Responses to Sexual and Gender Identity Measures in Population-Level Data by Birth Cohort: A Research Note.

The measurement of sexual and gender identity in the United States has been evolving to generate more precise demographic estimates of the population and a better understanding of health and well-being. Younger cohorts of sexual- and gender-diverse adults are endorsing identities outside of the lesbian, gay, bisexual, and transgender (LGBT) labels. Current population-level surveys often include a category such as "something else" without providing further details, and doing so inadequately captures these diverse identities. In this research note, our analysis of the most recent federal data source to incorporate sexual and gender identity measures-the Household Pulse Survey-reveals that younger birth cohorts are more likely to select "something else" for their sexual identity and "none of these" for their gender identity. The observed sexual and gender identity response patterns across birth cohorts underscore the importance of developing and applying new strategies to directly measure sexual- and gender-diverse adults who identify with identities outside of those explicitly captured on surveys. The integration of sexual and gender identity measures in population-level surveys carries broader implications for civil rights and for addressing health inequities and therefore must be responsive to cohort differences in identification.

Cohabitation and Marriage Among Same-Sex Couples in the 2019 ACS and CPS: A Research Note.

Since the 2015 U.S. Supreme Court ruling that marriages of same-sex couples are legal in all states in the union, federal surveys have adapted to the shifting legal climate and included new measures that more directly identify same-sex and different-sex cohabiting and married couples. In this research note comparing the largest and most recent federal surveys-the 2019 American Community Survey and Current Population Survey-we find consistent levels of cohabitation and marriage across surveys. While the vast majority (90%) of different-sex couples were married, we report a more even split in cohabitation and marriage among same-sex couples. Our evaluation of sociodemographic characteristics of married and cohabiting couples indicates that differences were less prominent among same-sex couples than among different-sex couples, suggesting weaker sociodemographic selection into marriage among the former. However, factors affecting same-sex and different-sex couples' decisions to live together and marry may differ because of legal and social climates that still present unique obstacles for same-sex couples. Researchers need to acknowledge these differences in assessments of the implications of marriage for health and well-being.

Measuring Marriage and Cohabitation: Assessing Same-Sex Relationship Status in the Current Population Survey.

Since June 26, 2015, marriages to same-sex couples have been legally recognized across every state in the United States, bringing new challenges to measuring relationship status in surveys. Starting in 2015 for select households and in 2017 for all households, the Current Population Survey (CPS) used a new household roster that directly identified same-sex and different-sex cohabiting and married couples. We gauge how the estimates and characteristics of same-sex couples vary according to old and new roster categories using the 2015/2016 and 2017/2018 CPS. Employing the new roster, we distinguish the sociodemographic characteristics of married and cohabiting same-sex couples. These findings have implications for the measurement of same-sex couples and our understanding of marriage among sexual minorities.

Relationship Quality among Cohabiting versus Married Couples.

Using data from the nationally representative 2010 Married and Cohabiting Couples (MCC) survey of different-sex cohabiting and married couples, we compared the relationship quality of today's cohabitors and marrieds. Consistent with diffusion theory and recent conceptual work on the deinstitutionalization of marriage, we found that the relationship between union type and relationship quality is now bifurcated with direct marrieds reporting the highest relationship quality and cohabitors without marriage plans reporting the lowest marital quality. In the middle were the two largest groups: marrieds who premaritally cohabited and cohabitors with plans to marry. These two groups did not differ in terms of relationship quality. This study adds to the growing literature indicating that the role of cohabitation in the family life course is changing in the contemporary context.

Opioid-Induced Constipation Among Patients with Chronic Noncancer Pain in the United States, Canada, Germany, and the United Kingdom: Laxative Use, Response, and Symptom Burden Over Time.

