Measuring the Preferences of Homeless Women for Cervical Cancer Screening Interventions: Development of a Best-Worst Scaling Survey.

OBJECTIVE: Despite having multiple risk factors, women experiencing homelessness are screened for cervical cancer at a lower rate than women in the general US population. We report on the design of a stated preference study to assess homeless women's preferences for cervical cancer screening interventions, to inform efforts to overcome this disparity. METHODS: We conducted focus groups with homeless women (n = 8) on cervical cancer screening decisions and analyzed the data using thematic analysis. We applied inclusion criteria to select factors for a stated preference survey: importance to women, relevance to providers, feasibility, and consistency with clinical experience. We conducted pretests (n = 35) to assess survey procedures (functionality, recruitment, administration) and content (understanding, comprehension, wording/language, length). RESULTS: We chose best-worst scaling (BWS)-also known as object scaling-to identify decision-relevant screening intervention factors. We chose an experimental design with 11 "objects" (i.e., factors relevant to women's screening decision) presented in 11 subsets of five objects each. Of 25 objects initially identified, we selected 11 for the BWS instrument: provider-related factors: attitude, familiarity, and gender; setting-related factors: acceptance and cost; procedure-related factors: explanation during visit and timing/convenience of visit; personal fears and barriers: concerns about hygiene, addiction, and delivery/fear of results; and a general factor of feeling overwhelmed. CONCLUSION: Good practices for the development of stated preference surveys include considered assessment of the experimental design that is used and the preference factors that are included, and pretesting of the presentation format. We demonstrate the development of a BWS study of homeless women's cervical cancer screening intervention preferences. Subsequent research will identify screening priorities to inform intervention design.

Parents' choices and rationales for alternative vaccination schedules: a qualitative study.

BACKGROUND: A growing number of parents adopt alternative vaccination schedules for their children. A better understanding of parents' rationales for these choices is needed to guide vaccine decision making. METHODS: We conducted 24 semistructured telephone interviews with parents of 12- to 36-month-olds and analyzed data using an inductive approach. RESULTS: We identified 5 alternative vaccination approaches: "Dr Sears" schedule, shot-limiting approach, selective delay or decline, visit-by-visit decisions, and refusal of all vaccines. Parents who adopted alternative approaches expressed a desire for more control of exposure to vaccine ingredients; vaccine safety, immune system burden, and perceived disease risk were articulated as concerns. CONCLUSIONS: Parents who adopt alternative vaccination schedules can be classified in defined subgroups based on their decision-making approaches, and many describe considered reasons to support their actions. Communications that acknowledge and address those reasons may be better able to engage parents and ultimately enhance the process of decision making about vaccines.

How illness affects family members: a qualitative interview survey.

OBJECTIVE: Spillover effects of illness on family members can be substantial. The objective of this study was to identify the domains of family members' health and well-being that are affected when a relative has a chronic health condition. METHODS: Semi-structured telephone interviews were conducted in February 2012 with 49 individuals whose relatives had any of five chronic health conditions (arthritis, cancer, Alzheimer's disease/dementia, cerebral palsy, and depression), purposively sampled to include different relationships with the ill relative (parent, child, spouse). Subjects were queried on whether and how having an ill relative affected their health and well-being; they were also asked about their caregiving responsibilities and the relative's health. Interview data were analyzed using thematic analysis. RESULTS: Family members in our sample reported experiencing psychological and non-health effects from having an ill relative, and secondarily somatic effects. Effects on emotional health were most commonly reported as psychological spillover; non-health effects frequently included changes in daily activities and provision of caregiving. Spouses of patients reported the broadest range of spillover domains affected and adolescents of ill parents the fewest. Family members reported experiencing effects that were perceived as both positive and negative. CONCLUSIONS: Spillover of illness onto family members encompasses a wide range of domains of health and well-being, extending beyond those included in many existing health-related quality of life measures. Outcomes measurement efforts should be expanded to adequately capture these health and well-being outcomes for analysis, to ensure that the benefits of interventions are accurately estimated and conclusions are valid.

The social determinants of infant mortality and birth outcomes in Western developed nations: a cross-country systematic review.

