Economics of Fertility Care.

Family building is a human right. The high cost and lack of insurance coverage associated with fertility treatments in the United States have made treatment inaccessible for many patients. The universal uptake of "add-on" services has further contributed to high out-of-pocket costs. Expansion in access to infertility care has occurred in several states through implementation of insurance mandates, and more employers are offering fertility benefits to attract and retain employees. An understanding of the economic issues shaping fertility should inform future policies aimed at promoting evidence-based practices and improving access to care in the United States.

The #IVF journey: content analysis of IVF videos on TikTok.

RESEARCH QUESTION: What patient populations and outcomes are depicted on IVF videos on the short-form video-sharing application 'TikTok'? DESIGN: This cross-sectional study investigated the 100 most-viewed videos utilizing the #IVF hashtag on TikTok. Only videos in English or Spanish were included in the analysis. An automated web-scraping platform was used to extract information from these videos. Standardized video coding was used to evaluate the featured subject(s), phase of care and IVF outcomes from the videos. RESULTS: Videos meeting the inclusion criteria (n=93) had 731 million views, 91 million likes and 893,000 shares. Patients' personal stories about IVF are over-represented relative to videos created by healthcare professionals. #IVF videos popular on TikTok disproportionately depict same-sex couples (38.1%), gestational carriers (14.0%), multiple gestations (60.0%) and live births (89.3%) relative to real-world data. Among the videos making scientific claims (n=16), nearly all were moderately to highly accurate (93.8%). Most videos had a positive (55.9%) or neutral (5.5%) tone towards IVF. CONCLUSIONS: Popular #IVF videos on TikTok contribute to public discourse about infertility, and highlight demographics that have traditionally been under-represented in health care. Videos rarely focused on health education or made informational claims, with low scores on measures of quality of information and actionability. This gap represents an opportunity for health providers and educators to create more engaging and educational content to reach patients considering IVF.

A Geospatial Analysis of Disparities in Access to Oncofertility Services.

Importance: Fertility preservation (FP), including oocyte and embryo cryopreservation prior to gonadotoxic therapy, is an urgent and essential component of comprehensive cancer care. Geographic proximity to a center offering FP is a critical component of ensuring equitable access for people with cancer desiring future fertility. Objective: To characterize the distribution of centers offering FP services in the US, quantify the number of self-identified reproductive-age female individuals living outside of geographically accessible areas, and investigate the association between geographic access and state FP mandates. Design, Setting, and Participants: This cross-sectional analysis calculated 2-hour travel time isochrone maps for each center based on latitude and longitude coordinates. Population-based geospatial analysis in the US was used in this study. Fertility clinics identified through the 2018 Centers for Disease Control and Prevention Fertility Clinic Success Rates Report were defined as oncofertility centers by meeting 4 criteria: (1) offered oocyte and embryo cryopreservation, (2) performed at least 1 FP cycle in 2018, (3) served people without partners, and (4) had an accredited laboratory. County-level data were obtained from the 2020 US Census, with the primary at-risk population identified as reproductive-age female individuals aged 15 years to 44 years. The analysis was performed from 2021 to 2022. Exposures: Location outside of 2-hour travel time isochrone of an oncofertility center. Main Outcomes and Measures: Oncofertility centers were compared with centers not meeting criteria and were classified by US region, state FP mandate status, number of assisted reproductive technology cycles performed, and number of FP cycles performed. The number and percentage of at-risk patients, defined as those living outside of accessible service areas by state, were identified. Results: Among 456 Centers for Disease Control and Prevention-reporting fertility clinics, 86 (18.9%) did not meet the criteria as an oncofertility center. A total of 3.63 million (5.70%) reproductive-age female individuals lack geographic access to an oncofertility center. States with FP mandates have the highest rates of eligible female patients with geographic access (98.54%), while states without active or pending legislation have the lowest rates (79.57%). The greatest disparities in geographic access to care are most concentrated in the Mountain West and West North Central regions. Conclusions and Relevance: Patients face numerous barriers to comprehensive cancer care, including a lack of geographic access to centers capable of offering FP services. This cross-sectional study identified disparities in geographic access and potential opportunities for strategic expansion.

