Development and evaluation of a list of high-risk inpatient procedures in patients 65 years and older.

BACKGROUND: Inpatient procedures are common and important health events for older Americans. To facilitate surgical outcomes research, we sought to create and evaluate lists of International Classification of Disease, Tenth Revision (ICD-10) codes for high-risk inpatient procedures, defined as having at least a 1% inpatient mortality. METHODS: This retrospective national cohort study analyzes Medicare claims from 2018 for patients 65 years and older undergoing inpatient procedures. Surgical Diagnosis Related Group (DRG) codes in the inpatient claims were used to identify procedures. We identified the primary ICD-10 procedure code for each patient and then compiled all codes with at least a 1% inpatient mortality yielding three separate lists: one list that was blind to elective versus urgent/emergent status, and one each for urgent/emergent and elective procedures. Clinical review by three surgeons was used to remove procedures unlikely to be the proximate cause of mortality. For evaluation, we examined the mortality of each code among fee-for-service Medicare beneficiaries in 2017, 2019, and 2020 to determine how many of these satisfied the 1% mortality criterion. RESULTS: This study included 2,241,419 patients from 2018 undergoing inpatient procedures. The final result included 231 (blind to elective vs urgent/emergent status), 167 (urgent/emergent status), and 119 (elective status) ICD-10 procedure codes for the three lists. Our evaluation from 2017, 2019, and 2020 demonstrated that in our master list, which was blind to elective versus urgent/emergent status, 97.8% of procedures had an inpatient mortality of at least 1%. In our high-risk procedures lists for urgent/emergent and elective procedures, 100% and 94.1% of codes met this requirement. CONCLUSIONS: We developed and evaluated lists of ICD-10 codes representing high-risk procedures in patients 65 years and older. These lists will be powerful tools for researchers studying surgical outcomes.

Long-term Mental Health Trajectories of Injured Military Servicemembers: Comparing Combat to Noncombat Related Injuries.

OBJECTIVE: We sought to quantify the impact of injury characteristics and setting on the development of mental health conditions, comparing combat to noncombat injury mechanisms. BACKGROUND: Due to advances in combat casualty care, military service-members are surviving traumatic injuries at substantial rates. The nature and setting of traumatic injury may influence the development of subsequent mental health disorders more than clinical injury characteristics. METHODS: TRICARE claims data was used to identify servicemembers injured in combat between 2007 and 2011. Controls were servicemembers injured in a noncombat setting matched by age, sex, and injury severity. The rate of development, and time to diagnosis [in days (d)], of 3 common mental health conditions (post-traumatic stress disorder, depression, and anxiety) among combat-injured servicemembers were compared to controls. Risk factors for developing a new mental health condition after traumatic injury were evaluated using multivariable logistic regression that controlled for confounders. RESULTS: There were 3979 combat-injured servicemember and 3979 matched controls. The majority of combat injured servicemembers (n = 2524, 63%) were diagnosed with a new mental health condition during the course of follow-up, compared to 36% (n = 1415) of controls ( P < 0.001). In the adjusted model, those with combat-related injury were significantly more likely to be diagnosed with a new mental health condition [odds ratio (OR): 3.18, [95% confidence interval (CI): 2.88-3.50]]. Junior (OR: 3.33, 95%CI: 2.66-4.17) and senior enlisted (OR: 2.56, 95%CI: 2.07-3.17) servicemem-bers were also at significantly greater risk. CONCLUSIONS: We found significantly higher rates of new mental health conditions among servicemembers injured in combat compared to service-members sustaining injuries in noncombat settings. This indicates that injury mechanism and environment are important drivers of mental health sequelae after trauma.

The Hidden Costs of War: Healthcare Utilization Among Individuals Sustaining Combat-related Trauma (2007-2018).

