Creating a postmortem examination decision aid: Suggestions from bereaved parents of a stillborn.

OBJECTIVES: To understand the postmortem decision-making needs and preferences of parents of a stillborn. METHODS: A qualitative content analysis was conducted. Patients who received stillbirth care at the University of Utah in the last 5 years, were 18 years of age or older, and English speakers, were invited to participate via an email and follow-up phone call. Participants were interviewed about their experiences, values, beliefs, decision-making experience regarding the postmortem examinations of their stillborn, and suggestions for how to assist their decision-making needs. RESULTS: Nineteen participants who consented to one or more postmortem examination of their stillborn were interviewed. They expressed needing information, altruism, and/or a belief in science as reasons for consenting. The most common reason for declining was already knowing the stillbirth cause. Recommendations for a decision aid included a description of all stillbirth evaluation options, risks and benefits, and a timeline. CONCLUSION: Participants had a variety of reasons for consenting to or declining postmortem examinations of their stillborn. Recommendations for a decision aid include a full description of each examination, the risks and benefits, and a timeline. PRACTICAL IMPLICATIONS: An example decision aid was created from recommendations, which presents balanced information to help support couple's decision-making.

Understanding the experiences and perspectives of prenatal screening among a diverse cohort.

INTRODUCTION: Rapid advances in prenatal genetic screening technology make it difficult for providers to deliver adequate prenatal counseling. The aim of this study was to understand how prenatal screening educational approaches can meet the needs of patients. METHODS: Qualitative content analysis was conducted on a diverse population who were interviewed to explore their perceived experiences and preferences for prenatal screening educational delivery. RESULTS: Twenty-two women from three US sites were interviewed. Participants were racially/ethnically diverse with 22.7% identifying as Black or African American (n = 5), 40.9% as Hispanic (n = 9), and 4.5% as Pacific Islander (n = 1). Four themes were identified: prenatal screening education, prenatal screening decision-making, return of results, and suggestions for creating a decision aid. Most results were consistent with previous research not targeting a diverse population. DISCUSSION/CONCLUSION: Our results indicate that learning style preferences vary between patients and that current methods are not consistently satisfying patient's desire for understanding, particularly with 'high-risk' results, suggesting that a standardized tool could improve knowledge and decrease decisional conflict. This diverse cohort suggested a list and description of each of the testing options offered, information about each condition being screened for, a timeline for the testing and return of results, costs associated, and non-technical language.

Mixed-methods study examining family carers' perceptions of the relationship between intrahospital transitions and patient readiness for discharge.

INTRODUCTION: Intrahospital transitions (IHTs) represent movements of patients during hospitalisation. While transitions are often clinically necessary, such as a transfer from the emergency department to an intensive care unit, transitions may disrupt care coordination, such as discharge planning. Family carers often serve as liaisons between the patient and healthcare professionals. However, carers frequently experience exclusion from care planning during IHTs, potentially decreasing their awareness of patients' clinical status, postdischarge needs and carer preparation. The purpose of this study was to explore family carers' perceptions about IHTs, patient and carer ratings of patient discharge readiness and carer self-perception of preparation to engage in at home care. METHODS: Sequential, explanatory mixed-methods study involving retrospective analysis of hospital inpatients from a parent study (1R01HS026248; PI Wallace) for whom patient and family carer Readiness for Hospital Discharge Scale (RHDS) score frequency of IHTs and patient and caregiver characteristics were available. Maximum variation sampling was used to recruit a subsample of carers with diverse backgrounds and experiences for the participation in semistructured interviews to understand their views of how IHTs influenced preparation for discharge. RESULTS: Of discharged patients from July 2020 to April 2021, a total of 268 had completed the RHDS and 23 completed the semistructured interviews. Most patients experienced 0-2 IHTs and reported high levels of discharge readiness. During quantitative analysis, no association was found between IHTs and patients' RHDS scores. However, carers' perceptions of patient discharge readiness were negatively associated with increased IHTs. Moreover, non-spouse carers reported lower RHDS scores than spousal carers. During interviews, carers shared barriers experienced during IHTs and discussed the importance of inclusion during discharge care planning. CONCLUSIONS: IHTs often represent disruptive events that may influence carers' understanding of patient readiness for discharge to home and, thus, their own preparation for discharge. Further consideration is needed regarding how to support carers during IHT to facilitate high-quality discharge planning.

Psychometric properties of a brief self-reported health-related quality of life measure (HRQoL-IDD) for persons with intellectual and developmental disabilities.

BACKGROUND: To encourage self-determination and address health disparities among persons with intellectual and developmental disabilities, clinicians and researchers rely on self-reported measures like health-related quality of life (HRQoL). This study evaluated the psychometric properties of a theory-driven self-reported HRQoL measure for adults requiring mild to moderate support related to intellectual and developmental disabilities. METHOD: 224 volunteers completed 42 quality of life items developed with extensive input from persons with intellectual and developmental disabilities, family members/caregivers, and providers. The 5-point Likert scale format with visual images of fluid-filled cups represented the range of responses. RESULTS: Exploratory and Unrestricted Factor Analyses yielded 16 HRQoL items with 4 subscales: Functional Well-Being, Emotional Well-Being, Social Well-Being, and Healthy Decision-making. The HRQoL-IDD explained 62.8% of variance, had satisfactory internal consistency (0.73-0.83), stability of reponses, and reading level (2nd grade, ages 7-8). CONCLUSIONS: The HRQoL-IDD is a promising measure of self-reported HRQoL for use in community-based settings for persons requiring mild to moderate support related to intellectual and developmental disabilities.

