Patients with advanced-stage cancer are receiving increasingly aggressive medical care near death, despite growing concerns that this reflects poor-quality care.
To assess the association of ...aggressive end-of-life care with bereaved family members' perceptions of the quality of end-of-life care and patients' goal attainment.
Interviews with 1146 family members of Medicare patients with advanced-stage lung or colorectal cancer in the Cancer Care Outcomes Research and Surveillance study (a multiregional, prospective, observational study) who died by the end of 2011 (median, 144.5 days after death; interquartile range, 85.0-551.0 days).
Claims-based quality measures of aggressive end-of-life care (ie, intensive care unit ICU admission or repeated hospitalizations or emergency department visits during the last month of life; chemotherapy ≤2 weeks of death; no hospice or ≤3 days of hospice services; and deaths occurring in the hospital).
Family member-reported quality rating of "excellent" for end-of-life care. Secondary outcomes included patients' goal attainment (ie, end-of-life care congruent with patients' wishes and location of death occurred in preferred place).
Of 1146 patients with cancer (median age, 76.0 years interquartile range, 65.0-87.0 years; 55.8% male), bereaved family members reported excellent end-of-life care for 51.3%. Family members reported excellent end-of-life care more often for patients who received hospice care for longer than 3 days (58.8% 352/599) than those who did not receive hospice care or received 3 or fewer days (43.1% 236/547) (adjusted difference, 16.5 percentage points 95% CI, 10.7 to 22.4 percentage points). In contrast, family members of patients admitted to an ICU within 30 days of death reported excellent end-of-life care less often (45.0% 68/151) than those who were not admitted to an ICU within 30 days of death (52.3% 520/995) (adjusted difference, -9.4 percentage points 95% CI, -18.2 to -0.6 percentage points). Similarly, family members of patients who died in the hospital reported excellent end-of-life care less often (42.2% 194/460) than those who did not die in the hospital (57.4% 394/686) (adjusted difference, -17.0 percentage points 95% CI, -22.9 to -11.1 percentage points). Family members of patients who did not receive hospice care or received 3 or fewer days were less likely to report that patients died in their preferred location (40.0% 152/380) than those who received hospice care for longer than 3 days (72.8% 287/394) (adjusted difference, -34.4 percentage points 95% CI, -41.7 to -27.0 percentage points).
Among family members of older patients with fee-for service Medicare who died of lung or colorectal cancer, earlier hospice enrollment, avoidance of ICU admissions within 30 days of death, and death occurring outside the hospital were associated with perceptions of better end-of-life care. These findings are supportive of advance care planning consistent with the preferences of patients.
As autism has gained increased attention in the past few decades, autistic advocates have adopted the phrase “Nothing about us without us,” illustrating the idea that autistic people should be ...centered in all conversations regarding autism. However, in a large portion of autism research, autistic people are still not meaningfully engaged throughout the research process, leading to continued stigma in research through biased methods. Thus, stigma about autism influences not only the content of autism research, but the ways in which neurotypical people conduct research alongside (or without) autistic people, ultimately resulting in less valid conclusions or research that actively harms the autistic community. One way to address this stigma is through involving autistic individuals as equal partners in the research process, such as by including autistic co-interviewers in qualitative studies of autistic people. In this perspectives piece, we will highlight the benefits of participatory research practices within qualitative research. Furthermore, we will outline methods for conducting co-interviews with autistic research partners and share insights from our experiences implementing this practice. We hope this piece provides researchers the practical resources and inspiration to continue working toward decreasing the stigma surrounding autism in research spaces.
High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with ...autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.