Direct-to-consumer fertility testing: utilization and perceived utility among fertility patients and reproductive endocrinologists.

RESEARCH QUESTION: What is the utilization of direct-to-consumer fertility tests (DTCFT) among fertility patients? How does the perceived utility of DTCFT differ between patients and reproductive endocrinologists (REI)? DESIGN: Infertility patients visiting the Duke Fertility Center between December 2020 and December 2021 were sent an electronic invitation to participate in a patient survey. Members of the Society of Reproductive Endocrinology and Infertility were also sent e-mail invitations to participate in the REI survey. DTCFT were defined as tests not ordered by a physician or performed at a physician's office, including calendar methods of ovulation prediction, urinary ovulation prediction kits, basal body temperature (BBT) monitoring, hormone analysis, ovarian reserve testing and semen analysis. Patients and REI were asked how likely they were to recommend a given DTCFT, on a 0-10 Likert scale. RESULTS: In total, 425 patients (response rate 50.5%) and 178 REI (response rate 21.4%) completed the surveys. Patients reported the utilization of calendar methods of ovulation prediction (83.8%), urinary ovulation prediction (78.8%), BBT monitoring (30.8%), hormone analysis (15.3%), semen analysis (10.1%) and ovarian reserve testing (9.2%). REI rated the utility of all DTCFT significantly lower than patients did (average discordance -4.2, P < 0.001), except for urinary ovulation prediction, which REI gave a significantly higher score (discordance +1.0, P < 0.001). Prior pregnancy was significantly associated with home ovulation prediction utilization among patients (adjusted odds ratio 3.21, 95% confidence interval 1.2-9.83). CONCLUSIONS: Methods of ovulation prediction are commonly used by fertility patients. Significant discordance exists in the perceived utility of DTCFT between patients and REI. Patient education and guidelines are needed to better inform individuals considering DTCFT.

Diversity and transparency in gynecologic oncology clinical trials.

PURPOSE: Clinical trials advance the standard of care for patients. Patients enrolled in trials should represent the population who would benefit from the intervention in clinical practice. The aim of this study was to assess whether clinical trials enrolling patients with gynecologic cancers report racial and ethnic participant composition and to examine the level of diversity in clinical trials. METHODS: Using ClinicalTrials.gov, we identified clinical trials enrolling patients with ovarian, uterine/endometrial, cervical, vaginal, and vulvar cancers from 1988 to 2019. Race and ethnicity data were extracted from participant demographics. Descriptive statistics on race, ethnicity, cancer type, location, study status, and sponsor type were calculated. Among trials which reported race and/or ethnicity, sub-analyses were performed on composition of race and ethnicity by funding source, location, and completed study status. RESULTS: A total of 1,882 trials met inclusion criteria; only 179 trials (9.5%) reported race information. Of these, the racial distribution of enrollees was 66.9% White, 8.6% Asian, 8.5% Black/African American, 0.4% Indian/Alaskan Native, 0.1% Native Hawaiian/Pacific Islander, 1.0% more than one race, and 14.5% unknown. Only 100 (5.3%) trials reported ethnicity. Except for trials enrolling patients with cervical cancer which enrolled 65.2% White and 62.1% Non-Hispanic/Latino/a patients, enrollees in trials for other gynecologic cancers were over 80% White and 88% Non-Hispanic/Latino/a. Industry funded trials enrolled higher proportions of White (68.4%) participants than non-industry funded trials (57.5%). Domestic trials report race (11.5%) and ethnicity (7.6%) at higher rates than international trials (6.9% and 2.3%, respectively). Reporting of race (1.7% vs. 13.9%) and ethnicity (1.7% vs. 11.1%) has increased over time for patients enrolled in 2000 vs. 2018. CONCLUSION: Less than 10% of trials enrolling patients with gynecologic malignancies report racial/ethnic participant composition on ClinicalTrials.gov. Accurate reporting of participant race/ethnicity is imperative to ensuring minority representation in clinical trials.