PURPOSE: Estimate rate of laxative inadequate response (LIR) over time among patients with chronic noncancer pain with opioid-induced constipation (OIC). METHODS: A prospective longitudinal study was conducted in United States, Canada, Germany, and United Kingdom. Patients on opioid therapy for ≥4 weeks for chronic noncancer pain and OIC completed an Internet-based survey at Baseline and Weeks 2, 4, 6, 8, 12, 16, 20, and 24. 1xLIR was defined as sufficient laxative use (≥1 laxative ≥ 4 times in past 2 weeks) and inadequate response (<3 bowel movements or ≥ 1 constipation symptom rated Moderate or greater). 2xLIR was sufficient laxative use of ≥2 laxatives from different drug classes and inadequate response. Descriptive statistics and logistic regressions were performed. RESULTS: 489 patients (62% female; 85% white) completed Baseline; 27% reported no laxative use; 25% had insufficient laxative use; 48% had sufficient laxative use. During follow-up, 21-28% of patients had no or insufficient laxative use. Prevalence of 1xLIR was 93% at Baseline and ranged from 59-81% across follow-up; 26% met criteria for 2xLIR (follow-up range: 11-20%). CONCLUSIONS: OIC among noncancer pain patients is a persistent and significant condition with varying utilization and response to laxatives thus increasing the ongoing burden of chronic pain. © 2014 Wiley Periodicals, Inc.

Clinical epidemiology and treatment patterns of patients with multicentric Castleman disease: results from two US treatment centres.

Multicentric Castleman disease (MCD) is a rare lymphoproliferative disease with little known about its epidemiology or treatment modalities. Clinical and demographic data of MCD patients identified between 2000 and 2009 were collected from medical records at two United States (US) MCD referral centres. ZIP codes identified patient residences; prevalence and incidence were estimated based on catchment areas. Patient clinical, demographic, and biochemical characteristics, drug therapies and medical utilization were descriptively reported. MCD patients (n = 59) were 61% male, mean age of 53 years (median = 55 years) and 68% Caucasian. Of those with known human immunodeficiency virus (HIV) status (n = 41), 85% (n = 35) were negative, 15% (n = 6) were positive. Most frequent physician-reported symptoms (n = 33) were fatigue (49%, n = 16), fever (39%, n = 13), and night sweats (30%, n = 10). The estimated US 10-year prevalence was 2·4 per million. During first year of follow-up after study entry, the top two systemic therapies (n = 27) were monotherapies: prednisone (33%, n = 9) and rituximab (19%, n = 5). After a follow-up of 2 years, 92% of patients were alive. This study provides new information on MCD population demographics, treatment patterns, and medical utilization; a minimal US period prevalence rate is proposed. Study replication is needed to improve external validity.

Effect of general symptom level, specific adverse events, treatment patterns, and patient characteristics on health-related quality of life in patients with multiple myeloma: results of a European, multicenter cohort study.

PURPOSE: Novel multiple myeloma (MM) therapies have increased patient longevity but are often associated with notable symptom burden. This study quantified the effect of general symptom level, specific symptoms, and treatment-related adverse events (AEs) on MM patients' health-related quality of life (HRQoL). METHODS: The European Organization for Research and Treatment of Cancer (EORTC) generic cancer questionnaire (Quality of Life Questionnaire Core 30) and MM-specific questionnaire (QLQ-MY20) were used in this study to assess patients' HRQoL. Data were collected on sociodemographics, disease and treatment history, and the presence/severity of MM-related symptoms or treatment-related AEs from patients with MM in UK and German centers. Multiple regression analyses were conducted. RESULTS: Of 154 patients (63 % male; mean age, 66.4 years; mean time since diagnosis, 3.7 years; 52 % currently on treatment; and 43 % with ≥ 1 prior MM therapy), 25, 32, 31, and 11 % were severely symptomatic, moderately symptomatic, mildly symptomatic, and asymptomatic, respectively. Fatigue (59 %), bone pain (51 %), sleepiness (36 %), hypoesthesia or paresthesia (33 %), and muscle cramps (31 %) were most commonly reported. Moderate and severe general symptom levels, bone symptoms, depression, and mental status changes were identified as strong determinants of HRQoL. CONCLUSIONS: Severity, type of disease symptoms, and treatment related AEs are important HRQoL determinants in patients with MM, allowing for targeted treatment.