OBJECTIVE: We sought to evaluate long-term healthcare requirements of American military servicemembers with combat-related injuries. SUMMARY OF BACKGROUND DATA: US military conflicts since 2001 have produced the most combat casualties since Vietnam. Long-term consequences on healthcare utilization and associated costs remain unknown. METHODS: We identified servicemembers who were treated for combat-related injuries between 2007 and 2011. Controls consisted of active-duty servicemembers injured in the civilian sector, without any history of combat-related trauma, matched (1:1) on year of injury, biologic sex injury severity, and age at time of injury. Surveillance was performed through 2018. Total annual healthcare expenditures were evaluated overall and then as expenditures in the first year after injury and for subsequent years. Negative binomial regression was used to identify the adjusted influence of combat injury on healthcare costs. RESULTS: The combat-injured cohort consisted of 3981 individuals and we identified 3979 controls. Total healthcare utilization during the follow-up period resulted in median costs of $142,214 (IQR $61,428, $323,060) per combat-injured servicemember as compared to $50,741 (IQR $26,669, $104,134) among controls. Median expenditures, adjusted for duration of follow-up, for the combat-injured were $45,211 (IQR $18,698, $105,437). In adjusted analysis, overall costs were 30% higher (1.30; 95% confidence interval: 1.23, 1.37) for combat-injured personnel. CONCLUSION: This investigation represents the longest continuous observation of healthcare utilization among individuals after combat injury and the first to assess costs. Expenditures were 30% higher for individuals injured as a result of combat-related trauma when compared to those injured in the civilian sector.

Associations between dementia diagnosis and end-of-life care utilization.

BACKGROUND: Dementia is a leading cause of death for older adults and is more common among persons from racial/ethnic minoritized groups, who also tend to experience more intensive end-of-life care. This retrospective cohort study compared end-of-life care in persons with and without dementia and identified dementia's moderating effects on the relationship between race/ethnicity and end-of-life care. METHODS: Administrative claims data for 463,590 Medicare fee-for-service decedents from 2016 to 2018 were analyzed. Multivariable logistic and linear regression analyses examined the association of dementia with 5 intensive and 2 quality of life-focused measures. Intensity measures included hospital admission, ICU admission, receipt of any of 5 intensive procedures (CPR, mechanical ventilation, intubation, dialysis initiation, and feeding tube insertion), hospital death, and Medicare expenditures (last 30 days of life). Quality of life measures included timely hospice care (>3 days before death) and days at home (last 6 months of life). Models were adjusted for demographic and clinical factors. RESULTS: 54% of Medicare decedents were female, 85% non-Hispanic White, 8% non-Hispanic Black, and 4% Hispanic. Overall, 51% had a dementia diagnosis claim. In adjusted models, decedents with dementia had 16%-29% lower odds of receiving intensive services (AOR hospital death: 0.71, 95% CI: 0.70-0.72; AOR hospital admission: 0.84, 95% CI: 0.83-0.86). Patients with dementia had 45% higher odds of receiving timely hospice (AOR: 1.45, 95% CI: 1.42-1.47), but spent 0.74 fewer days at home (adjusted mean: -0.74, 95% CI: (-0.98)-(-0.49)). Compared to non-Hispanic White individuals, persons from racial/ethnic minoritized groups were more likely to receive intensive services. This effect was more pronounced among persons with dementia. CONCLUSIONS: Although overall dementia was associated with fewer intensive services near death, beneficiaries from racial/ethnic groups minoritized with dementia experienced more intensive service use. Particular attention is needed to ensure care aligns with the needs and preferences of persons with dementia and from racial/ethnic minoritized groups.

Advance Care Planning Experiences Among Sexual and Gender Minority People.

Importance: Advance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people. Objectives: To increase understanding of barriers and facilitators of ACP facing SGM individuals. Design, Setting, and Participants: This mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021. Exposures: Self-identified SGM. Main Outcomes and Measures: The survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly. Results: A total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings. Conclusions and Relevance: This study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Use of Advance Care Planning Codes Among Transgender Medicare Beneficiaries.

Purpose: We examined the use of advance care planning (ACP) among Medicare beneficiaries who were identified as transgender. Methods: This study is a cross-sectional analysis of Medicare claims from 2016 to 2018, comparing ACP visits between transgender and other beneficiaries. Results: Beneficiaries identified as transgender were slightly more likely than those who were dual eligible for Medicaid and Medicare, and the remaining fee-for-service Medicare population, to have received a claim for ACP. However, racial and ethnic differences exist and transgender beneficiaries were more likely to receive an ACP claim from hospice/palliative care clinicians compared with primary care clinicians relative to other beneficiaries. Conclusions: Differences in ACP provision may exacerbate disparities in access to ACP benefits faced by transgender patients.

Practice Billing for Medicare Advance Care Planning Across the USA.

