Decision‐Making About Reproductive Choices Among Individuals At‐Risk for Huntington's Disease

We explored how individuals at‐risk for HD who have or have not been tested make reproductive decisions and what factors are involved. We interviewed 21 individuals (8 with and 4 without the mutation, and 9 un‐tested) in‐depth for 2 hours each. At‐risk individuals faced a difficult series of dilemmas of whether to: get pregnant and deliver, have fetal testing, have pre‐implantation genetic diagnosis, adopt, or have no children. These individuals weighed competing desires and concerns: their own desires vs. those of spouses vs. broader moral concerns (e.g., to end the disease; and/or follow dictates against abortion) vs. perceptions of the interests of current or future offspring. Quandaries arose of how much and to whom to feel responsible. Some changed their perspectives over time (e.g., first “gambling,” then being more cautious). These data have critical implications for genetic counselors and other health care workers and future research, particularly as more genetic tests become available

Response to “Absence of Conclusive Evidence for the Safety and Efficacy of Gonadotropin‐Releasing Hormone Analogue Treatment in Protecting Against Chemotherapy‐Induced Gonadal Injury”

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/139979/1/onco0613.pd

Disclosures of Huntington disease risk within families: Patterns of decision‐making and implications

Patterns of disclosure of Huntington disease risk and genetic test results among family members are important, but have been underexplored. We interviewed 21 individuals in‐depth—eight mutation‐positive for HD, four mutation‐negative, and nine not tested—for 2 hr each. Within families, critical questions arose of what, when, and to whom to disclose, and what to do post‐disclosure. Interviewees wrestled with dilemmas of what to tell (e.g., suspicions vs. confirmed symptoms; initiation vs. completion of testing; partial vs. indirect information), how to disclose (e.g., planning in advance vs. “blurting out” information in arguments), and whether and how to tell extended family members. Questions arose of when to tell (i.e., to avoid disclosing “too early” or “too late”). Similarities and differences emerged related to types of relationships (e.g., parents telling offspring vs. offspring telling parents vs. siblings telling each other). Individuals often disclosed because of perceived duty to foster the health of their family members, enabling these others to pursue appropriate medical evaluation, if desired. Yet tensions arose because the information could burden these members, who also have rights to remain “in denial” if they wish and not discuss the topic or pursue testing. Post‐disclosure, dilemmas emerged of whether and how much to encourage family members to pursue testing. These data shed important light on critical issues that have received little, if any, attention concerning what, how, and when disclosure occurs, and have key implications for at‐risk individuals, genetic counselors, and other health care workers (HCWs), and for future research. At‐risk individuals would benefit from considering these issues in advance. HCWs need to realize that these decisions are multi‐faceted. Future research can explore whether, when, how, and how often HCWs raise these issues with individuals

Increased usage of special educational services by children born to mothers with systemic lupus erythematosus and antiphospholipid antibodies

Introduction: Surveys of long-term health and developmental outcomes of children born to mothers with systemic lupus erythematosus (SLE) have suggested an increase in learning disabilities among these children. We performed this observational study to investigate the relationship between maternal autoantibodies and antiphospholipid antibody syndrome (APS) in maternal lupus patients and neurocognitive development among their offspring. Methods: SLE mothers with at least one live birth postlupus diagnosis were enrolled. Data on maternal medical/obstetric history and children’s perinatal/ medical history were collected by structured interview and medical record reviews. The primary outcome was requirement for special educational (SE) services, a proxy for developmental delays. Multiple logistic regression modelling was used to examine associations between APS and autoantibodies with SE usage, accounting for SLE disease severity and potential confounders. Results: Data on 38 mothers and 60 offspring were analysed: SE service usage was reported for 15 of 60 (25%) offspring. Maternal APS history was significantly associated with increased use of SE services among offspring, including after adjustment for lupus anticoagulant (LA) positivity and potential confounders (OR 5.5–9.4 for delays age ≥2; p<0.05). The presence of LA, but not other antiphospholipid antibodies, was also associated with increased SE services usage. Conclusions: Maternal APS and LA were independently associated with increased usage of special educational services among offspring of women with SLE.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/108201/1/Lupus Sci Med-2014-Marder-.pdf5

The Peroxisome Proliferator Activated Receptor‐γ Pioglitazone Improves Vascular Function and Decreases Disease Activity in Patients With Rheumatoid Arthritis

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/139088/1/jah3374.pd

Association of Pain Centralization and Patient‐Reported Pain in Active Rheumatoid Arthritis

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/156205/2/acr23994_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/156205/1/acr23994.pd

Association Between Pain Sensitization and Disease Activity in Patients With Rheumatoid Arthritis: A Cross‐Sectional Study

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/141868/1/acr23266.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/141868/2/acr23266_am.pd

Dietary Omega Polyunsaturated Fatty Acid Intake and Patient‐Reported Outcomes in Systemic Lupus Erythematosus: The Michigan Lupus Epidemiology and Surveillance Program

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/155937/1/acr23925_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/155937/2/acr23925.pd

Population-Based Incidence and Prevalence of Systemic Lupus Erythematosus: The Michigan Lupus Epidemiology and Surveillance Program

Objective To estimate the incidence and prevalence of systemic lupus erythematosus (SLE) in a sociodemographically diverse southeastern Michigan source population of 2.4 million people. Methods SLE cases fulfilling the American College of Rheumatology classification criteria (primary case definition) or meeting rheumatologist-judged SLE criteria (secondary definition) and residing in Wayne or Washtenaw Counties during 2002–2004 were included. Case finding was performed from 6 source types, including hospitals and private specialists. Age-standardized rates were computed, and capture–recapture was performed to estimate underascertainment of cases. Results The overall age-adjusted incidence and prevalence (ACR definition) per 100,000 persons were 5.5 (95% confidence interval [95% CI] 5.0–6.1) and 72.8 (95% CI 70.8–74.8). Among females, the incidence was 9.3 per 100,000 persons and the prevalence was 128.7 per 100,000 persons. Only 7 cases were estimated to have been missed by capture–recapture, adjustment for which did not materially affect the rates. SLE prevalence was 2.3-fold higher in black persons than in white persons, and 10-fold higher in females than in males. Among incident cases, the mean ± SD age at diagnosis was 39.3 ± 16.6 years. Black SLE patients had a higher proportion of renal disease and end-stage renal disease (ESRD) (40.5% and 15.3%, respectively) as compared to white SLE patients (18.8% and 4.5%, respectively). Black patients with renal disease were diagnosed as having SLE at younger age than white patients with renal disease (mean ± SD 34.4 ± 14.9 years versus 41.9 ± 21.3 years; P = 0.05). Conclusion SLE prevalence was higher than has been described in most other population-based studies and reached 1 in 537 among black female persons. There were substantial racial disparities in the burden of SLE, with black patients experiencing earlier age at diagnosis, >2-fold increases in SLE incidence and prevalence, and increased proportions of renal disease and progression to ESRD as compared to white patients.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/106579/1/Somers_AandR 2014_MILES SLE inc prev.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/106579/3/license_rdf1611

2020 American College of Rheumatology Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/154675/1/art41191.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/154675/2/art41191_am.pd