Infant mortality (IM) and birth outcomes, key population health indicators, have lifelong implications for individuals, and are unequally distributed globally. Even among western industrialized nations, striking cross-country and within-country patterns are evident. We sought to better understand these variations across and within the United States of America (USA) and Western Europe (WE), by conceptualizing a social determinants of IM/birth outcomes framework, and systematically reviewing the empirical literature on hypothesized social determinants (e.g., social policies, neighbourhood deprivation, individual socioeconomic status (SES)) and intermediary determinants (e.g., health behaviours). To date, the evidence suggests that income inequality and social policies (e.g., maternal leave policies) may help to explain cross-country variations in IM/birth outcomes. Within countries, the evidence also supports neighbourhood SES (USA, WE) and income inequality (USA) as social determinants. By contrast, within-country social cohesion/social capital has been underexplored. At the individual level, mixed associations have been found between individual SES, race/ethnicity, and selected intermediary factors (e.g., psychosocial factors) with IM/birth outcomes. Meanwhile, this review identifies several methodological gaps, including the underuse of prospective designs and the presence of residual confounding in a number of studies. Ultimately, addressing such gaps including through novel approaches to strengthen causal inference and implementing both health and non-health policies may reduce inequities in IM/birth outcomes across the western developed world.

Characteristics and predictive value of blood transcriptome signature in males with autism spectrum disorders.

Autism Spectrum Disorders (ASD) is a spectrum of highly heritable neurodevelopmental disorders in which known mutations contribute to disease risk in 20% of cases. Here, we report the results of the largest blood transcriptome study to date that aims to identify differences in 170 ASD cases and 115 age/sex-matched controls and to evaluate the utility of gene expression profiling as a tool to aid in the diagnosis of ASD. The differentially expressed genes were enriched for the neurotrophin signaling, long-term potentiation/depression, and notch signaling pathways. We developed a 55-gene prediction model, using a cross-validation strategy, on a sample cohort of 66 male ASD cases and 33 age-matched male controls (P1). Subsequently, 104 ASD cases and 82 controls were recruited and used as a validation set (P2). This 55-gene expression signature achieved 68% classification accuracy with the validation cohort (area under the receiver operating characteristic curve (AUC): 0.70 [95% confidence interval [CI]: 0.62-0.77]). Not surprisingly, our prediction model that was built and trained with male samples performed well for males (AUC 0.73, 95% CI 0.65-0.82), but not for female samples (AUC 0.51, 95% CI 0.36-0.67). The 55-gene signature also performed robustly when the prediction model was trained with P2 male samples to classify P1 samples (AUC 0.69, 95% CI 0.58-0.80). Our result suggests that the use of blood expression profiling for ASD detection may be feasible. Further study is required to determine the age at which such a test should be deployed, and what genetic characteristics of ASD can be identified.

Developmental screening and parents' written comments: an added dimension to the parents' evaluation of developmental status questionnaire.

OBJECTIVE: The aim of this study was to better understand the utility of using the Parents' Evaluation of Developmental Status (PEDS) in well-child visits by analyzing themes and patterns in parents' written responses on the PEDS form. METHODS: We reviewed a consecutive sample of medical records with PEDS forms for children aged 6 months to 9 years (site 1) and 3 to 5 years (site 2). We recorded the concerns that parents identified in response to the 10 PEDS questions along with demographic information. We then categorized parents' written comments about those concerns according to comment content. We used qualitative and quantitative methods for analysis. RESULTS: We collected 752 PEDS forms. Ninety percent of the parents endorsed at least 1 concern (94.6% on the English forms versus 69.7% on the Spanish forms; P < .001). Parents qualified 27.5% of their concerns with a written comment. In 23.9% of cases in which parents identified a concern and provided a written comment, the content of the comment did not match the question's intent; rates of mismatch were similar for the English and Spanish forms. Among comments regarding behavioral concerns, 12% reflected a misunderstanding of age-appropriate behavior. Medical concerns accounted for 14.1% of the comments; these concerns were more common on English forms (61.3%) than on Spanish forms (1.7%) (P < .08). More than one-fourth of the comments reported behavior or development that was on target or advanced for the child's age. CONCLUSIONS: Parents frequently used the PEDS forms to communicate additional concerns regarding their child or provide positive feedback on their child's progress. The inappropriate developmental expectations, limited health literacy, and culturally distinct comments on the PEDS forms reinforce the importance of using screening tools to enhance the care provided during visits but not to replace patient-provider communication.