A retrospective study to evaluate the time burden associated with outpatient red blood transfusions indicated for anemia due to concomitantly administered chemotherapy in cancer patients.

PURPOSE: Anemia in cancer patients can be treated with red blood cell (RBC) transfusions. The patient burden associated with a treatment in terms of total time spent is an important factor to consider when measuring the benefits and challenges of a therapy. This study estimates the time-related patient burden associated with outpatient RBC transfusion. METHODS: A retrospective chart review of outpatient cancer patients receiving a RBC transfusion was conducted at 10 US centers. RBC transfusion time was measured as time elapsed from pre- to post-transfusion vital sign assessment and from transfusion start to stop time. Elapsed time from hemoglobin level testing and blood draw for cross-match to transfusion, estimated travel time and distance, and clinical and demographic data were also collected. RESULTS: Data from 110 patients (48.2 % male; mean age 64 ± 12 years) showed that the mean elapsed time between pre- and post-vital sign assessment was 4.2 h (95 % confidence interval (CI), 3.64-4.81) including 3.6 h (95 % CI, 3.0-4.1) on average to receive the actual RBC transfusion treatment. Hemoglobin level testing (mean Hg level, 8.33 g/dL ± 0.67) and blood drawn for cross-match were completed in an average of 31.2 h (95 % CI, 17.0-45.5) and 18.2 h (95 % CI, 12.1-24.2) prior to transfusion, respectively. Patient one-way travel time averaged 30.0 min (95 % CI, 25.9-34.3). CONCLUSIONS: In the US, CIA patients experience an important time burden when being treated with RBC transfusion in addition to the burden already added by chemotherapy.

Visualizing Children's Family Structure.

This visualization illustrates the multidimensionality of family life among U.S. children. The authors used the 2022 Current Population Survey Annual Social and Economic Supplements from the Integrated Public Use Microdata Series to examine the intersection of three family structure domains: number of parents, relationship of child to parent(s), and parental union type. Even as 74 percent of children live with two parents, only 60 percent lived with their two biological or adoptive married parents, and substantial variation was evident in children's family configurations. By focusing on child's relationship to parent, the authors revealed that a minority of children lived with only their stepparent(s). A consideration of parents' parental union status shows that parents within stepfamilies are almost nearly as likely to cohabit than marry. Children not residing with their parents were mostly living with other family members, mainly their grandparents, and these relatives were largely married or single. The results suggest that limiting family structure to one domain conceals its complexity by providing a narrow lens on families.

Pandemic Shortfall in Marriages and Divorces in the United States.

Prior to the coronavirus disease 2019 pandemic, marriage and divorce had been in decline across the United States. As more data are released, evidence mounts that this pattern has persisted, and in some states been magnified, during the pandemic. The authors compared the change in yearly marriage and divorce counts prior to the beginning of the pandemic (change from 2018 to 2019) to estimate an expected number of marriages and divorces for 2020. By computing a P score on the basis of expected and observed marriages and divorces in 2020, the authors determined whether individual states experienced shortfalls or surpluses of marital events. Of the 20 states with available data on marriages, 18 experienced shortfalls (exceptions included Missouri and North Dakota), for an overall sample shortfall of nearly 11 percent. Regarding divorces, 31 of the 35 states with available data also experienced shortfalls (exceptions included Hawaii, Wyoming, Arizona, and Washington), for an overall sample shortfall of 12 percent.

Prepandemic and Pandemic Marriages among Same-Sex and Different-Sex Couples.