Impact of in vitro fertilization state mandates for third party insurance coverage in the United States: a review and critical assessment.

The American Society for Reproductive Medicine estimates that fewer than a quarter of infertile couples have sufficient access to infertility care. Insurers in the United States (US) have long considered infertility to be a socially constructed condition, and thus in-vitro fertilization (IVF) an elective intervention. As a result, IVF is cost prohibitive for many patients in the US. State infertility insurance mandates are a crucial mechanism for expanding access to fertility care in the US in the absence of federal legislation. The first state insurance mandate for third party coverage of infertility services was passed by West Virginia in 1977, and Maryland passed the country's first IVF mandate in 1985. To date, twenty states have passed legislation requiring insurers to cover or offer coverage for the diagnosis and treatment of infertility. Ten states currently have "comprehensive" IVF mandates, meaning they require third party coverage for IVF with minimal restrictions to patient eligibility, exemptions, and lifetime limits. Several studies analyzing the impact of infertility and IVF mandates have been published in the past 20 years. In this review, we characterize and contextualize the existing evidence of the impact of state insurance mandates on access to infertility treatment, IVF practice patterns, and reproductive outcomes. Furthermore, we summarize the arguments in favor of insurance coverage for infertility care and assess the limitations of state insurance mandates as a strategy for increasing access to infertility treatment. State mandates play a key role in the promotion of evidence-based practices and represent an essential and impactful strategy for the advancement of gender equality and reproductive rights.

Impact of comprehensive state insurance mandates on in vitro fertilization utilization, embryo transfer practices, and outcomes in the United States.

BACKGROUND: Previous studies have demonstrated that state mandated coverage of in vitro fertilization may be associated with increased utilization, fewer embryos per transfer, and lower multiple birth rates, but also lower overall live birth rates. Given new legislation and the delay between enactment and effect, a revisit of this analysis is warranted. OBJECTIVE: This study aimed to characterize the current impact of comprehensive state in vitro fertilization insurance mandates on in vitro fertilization utilization, live birth rates, multiple birth rates, and embryo transfer practices. STUDY DESIGN: We conducted a retrospective cohort study of in vitro fertilization cycles reported by the 2018 Centers for Disease Control and Prevention Assisted Reproductive Technology Fertility Clinic Success Rates Report in the United States. In vitro fertilization cycles were stratified according to state mandate as follows: comprehensive (providing coverage for in vitro fertilization with minimal restrictions) and noncomprehensive. The United States census estimates for 2018 were used to calculate the number of reproductive-aged women in each state. Outcomes of interest (stratified by state mandate status) included utilization rate of in vitro fertilization per 1000 women aged 25 to 44 years, live birth rate, multiple birth rate, number of embryo transfer procedures (overall and subdivided by fresh vs frozen cycles), and percentage of transfers performed with frozen embryos. Additional subanalyzes were performed with stratification of outcomes by patient age group. RESULTS: In 2018, 134,997 in vitro fertilization cycles from 456 clinics were reported. Six states had comprehensive mandates; 32,029 and 102,968 cycles were performed in states with and without comprehensive in vitro fertilization mandates, respectively. In vitro fertilization utilization in states with comprehensive mandates was 132% higher than in noncomprehensive states after age adjustment; increased utilization was observed regardless of age stratification. Live birth rate per cycle was significantly higher in states with comprehensive mandates (35.4% vs 33.4%; P<.001), especially among older age groups. Multiple birth rate as a percentage of all births was significantly lower in states with comprehensive mandates (10.2% vs 13.8%; P<.001), especially among younger patients. Mean number of embryos per transfer was significantly lower in states with comprehensive mandates (1.30 vs 1.36; P<.001). Significantly fewer frozen transfers were performed as a percentage of all embryo transfers in states with comprehensive mandates (66.1% vs 76.3%; P<.001). Among fresh embryo transfers, significantly fewer embryos were transferred in comprehensive states among all patients (1.55 vs 1.67; P<.001). CONCLUSION: Comprehensive state mandated insurance coverage for in vitro fertilization services is associated with greater utilization of these services, fewer embryos per transfer, fewer frozen embryo transfers, lower multiple birth rates, and higher live birth rates. These findings have important public health implications for reproductive-aged individuals in the United States and present notable opportunities for research on access to fertility care.

