Although one of the fastest-growing populations in the USA, Latinx individuals remain underrepresented in research. In this study, we aimed to identify how Latina/Latinx participants of the Environment, Leiomyomas, Latinas, and Adiposity Study (ELLAS) learned about the research study and what motivated them to participate.

Using a standardized survey tool, bilingual staff interviewed participants and asked them, 1) how they heard about ELLAS and 2) to identify and rank their top three reasons for participating in ELLAS.

“Word of mouth” through a friend or relative was the most common method of learning about ELLAS (49.0%), followed by a “community outreach event” (29.3%). The three most common reasons for participating in ELLAS were “to learn more about women’s health” (83.3%), “to receive a free health assessment” (79.4%), and “to contribute to scientific knowledge” (59.5%). Correlation between demographic and socioeconomic characteristics and participant responses indicated that there are different reasons for participation based on these factors.

Community engagement and word of mouth are vital to the successful recruitment of Latina/Latinx participants to research studies. Latinx participants are most motivated to participate by health benefits and health education, as well as altruistic aspects of research studies. Therefore, establishing mutually beneficial relationships within Latinx communities and appealing to motivations for research participation with close attention to the demographics of participants can both expand and allow for targeted recruitment efforts for this underrepresented group in research studies.

Acute Δ9-tetrahydrocannabinol (THC) administration in humans (Lawn etal., 2016) and rats (Silveira, Adams, Morena, Hill, & Winstanley, 2016) has been associated with decreased effort allocation that may explain amotivation during acute cannabis intoxication. To date, however, whether residual effects of cannabis use on effort-based decision-making are present and observable in humans have not yet been determined. The goal of this study was to test whether prolonged cannabis use has residual effects on effort-based decision-making in 24-hr abstinent cannabis using adults.

We evaluated performance on the Effort Expenditure for Reward Task (EEfRT) in 41 adult cannabis users (mean age = 24.63 years, 21 males) and 45 nonusers (mean age = 23.90 years, 19 males). A mixed 2x3x3 ANOVA with age as a covariate was performed to examine the effect of group, probability of winning, and reward amount on EEfRT performance. EEfRT performance was operationalized as % of trials for which the hard (vs. easy) condition was chosen. Pearson’s correlations were conducted to test the relationship between EEfRT performance and measures of cannabis use, anhedonia and motivation.

We found that cannabis users selected hard trials significantly more than nonusers regardless of win probability or reward level. Frequency of cannabis use was positively correlated with amount of % hard trials chosen. There were no significant correlations between % hard trials chosen, self-reported anhedonia, or motivation.

These results suggest that unlike acute effects, residual effects of cannabis following 24 hrs of abstinence are associated with greater effort allocation during effort-based decision-making.

Spinal muscular atrophy (SMA) is a devastating rare disease that affects individuals regardless of ethnicity, gender, and age. The first-approved disease-modifying therapy for SMA, nusinursen, was approved by Health Canada, as well as by American and European regulatory agencies following positive clinical trial outcomes. The trials were conducted in a narrow pediatric population defined by age, severity, and genotype. Broad approval of therapy necessitates close follow-up of potential rare adverse events and effectiveness in the larger real-world population.

The Canadian Neuromuscular Disease Registry (CNDR) undertook an iterative multi-stakeholder process to expand the existing SMA dataset to capture items relevant to patient outcomes in a post-marketing environment. The CNDR SMA expanded registry is a longitudinal, prospective, observational study of patients with SMA in Canada designed to evaluate the safety and effectiveness of novel therapies and provide practical information unattainable in trials.

The consensus expanded dataset includes items that address therapy effectiveness and safety and is collected in a multicenter, prospective, observational study, including SMA patients regardless of therapeutic status. The expanded dataset is aligned with global datasets to facilitate collaboration. Additionally, consensus dataset development aimed to standardize appropriate outcome measures across the network and broader Canadian community. Prospective outcome studies, data use, and analyses are independent of the funding partner.

Prospective outcome data collected will provide results on safety and effectiveness in a post-therapy approval era. These data are essential to inform improvements in care and access to therapy for all SMA patients.

To utilise a community-based participatory approach in the design and implementation of an intervention targeting diet-related health problems on Navajo Nation.

A dual strategy approach of community needs/assets assessment and engagement of cross-sectorial partners in programme design with systematic cyclical feedback for programme modifications.

Navajo Nation, USA.

Navajo families with individuals meeting criteria for programme enrolment. Participant enrolment increased with iterative cycles.

The Navajo Fruit and Vegetable Prescription (FVRx) Programme.

A broad, community-driven and culturally relevant programme design has resulted in a programme able to maintain core programmatic principles, while also allowing for flexible adaptation to changing needs.

Nonadherence is the Achilles heel of effective psychiatric treatment. The meaning of the term “adherence” has evolved over time and is now associated with a variety of definitions and measurement methods. This has resulted in a poorly operationalized and non-standardized term that is often interpreted differently by providers and patients.

This abstract aims to: 1) describe changes in the concept of adherence; 2) present a more comprehensive definition of adherence which recognizes the influence of patient-provider transactions; 3) introduce dynamic adherence, a six-phase model, which incorporates the influence of transactional processes and econometrics on patients’ adherence decisions; and 4) provide recommendations for providers to improve their relationships with patients and in turn, medication adherence.

A review of the scientific mental health literature.