Most states experienced declines in marriages during the pandemic, with variation across states. Given that marriages to same-sex couples make up a small share of total marriages, these trends are overwhelmingly representative of marriages of different-sex couples. To test if the decline observed among marriages of different-sex couples is also observed among marriages of same-sex couples, the authors calculated ratios (2020 marriage count divided by 2019 marriage count) for 13 states, disaggregating marriages of same- and different-sex couples. The 13 states selected were the only states in which same-sex marriage administrative data were available. The results reveal disparate effects of the pandemic on marriage counts for same-sex and different-sex couples. For 11 of the states examined, marriages of same-sex couples either did not decline or declined less than marriages of different-sex couples. Further investigation is warranted as more state-level data on same-sex marriage become available.

The International Burden of Migraine Study (IBMS): study design, methodology, and baseline cohort characteristics.

OBJECTIVE: To describe a survey methodology to evaluate headache characteristics and burden and to present baseline characteristics for the international cohort of survey participants. METHODS: A targeted, web-based methodology was used to recruit and survey subjects with migraine in 10 countries. Based on reported symptoms, subjects meeting ICHD-2 criteria for migraine were included; eligible subjects were classified as chronic (≥ 15 headache days per month) or episodic (< 15 headache days per month). Outcomes included sociodemographic and clinical characteristics, resource utilization, disability, health-related quality of life, anxiety, depression and productivity. RESULTS: Of 23,312 survey respondents, 11,897 were eligible and 9715 (81.7%) completed the survey; subjects were 81.5% female; 5.7% (n = 555) had chronic migraine. CONCLUSIONS: This is the first large international cohort of persons with chronic and episodic migraine studied using a web-based approach, a methodology well suited to the study of the burden of migraines.

Marriage and Divorce Decline during the COVID-19 Pandemic: A Case Study of Five States.

The decline in marriage and divorce was evident prior to the coronavirus disease 2019 pandemic, but it remains unknown whether these patterns have persisted during the pandemic. The authors compared monthly marriage and divorce counts for two years prior to the pandemic (2018 and 2019) and during the pandemic for the five states that published monthly vital statistics data for 2020 (Arizona, Florida, Missouri, New Hampshire, and Oregon). All five states witnessed initial declines in marriage. Counts of marriages in Arizona and New Hampshire rebounded. In contrast, marriage shortfalls occurred in Florida, Missouri, and Oregon. In the early pandemic months, divorces initially declined in all five states and rebounded in Arizona. In the remaining four states, divorce shortfalls have occurred. As more data become available, it will be important to acknowledge these state variations in response to the pandemic.

Visualizing 20 Years of Racial-Ethnic Variation in Women's Ages at Sexual Initiation and Family Formation.

This data visualization uses several cycles of the National Survey of Family Growth to compare trends in median ages at first sex, birth, cohabitation, and marriage between 1995 and 2015 across non-Hispanic white, non-Hispanic black, native-born Hispanic, and foreign-born Hispanic women aged 40 to 44 years. Generally, women's ages at first sex declined, ages at first cohabitation remained stable, and ages at marriage and birth increased. However, there were substantial race-ethnicity-nativity differences in the timing and sequencing of women's reproductive and family experiences, and these differences grew over time. These descriptive findings point to the importance of identifying the larger social forces that contribute to differential experiences while underscoring the fundamental problems inherent with defining whites' reproductive and family behaviors as "normal."

Satisfaction and adherence in patients with iron overload receiving iron chelation therapy as assessed by a newly developed patient instrument.