Electronic informed consent information for residual newborn specimen research: findings from focus groups with diverse populations.

We developed a video and an app for obtaining consent about allowing newborn blood spots (NBS) to be used as biospecimen resources for biobanking. Newborn screening programs test for treatable diseases and leave residual biospecimens that can be used in future research activities. We conducted focus groups and interviews with three diverse communities to determine (a) how well the consent tools worked and (b) participant familiarity with NBS. Participants preferred the video and noted that they were unaware that NBS could be used for future research. Providing information about how biospecimens could be used was a key issue.

Assessing clinical education tools for expanded carrier screening.

Expanded carrier screening (ECS) is increasingly offered to a broader population and raises challenges of how to best educate and counsel the volume of screened individuals. For this study, we compared three educational tools (brochure, video and comic) about ECS on knowledge and decision making. A convenience online sample of 151 pregnant women was randomized to one of three groups (Video, n = 42; Comic n = 54; Brochure n = 55). Knowledge scores were significantly higher for the comic group compared to the video or the brochure groups (p < .001). No significant differences in preparation for decision making, decisional conflict, or perceptions of shared decision making were identified between the study groups. This study suggests that a comic about ECS may improve patient attention and retention of information. The use of graphic narratives may enable individuals to better understand medical information in general.

The limited use of US residual newborn screening dried bloodspots for health disparity research.

PURPOSE: State-run newborn screening programs screen nearly all babies born in the United States at the time of delivery. After newborn screening has been completed, some states store the residual dried bloodspots. It is unknown how they have been used to address health disparities-related research. METHODS: In 2017-2018, a scoping review was conducted to evaluate the extent, type, and nature of how residual dried bloodspots. The review included 654 eligible publications, worldwide, published before May 2017. A post hoc analysis of the US-based studies using residual dried bloodspots (n = 192) were analyzed. RESULTS: There were 32 (16.7%) articles identified that studied a condition of a known health disparity or focused on a key population: 25 studies assessed a disease or condition, 6 expressly enrolled a key population, and 1 study included both (i.e., heart disease and African American/Black). CONCLUSION: Excluding 12 studies that researched leukemia or a brain tumor, only 20 studies addressed a known health disparity, with 6 stating a specific aim to address a health disparity. This resource could be used to gain further knowledge about health disparities, but is currently underutilized.

Drug exposure opportunities and use patterns among college students: results of a longitudinal prospective cohort study.

Underage drinking and drug use among college students are major public health concerns, yet few studies have examined these behaviors and their associated risk factors and consequences prospectively. This paper describes the sampling and recruitment methods of a longitudinal study of 1253 college students at a large, mid-Atlantic university. Incoming first-year students were screened during the unique window between high school and college in order to oversample drug users for longitudinal follow-up. Intensive recruitment strategies yielded a 95% cumulative response rate in annual interviews and semiannual surveys. The authors report preliminary results on exposure opportunity, lifetime prevalence, initiation, continuation, and cessation of substance use for alcohol, tobacco, and 10 illicit and prescription drugs during the first 2 years of college. Findings suggest that although some substance use represents a continuation of patterns initiated in high school, exposure opportunity and initiation of substance use frequently occur in college. Implications for prevention and early intervention are discussed.

Nonmedical use of prescription stimulants among college students: associations with attention-deficit-hyperactivity disorder and polydrug use.

STUDY OBJECTIVE: To define, among a sample of college students, the nature and extent of nonmedical use of prescription stimulants (NPS), including both overuse and use of someone else's drug, for attention-deficit-hyperactivity disorder (ADHD); to characterize NPS among individuals not medically using a prescription stimulant for ADHD; and to determine whether NPS and overuse of a medically prescribed stimulant for ADHD were independently associated with an increased risk of other illicit drug use and dependence on alcohol and marijuana. DESIGN: Cross-sectional analysis of personal interview data. SETTING: Large public university in the mid-Atlantic region. Participants. A cohort of 1253 first-year college students aged 17-20 years. MEASUREMENTS AND MAIN RESULTS: All students completed a 2-hour personal interview to ascertain medical use and overuse of prescription stimulants, NPS, nonmedical use of other prescription drugs and illicit drug use, and dependence on alcohol and marijuana. Comparisons were made among nonusers, nonmedical users, and medical users of prescription stimulants for ADHD (ADHD+), some of whom overused their drug. Of 1208 students who were not using prescription stimulants medically for ADHD (ADHD-), 218 (18.0%) engaged in NPS. Of 45 ADHD+ students, 12 (26.7%) overused their ADHD drug at least once in their lifetime, and seven (15.6%) nonmedically used someone else's prescription stimulants at least once in their lifetime. Among 225 nonmedical users, NPS was infrequent and mainly associated with studying, although 35 (15.6%) used prescription stimulants to party or to get high. Lifetime NPS was associated with past-year other drug use. Both NPS and overuse of prescribed stimulants for ADHD were independently associated with past-year use of five drugs, holding constant sociodemographic characteristics; NPS was also associated with alcohol and marijuana dependence. CONCLUSIONS: Physicians should be vigilant for possible overuse and/or diversion of prescription stimulants for ADHD among college students who are medical users of these drugs, as well as the occurrence of illicit drug use with NPS. Initiation of comprehensive drug prevention activities that involve parents as well as college personnel is encouraged to raise awareness of NPS and its association with illicit drug use.