BACKGROUND: Medicare introduced billing codes in 2016 to encourage clinicians to engage in advance care planning (ACP) and promote goal-concordantend-of-life care, but uptake has been modest. While prior research examined individual-level factors in ACP billing, organization-level factors associated with physician practices billing for ACP remain unknown. OBJECTIVE: Examine the role of practices in ACP billing. DESIGN: Retrospective cohort study analyzing 2016-2018 national Medicare data. PARTICIPANTS: A total of 53,926 practices with at least 10 attributed Medicare beneficiaries. MAIN MEASURES: Outcomes were practice-level ACP billing (any use by the practice) and ACP use rate by practice-attributed beneficiaries. Practice characteristics were number of beneficiaries attributed to the practice; percentage of beneficiaries by race, Medicare-Medicaid dual enrollment, sex, and age; practice size; and specialty mix. KEY RESULTS: Fifteen percent of practices billed for ACP. In adjusted models, we found higher odds of ACP billing and higher ACP use rates among practices with more primary care physicians (billing AOR: 10.01, 95%CI: 8.81-11.38 for practices with 75-100% (vs 0) primary care physicians), and those serving more Medicare beneficiaries (billing AOR: 4.55, 95%CI 4.08-5.08 for practices with highest (vs lowest) quintile of beneficiaries), and larger shares of female beneficiaries (billing AOR: 3.06, 95% CI 2.01-4.67 for 75-100% (vs <25%) female ). CONCLUSIONS: Several years after Medicare introduced ACP reimbursements for physicians, relatively few practices bill for ACP. ACP billing was more likely in large practices with a greater percentage of primary care physicians. To increase ACP billing uptake, policymakers and health system leaders might target interventions to larger practices where a small number of physicians already bill for ACP and to specialty practices that serve as the primary source of care for seriously ill patients.

Long-Term Healthcare Expenditures Following Combat-Related Traumatic Brain Injury.

BACKGROUND: Traumatic brain injury (TBI) is one of the most common injuries resulting from U.S. Military engagements since 2001. Long-term consequences in terms of healthcare utilization are unknown. We sought to evaluate healthcare expenditures among U.S. military service members with TBI, as compared to a matched cohort of uninjured individuals. METHODS: We identified service members who were treated for an isolated combat-related TBI between 2007 and 2011. Controls consisted of hospitalized active duty service members, without any history of combat-related injury, matched by age, biologic sex, year of hospitalization, and duration of follow-up. Median total healthcare expenditures over the entire surveillance period represented our primary outcome. Expenditures in the first year (365 days) following injury (hospitalization for controls) and for subsequent years (366th day to last healthcare encounter) were considered secondarily. Negative binomial regression was used to identify the adjusted influence of TBI. RESULTS: The TBI cohort consisted of 634 individuals, and there were 1,268 controls. Healthcare expenditures among those with moderate/severe TBI (median $154,335; interquartile range [IQR] $88,088-$360,977) were significantly higher as compared to individuals with mild TBI (median $113,951; IQR $66,663-$210,014) and controls (median $43,077; IQR $24,403-$83,590; P < .001). Most expenditures were incurred during the first year following injury. CONCLUSION: This investigation represents the first continuous observation of healthcare utilization among individuals with combat-related TBI. Our findings speak to continued consumption of health care well beyond the immediate postinjury period, resulting in total expenditures approximately six to seven times higher than those of service members hospitalized for noncombat-related reasons.

Long-term prescription opioid use among US military service members injured in combat.

INTRODUCTION: During the Global War on Terrorism, many US Military service members sustained injuries with potentially long-lasting functional limitations and chronic pain. We sought to understand the patterns of prescription opioid use among service members injured in combat. METHODS: We queried the Military Health System Data Repository to identify service members injured in combat between 2007 and 2011. Sociodemographics, injury characteristics, treatment information, and costs of care were abstracted for all eligible patients. We surveyed for prescription opioid utilization subsequent to hospital discharge and through 2018. Negative binomial regression was used to identify factors associated with cumulative prescription opioid use. RESULTS: We identified 3,981 service members with combat-related injuries presenting during the study period. The median age was 24 years (interquartile range [IQR], 22-29 years), 98.5% were male, and the median follow-up was 3.3 years. During the study period, 98% (n = 3,910) of patients were prescribed opioids at least once and were prescribed opioids for a median of 29 days (IQR, 9-85 days) per patient-year of follow-up. While nearly all patients (96%; n = 3,157) discontinued use within 6 months, 91% (n = 2,882) were prescribed opioids again after initially discontinuing opioids. Following regression analysis, patients with preinjury opioid exposure, more severe injuries, blast injuries, and enlisted rank had higher cumulative opioid use. Patients who discontinued opioids within 6 months had an unadjusted median total health care cost of US $97,800 (IQR, US $42,364-237,135) compared with US $230,524 (IQR, US $134,387-370,102) among those who did not discontinue opioids within 6 months (p < 0.001). CONCLUSION: Nearly all service members injured in combat were prescribed opioids during treatment, and the vast majority experienced multiple episodes of prescription opioid use. Only 4% of the population met the criteria for sustained prescription opioid use at 6 months following discharge. Early discontinuation may not translate to long-term opioid cessation in this population. LEVEL OF EVIDENCE: Epidemiology study, level III.