OBJECTIVES: This study assesses satisfaction with iron chelation therapy (ICT) based on a reliable and valid instrument, and explores the relationship between satisfaction and adherence to ICT. METHODS: Patients in the USA and UK completed a new "Satisfaction with ICT" (SICT) instrument consisting of 28 items, three pertaining to adherence. Simple and multivariate regression analyses assessed the relationship between satisfaction with different aspects of ICT and adherence. RESULTS: First assessments of the SICT instrument indicate its validity and reliability. Recommended thresholds for internal consistency, convergent validity, discriminant validity, and floor and ceiling effects were met. A number of variables were identified in the simple linear regression analyses as significant predictors of "never thinking about stopping ICT," a proxy for adherence. These significant variables were entered into the multivariate model to assess the combined factor effects, explaining 42% of the total variance of "never thinking about stopping ICT." A significant and positive relationship was demonstrated between "never thinking about stopping ICT" and age (P = 0.04), Perceived Effectiveness of ICT (P = 0.003), low Burden of ICT (P = 0.002), and low Side Effects of ICT (P = 0.01). CONCLUSIONS: The SICT is a reliable and valid instrument which will be useful in ICT clinical trials. Furthermore, the administration of ICT by slow subcutaneous infusion negatively impacts on satisfaction with ICT which was shown to be a determinant of adherence. This points to the need for new more convenient and less burdensome oral iron chelators to increase adherence, and ultimately to improve patient outcomes.

Validation of an abbreviated Treatment Satisfaction Questionnaire for Medication (TSQM-9) among patients on antihypertensive medications.

BACKGROUND: The 14-item Treatment Satisfaction Questionnaire for Medication (TSQM) Version 1.4 is a reliable and valid instrument to assess patients' satisfaction with medication, providing scores on four scales--side effects, effectiveness, convenience and global satisfaction. In naturalistic studies, administering the TSQM with the side effects domain could provoke the physician to assess the presence or absence of adverse events in a way that is clinically atypical, carrying the potential to interfere with routine medical care. As a result, an abbreviated 9-item TSQM (TSQM-9), derived from the TSQM Version 1.4 but without the five items of the side effects domain was created. In this study, an interactive voice response system (IVRS)-administered TSQM-9 was psychometrically evaluated among patients taking antihypertensive medication. METHODS: A total of 3,387 subjects were invited to participate in the study from an online panel who self-reported taking a prescribed antihypertensive medication. The subjects were asked to complete the IVRS-administered TSQM-9 at the start of the study, along with the modified Morisky scale, and again within 7 to 14 days. Standard psychometric analyses were conducted; including Cronbach's alpha, intraclass correlation coefficients, structural equation modeling, Spearman correlation coefficients and analysis of covariance (ANCOVA). RESULTS: A total of 396 subjects completed all the study procedures. Approximately 50% subjects were male with a good racial/ethnic mix: 58.3% white, 18.9% black, 17.7% Hispanic and 5.1% either Asian or other. There was evidence of construct validity of the TSQM-9 based on the structural equation modeling findings of the observed data fitting the Decisional Balance Model of Treatment Satisfaction even without the side effects domain. TSQM-9 domains had high internal consistency as evident from Cronbach's alpha values of 0.84 and greater. TSQM-9 domains also demonstrated good test-retest reliability with high intraclass correlation coefficients exceeding 0.70. As expected, the TSQM-9 domains were able to differentiate between individuals who were low, medium and high compliers of medication, with moderate to high effect sizes. There was evidence of convergent validity with significant correlations with the medication adherence scale. CONCLUSION: The IVRS-administered TSQM-9 was found to be a reliable and valid measure to assess treatment satisfaction in naturalistic study designs, in which there is potential that the administration of the side effects domain of the TSQM would interfere with routine clinical care.

Iron chelation therapy: clinical effectiveness, economic burden and quality of life in patients with iron overload.