Innovations in infertility: a comprehensive analysis of the ClinicalTrials.gov database.

OBJECTIVE: To characterize the interventional clinical trials in infertility and to assess whether trial location or industry sponsorship was associated with trial noncompletion. DESIGN: Retrospective review of trials registered with ClinicalTrials.gov. SETTING: None. PATIENT(S): None. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Descriptive statistics characterizing the attributes of the clinical trials including intervention type, topic, population, completion status, size, location, sponsor, and results. The effects of the sponsor and trial location on trial noncompletion were assessed via logistic regression. RESULT(S): In total, 505 trials initiated between 2010 and 2020 were included in our analysis. Drug interventions were the most commonly studied (45%); ovarian stimulation trials accounted for 27% of the studies. Live birth was tracked as an outcome by 20% of the studies; 3% of the trials included mental health outcomes. Few trials (15%) enrolled male participants. Only 11% of the trials reported results, and 4% of the trials reported the race or ethnicity of the participants. Most trials (82%) were conducted outside the United States. Overall, 18% of the trials were not completed, most often because of lack of accrual (47%). United States trials had over twice the odds of noncompletion in univariate analysis (odds ratio = 2.48, 95% confidence interval = [1.47, 4.17]); however, this relationship lost significance after adjusting for potential confounders (odds ratio = 0.95, 95% confidence interval = [0.42, 2.14]). Trial sponsorship was not associated with trial noncompletion. CONCLUSION(S): Infertility trials predominantly investigated drug interventions, particularly ovarian stimulation. Live birth was an infrequent outcome despite its relevance to patients. Clinical trials should aim to address the unmet needs in fertility care and be inclusive of underserved populations affected by infertility.

Reproductive Considerations for the LGBTQ+ Community.

When working with LGBTQ+ patients who want to build families, primary care providers play a key role in increasing access to reproductive health care. There is growing demand for assisted reproductive services among LGBTQ+ individuals who do not already have their own children or do not wish to adopt. Fertility-preservation options are available for transgender patients; however, many of these treatments are inaccessible to patients because of lack of insurance coverage and high cost. Legal options for LGBTQ+ patients' reproduction vary by state. Knowledge of the laws and regulations in your own state of practice is necessary to manage expectations.

Financial burden and quality of life among thyroid cancer survivors.

BACKGROUND: Survivors of cancer in the United States are often financially encumbered by expenses and lost wages from cancer treatment. The majority of patients with thyroid cancer are diagnosed before age 65, when they are not eligible for Medicare. We hypothesized that financial distress would be common among thyroid cancer survivors and would be associated with poor health-related quality of life. METHODS: A financial distress questionnaire and Patient-Reported Outcomes Measurement Information System (29-item) were completed online by 1,743 adult thyroid cancer survivors living in the United States. Multivariable modeling was used to identify variables which independently predicted poor health-related quality of life. The magnitude of predicted change was estimated by ß coefficients and 95% confidence intervals. A ß ≥3 was considered clinically significant; α was set at 0.01. RESULTS: Financial difficulties were reported by 43% of thyroid cancer survivors and were associated with worse anxiety (ß = 5.07; P < .01) and depression (ß = 5.47; P < .01). Living in poverty was associated with worse anxiety (ß = 4.14; P < .01) and depression (ß = 4.35; P < .01). Lost productivity at work was associated with worse fatigue (ß = 5.99; P < .01) and social functioning (ß = -4.07; P < .01). Inability to change jobs was associated with worse fatigue (ß = 3.08; P < .01), pain interference (ß = 3.56; P < .01), and social functioning (ß = -3.09; P < .01). Receiving disability benefits was associated with worse pain interference (ß = 3.93; P < .01). Impaired ability to obtain a job was associated with worse social functioning (ß = -3.02; P < .01). Reported unemployment rate was 12.3%. CONCLUSION: Financial distress and negative financial events were common among thyroid cancer survivors and were associated with poorer health-related quality of life across 5 Patient-Reported Outcomes Measurement Information System health domains.