Advance care planning among Medicare beneficiaries with dementia undergoing surgery.

IMPORTANCE: Advance care planning (ACP), in which patients or their surrogates discuss goals and preferences for care with physicians, attorneys, friends, and family, is an important approach to help align goals with actual treatment. ACP may be particularly valuable in patients with advanced serious illnesses such as Alzheimer's disease and related dementias (ADRDs) for whom surgery carries significant risks. OBJECTIVE: To determine the frequency, timing, and factors associated with ACP billing in Medicare beneficiaries with ADRD undergoing nontrauma inpatient surgery. DESIGN: This national cohort study analyzes Medicare fee-for-service claims data from 2016 to 2017. All patients had a 6-month lookback and follow-up period. SETTING: National Medicare fee-for-service data. PARTICIPANTS: All patients with ADRD, defined according to the Chronic Conditions Warehouse, undergoing inpatient surgery from July 1, 2016 to June 30, 2017. EXPOSURES: Patient demographics, medical history, and procedural outcomes. MAIN OUTCOME: ACP billing codes from 6 months before to 6 months after admission for inpatient surgery. RESULTS: This study included 289,428 patients with ADRD undergoing surgery, of whom 21,754 (7.5%) had billed ACP within the 6 months before and after surgical admission. In a multivariable analysis, patients of white race, male sex, and residence in the Southern and Midwestern United States were at the highest risk of not receiving ACP. Of all patients who received ACP, 5960 (27.4%) did so before surgery while 12,658 (52.8%) received ACP after surgery. Timing of ACP after surgery was associated with an Elixhauser comorbidity index of 3 or higher (1.23, p = 0.045) and major postoperative complication or death (odds ratio 1.52, p < 0.0001). CONCLUSIONS AND RELEVANCE: Overall ACP billing code use is low among Medicare patients with ADRD undergoing surgery. Billed ACP appears to have a reactive pattern, occurring most commonly after surgery and in association with postoperative mortality and complications. Additional study is warranted to understand barriers to use.

Strategies for spinal surgery reimbursement: bundling in the working-age population.

INTRODUCTION: Bundled payments for spine surgery, which is known for having high overall cost with wide variation, have been previously studied in older adults. However, there has been limited work examining bundled payments in working-age patients. We sought to identify the variation in the cost of spine surgery among working age adults in a large, national insurance claims database. METHODS: We queried the TRICARE claims database for all patients, aged 18-64, undergoing cervical and non-cervical spinal fusion surgery between 2012 and 2014. We calculated the case mix adjusted, price standardized payments for all aspects of care during the 60-, 90-, and 180-day periods post operation. Variation was assessed by stratifying Hospital Referral Regions into quintiles. RESULTS: After adjusting for case mix, there was significant variation in the cost of both cervical ($10,538.23, 60% of first quintile) and non-cervical ($20,155.59, 74%). Relative variation in total cost decreased from 60- to 180-days (63 to 55% and 76 to 69%). Index hospitalization was the primary driver of costs and variation for both cervical (1st-to-5th quintile range: $11,033-$19,960) and non-cervical ($18,565-$36,844) followed by readmissions for cervical ($0-$11,521) and non-cervical ($0-$13,932). Even at the highest quintile, post-acute care remained the lowest contribution to overall cost ($2070 & $2984). CONCLUSIONS: There is wide variation in the cost of spine surgery across the United States for working age adults, driven largely by index procedure and readmissions costs. Our findings suggest that implementing episodes longer than the current 90-day standard would do little to better control cost variation.

Association of Advance Care Planning Visits With Intensity of Health Care for Medicare Beneficiaries With Serious Illness at the End of Life.