Autistic individuals show enhanced perceptual functioning on many behavioral tasks. Neurophysiological evidence also supports the conclusion that autistic individuals utilize perceptual processes to ...a greater extent than neurotypical comparisons to support problem solving and reasoning; however, how atypicalities in early perceptual processing influence subsequent cognitive processes remains to be elucidated. The goals of the present study were to test the relationship between early perceptual and subsequent cognitive event related potentials (ERPs) and their relationship to levels of autism traits. 62 neurotypical adults completed the Autism Spectrum Quotient (AQ) and participated in an ERP task. Path models were compared to test predictive relationships among an early perceptual ERP (the P1 component), a subsequent cognitive ERP (the N400 effect), and the Attention to Detail subscale of the AQ. The size of participants' P1 components was positively correlated with the size of their N400 effect and their Attention to Detail score. Model comparisons supported the model specifying that variation in Attention to Detail scores predicted meaningful differences in participants’ ERP waveforms. The relationship between Attention to Detail scores and the size of the N400 effect was significantly mediated by the size of the P1 effect. This study revealed that neurotypical adults with higher levels of Attention to Detail show larger P1 differences, which, in turn, correspond to larger N400 effects. Findings support the Enhanced Perceptual Functioning model of autism, suggesting that early perceptual processing differences may cascade forward and result in modifications to later cognitive mechanisms.
•Autism traits were predictive of early perceptual ERP responses.•Early perceptual ERP responses were predictive of later cognitive ERP responses.•Relationship between autism traits and N400 was mediated through P1.
HIV-positive women suffer a high burden of mental disorders due in part to gender-based violence (GBV). Comorbid depression and posttraumatic stress disorder (PTSD) are typical psychiatric ...consequences of GBV. Despite attention to the HIV-GBV syndemic, few HIV clinics offer formal mental healthcare. This problem is acute in sub-Saharan Africa, where the world's majority of HIV-positive women live and prevalence of GBV is high.
We conducted a randomized controlled trial at an HIV clinic in Kisumu, Kenya. GBV-affected HIV-positive women with both major depressive disorder (MDD) and PTSD were randomized to 12 sessions of interpersonal psychotherapy (IPT) plus treatment as usual (TAU) or Wait List+TAU. Nonspecialists were trained to deliver IPT inside the clinic. After 3 months, participants were reassessed, and those assigned to Wait List+TAU were given IPT. The primary outcomes were diagnosis of MDD and PTSD (Mini International Neuropsychiatric Interview) at 3 months. Secondary outcomes included symptom measures of depression and PTSD, intimate partner violence (IPV), and disability. A total of 256 participants enrolled between May 2015 and July 2016. At baseline, the mean age of the women in this study was 37 years; 61% reported physical IPV in the past week; 91% reported 2 or more lifetime traumatic events and monthly income was 18USD. Multilevel mixed-effects logistic regression showed that participants randomized to IPT+TAU had lower odds of MDD (odds ratio OR 0.26, 95% CI 0.11 to 0.60, p = 0.002) and lower odds of PTSD (OR 0.35, 0.14 to 0.86, p = 0.02) than controls. IPT+TAU participants had lower odds of MDD-PTSD comorbidity than controls (OR 0.36, 95% CI 0.15 to 0.90, p = 0.03). Linear mixed models were used to assess secondary outcomes: IPT+TAU participants had reduced disability (-6.9 -12.2, -1.5, p = 0.01), and nonsignificantly reduced work absenteeism (-3.35 -6.83, 0.14, p = 0.06); partnered IPT+TAU participants had a reduction of IPV (-2.79 -5.42, -0.16, p = 0.04). Gains were maintained across 6-month follow-up. Treatment group differences were observed only at month 3, the time point at which the groups differed in IPT status (before cross over). Study limitations included 35% attrition inclusive of follow-up assessments, generalizability to populations not in HIV care, and data not collected on TAU resources accessed.
IPT for MDD and PTSD delivered by nonspecialists in the context of HIV care yielded significant improvements in HIV-positive women's mental health, functioning, and GBV (IPV) exposure, compared to controls.
Clinical Trials Identifier NCT02320799.
To determine the geographic accessibility of emergency departments (EDs) with high pediatric readiness by assessing the percentage of US children living within a 30-minute drive time of an ED with ...high pediatric readiness, as defined by collaboratively developed published guidelines.