Increasing access to fertility care through private foundations.

OBJECTIVE: To characterize the available support for infertility treatment and populations served by private foundations across the United States. DESIGN: Web-based cross-sectional survey. SETTING: Not applicable. PATIENT(S): Not applicable. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Geographies and populations served, dollar-amount and scope of financial assistance provided by private foundations for individuals seeking financial assistance for infertility treatment. RESULT(S): Thirty-seven private foundations were identified, 25 responded (68% response rate). More than one-half of the foundations had awarded grants to lesbian, gay, and transgender individuals, as well as single men and women. Forty percent of the foundations serve only a single state or geographic region. Foundations have provided 9,996 grants for infertility treatment, 1,740 in 2016 alone, with an average value of $8,191 per grant. The Livestrong foundation has provide more than 90% of these grants, and only to patients with a history of cancer. Twelve percent of foundations provide assistance for fertility preservation in patients with cancer, and 20% provide assistance for elective oocyte cryopreservation. CONCLUSION(S): Private foundations significantly increase access to infertility care for individuals and couples affected by cancer who could otherwise not afford treatment. Significant heterogeneity exists regarding the populations served and the services available for grant support by these foundations, and the landscape of options for patients unaffected by cancer is severely limited.

Post-thyroidectomy neck appearance and impact on quality of life in thyroid cancer survivors.

BACKGROUND: There is a paucity of patient-reported data on thyroidectomy scar perception. The effect of neck scarring on quality of life is not known. We hypothesized that worse perception of neck appearance would be related to worse health-related quality of life and that perception improves with time. METHODS: Survivors of thyroid cancer (n = 1,710) were surveyed online. Respondents were asked to score the appearance of their neck via a 5-point Likert scale. Quality of life was evaluated via the Patient-Reported Outcomes Measurement Information System 29. The relationships between neck appearance, patient characteristics, quality of life, and Patient-Reported Outcomes Measurement Information System domains were analyzed with multivariable models and Spearman partial correlations (rs). RESULTS: Older age was associated with better perception of neck appearance (odds ratio 0.975/year; 95% confidence interval 0.967-0.983; P < .001). Greater time since surgery was also associated with improved perception (odds ratio 0.962/year; 95% confidence interval 0.947-0.977; P < .0001). We observed no statistically significant difference between current and preoperative baseline perception >2 years after surgery. On multivariable analysis, age >45 years, >2 years since surgery, and higher self-reported quality of life were independent predictors of better self-reported neck appearance (P ≤ .0003). In patients ≤2 years after surgery (n = 568), the PROMIS domains of anxiety, depression, social function, and fatigue had weak but statistically significant correlations with worse perception of neck appearance (P < .0001). CONCLUSION: Age >45, >2 years since surgery, and higher quality of life were independently associated with better self-reported neck appearance. Perception of neck appearance returned to preoperative baseline 2 years after surgery. PROMIS domains had a weak but significant association with neck appearance perception in patients ≤2 years after surgery. The impact of post-thyroidectomy neck appearance on quality of life appears to be mild and transient and returns to preoperative levels after 2 years.

Clinical factors associated with worse quality-of-life scores in United States thyroid cancer survivors.