Importance: Advance care planning (ACP) is intended to maximize the concordance of preferences with end-of-life (EOL) care and is assumed to lead to less intensive use of health care services. The Centers for Medicare & Medicaid Services began reimbursing clinicians for ACP discussions with patients in 2016. Objective: To determine whether billed ACP visits are associated with intensive use of health care services at EOL. Design Setting and Participants: This prospective patient-level cohort analysis of seriously ill patients included Medicare fee-for-service beneficiaries who met criteria for serious illness from January 1 to December 31, 2016, and died from January 1, 2017, to December 31, 2018. Analyses were completed from November 1, 2020, to March 31, 2021. Main Outcomes and Measures: Five measures of EOL health care services used (inpatient admission, emergency department visit, and/or intensive care unit stay within 30 days of death; in-hospital death; and timing of first hospice bill) and a measure of EOL expenditures. Analyses were adjusted for age, race and ethnicity, sex, Charlson Comorbidity Index, Medicare-Medicaid dual eligibility, and expenditure by hospital referral region (high, medium, or low). The primary exposure was receipt of a billed ACP service classified as none, timely (>1 month before death), or late (first ACP visit ≤1 month before death). Results: Of the 955 777 Medicare beneficiaries who met criteria for serious illness in 2016 and died in 2017 or 2018, 522 737 (54.7%) were women, 764 666 (80.0%) were 75 years or older, and 822 684 (86.1%) were non-Hispanic White individuals. Among the study population, 81 131 (8.5%) had a timely ACP visit, and an additional 22 804 (2.4%) had a late ACP visit. After multivariable adjustment, compared with patients without any billed ACP visit, patients with a timely ACP visit experienced significantly less intensive EOL care on 4 of 5 measures, including in-hospital death (adjusted odds ratio [aOR], 0.85; 95% CI, 0.84-0.87), hospital admission (aOR, 0.84; 95% CI, 0.83-0.85), intensive care unit admission (aOR, 0.87; 95% CI, 0.85-0.88), and emergency department visit (OR, 0.83; 95% CI, 0.82-0.84). Only small or insignificant differences in late hospice use or mean total EOL expenditures were noted. Compared with patients without ACP, patients with late ACP experienced more intensive EOL care, including in-hospital death (aOR, 1.22; 95% CI, 1.19-1.26), hospital admission (aOR, 5.28; 95% CI, 5.07-5.50), intensive care unit admission (aOR, 1.57; 95% CI, 1.53-1.62), and emergency department visit (aOR, 3.87; 95% CI, 3.72-4.02). Conclusions and Relevance: In this cohort study of US Medicare beneficiaries, billed ACP services during the EOL course of patients with serious illness were relatively uncommon, but if they occurred before the last month of life, they were associated with less intensive use of EOL services. Further research on the variables affecting hospice use and expenditures in the EOL period and the differential effect of late ACP is recommended to understand the relative role of ACP in achieving goal-concordant care.

Gaps in the care cascade for screening and treatment of refugees with tuberculosis infection in Middle Tennessee: a retrospective cohort study.

BACKGROUND: Treatment of tuberculosis infection (TBI) in individuals at high risk for tuberculosis (TB) disease is a priority for TB elimination in the US. Newly arrived refugees in Middle Tennessee are screened for TBI, but factors associated with gaps in the TBI care cascade are not well characterized. METHODS: We assessed the TBI care cascade from US entry to completion of treatment for refugees who resettled in Middle Tennessee from 2012 through 2016. We assessed factors associated with treatment initiation and completion using logistic regression models. RESULTS: Of 6776 refugees who completed initial health screening, 1681 (25%) screened positive for TBI, 1208 were eligible for treatment, 690 started treatment, and 432 completed treatment. Male sex (Odds Ratio [OR]: 1.42; 95% Confidence Interval [CI]: 1.06, 1.89) and screening with interferon gamma release assay compared to tuberculin skin test (OR: 2.89; 95% CI: 1.59, 5.27) were associated with increased treatment initiation; living farther away from TB clinic was associated with decreased treatment initiation (OR: 0.91; 95% CI: 0.83, 0.99). Existing diabetes (OR: 7.27; 95% CI: 1.93, 27.30), receipt of influenza vaccination (OR: 1.65; 95% CI: 1.14, 2.40) and region of origin from South-Eastern or Southern Asia (ORSEAsia: 2.30; 95% CI: 1.43, 3.70; ORSAsia: 1.64; 95% CI: 1.02, 2.64) were associated with increased treatment completion. Six refugees developed TB disease after declining (n = 4) or partially completing (n = 2) TBI treatment; none who completed treatment developed TB disease. CONCLUSIONS: We determined gaps in the TBI care cascade among refugees in Middle Tennessee. Further assessment of barriers to treatment initiation and completion and interventions to assist refugees are warranted to improve these gaps and prevent TB disease.