In this cross-sectional analysis, we examined geographic access to an ED with high pediatric readiness among US children. Pediatric readiness was assessed using the weighted pediatric readiness score (WPRS) of US hospitals based on the 2013 National Pediatric Readiness Project (NPRP) survey. A WPRS of 100 indicates that the ED meets the essential guidelines for pediatric readiness. Using estimated drive time from ZIP code centroids, we determined the proportions of US children living within a 30-minute drive time of an ED with a WPRS of 100 (maximum), 94.3 (90th percentile), and 83.6 (75th percentile).
Although 93.7% of children could travel to any ED within 30 minutes, only 33.7% of children could travel to an ED with a WPRS of 100, 55.3% could travel to an ED with a WPRS at or above the 90th percentile, and 70.2% could travel to an ED with a WPRS at or above the 75th percentile. Among children within a 30-minute drive of an ED with the maximum WPRS, 90.9% lived closer to at least 1 alternative ED with a WPRS below the maximum. Access varied across census divisions, ranging from 14.9% of children in the East South Center to 56.2% in the Mid-Atlantic for EDs scoring a maximum WPRS.
A significant proportion of US children do not have timely access to EDs with high pediatric readiness.
The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four ...Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5-17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety. Previously established United States general population percentiles were applied to interpret PROMIS scores in both studies. Results of logistic regression models showed that parent-reported material hardship was associated with scoring in the moderate-severe range (defined as ≥75th percentile in the general population) on all four PROMIS measures (odds ratios 1.7-2.2). In the second study, the percentage of children with severe scores (defined as ≥95th percentile in the general population) was 30% for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment, indicating a high burden of these problems among autistic children. Few children had scores at or above the autism-specific 95th percentile on these measures (3%-4%), indicating that their scores were similar to other autistic children. The general population and condition-specific percentiles provide two complementary reference points to aid interpretation of PROMIS scores, including corresponding severity categories that are comparable across different PROMIS measures.
Objective
Research comparing psychiatric comorbidities between individuals with avoidant/restrictive food intake disorder (ARFID) and anorexia nervosa (AN) is limited. ARFID often develops in ...childhood, whereas AN typically develops in adolescence or young adulthood. Understanding how age may impact differential psychological comorbidity profiles is important to inform etiological conceptualization, differential diagnosis, and treatment planning. We aimed to compare the lifetime frequency of psychiatric comorbidities and suicidality between females with ARFID (n = 51) and AN (n = 40), investigating the role of age as a covariate.
Method
We used structured interviews to assess the comparative frequency of psychiatric comorbidities/suicidality.
Results
When age was omitted from analyses, females with ARFID had a lower frequency of depressive disorders and suicidality compared to AN. Adjusting for age, only suicidality differed between groups.
Discussion
This is the first study to compare comorbidities in a similar number of individuals with ARFID and AN, and a structured clinical interview to confer ARFID and comorbidities, covarying for age, and the first to compare suicidality. Although suicidality is at least three times less common in ARFID than AN, observed differences in other psychiatric comorbidities may reflect ARFID's relatively younger age of presentation compared to AN.
Public Significance
Our results highlight that, with the exception of suicidality, which was three times less common in ARFID than AN irrespective of age, observed differences in psychiatric comorbidities in clinical practice may reflect ARFID's younger age at clinical presentation compared to AN.
This article is a report of a 2-day workshop, entitled “Social determinants of health and obstetric outcomes,” held during the Society for Maternal-Fetal Medicine 2022 Annual Pregnancy Meeting. ...Participants’ fields of expertise included obstetrics, pediatrics, epidemiology, health services, health equity, community-based research, and systems biology. The Commonwealth Foundation and the Alliance of Innovation on Maternal Health cosponsored the workshop and the Society for Women’s Health Research provided additional support. The workshop included presentations and small group discussions, and its goals were to accomplish the following:1.Review the current evidence on the relationship between social determinants of health and obstetrical outcomes2.Discuss approaches to and research opportunities for the epidemiologic analysis of social determinants of health in obstetrical settings3.Discuss approaches to and research opportunities for measuring how social determinants get biologically embedded to influence health and disease risk4.Discuss approaches to and research opportunities for interventions and strategies to mitigate the detrimental effects of social determinants of health and improve obstetrical outcomes
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