INTRODUCTION: Thyroid cancer survivors are a rapidly growing population in the United States. The factors that drive health-related quality of life (HRQOL) in this population have not been well characterized. We hypothesized that more aggressive treatments and greater treatment-related adverse effects would be associated with worse HRQOL scores in thyroid cancer survivors. METHODS: Thyroid cancer survivors (18-89 years of age) completed an online survey regarding their clinical history in addition to the Patient-Reported Outcomes Measurement Information System (PROMIS) 29 instrument. Univariable and multivariable modeling were performed to evaluate factors associated with worse HRQOL scores. We generated ß-values and 95% confidence intervals to quantify the effect of each independent variable in the model. RESULTS: Thyroid cancer survivors (n = 1,743) reported a high incidence of complications related to surgery and radioactive iodine ablation. Postoperative dysphonia (ß 1.83-3.07) and dysphagia (ß 2.05-3.65) predicted worse HRQOL scores across multiple PROMIS domains. Younger patient age (age <45 years) and short- or long-term complications of radioactive iodine, including gastrointestinal symptoms (51.9%), appetite changes (71.2%), sialadenitis (58.1%), xerostomia (73.3%), and xerophthalmia (45.1%) were associated with worse HRQOL scores (P < .01). CONCLUSION: The factors associated with significantly worse HRQOL scores across multiple PROMIS domains for thyroid cancer survivors included patient age <45 years, postoperative hypocalcemia, dysphonia, dysphagia, scar appearance, and complications from radioactive iodine. Methods of evaluation, management, and prevention of these factors might positively impact HRQOL.

Clinical Outcomes After Unilateral Adrenalectomy for Primary Aldosteronism.

Importance: In addition to biochemical cure, clinical benefits after surgery for primary aldosteronism depend on the magnitude of decrease in blood pressure (BP) and use of antihypertensive medications with a subsequent decreased risk of cardiovascular and/or cerebrovascular morbidity and drug-induced adverse effects. Objective: To evaluate the change in BP and use of antihypertensive medications within an international cohort of patients who recently underwent surgery for primary aldosteronism. Design, Setting, and Participants: A cohort study was conducted across 16 referral medical centers in Europe, the United States, Canada, and Australia. Patients who underwent unilateral adrenalectomy for primary aldosteronism between January 2010 and December 2016 were included. Data analysis was performed from August 2017 to June 2018. Unilateral disease was confirmed using computed tomography, magnetic resonance imaging, and/or adrenal venous sampling. Patients with missing or incomplete preoperative or follow-up data regarding BP or corresponding number of antihypertensive medications were excluded. Main Outcomes and Measures: Clinical success was defined based on postoperative BP and number of antihypertensive medications. Cure was defined as normotension without antihypertensive medications, and clear improvement as normotension with lower or equal use of antihypertensive medications. In patients with preoperative normotensivity, improvement was defined as postoperative normotension with lower antihypertensive use. All other patients were stratified as no clear success because the benefits of surgery were less obvious, mainly owing to postoperative, persistent hypertension. Clinical outcomes were assessed at follow-up closest to 6 months after surgery. Results: On the basis of inclusion and exclusion criteria, a total of 435 patients (84.6%) from a cohort of 514 patients who underwent unilateral adrenalectomy were eligible. Of these patients, 186 (42.3%) were women; mean (SD) age at the time of surgery was 50.7 (11.4) years. Cure was achieved in 118 patients (27.1%), clear improvement in 135 (31.0%), and no clear success in 182 (41.8%). In the subgroup classified as no clear success, 166 patients (91.2%) had postoperative hypertension. However, within this subgroup, the mean (SD) systolic and diastolic BP decreased significantly by 9 (22) mm Hg (P < .001) and 3 (15) mm Hg (P = .04), respectively. Also, the number of antihypertensive medications used decreased from 3 (range, 0-7) to 2 (range, 0-6) (P < .001). Moreover, in 75 of 182 patients (41.2%) within this subgroup, the decrease in systolic BP was 10 mm Hg or greater. Conclusions and Relevance: In this study, for most patients, adrenalectomy was associated with a postoperative normotensive state and reduction of antihypertensive medications. Furthermore, a significant proportion of patients with postoperative, persistent hypertension may benefit from adrenalectomy given the observed clinically relevant and significant reduction of BP and antihypertensive medications.

Benchmarking health-related quality of life in thyroid cancer versus other cancers and United States normative data.