Correlating maternal iodine status with neonatal thyroid function in two hospital populations in Ghana: a multicenter cross-sectional pilot study.

BACKGROUND: Congenital hypothyroidism is a common, yet easily treatable cause of poor growth and intellectual disability. Newborn screening programs play an important role in the early detection and treatment of congenital hypothyroidism. However, an estimated 71% of children are born in countries such as Ghana, which does not have a screening program. Iodine deficiency, a common cause of congenital hypothyroidism, is present in the Ghanaian population. Mild to moderate maternal iodine deficiency may negatively impact cognitive function in children. A structured approach to examine the association between maternal iodine levels and infant thyroid function may have important ramifications on our understanding of congenital hypothyroidism in Ghana. We investigated the hypothesis that maternal iodine deficiency impacts infant thyroid function, using Thyroid Stimulating Hormone (TSH) as a marker of thyroid function. We also explored potential opportunities and barriers to newborn screening for congenital hypothyroidism in Ghana. METHODS: This was a cross-sectional, multicenter pilot study of 250 women and their neonates recruited from post-natal clinics in Accra and Tamale, Ghana. We compared maternal urine iodine concentration and infant TSH, as well as maternal sociodemographic and nutrition information. Regression models were used to model the relationship between variables. RESULTS: Median infant TSH was 4.7 µIU/ml (95% CI: 3.9-5.5) in Accra. In Tamale, the median infant TSH was 3.5 µIU/ml (95%CI: 3.3 to 3.6) (Δ: 1.3 µIU/ml, 95% CI: 0.5-2.1, p = 0.002). Median maternal urine iodine concentrations were 141.0 µg/L (95% CI: 115.7 to 166.3) and 142.5 µg/L (95% CI: 125.1 to 160.0) in Accra and Tamale, respectively (Δ: - 1.5 µIU/ml, 95% CI: - 32.2 - 29.2, p = 0.925). There was a weakly positive correlation between maternal urine iodine and infant TSH (rho 0.1, p = 0.02). Almost one-third (30%) of women in both locations had biochemical evidence of iodine deficiency. Mothers with any formal education were more likely to have higher iodine levels than their counterparts who had no formal education (coefficient 0.31, p = 0.006). CONCLUSIONS: Maternal iodine deficiency is prevalent in Ghana and is correlated to infant thyroid function. We recommend studies with larger sample sizes to assess the true scope of this relationship.

Physical and psychological health in rare cancer survivors.

PURPOSE: Registries provide a unique tool for tracking quality of life in rare cancer survivors, whose survivorship experience is less known than for common cancers. This paper reports on these outcomes in 321 patients enrolled in the Rare Cancer Genetics Registry diagnosed with rare gastrointestinal, genitourinary, gynecologic, sarcoma, head/neck, or hematologic cancers. METHODS: Four outcomes were assessed, reflecting registrants' self-reported physical and mental health, psychological distress, and loneliness. Combining all patients into a single analysis, regression was used to evaluate the association between outcomes and socio-demographic and clinical factors. RESULTS: Median time since diagnosis was 3 years (range 0-9); 69 % were no longer in treatment. Poorer physical health was reported in registrants who were older at diagnosis, unmarried, and still in treatment. Poorer mental status was associated with younger diagnosis age and unmarried status. Psychological distress varied by cancer type and was higher among currently treated and unmarried registrants. Greater loneliness was reported in registrants with gynecological cancers, and those who were less educated or unmarried. The physical and mental health profile of rare cancer survivors is similar to what is reported for common cancers. CONCLUSIONS: Unmarried participants reported poorer outcomes on all measures of quality of life. Furthermore, physical and mental health were not significantly different by cancer type after adjustment for diagnosis age, whether currently in treatment and marital status. Thus, the combined analysis performed here is a useful way to analyze outcomes in less common diseases. Our findings could be valuable in guiding evaluation and intervention for issues impacting quality of life. IMPLICATIONS FOR CANCER SURVIVORS: Rare cancer survivors, particularly those without spousal support, should be monitored for challenges to the physical as well as psychological aspects of quality of life.