) | 1.21 (0.49, 2.94) | 1.28 (0.63, 2.58) | 1.45 (0.61, 3.48) | 1.98 (1.00, 3.97) |
ORs (odds ratios) and CIs (confidence intervals) were estimated using logistic regression models containing terms for all of the characteristics shown in the table, as well as age at diagnosis.
Too few women made fertility preservation arrangements to report stratified results
Females
Overall, 74% of females reported being told that cancer therapy might affect fertility (Table 2). Females who were younger at diagnosis, diagnosed in 2007, of Hispanic ethnicity or non-Hispanic Black, with less than a college degree, with no medical oncologist provider, and who had government insurance were less likely to be told that cancer therapy might affect fertility. In multivariable analyses, non-White women were non-significantly almost two times as likely to respond that they were not told that cancer therapy may affect fertility ([OR] = 1.94, [95% CI] = 0.91, 4.14) compared to White women (Table 3).
Fertility Discussions: Preservation Options Before Treatment
Males
Overall, 29% of males reported not discussing fertility preservation prior to starting cancer treatment (Table 2). Two-thirds of AYAs who were Black or “other” race reported that options were not discussed. Few men with GCT, sarcoma, or ALL (<14%) said options were not discussed, compared to nearly 30% or higher of ALL, NHL, and HL patients. For those diagnosed in 2007, 58% of men reported that options were discussed, compared to 77% in 2008.
In multivariable analyses (Table 3), male AYAs raising children were more likely than those without children to not discuss options ([OR] = 2.45; [95%CI] = 1.24, 4.85). Males with “none/low fertility risk” (versus “intermediate/high risk”) were also more likely to respond that they did not discuss options ([OR] = 3.39; [95%CI] = 1.60, 7.16). Males with no insurance or with government insurance were more likely to not discuss fertility options ([OR] = 2.91; [95%CI] 1.41, 5.97) than those who had private insurance. Males diagnosed in 2008 were less likely to not discuss options than those diagnosed in 2007 ([OR] = 0.43; [95%CI] = 0.20, 0.80).
Females
Overall, 56.3% of females reported not discussing fertility preservation options prior to starting cancer treatment (Table 2). HL patients were the least likely, and ALL patients the most likely, to report not discussing preservation options. Factors associated with being less likely to discuss fertility options included government insurance, diagnosed in 2007, and raising children under 18 years of age.
In multivariable analyses (Table 3), females raising children were more likely to not have discussed fertility preservation options than those without children (OR 3.38; 95%CI 1.43, 8.02). Females without private insurance were more likely to not discuss options than those with private insurance (OR 5.46, 95%CI 1.59, 18.72). Females diagnosed in 2008 were less likely to not discuss options than those diagnosed in 2007 ([OR] = 0.36; [95%CI] = 0.15, 0.85).
Fertility Preservation Arrangements
Males
Overall, 69% of males reported that they did not make fertility preservation arrangements (Table 2). This proportion was similar for Hispanic, non-Hispanic White, and patients reporting races other than Black. None of the 17 Black patients made fertility arrangements. Males raising children or without private insurance were less likely to make fertility preservation arrangements than males not raising children or with private insurance. The percentage of men making arrangements increased by one-third between 2007 and 2008. Making arrangements was less common among men with none/low TFR levels compared to those at intermediate/high TFR (18% vs 31%).
In multivariable analyses (Table 3), men raising children were more likely than those raising children under age 18 not to make arrangements for fertility preservation ([OR]= 3.53; [95%CI] = 1.63, 7.65). Men with less than a college degree were more likely than those with a college degree or higher not to make arrangements ([OR] = 1.98; [95%CI]= 1.00, 3.97).
Females
Overall, 6.8% (12/176) of females made arrangements for fertility preservation. We did not conduct a multivariable analysis of associated factors due to the very small numbers who reported making such arrangements.
Reasons for Not Making Fertility Preservation Arrangements
Of those reporting a reason for not making fertility preservation arrangements, 41% of male AYAs and 52% of female AYA cancer patients reported access reasons, including being unaware of options (18% males; 38% females) and cost issues (26% males; 19% females). About one-third (34%) of male AYAs and one-half (55%) of female AYAs reported health-related reasons, including not wanting to delay treatment (26% males; 38% females), doctor advising against delay of treatment (1% males; 19% females), and worry about the effect of cancer on future offspring (13% males; 17% females). 44% of males and 33% of females reported “personal” reasons, most commonly not wanting biological children (31% males) and thinking they were either too old or too young to have children (19% females).