Despite the prevalence, seriousness, and costs associated with medication nonadherence, the construct of adherence remains poorly operationalized and lacks cogent standardization. Drawing from psychiatric research, a dynamic model of medication adherence across six phases is presented.

This model of adherence highlights the importance of the patient-provider relationship and the transactional processes that comprise what is a dynamic developmental system. Dynamic adherence is intended to foster movement toward a more coherent and unified set of definitions and clinical strategies that will provide the potential to more fully elucidate the risk and protective mechanisms impacting adherence, and the subsequent development and refinement of best practices in increasing the odds of stable medication adherence.

The association between parental severe mental illness (SMI) and depression in offspring may be due to genetic liability or adverse environments. We investigated the effect of parental SMI, SES, and adversity on depression in a sample of youth enriched for familial risk of mental illness.

We assessed 217 youth (mean age 11.95, SD 4.14, range 6–24), including 167 (77%) offspring of parents with SMI. We measured exposure to childhood maltreatment and bullying with the Juvenile Victimization Questionnaire (JVQ) and Childhood Experiences of Care and Abuse (CECA) interview.

In total, 13.36% participants reported significant bullying and 40.76% had a history of childhood maltreatment. Rates of bullying and maltreatment were similar in offspring of parents with and without SMI. Maltreatment likelihood increased with decreasing socioeconomic status. Exposure to bullying (OR = 3.11, 95%CI 1.08–8.88, P = 0.03) predicted depression in offspring more strongly than family history of SMI in parents.

Adversity, such as maltreatment and bullying, has a stronger impact on the risk of developing depression than family history of mental illness in parents. These adverse experiences are associated with socioeconomic status rather than parental mental illness.

The authors have not supplied their declaration of competing interest.

Public awareness of ‘red flag’ symptoms for head and neck cancer is low. There is a lack of evidence regarding patient concerns and expectations in consultations for cancer assessment.

This prospective questionnaire study examined the symptoms, concerns and expectations of 250 consecutive patients attending an ‘urgent suspicion of cancer’ clinic at a tertiary referral centre.

The patients’ most frequent responses regarding their concerns were ‘no concerns’ (n = 72, 29 per cent); ‘all symptoms’ were a cause for concern (n = 65, 26 per cent) and ‘neck lump’ was a symptom causing concern (n = 37, 17 per cent). The expectations of patients attending clinic were that they would find out what was wrong with them, followed by having no expectations at all. Overall patient knowledge of red flag symptoms was lacking and their expectations were low.

Patients with non-cancer symptoms are frequently referred with suspected cancer. Patients with red flag symptoms are not aware of their significance and they have low expectations of healthcare.

To evaluate the association between novel pre- and post-operative biomarker levels and 30-day unplanned readmission or mortality after paediatric congenital heart surgery.

Children aged 18 years or younger undergoing congenital heart surgery (n = 162) at Johns Hopkins Hospital from 2010 to 2014 were enrolled in the prospective cohort. Collected novel pre- and post-operative biomarkers include soluble suppression of tumorgenicity 2, galectin-3, N-terminal prohormone of brain natriuretic peptide, and glial fibrillary acidic protein. A model based on clinical variables from the Society of Thoracic Surgery database was developed and evaluated against two augmented models.

Unplanned readmission or mortality within 30 days of cardiac surgery occurred among 21 (13%) children. The clinical model augmented with pre-operative biomarkers demonstrated a statistically significant improvement over the clinical model alone with a receiver-operating characteristics curve of 0.754 (95% confidence interval: 0.65–0.86) compared to 0.617 (95% confidence interval: 0.47–0.76; p-value: 0.012). The clinical model augmented with pre- and post-operative biomarkers demonstrated a significant improvement over the clinical model alone, with a receiver-operating characteristics curve of 0.802 (95% confidence interval: 0.72–0.89; p-value: 0.003).

Novel biomarkers add significant predictive value when assessing the likelihood of unplanned readmission or mortality after paediatric congenital heart surgery. Further exploration of the utility of these novel biomarkers during the pre- or post-operative period to identify early risk of mortality or readmission will aid in determining the clinical utility and application of these biomarkers into routine risk assessment.

Children of parents with mood and psychotic disorders are at elevated risk for a range of behavioral and emotional problems. However, as the usual reporter of psychopathology in children is the parent, reports of early problems in children of parents with mood and psychotic disorders may be biased by the parents' own experience of mental illness and their mental state.

Independent observers rated psychopathology using the Test Observation Form in 378 children and youth between the ages of 4 and 24 (mean = 11.01, s.d. = 4.40) who had a parent with major depressive disorder, bipolar disorder, schizophrenia, or no history of mood and psychotic disorders.

Observed attentional problems were elevated in offspring of parents with major depressive disorder, bipolar disorder and schizophrenia (effect sizes ranging between 0.31 and 0.56). Oppositional behavior and language/thought problems showed variable degrees of elevation (effect sizes 0.17 to 0.57) across the three high-risk groups, with the greatest difficulties observed in offspring of parents with bipolar disorder. Observed anxiety was increased in offspring of parents with major depressive disorder and bipolar disorder (effect sizes 0.19 and 0.25 respectively) but not in offspring of parents with schizophrenia.

Our results suggest that externalizing problems and cognitive and language difficulties may represent a general manifestation of familial risk for mood and psychotic disorders, while anxiety may be a specific marker of liability for mood disorders. Observer assessment may improve early identification of risk and selection of youth who may benefit from targeted prevention.