BACKGROUND: Thyroid cancer survivors may experience long-lasting physical, psychosocial, and financial challenges. No previous studies have compared health-related quality of life in thyroid cancer survivors to United States normative data and patient-reported outcomes from other types of cancers. We hypothesized that thyroid cancer survivors would report health-related quality of life poorer than the general United States population but similar to individuals with other cancers. METHODS: Thyroid cancer survivors were recruited online January2017-June 2017. Individuals completed a two-part questionnaire to assess clinical characteristics and health-related quality of life, using the Patient-Reported Outcomes Measurement Information System 29-item profile. Patient-Reported Outcomes Measurement Information System T-scores obtained from the literature were compared with United States normative data and T-scores from patients with breast, prostate, uterine, cervical, colorectal, non-Hodgkin lymphoma, and lung cancers. RESULTS: A total of 1,743 US respondents completed the survey. Thyroid cancer survivors reported statistically significantly worse health-related quality of life across all seven Patient-Reported Outcomes Measurement Information System domains compared with United States normative data (P < .05). Surveyed individuals reported statistically significantly worse scores for anxiety, depression, fatigue, and sleep disturbance than respondents from non-Hodgkin lymphoma, breast, colorectal, uterine, and prostate cancer cohorts (P < .01) but less pain and greater physical functioning than most other groups in this comparison (P < .01). CONCLUSION: The importance of health-related quality of life among thyroid cancer survivors should not be obscured by the relatively high survival rate of thyroid cancer compared with other cancers. Our results demonstrate that thyroid cancer survivors may be encumbered with greater psychologic and social burdens than survivors of several cancers that have a worse prognosis.

Quality of life in multiple endocrine neoplasia type 2A compared with normative and disease populations.

BACKGROUND: Patient-reported outcomes are measured in chronic disease states to inform intervention and management decisions while minimizing negative outcomes. We hypothesized that health-related quality of life in patients with multiple endocrine neoplasia type 2A would be worse than the general US population but similar to other chronic diseases. METHODS: Adults ≥18 years with multiple endocrine neoplasia type 2A were recruited to complete the Patient-Reported Outcomes Measurement Information System 29-item questionnaire (n = 45). Scores based on the Patient-Reported Outcomes Measurement Information System T-score metric were compared with the general US population and with cohorts with low back pain, cancer, congestive heart failure, chronic obstructive pulmonary disease, major depressive disorder, rheumatoid arthritis, neuroendocrine tumors, primary hyperparathyroidism, and MEN1. RESULTS: Compared with US normative data, multiple endocrine neoplasia type 2A patients reported worse anxiety (58.2 ± 12.0, P < .0001), depression (55.4 ± 12.0, P < .01), fatigue (61.4 ± 10.8, P < .0001), pain interference (54.0 ± 11.5, P < .05), and sleep disturbance (56.9 ± 2.7, P < .001), as well as significantly lower physical functioning (45.7 ± 9.3, P < .01) and ability to participate in social roles (46.4 ± 9.7, P < .05). Multiple endocrine neoplasia type 2A patients reported greater fatigue than patients with cancer (P < .0001), chronic obstructive pulmonary disease (P = .01), rheumatoid arthritis (P = .0002), neuroendocrine tumors (P = .0007), and primary hyperparathyroidism (P < .0001) but higher physical functioning compared with patients with rheumatoid arthritis (P = .02), low back pain, congestive heart failure, and chronic obstructive pulmonary disease (P < .0001). CONCLUSIONS: This study is the first to use the Patient-Reported Outcomes Measurement Information System to compare patient-reported outcomes between multiple endocrine neoplasia type 2A and other chronic conditions. Individuals with multiple endocrine neoplasia type 2A reported worse health-related quality of life in all 7 domains compared with US normative data. Multiple endocrine neoplasia type 2A patients reported greater fatigue but greater physical function compared with several other conditions. Prospective longitudinal evaluation of patient-reported outcomes in multiple endocrine neoplasia type 2A should be conducted to identify treatments associated with the highest health-related quality of life.