DISCUSSION
In our US population-based study, >70% of AYA cancer patients reported being told that treatment may affect their fertility. However, male patients were more than twice as likely as female patients to report that fertility preservation options were discussed. Most striking, almost one-third of males reported making arrangements for fertility preservation, 4 to 5 times higher than females. Furthermore, between 2007 and 2008 we saw an increase in the reported discussion of the impact of cancer therapy on fertility and fertility preservation options, among men and women. These differences may reflect increasing physician compliance with American Society of Clinical Oncology recommendations that oncologists discuss the possibility of infertility and offer referral for fertility preservation consultation therapy to with reproductive-age cancer patients.6
Putting these results in context, a previous focus group study of adult 10+ year survivors of childhood cancer (median age at diagnosis 14.5 years (range 13-21 years)) and their parents found that, at diagnosis, survivors and parents were primarily focused on treatment and survival. And, although these patients were much younger in general than our population (median age = 28 years), most reported neither they nor their parents recalled a discussion of fertility until after treatment or with discussions of additional treatment.16 On the other end of the AYA age spectrum, almost three-fourths of young breast cancer patients (mean age =32.9 years at diagnosis) reported discussing fertility issues, although only 51% felt these issues were adequately addressed.11
The sex differences we observed are similar to those reported for receipt of fertility-related information and the use of fertility preservation in 18-45 year-old Swedish cancer survivors from 2003-2007. 13 While 91% of oncologists believed that sperm banking should be discussed with patients at risk of infertility, almost one-half reported that in practice they offered it to less than 25% of these men.10 Almost 50% of physicians in that study cited concerns about costs as a barrier to sperm banking. Among males in our study, 26% reported that cost/insurance coverage was the reason for not making fertility preservation arrangements. Adolescent females diagnosed with cancer expressed interest in fertility preservation, but only 29% reported being willing to delay treatment for 1 month5, slightly lower than the 38% in our survey. Sex differences we and others have observed likely reflect the fact that, at the time our study subjects were diagnosed, oocyte cryopreservation was only available through experimental protocols. Although more options now exist for female patients, they are more complex and costly for women compared to men, and may delay treatment16.
Our findings that race/ethnicity, education, provider type and insurance status are associated with fertility preservation discussions and arrangements in male and female AYAs cancer patients are consistent with other reports of health care disparities in adult women diagnosed with cancer.11-13 Our study extends the prior work with a larger sample size, more recent diagnoses and more cancer types represented. In our study no females and only 15% of males without private insurance arranged for fertility preservation. Additionally, no Black males or females made fertility preservation arrangements. This result is consistent with a survey of women diagnosed with similar cancers in which no African American women reported fertility preservation. 12 Although a recent prospective study found that non-white breast cancer patients were more likely to undergo efforts to maintain their fertility than white women, only one-quarter of the former were Black. 17 Whether the disparities we and others have observed for Black cancer patients are the result of economic, sociocultural, or other differences should be explored in future studies.
We also found that TFR was associated with being told that cancer treatment may affect fertility, discussion of fertility preservation and making arrangements for fertility preservation. Patients with “unknown” and “no/low” risk had a similar likelihood of “not being told” suggesting that these “unknown” risk patients were perceived by their health care providers as being at low/no risk. Research that seeks to clarify the fertility risks of specific cancer therapies will have important implications for improved fertility preservation initiatives.
The principal strengths of our study are that it is population-based, covers multiple U.S. geographic areas, and includes an ethnically-diverse set of male and female patients with five cancers common in the AYA population. There are several important limitations. A relatively low proportion of eligible patients participated in AYA HOPE; however, while participants in this study were more likely to be female and less likely to be of Hispanic or Black race/ethnicity (versus non-Hispanic white) compared to all eligible patients, they did not differ by age, census tract-based measures of education or median family income, or cancer type.14 Our sample size was relatively small; we thus had limited statistical power to identify additional factors associated with fertility preservation outcomes. Finally, study patients completed the fertility preservation questionnaire up to three years following diagnosis, possibly affecting their memories regarding discussions of this topic. However, we believe that it is unlikely that patients would inaccurately recall whether they had made arrangements for fertility preservation.
The access and health-related reasons for not making arrangements for fertility preservation reported by participants in this study further highlight the need for decreased cost, improved insurance coverage, and partnerships between cancer healthcare providers and fertility experts to develop strategies that increase awareness of fertility preservation options and decrease delays in cancer therapy as fertility preservation for AYA cancer patients improves.
Supplementary Material
Acknowledgments of research support for the study
This work was supported by N01PC-2010-00032 (University of Iowa), N01PC-2010-00140 (Cancer Prevention Institute of California), N01PC-2010-00034 (Public Health Institute), N01PC-2010-00035 (University of Southern California), N01PC-2010-00029 (Fred Hutchinson Cancer Research Center), N01PC-2010-00028 (Wayne State University), and N01PC-2010-00030 (Louisiana State University Health Sciences Center) and an NIH training grant (K12HD053984).
Footnotes
Disclaimers: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.
Conflicts of Interest: None
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