INTRODUCTION: This study of UK patients examines clinical, health-related quality of life (HRQOL) and economic outcomes associated with iron chelation therapy (ICT). Desferrioxamine (DFO) (Desferal; Novartis, Switzerland) and Deferiprone (Ferriprox; Apotex, Canada) are ICTs used to treat iron overload. DFO requires 8-to 12-hour infusions a minimum of five times per week. Deferiprone is administered in an oral daily regimen. Although pharmacologically efficacious, clinical effectiveness of ICT within the real-world setting is yet to be fully elucidated. METHODS: A naturalistic cohort study of 60 patients (beta-thalassaemia, n=40; sickle cell disease, n=14; myelodysplastic syndromes, n=6; 63% female) receiving ICT in four UK treatment centres was conducted. Serum ferritin level data were abstracted from medical charts. Compliance, HRQOL, satisfaction and resource utilisation data were collected from interviews. Maximum ICT costs were estimated using the resource utilisation data associated with DFO. RESULTS: Mean serum ferritin levels, generally, remained elevated despite ICT. Compliance was suboptimal and HRQOL scores were lower than population norms. The total estimated mean weighted annual per-patient cost of DFO treatment was approximately pound19,000. DFO-related equipment, DFO drug, and home healthcare were estimated to account for 43%, 19% and 24% of costs, respectively. Other more minor components of total annual costs were for in-patient infusions, ICT home delivery services and monitoring costs. CONCLUSION: Generally, patients are not achieving target serum ferritin thresholds despite chronic treatment for iron overload. ICT appears to negatively impact HRQOL; compliance with ICT is poor; and, in the case of DFO, treatment costs well exceed the cost of DFO alone. These results suggest that current ICT in the real-world setting is suboptimal with respect to various clinical, HRQOL and economic outcomes.

Counting Marriages in the United States: The Value of County-Level Administrative Data.

Rapid family change has occurred in the United States, but it has not been accurately charted at the local level. Our capacity to understand spatial variation in marriage is hindered by the deterioration and defunding of the U.S. marriage and divorce vital statistics system. While there is easily accessible state-level data, there is no central depository of county-level administrative marriage data preventing researchers from addressing questions about the geographic concentration as well as variation in marriage rates. We compiled 2010 county-level administrative marriage data from over 3000 counties in 49 states. We find there is wide variation in marriage rates within states with marriage rates varying more across states than within states. While the American Community Survey (ACS) is often used to study marriage rates in the U.S., we find that ACS data can only be used to assess local marriage rates for less than one in ten counties. Our findings demonstrate the high level of spatial variation in marriage and the significance of relying on county- rather than state-level marriage rates.

Economic burden of pertussis and the impact of immunization.

Although routine use of vaccines has diminished the incidence of pertussis disease, it has not eliminated the pathogen. Epidemiologic data confirm that pertussis remains a significant health problem in all age groups. Disease burden is highest in infants, in whom pertussis disease frequently leads to severe complications and mortality, although it is also a significant health burden in adolescents and adults, in whom the reported incidence of pertussis is increasing. The Global Pertussis Initiative reviewed the literature to find data that express the economic impact of this health burden and to review economic evaluations of pertussis immunization. Although only limited data on the direct and indirect costs of pertussis are available, they suggest that it poses a significant economic burden and indicate that the direct medical costs of pertussis depend on the rate of hospitalization and the severity of complications, and are highest in infants. The indirect costs of pertussis also appear to be considerable, particularly among adults, in whom the disease reduces work productivity, because of either personal illness or child care responsibilities. Several health economic models on the cost effectiveness of childhood immunization strategies have been published, and although constrained by missing data, have generally found childhood immunization strategies to be cost-effective. Economic analyses of adolescent and adult immunization strategies have also been conducted, but the findings of these studies have been inconsistent. The most recent evaluations, using much higher estimates of incidence than reported previously, suggest that immunization of adolescents and specific adult subgroups may be cost-effective. The literature review confirmed that the economic burden of pertussis is substantial, but there are gaps in existing information. In the short term, further economic analyses are required, particularly of adolescent and adult immunization. More importantly, collection of primary epidemiologic and economic data should be undertaken in parallel. Despite the existing gaps in data, further research using the most current data should facilitate decisions on new vaccination strategies by describing conditions for favorable results and quantifying the margin of uncertainty.